The Dangers of Vitamin D Deficiency

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I wrote an article online about the dangers of Vitamin D deficiency and thought it would be fitting for this site. Never try to diagnose yourself. Always see a physician with any questions on Vitamin D Deficiency or any other health issues.

I never realized until I was diagnosed with a serious Vitamin D deficiency what all problems this could cause. My doctor was very concerned because my levels were dangerously low and he immediately put me on a high dose Vitamin D supplement. Some other health problems my doctor told me Vitamin D deficiency could cause include heart disease, chronic pain, Fibromyalgia, hypertension, arthritis, depression, inflammatory bowel disease, obesity, PMS, Crohns Disease, cancer, MS and other autoimmune diseases.

The Vitamin D Council states that Vitamin D deficiency can also cause stroke, osteoporosis, muscle weakness, muscle wasting and birth defects.

The American Society of Anesthesiologists released a report in October of 2007 that stated approximately one in four patients who have chronic pain issues were also found to have low levels of Vitamin D. This was according to a new study that the American Society of Anesthesiologists conducted. Their study also found that those with lower levels of Vitamin D required higher doses of morphine over a longer period of time.

According to the Vitamin D Council, if you are someone who completely avoids the sun you will need to take approximately 4,000 units of Vitamin D per day. You would have to drink 40 glasses of milk a day or take 10 multivitamins a day to get the required amount of Vitamin D. Naturally neither one of these methods is recommended so what are we to do? Many people now fear the sun due to the increasing awareness and prevalence of the deadly skin cancer, Melanoma. The Vitamin D Council says that most people typically make about 20,000 units of Vitamin D after 20 minutes of sun exposure, which is about 100 times more than the daily amount of Vitamin D the FDA says we need. Tanning beds are another option to get the required amounts of Vitamin D also. Personally I will not use a tanning bed or spend excessive amounts of time out in the sun due to fear of skin cancer.

There is another option if you are not a sun worshiper. You can have your physician administer a 25-hydroxyvitamin test to determine if you have optimal levels of Vitamin D in your blood. The Vitamin D Council considers optimum levels to be approximately 50 nM/L. The 25-hydroxyvitamin test measures the amount of calcidiol (a prehormone found in the blood that is produced in the liver). This is considered the most reliable form of testing for Vitamin D deficiency. If this test shows that you are indeed Vitamin D deficient, there is also a supplemental vitamin D3 cholecalciferol you can take.

In order to get the proper amount of Vitamin D your body requires, you need to be able to find a healthy balance of sunlight, but still reduce your risk of skin cancer, particularly Melanoma. Wear sunscreen every time you are in the sun and keep your sun exposure to 20 minutes at a time.

Sources used for this article include:

ImmuneSupport.com – Vitamin D Inadequacy May Exacerbate Chronic Pain

Vitamin D Council – Vitamin D Research and Research Requirements Link

Other Fighting Fatigue articles on Vitamin D Deficiency:

Low Vitamin D Associated With Increased Risk of Death

Vitamin D Deficiency: A Disease of Neglect

Low Vitamin D May Be Harmful to Bones of Those with IBD

Vitamin D & Vitamin D Deficiency Links

Vitamin D Deficiency Tied to Back Pain In Older Women

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Comments

  1. I am low on vitamin D and take Drisdol for 3 mos to correct it and then will move to an over the counter Vitamin D.

    I used to be a sun worshipper and thought I was doing myself a favor (and I am) by staying out of the sun as much as possible this last summer. I couldn’t believe that I was THAT low on Vitamin D.

    This summer I’ll have to work on being more balanced (pace myself – my new word for my life, pace, pace, pace).

  2. I’ve recently heard about this problem, i’ve been diagnosed with fibromyalgia and chronic fatigue syndrome and it has recently flared up once again, this time worse than the last. Any one have any advice?

  3. I have been sick for quite some time and just the other day they told me I have fibromyalgia and inflammatory arthritis. They also mentioned my vitamin d level was 6 and started me on a high dose of vitamin D. They didn’t say any health issues concerning vit d except when I asked them if this is why I’m so achy they said could be..achey really isn’t even the word, severe pain in all my bones its just awful. Couldn’t pick up the script because todays pay day and didn’t have any money but getting it today anyone think I might feel better once I start it?

  4. Hi Jenn, I’m not a dr. but I would think if your level is that low you should get some relief after a while.

  5. Corinne says:

    I had 1/2 of my thyroid removed in 2003 and was told that your thyroid produces calcium. The surgeon told me that if I start to have symptons of tingling hands/feet that I need to get checked. Over a year ago I started with Oral LIchen Planus and was also told that I had the beginnings of fibromyalgia. Mt feet started to ache and I would awaken through the night with muscle fatigue and extremely cold feet. Getting up in the morning was a killer. The pain gradually went into my hips and other areas not to mention the horrible abdominal pains I’m having. I went to a new dr. and was told my vit d is low and I was diagnosed with hypothyroidism through blood work. I’m taking a supplement called bone builders in order to get my body back to normal hopefully. I have felt relief within a few days in my abdomen taking the vitamins and being on thyroid meds. Getting out in the sun more too!

  6. I noticed you suggested using sunscreen when outside. Sunscreen keeps vitamin D from penetrating the skin making the sunlight useless.

  7. I came across your article while looking for info on low Vit D, I was just diagnosed with it. I’ve been sick for 9 years, since I had Lupron shots for endometriosis, passing kidney stones on a monthly basis, and a ton of other problems.
    I don’t know if the Vit D is a cause of the problems I’ve been having, or a symptom of another problem, but I’m getting really scared. My next step is the gastro/internist, colonoscopy scheduled. I’m so tired, I’m taking Vit D tablets per my PCP’s instructions, but so far don’t feel any better, constant fevers, fibro, sore throat, infections, small cyst on head, behind ear, bone pain, osteopenia, MRSA cyst, and too much to list.

  8. lynn,
    I think you need to see a rhumatologist asap, sound like you have still’s disease. I have still’s disease and low d too, but I also had all of the problems you listed above including being hospitalized for mrsa over 6 weeks total last year.

  9. SaharaRN says:

    Hi and good luck to everyone…Like many of you, I came across this site while looking up info about Vitamin D Deficiency. I had a test done about 3 months ago on my sister’s insertion because as a pharmacist she came across some readings about Vitamin D and she was worried it may be what was behind my declining health. I’ve been fighting MS so I haven’t been getting out much,plus, to top it off, when I was working (on temp disability again and hoping to get back) I was a night-shift RN so I was relatively used to living in a night driven world (no sun).
    The first test 3 months ago was “normal” , was about 34, and didn’t think much of it after that. But I’m seeing a new neurologist to try to fight the MS and seek new treatments and he ordered everything under the sun, including a new Vit D test and this time it said it was <4, or in his words “Practically undetectable”. I’m not sure if one test was wrong or if it really dropped in that amount of time. All I know is that I started on 50,000 IU of D today.
    I have severe fatigue (feels like borderline narcolepsy lol, if I focus on anything I have to slap myself and pry my eyes opened), lethargy, weakness, very intense body pain (see a pain specialist and have a Duragesic patch), and I am about to go to Stanford for further testing due to the neurologist thinking I may have a Rheumatological disorder such as a connective tissue disease. The pain and fatigue are biggies. When the weakness and fatigue hits, even after a short activity, BAMM, it’s like hitting a wall. And the pain, ugh! I’ve been experiencing spontaneous tendon ruptures and could keep going on my other symptoms but I should end this so I’ll spare you. I’m glad I’m seeing a new neurologist , he’s not one to “blame” ever new symptom on MS and was willing to listen and realized Wow, there really could be some other things going on here!
    I have a lot going on, including numerous spontaneous tendon ruptures, joint problems, bulging discs in all 3 sections of spine, bone marrow edema in my feet, neurogenic bowel problems, bladder dysfunction, etc. But I haven’t given up yet! And wouldn’t it be nice if the Vitamin D would make me feel even a little better? I’d take that! lol
    I wish you all well, hang in there, thanks for the site!
    SaharaRN

  10. Hi and Best wishes to each of you. I just got the call from my doctors office telling me my D level was a 6, severely low. She didnt want to give me anything for it but instead is referring me to an endocrinologist. Two weeks ago I was told my B12 was extremely low and now this. I was looking for answers when I found this sight and it helps to hear others stories. I have great difficulty taking medication but am hoping there will be something that will help. I feel extremely weak and my bones hurt deep inside. My best wishes to each of you and Thanks for this site!

    Regards,
    Sandra

  11. Hi everyone,

    Just came across this site while researching Vit D Def. I just got a call tonight from my doctor. She told me that my Vit d level was very low at 14 and also low on B-12. Last year I started experiencing severe peri-menopausal symptoms and my fibromyalgia became unbearable. I hurt so much all the time and have not been able to work (which has been difficult on my husband). I take many supplements, try to eat a good diet, and drink lots of water. My intake of Vit D is 800 mg a day, but I guess it is not enough. I feel like I have so many things going on in my body that I swear sometimes I am crazy, so finding this site and reading all your stories makes me feel like I am not alone! I can find myself in all of you. Tomorrow the Dr has me starting on 4000mgs of Vit D and some extra B-12. I forgot to mention that I am terrified of bees so I spend almost NO time in the sun, so any Vit D will have to come from supplements. My hope is that with treatment I will be able to stand straight again and walk more than a few feet before I collapse into the nearest chair. Thanks for this site and all of your input. Good luck to all.

    Best wishes
    Charlene

  12. I’m glad this information has been helpful to so many. I too have severe Vitamin D deficiency and have to supplement daily for the problem.

  13. Does anyone have any input as to how long it takes to bring your levels of Vitamin D back up once you began taking a large dose supplement?

    Thanks for any input you can give me.

  14. Tammy, Thank you for that info, that’s the next Dr on my list to visit, the rheumotologist (sp). I have so many to see, it’s overwhelming.
    I was also curious if anyone else that was diagnosed with low Vit d, or fibro also had lupron shots for endometriosis too.
    I just saw my endocrinologist, and he said that I can’t take the suppliments, because of the chronic (monthly) kidney stones I pass, he said it will make more, and of course it’s been cloudy out the past few days since I found that out, so I can’t even lay outside..
    {{{gentle Hugs}}},
    Lynn

  15. Hi Charlene, I wish I had an answer for you but I honestly don’t know. I have been on Vitamin D for quite some time and while I have had some improvement, I guess I have too many other health issues to know for sure how well it’s really doing.

  16. Charlene – just saw my endo and he diagnosed me with a Vitamin D deficiency. Started me on 2000 mg/day and said it would take about six weeks to feel the effects…..everything in the endo world seems to take that long! I am lethargic, sore, achy and depressed…have a hypothyroid problem and even had a broken bone that took 18 months to heal! Vitamin D is very important and for those of us who work long hours and have fair skin, the sun is difficult to find time to see and painful when we do see it….the supplements will hopefully help and maybe cure my sore hands, feet and joints! I’d love to be alert and smile again!

  17. Sandie B. says:

    I have been dealing with low D levels for several years. I have taken the 12 week one a week dosage and then to a daily amount. My doctor just informed me and has prescribed again the 12 week one a week and I am sure the daily amount will be doubled. I was taking 2000 units a day but it still is not enough. Are there any risks to the kidneys with these dosages?
    Thanks
    Sandie

  18. Hello. Boy can I relate to all your stories. I’m only 48 yrs old and my body feels like 80! I just got the results of my recent blood work and was told that i am very low on vit. D. The thing is I’m a stay at home mom (plus can’t work cause of issues) and I sit out in the sun all the time when its nice and warm out. Probably too much! So I don’t know how much that really works cause in my case its not. Need to take 1000 ius a day on top o multi and caltrateplusD. I can’t believe that it can cause cronic pain. Maybe this can help with some of my pain! Charlene, your coment about walking a few feet and then looking for the closest chair really hit home. I didn’t think anyone but me needed to do that. Going places is almost impossible. House bound most of the time. Reading these stories is amazing.

  19. I hope everyone finds some relief. I never knew until recently how common Vitamin D Deficiency is. I hope everyone finds what they need. Take care all!

  20. Just an FYI – a sunscreen with SPF 8 blocks 95% of all Vit D production.

    People who spend their times with very limited sun exposure and then go out into the sun and burn are the most likely to get skin cancer.

    The best you can do is spend around 20-30 minutes a day with near full body exposure to the sun between 11am-3pm, no sunscreen. If you haven’t been in the sun for a long time and are very fair-skinned, it is best to take it slowly to avoid a burn. Start at 7-8 minutes front and back for a day or two. Work your way up to 15 minutes per side.

    I’ve dealt with depression for many years, been in therapy, taken medication — this has been the best treatment.

  21. Maureen says:

    Thanks for this site! Although I feel bad that you all are going through what I feel….I now know I am not alone. I’ve had some ongoing med probs the past few yrs. I’m 48. Four years ago was pregnant (lost the baby) and my body went downhill from there. Hypotyroidism (hasimoto’s- including goiter and nodules) , Lupus, heart disease, fibrocystic breast disease, fibromyalgia….you name it! Then in the blink of an eye my teeth and gums began to weaken due to bone loss…now I know it must have also related to Vitamin defic. Had to have the bottom front tooth pulled and can you believe at my age, I had braces put on yesterday (only option for repair) because there is no bone there and they cannot do a bridge or an implant..sigh! Anyway….I went to the Endo (a new one)….He was great. He is the one who did more extensive tests and found I am nearly depelated in Vitamin D!! Scary bcz I take a Calcium with D supp every day! I am also showing (get this) ZERO Vitamin C in my body, which could account for the strange purplish “crop circles” the have appeared on my foot over the past year (and the previous Endo did nothing about!)……..I am happy that they finally found a possible cause for all my joint pain and chronic fatigue….however…..I have a bigger problem that maybe one of you has a suggestion for……Since I was about 20 years old, I have had Vitiligo. For those who don’t know what that is, it presents itself with symmetrical white patches on your joints (feet, groin, faces, elbows, knees, etc). It means you have a complete lack of melanin in those areas. I have never been allowed to go in the sun AT ALL. Fortunately, you cannot notice the patches because I have very fair skin, light eyes, anyway. Since I have been diagnosed with the Vit C & D defic, and all I keep reading indicates I should spend time in the sun, basically, I feel like I would just be picking which way to die. Although I realize skin cancer is of great concern to everyone, going in the sun for me can be deadly because of the lack of melanin. Melanin works as a filter to protect your body from harmful UV rays, which could include your internal organs. So do I go in the sun and increase my Vitamin D & C or do I cover up or stay inside and suffer the consequences without the sun. Does anyone know any other alternative?

    Thanks for listening.

  22. JUST BEEN DX WITH VITAMIN D DEFIC, WILL START TAKING 5000MG OF VITAMIN FOR 12 WEEK, MY DR WILL RECHECK LEVEL SEE WERE IM AT.

  23. Wow – thank you! I’m 31 yrs old and just had twins 3 months ago. I thought I was going crazy when I started to get all this chronic pain throughout my body and no one could find anything wrong with me. Went to a rheumatologist who did a Vitamin D blood test and lo and behold, I’m severely low on it. Guess that would happen when I’ve basically been inside my house for the last 6 months. Starting Drisdol today once a week for 3 months. Really hoping to get some relief!

  24. I would like to direct you to a great resource that hopefully you will find as a valuable tool when discerning the pros/cons of vitamin and supplement use.

    We are a non-profit group (nothing to sell) whose aim is to educate the public with respect to vitamins and other supplements.

    http://www.supplementinfo.org

    Search through the site under HEALTH INFO/and you can find specifics about each vitamin, interactions, where it is found naturally, its uses, etc.

    When I was first directed to this site, it sure helped clear up some of the confusion regarding vitamins.

    Leslie K

  25. Hi. I have a ?… I have all of the symptoms that vitamin D dif causes, I’m wondering if I should start taking vit D, or should I get tested 1st to see what my levels are?

    I find that when I ask or tell a Doctor (any Dr. I’ve ever gone to) to test for this or that, or give them any hint that I am not letting them tell me what is wrong they seem to get an attitude. I am not an agressive person. I just feel they think I’m stepping on their toes, so to speak. Or I have felt that they sometimes make me feel it’s all in my head!

    What is the normal range of Vit D?

    And lastly, what is the difference between Vit D and D3?

    Thanks for any info and advice.

    Dina

  26. Okay, so glad I found this. I have been fatigued and dizzy for about 2 months. Three wks ago I was walking down the street and my tail bone was killing, 10 min later it was fine. A few days later my left ankle started to kill, I could not walk, felt like it was going to snap. It was fine the next morning. A few days later my other foot was killing, even my toes, could not walk…an hr later I was fine. I have had pain in my spine, feet ankles since and my joints have been popping and cracking like crazy. I have been so scared its bone cancer. I researched and found that LT use of aciphex can cause deficiencies and bone loss. One of my drs ran tests and I should get results tomorrow. I really think I could be D deficient from this medication, though my nails seem strong and I do take a D supplement.

    Sometimes the pain can be a shooting pain in my bones. Its awful. I really hope its just a deficiency.

    How long does it take to feel normal again after being on a prescribed supplement??

  27. Valerie says:

    All everyone is talking about is that they are vitamin D deficent with all the aches and pains. No one has said wether talking the suppliments are helping. I’d like to see something possitive about takig vitamin D. It seems like everyone is waisting their time and money buying them.

  28. Valerie,are you deficient? Has anything helped you? I do not know yet if I am def, should hear today. I will keep everyone posted.

  29. Hi guys-I got a confirmation via vm from my Dr that I AM deficient. Insane a def. can cause this much pain. I am a 33 yr old feeling like I have been living in a 93 yr olds body. I will let you know how I progress in terms of feeling better etc. I wish I have had those resources through my journey….I have thought what I was feeling was something VERY serious.

  30. I have fibromyalgia. I was diagnosed vit D deficient over a year ago. I took prescription vit D and at first it gave me boosts of energy but after a while the energy effect tapered off. 9 months later my blood test for vit D was normal and I still had fibromyalgia. Darn I was so hopeful it would cure me! I am having much less pain with using affirmations. Anyway 6 months later tested low in vit D again and going back on it. I neglected to take over the counter D3 cuz it hurt my stomach. I am buying D2 today since that’s the prescription kind I took before with no stomach upset.

  31. This is unbelievable, I just been diagnosed having Vitamin D deficiency today and never thought it would cause joint pain, fatigue, etc. I have been exhausted, and the joint pain was just unbearable! I thought it may be rheumatoid arthiritis or fibromyagia, wasn’t sure but I been having pain in my feet, then ankles, hips and now in my elbow and knees from a period of close to 10 years. I do have B 12 deficiency which was diagnosed back in 2000-2001, nothing was said about Vit D being low then and that was never checked I don’t think.
    I had border line low thyroid a few times and border line high thyroid, but it goes back to normal after a short time. The rheumatologist will check me for osteoporosis, I have to get my new prescriptions, which I will have to add to the daily routine. I am almost 44 and I can relate with anyone in here how painful the joint pain is, and feeling old! I really miss having the energy I used to have! There’s much I need to learn about this, it’s all so new to me.

  32. Margaret says:

    When I ‘googled” Vit. D Deficiency, I found all of you! I received a call from my doctor’s office just a few minutes ago. The nurse is sending me the results of the blood test for vitamin d level. (This is the first test for vit. d level I have ever had over the years!) I still am not sure why the test seemed important at this time in my life, but apparently vit. d level is significant to our general health. I was told that I DO have vit. d deficiency. When I went to the doctor for my physical three weeks ago, I did not mention my fairly frequent ankle pains, hip pains, shin bone pains, etc. These pains can actually keep me awake even though I have been told by my orthopaedist that my knees, my ankles, my shoulder, etc. look pretty good. (He has x-rayed me and has said that just getting older might account for a “touch of arthritis” in several joints.) BUT…my feet!! my shin bones??! Many of you ladies have made me think that perhaps having somewhat deficient level of vit. d just might account for some of these weird pains!!! At 76, I am up and down the stairs off and on all day long! I still am active and truly HATE to have something that is unexplained to me– such as these weird pains. NO, I do not lie in the sun, but I do not avoid walking in the sun. But, thanks! I hope that all you young ladies find relief and much, much freedom from pain and fatigue!! I will purchase my Vitamin D supplement tomorrow and read my report as soon as it comes. Good Luck!

  33. I go back to my doc next wk to discuss results. I have been getting suchdeep pains in my spine too-anyone else!

  34. Thank you all for your input–I don’t feel like such a freak, Deep pains all over but especially in my spine and joints. My D level was 10 and my TSH was also high (5.5) so they put me on Synthroid and 50,000 units of D on the 8 weekly dose and then every other. It has been very frustrating having no one take my chronic pain seriously. They just kept repeating that I had herniated discs and that many people do –no big whoop. “You are atypical” I had been asking for a thyroid panel from my docs for years and I couldn’t get anybody to do it–they would just chalk my symptoms up to menopause (I’m 54). Makes you feel really lonely…

    I feel a little bit better from the pain but the Synthroid has me feeling anxious, sleepless, with some lower GI distress. What kind of psychological/emotional symptoms have others been having? I am a LCSW (psychiatric social worker) and don’t know if the dysphoria (sadness) is from the disorders or just from the knowledge that the body is breaking down. Both seem reasonable. Is this something fairly new? I have never had a D test before nor have I heard about this in my professional capacity.

  35. This eye-popping scientific article challenges the cause-effect assumptions about Vit. D deficiency:

    http://www.sciencedaily.com/releases/2008/01/080125223302.htm

    I’ve been told by my endocrinologist (my thyroid was nuked several years ago) that I am Vit. D deficient and that I need to take a supplement, but based on the supplementation I already take, and comparing my other health factors with what I read in the above article, I will not add a drop of further Vit. D supplement until I get my medical team to get to the bottom of what is really causing the apparent deficiency.

  36. I feel like a 33yr old in a 90yr old body. My D was at 28 which isn’t too low hoping my pains are from D. My joints have been popping and cracking so much-anyone else?

    I also have low GI issues now Denise do you think its related to D?

  37. Any thoughts about why I would have such a severe deficiency (18) if I not only do lie out in the sun a fair bit, especially during the summer, eat a reasonably healthy diet AND take supplements which not only supposedly contain 100 % of the US RDA, but also often take an additional supplement containing D, which would mean taking more than TWICE the daily RDA?

    As I am nine months post chemo, I know that some things may still be out of whack, but I am stunned to be THAT deficient – especially considering that I’ve been supplementing. My doctor has just startd me on 50,000 iu daily, but I cannot understand how I can be SO deficient. What might be influencing/blocking absorption/metabolism?

  38. 1LifesDream says:

    Hi, I have MS and also recently found out I also have a vit d deficiency. I believe it was 11. I started taking 50,000iu a week, and I had such severe anxiety after taking it one time I was scared to death to take it again. Felt like my heart was racing in my throat for 3-4 days straight.

    It was just horrible. So, I started to take 2,000iu a day to see what amount didn’t give me anxiety, but I haven’t really figured it out yet. Seems to be if I take 4,000iu 2 days in a row, it causes it and even sun now causes it if I recently took a dose.

    I feel like I am going crazy ’cause I’ve researched it to death and have found no other cases where it causes anxiety.

    So, I stopped for now. I know I should go back on it cause I obviously need it. Been on Short Term Dis since Apr 14th and they stopped paying a month later and I am really in a bind now.
    My financial situation is horrible and scared to death if they don’t reinstate my benefits of what is going to happen.

    Hope everyone else is seeing positive results.

  39. 1LifesDream says:

    One more thing. I have ALOT of pain in my shoulders, from behind my shoulder blades, to my rotator cuffs and even into my collar bone. Muscle, bone and nerve pain. Sometimes hurts more than others, sometimes one shoulder other times both.

    Do you notice if your pain increases with movement? Seems to be noticeable that it’s there just waiting to strike again all the time, but if I actually start to do things….even going to the store and the act of putting groceries in the cart, taking them out for the cashier and putting them in my car and taking them out when I get home seems to stir up the pain quite a bit.

    My daily activities are very limited right now. Just wondered if anyone else is having this kind of pain. Just really incapacitating at times. I went to Physical Therapy and even though what they had me do was really very minimal, I was in tears by the time I left it hurt so bad. I literally felt like I had surgery on my upper back and arms.

    Also, sometimes I feel like my muscle is coming away from my bone in my shoulder rotator cuff area. I know it isn’t, but that is what it feels like. Also a deep burning pain in my muscles.

    Can anyone relate???

  40. what is everyones D level at?

  41. Colleen says:

    Hello people who are “D” deficient. I too was diagnosed with Vitamin D deficiency back in Dec. 2007. It was 14. I was put on 50,000 IU twice a week for 8 weeks. My level went up to 26. I was told to take 1 pill of 50,000 per week and continue this until my level reaches at least 40. At the present time I am now at 30. I have my levels checked every 8 weeks. My symptoms were severe fatigue and just plain feeling lousy. I had a battery of tests and then retested again mths later. The doctors sent me to one specialist after another. It was not until I was seen by an ENDO doctor and out of the blue he said he wanted to test for vitamin D deficiency. I remember him telling me that he highly doubts that I am deficient because I am of healthy weight, eat right, exercise at least 5 times per week and in excellent health for my age (46). But why am I so exhausted and feeling crappy?….and that would lead me to feeling depressed. A week later he called and said “of all my patients you would be the last one I would think to be vitamin D deficient” . I find out in 2 days what my level is now. I can tell all of you out there that it has helped me greatly. I had at least 6 other doctors test me for Hypothyroidism…Also they thought I was having symptoms of being Perimenopausal. Things have changed for the better since I started taking mega doses of vitamin D. When I reach levels of 40 or above the doctor will most likely have me take this 50,000 IU every other week. There is hope and it feels good. I wish everyone well!

  42. I am a 33 year old male, I just got blood work done for the first time ever. I had been feeling fatigue, and depression for the first time in my life, so I thought I’d check all my Cholesterols, kidney, liver, etc.

    Almost everything was normal, my triglycerides were a little high, but my Vitamin D level was at 16.

    I don’t have any pain, but I’m hoping that when I start my supplement I will regain my energy, and motivation.

    Has anyone else had this problem? I am perfectly healthy, and get as much sun as I can (for living in Seattle). I know it can take many weeks to replenish the Vitamin D. Is there a preferred method?

  43. Colleen says:

    Justin, I just wrote in. We share similar experience. Please read my entry above, Colleen. Good luck.

  44. Hmm, I am at a 28 so I wonder why I have been having pains in my bones and those of you that are lower have not had pain? I see my Dr today as he may want to run more testing to make sure the reaon my bones have been in pain and popping is in fact due to this.

  45. Michele says:

    It is reassuring to know that I am not losing my mind! I have had severe muscle and bone pain throughout my body, IBS, depression, exhaustion, insomnia, rapid weight gain. I have been having hundreds of heart palpitations a day, my blood pressure is elevated. My thyroid function tests are normal, but my vitamin D level was extremely low and my physician started me on 50,000 iu vit D a week. I felt somewhat better by the second week, so will see how I feel at the end of 6 weeks. I wasn’t sure if my aches and pains were normal aging (I am 57), so I didn’t check it out for a very long time. By the time I was taking ~120 Advil a month, I decided it was time to see a doctor. My doctor tells me you should never have this much pain from aging (good to know:)

  46. I was just recently diagnosed with Vit D Deficiency and it was detected because I had a Bone Density Test and that showed I had increased Osteoporosis, so my GYN sent me for some bloodwork.

    I have been experiencing severe IBS symptoms for the past year and a half. I had tried many different diets, over the counter preparations, nothing really helped too much. With one week of starting Vit D supplement, my IBS symptoms have disappeared.

    Im ecstatic that this deficiency was detected. I cannot thank my GYN Dr. for being so thorough.

  47. Sharon and Michelle-what was your D level at? Did you have sharp quick bone pains at times? I have both, sometimes quick and sharp other times in one area (like ankles) for awhile. Also I get a “buzzing” feeling in my feet. I too have IBS issues. Also were your joints popping a ton? Sorry for the questions…..My Dr did not prescribe me a D, just told me to take 1000 a day. Sigh.

    My Dr did not seem convinced all of this was from D. I am going to see a Rheum today….

    • Lesley,
      I have been reading your posts and I recognize for the first time ever that someone else can accurately describe what I have been going through for many years now, with the pains in my ankles and legs. I see that you havnt posted on this subject in a very long time but I do hope that i am able to find you out there now. The pains in my ankles were the first, it was like a lightening flash, then went up through my shin bone, same thing, like a flash of lightening, then went to the other ankle and shin, within a week or so i was washing dishes and the pain shot straight from my ankle into my hip joint. The pain was so bad that I fell to the floor screaming. over the years it had gotten so bad that I have to go to the hospital and they give me morphine. That never works. I just recently got a new doc and he did a ton of blood work and my total cholesterol was 269, triglycerides 272, HDL 38, LDL 177, hemoglobin 5.2, liver was normal, kidney was normal, CBC was normal, electrolytes were normal glucose 89, vitamin D IT SAYS AND i WILL QUOTE…….. 23.7. YOUR VITAMIN D LEVEL WAS ABNORMAL. Then goes on to say that all other labs were within normal range. Did you ever find out why you were getting the pains in your legs and ankles?

  48. My muscles, feet and shoulders have hurt me for such a long time, couldn`t get out of bed in the mornings, my feet would be so sore, and stomach problems too,I really though I had fibromyalsia, Well I finally went to the dr. he called me today and said my D was low and put me on 50,000 iu a week for 3 months, sure hope it works. I`ve read when your D is low that it can cause fibromyalsia, MS, arthritis and even breast cancer, I`m so glad that I finally went to see why I was so tired and achy all the time, We see if the vitamin D works, I would be a blessing. LOL & Hope everyone gets some relief.

  49. How low was your D. My Dr does not think my pain, joint popping or stomach issues are due to D since I am not super low…..I am at 28 level

  50. Colleen says:

    My results came back and I’m at 45 from 14 (DEC. 2007) I was told to now take the 50,000 IU once every other week. I will retest in 8 weeks. If I am dropping again I will go back to 50,000 once per week. If the every other week maintains my level at or around 40-50 I can try taking an OTC 1,000 per day. I noticed that I was feeling alot more energized, less sluggish and that over all lousy feeling was nearly non existant. I had no idea that these last couple of months my level went from 30 (last tested) to now 45. I hope the vitamin D supplement works as well for all of you as it has for me. It was frustrating going from doctor to doctor will all tests coming back normal and being told “we can’t find anything wrong” or “your labs look great”. Always leaving the docs office feeling alone and very depressed. I thank this one ENDO doc for his decision to test my D level even though he doubted it would be a problem for me. Best of luck to all that has posted here.

  51. Thanks Colleen. I am so nervous I have bone marrow cancer or something. I just have such weird bone pain,joints popping, buzzing in my feet and now bad digestive issues-not to mention fatigue. Did you have actual moving bone pain (hurting in one area then an hour later somewhere else)?

    Also, I am at 28 which is not super low hence my Dr thinks this may not be the cause of my concerns (more worried now!) When you were at 30 were you still having symptoms?

    I really appreciate any insight you can give me to calm me down!!!

    I feel like a 93 yr old not a 33 yr old

  52. Michele says:

    Lesley, My vit D level was 18. My bone pain is mostly in my upper arms, neck, hips, ankles and knees and is fairly continuous/chronic in nature. It is the upper arms that are the most painful. I was not experiencing joint popping. I am now into week 3 of my treatment and feeling a LOT better, not taking pain meds, sleeping well, etc. My IBS was under control before I started taking Vit D by taking a fiber pill a day with a full glass of water. I am also lactose intolerant, which is probably why I am Vit D deficient. Regarding your level; There may be normal reference ranges that most people fall into for Vit D levels (or any other lab) but I do think that some people can experience symptoms even though they are “not that low”. I hope this helps.

  53. Colleen says:

    Lesley, yes I had aches in my feet, which was dismissed as overuse because I do alot of walking as part of my exercise routine. All other aches and pains (lower back, shoulders and arms) along with fatigue and just feeling crappy and getting depressed because of not knowing what this was were all attributed to PMS or Perimenopause. Each Doctor explained it all away with the same old stuff. I felt it was neither PMS nor Perimenopause. I was sent for tests to check for MS, brain tumor, heart disease (had a stress test) Hypothyroidism, kidney/liver disease. Even went to a Dermatologist for a hair follicle test. For years I have always taken a mutivitamin, omega-3 Fish Oil and calcium supplement. Never new why I had (IBS)constipation as severly as I did. Always drank plenty of water and ate fiber rich foods. My constipation was due to the calcium intake. My GYN perscribed Metamucil (sugar free orange flavor)daily (I take a heaping tbsp. w/ crystal light) and I have NO problem with that any longer. I had no idea all these years I’ve complained about painful constipation and never once was I told about the calcium supplement connection to constipation and other IBS. Vitamin D has worked for me. My Doc says a good range is 40-50 but never to go above 100. Yes, I was feeling much better by the time I was told my labs read 30. This was approx. 10 weeks ago. I’ve been feeling so much better after that and just yesterday I was told my level is at 45. That explains my overall feeling of good health. If I can answer anything else let me know. I wish you well.

  54. Cristina says:

    I just received a call from my doc last week to say that I’m Vitamin D deficient (I’d never heard of this), and that my bone density scan showed I’ve just at the verge of osteoporosis. Anyway, today’s the first that I’ve tried to figure out what this is all about. My doc prescribed fosamax and said that it also contains vitamin D supplements. I’ve taken about 500 units of Vit D (200+% of the RDA) for a couple of years. Does anyone else out there use fosamax as a way to increase vitamin D? I’m kind of scared of fosamax. My aches and pains have sent me to the rheumatologist several times, other than Reynauds nothing shows up. Thanks for sharing your stories and wisdom.

  55. Cristina, what is your level? If it is low the standard treatment (I’ve found to be) 50,000 IU (perscription only) twice a week for 8 weeks at which time another blood test is done. After the 8 weeks it goes down to one 50,000 per week. Once your level reaches the desirable number (again, this is my Docs recomm.) of 40-50 you will go down to 50,000 IU every other week. That is where I am now. In 8 weeks I will see if the tapering off of the 50,000 drops my D level or I maintain. People with a NORMAL level should take 1,000 IU per day supplement. I have, for many years taken a calcium supplement (1200 per day) all for me to find out that the calcium was not being absorbed due to my low levels of D. Vitamin D is what allows our bodies to absorb calcium, hence good bones, etc. I will be having a bone density test done soon to see if any damage has occured due to D deficiency. Call your DOC and ask as many questions as you want. I knew nothing about low D levels until I was told I had it. I research as much as I can now. Good luck!

  56. Thanks guys. I am starting to think my symptoms may be something outside of D since my level was 28 which is not too low.

    Anyone experience joint popping and cracking along with the pain? I NEVER had joints crack like this (I am talking every two minutes) until I started these symptoms.

  57. It’s terrible when one finds themself sitting up in the middle of the night because they can’t sleep because they are in pain and filled with worry about why their 52 year old body feels like a 90 year old body. That’s where I was 3 months ago and for many, many months before. By the end of my painful journey I truly thought I was slowly dying. In retrospect, my Vitamin D deficiency came on gradually beginning with muscle spasms in my hands, then my legs during the night, progressing to pain – and lots of it – in my lower back; eventually my entire body was weak and in pain. I could barely function. I managed to make in to my office every day but that was the extent of my daily activity. My husband pretty much had to begin taking care of everything that I had done previously. We purchased a new mattress thinking that would help my aching back. I started to go to a chiropractor on a regular basis. After weeks of treatment and no results he referred me to a back specialist. After an MRI revealed bulging discs (which many people have without any symptoms) it was recommended that I have an epidural injection for the pain and begin 12 weeks of pysical therapy. The PT was grueling. I was in constant pain and getting weaker by the day. I went to my MD and asked if I could possibly have Lupus or some other disorder or disease. He said that back problems will cause all kinds of other sypmtoms in a body and that once my back was in shape I’d feel better. He offered to prescribe pain pilss which I declined. (I was taking lots of ibuprofen daily) I did have him prescribe an anti-depressant because by this time I was totally depressed. A couple weeks later I went back to the back specialist who offered another cortisone injection as treatment – pretty much told me that I’d live with pain for the rest of my life. I tried to explain that it wasn’t just my back but that I hurt all over. Getting up out of a chair was extremely painful and to this day it makes me want to cry when I think about what it was like to get out of bed in the morning. So, I decided to go back to my MD one more time. and if he wouldn’t listen I’d go elsewhere. I explained that if he’d look back at my records he’d see that I’m not a chronic complainer who is in his office every week for every little ache, pain, twinge, etc. I told him I know my body and I know something is wrong. With that he sat up and took notice – really took me seriously. He asked lots and lots of questions and ordered blood tests for Lupus, Fibromyalgia, Lymes Disease, MS, and Vitamin D deficiency. I have to admit I was chuckling to myself when he said VDD because I was thinking there was no way that could make me feel this lousy. Well, lo and behold, two days later the doctor called me. All tests were OK except for the VDD test. I was deficient at 18. He immediately started me on 50,000 IU per week for 8 weeks. By the end of the first week I felt like a new person. My energy had returned, the pain was gone, I was sleeping nights and even quit taking all ibuprofen. I’ve since stopped taking the anit-depressant. I am back to doing everything in life that I enjoy – long walks, gardening, chasing my 3 year old granddaughter. And enjoying doing things I didn’t previously enjoy but do now just because it’s so easy to do…..like cleaning, and going up and down the steps to the laundry room. I think the deficiency came on gradually. So many things that went haywire with my body over the past few years have completely cleared up – including dry eyes,and constant watery diahrrea. I am currently on 1,000 IU , most likely forever.
    So, my advice is this. If you don’t feel well and your doctor brushes you off, please be persistent. Be your own best advocate. If he still won’t listen go to others until someone does. AND request to have your Vitamin D level tested!
    Peace!

  58. i’m 26 years old and I’ve been suffering from extreme fatigue, sore throat and eyes (like I have some kind of infection), brain fog and depression , for around a year now.

    I had numerous bloods done and was eventually referred to a specialist who found the following deficiencies:

    B12 *<150 ng/L ( 160 – 900 )
    25-HydroxyVitamin D *17 nmol/L ( 51 – 163 )

    (lab reference ranges are in brackets)

    I also had thyroid function tests and a thyroid ultrasound which revealed nothing.

    I was started on 1000mcg Intramuscular B12 and Vitamin D tablets (2 x 1200mg Calcium + 400IU Colecalciferol equiv to 10mcg D3) for two months.

    After the two month period , I felt quite a lot better but since I had been self-administering the B12 shots, I went a bit over the top (there was a dispute over whether he had told me one month or two) and I had the following results:

    B12 *30785 ng/L ( 160 – 900 )
    25-HydroxyVitamin D 68.0 nmol/L ( 50 – 164 )

    So the B12 will stay in my liver for a while and last me a few months, but the D is still quite low (why???, I take these twice daily, I’ve been doing so for 8 weeks now, why still so low???)

    I also had a test for Intrinsic factor (which enables B12 absorption) , this came out at seemingly normal:

    Intrinsic Factor 1.20 ( < 1.54 )

    But he suspects that there might be an issue and has scheduled a test for anti-intrinsic factor antibodies (I had multple immune counts, assays and antibody screens before, but not for intrinsic factor or parietal cell).

    Anyway, he told me to come back in 4 months and review the levels, I’m starting to feel lousy again (as in fatigue, sore throat and sore eyes, brain fog), this seems to have co-incided with the end of a long period of sunshine we have been having in the UK (we are having a lot of rain)

    One thing I notice when I’m going to have a bad day is that I sleep in bed for longer, and get up later , when I wake up I feel awful (like my body wont let me wake up properly)

  59. Hi Everyone I am so glad I came on this website . I have been suffering from so many aches and pains for a year and a half now. I have been to neurologist, rhematologist but the one person who found my vitamin d def was my kidney doctor, it is at a 12.
    I was diagnosed about 6 mos ago.
    He prescribed 50,000 iu of D3 once a week for a month, then one a month.
    I have heard alot of good it does, but heard there are side effects and Iam scared to take the vitamin.
    Does anyone have any bad side effects with this amount.
    Hope to hear from some people

  60. Maureen W. says:

    I just received my standard blood test results and was surprised to see the doctor tested my vitamin D level since she never mentioned this to me. Well lo and behold, my level is 12. All other levels were well within the normal range. The Dr. prescribed 50,000 iu/wk for four weeks then 50,000 iu/month for four months. Then she will retest.

    After reading the entries on this site I am very hopeful that the supplements will help me. I rarely go out into the sun due to my fair skin and if I must go in the sun I have a SPF 45 on. Like all of you, I have had some recurring and ongoing pain and also chalked it up to getting older, being overweight, stress of my job etc.. I am to do almost everything, but at the end of the day my body hurts and I am just exhausted. But the strangest thing that is happening is that when I wake up in the morning, it feels like my skin is crawling – almost like someone is very lightly running their hand up and down my arm. It goes away after about 10 minutes, but it kind of freaks me out. At this point the doctor thinks it is stress and a need to get more sleep (can’t argue with that) but I’m wondering if this is related to the deficiency.

  61. Maureen: I too had something similar to what you are describing. I described it to my doctor as a sensation of electric currents running up and down my arms and legs. That feeeling went away once the Vitamin D megadose kicked in. Like you, I think I had my problem for a long time and gradually adjusted my daily life to it until I got to the point that I could no longer tolerate the pain, the sleepless nights, the weakness, etc. and finally realized it was something more than being 52, peri-menopausal, and overweight. Previously, I had been a go-getter…..always doing something or going somewhere. Best of luck with your treatment and I’m thankful that you too had a doc that was up on this and knew to test you for it.

  62. Linda: I’m not sure what side effects you are talking about. I’ ve done tons of reading about vitamin D over the past several weeks and haven’t read anything that alarmed me as far as side effects. If anything, what low Vitamin D can do to your system is what is alarming. Low D increases cancer risk, and greatly decreases the strength of your bones and muscles. As long as you follow up with your doctor after 2-3 months of beginning the mega-doses you should be fine. I say take that vitamin D today! Good luck to you!

  63. V what was your D level? Dr told me my pains prob are not due to being low since its at 28

  64. Les:
    My level was 18. Hopefully they’ll figure out the cause of your pain.
    Vickie

  65. I am 37, I have been struggling with Reflex Sympathetic Dystrophy for 18 months after being in remission for ten years. It is also called Chronic Regional pain Syndrome. I have been to many doctors and have had little relief. My new DR. did some blood work and found my Vitamin D to be 15. I am now on 50,000IU once a week. I have horrible pain and alot of weakness. I am also taking anti-depressants, Neurontin, and strong narcotics. Yet I still have pain and I am losing most of my muscle in my calf and right ankle. I have been in Physical Therapy for 8 months with no relief. If there is any one out there who knows of a connection of my disease and Vitamin D Deficency please write back.. Thanks

  66. D.C. Price says:

    I started having problems 6 or so years ago. I use to be a sun worshipper but as I got older I stopped. Hypothyroidism, extra leg and hip pain, Metabolic Syndrome and borderline diabetic. I thought I had found the miracle doctor. That was until I really found the one. He listened to all my problems including my depression. He took a simple blood test and viola! I felt much better 4 hours after taking my first Vitamin D pill. He is very conservative and does not want me to be overdosed so he is now cutting me back but I have already shook the depression, lost 17 pounds, lost most of the leg/hip pain and plan on getting better. I’m worried that heart damage has happened but he seems to be confident in my 120/80 blood pressure. I tell everyone now to get the blood test for low VD. To think I was trying to decide whether a hover-round or another type of wheel chair would be best! I took a plane trip by myself a few weeks ago, carried my bags through the airport, onto the plane and to the rental car without assistance. 6 Months ago I had a sky cap take me from the curb to the gate in a wheel chair. Hopefully never again. I am research alternate ways to get more VD without taking pills. It would be great to have a cream that could be rubbed directly into the legs and hips. If anyone knows then please tell me. I hope everyone is cured from this and gets better. Find a doctor who knows or is willing to learn.

  67. lynette says:

    First of all let me say, see a dr. before taking anything! Let me tell you my story: I was diagnosed with fibromyalgia, ibs, interstaitial cystitis, arthritis, and depression about 2 years ago. My health starting really declining and all I did was go from dr. to dr. trying to find a cure. I had a complete hysterectomy (I was 40 at the time) last summer and began even a more direct downward spiral into what I thought was eternal pain and disability.We went to Las Vegas in January of this year and my feet & legs hurt so bad, my husband had to push me around in a wheelchair. I tried anti depressants, chiropractic, narcotics, physical therapy, and anthing else that I thought would help. Nothing seemed to even come close to giving me ANY relief!! I honestly wanted to die. I am a mom, wife & had my own successful real estate company and I could barely get out of bed any more. To make a long story short, my OB-GYN (who was a new dr. to me)suggested I may have a Vitamin D deficiency. Well, I did. He put me on 50,000 IB every week. Within the first week I started feeling a little better. I have now been on the treatment 6 weeks and I HAVE NEVER FELT BETTER!!! I feel like I have received a miracle. I have energy, no depression, and most of all–NO PAIN…besides the normal little aches & pains that go with getting a little older. I am almost speechless as to how my other drs. and so called specialist could have missed such an EASY thing to diagnose. I mean I was almost suicidal this time last year. I could hardly walk, cried alot, couldn’t focus on anything but my pain, and lost my will to live because of the pain associated with what I thought was fibromyalgia. I feel like I’m 25 years old again. I go from sun up to late night without even a pain pill any more. I occasionally take a tylenol or something because of bone spurs in my neck, but I can honestly say….I’VE BEEN HEALED. I thank God and my Dr….his name is Dr. Yates Lennon, Asheboro NC. He is my life saver.

  68. Cynthia says:

    Hello everyone…I like a lot you found this website while looking for info about Vit D deficiency. I was first told I had this when my Neurologist ran the tests. I have Epilepsy and was at his office for my regular appointment and I was just about asleep because I was in the room by myself waiting (I’m sure you all can relate). He came and was apologizing and I told him that it was normal for me I pretty much fell asleep if I sat down and was still. I didnt think much further than that because I am on Disability for my Epilepsy. He then told me my meds would make me tired but not anywhere near that tired. He wrote out orders for alot of blood tests and even called an endocrinologist he knows to find out the more specialized tests to order.

    He called with some urgency and told me that my Vit D was low and all my thryroid tests were low and to see my endocrinologist (I already had one I had seen before). My endocrinologist gave me a script for Vit D 50,000 IU twice a week for a month did one more test and told me everything was fine and I didnt need to follow up.

    I dont really understand the different D3 and D2 but here are my levels
    D3——-24
    D4——-<4

    I am not really sure which number everyone is talking about when they mention their number. Maybe someone can enlighten me? As you can imagine I am not impressed with the Endocrinologist so I have an appointment with another one but I cant get in until late Sept 2008.

    It just really amazes my that other people are exeriencing the same things I am. I have thought for so long that my tiredness with the “wall” that someone wrote about, the weakness in my legs with use, the way my feet will fall asleep even with me standing up and the general aches and pains and the thinning of my fingernails. Someone else mentioned bone popping, my bones have been popping, it seems like everytime I move. The popping is not painful but just makes me wonder of the cause. I hope to get more answers from my new endocrinologist but its a long wait.

  69. I was just diagnosed today with low vitamin D (17) for a year or more i have felt horrible…im 37 and i have been suffering with the worst aches and pains and fatigue, some days i can hardly get out of bed. My doctor put me on a supplement and i hope i start feeling better soon. I just knew my thyroid was out of wack because it runs in my family. But the only thing out of wack on my blood work was vitamin D…I dont understand why it was low..i eat alot of fruits and vegetables (raw) and drink alot of water and exercice when i feel like it…Reading this page has giving me hope that there is light at the end of the tunnel.

  70. Lynette:
    Reading your story was like reading my own bio. I really thought that I was either destined to live in pain for life or find a way out of this world. Thankfully, what I found was a doctor that knew to test me for VDD. Don’t you just feel like shouting it to the world some days? Wanting to say to them “do you know where I’ve been and how good I feel today”?!
    God Bless and thanks for sharing your story!
    Vickie

  71. Hi Cynthia. I was the one who mentioned bone popping. It is out of control and came on with onset of pain. What are your pains like? Do they feel like little jolts in your bones or more muscular? Mine feel like its my bones. I actually had a bone scan yesteray. My D was 28, but Drs arent sure that is what is causing my issues, hence was not given a dosage of D to take re prescription. My nails are getting clear spots in them now. Perhaps all of this IS D related, maybe a 28 CAN cause these issues I am having.

    Can you all desribe more what your pain feels like? Does anyone else getting a buzzing/tingling in feet at times? I either get jolts of pains to my bones (spine, fingers, feet mainly) or it feels like my bones are being sawed in half. The pain lasts anywhere from a few seconds to an hour and migrates from place to place. Also am having bowel issues now. :(

  72. Oh Lynette–what was your D level at?

  73. Hi Lesley. I guess I should say that I am only 39 and I have battling this or these symptoms since 1999 and didnt know what to call it. In 1999-2000 I got to the point that I could barely walk, could only lift my feet 6 inches off the floor. I had every test my doctor could think of at that time. Finally I had a neurologist tell me there was nothing more they could do.

    Luckly for me my mom is a big vitamin person and shoved vitamins on me and looking back on it now I guess that is how I got enough better to be able to walk. But I never regained the energy and have never felt the same and when I am sick my legs always get weak too, I have always feared the return of the “unknown thing that was wrong with me”.

    In regard to the bone popping. Mine feels like muscular. It feels kinda like when I’ve popped my neck when it was stiff except nothing is stiff and I am not trying to pop anything. Various things just seem to pop when I move, I can just turn over in bed and my whole (or it seems like it) spine will pop one after the other all the way down. Of course my elbows, knees, ankles, wrists, toes and fingers. I dont have pain but I take centeral nervous system depressors ie Epilepsy meds, that may have something to do with it. The only real pain I have is in my hips and ankles (the main pain in my achillies tendon) and it hurts to walk properly and its slow going getting up out of bed, I have to stretch out tendons before walking. I have a lot of abdominal pain but nothing is wrong I can go to bed with what I think must be appendicitis and wake up and the pain is gone, I dont know if that helps.

    Can you or anyone explain what number I should be using as my “number” my D3 number — 24 or my D2 number — <4 ?

    Cynthia

  74. Hi Cynthia. I believe you should be going on your D3 number. My doctor said optimal D level is 40 though I have read on the internet it is 33.

    Out of curiousity have you ever been tested for Lyme? That is my next step after I see the neurologist today.

  75. Hello all. I am 63 and have had problems since 1991 when I had a bad samonella poisoning and then in 1994 I had Mono. I have been told that I have vit. D deficiency, I am on the lower end of B12, have Hypothyroidism. All this makes me tired, depressed and anxious etc. I was not getting enough sun but I was taking Centrum A to Z, Caltrade etc.

    So how did I get to this point. I think it is the Mercury filling in my teeth. I am going to see if I have mercury poisoning. Also they say that in most things made in China have excess Lead, I will also get tested for that.

    I am not a doctor but I think my Vit. D and B12 Deficiency, my hypothoiroidism are due to the Mercury leeching slowly and interfering with my body chemistry.

    Any one has remarks about this.

  76. Hi Lesley, no I havent been tested for lyme it would be rare in my part of the country but it is a thought. I will keep it in mind and ask at my endocrinologist at my appointment in September–(I have a running list of questions so far, I hope he has a lot of time).
    Thanks for the pointers on the number. Most of everything I have read on the web has said 40 also. But I think \different labs have different standards between what is the normal range and then different doctors agree or disagree with the standards. I had a hospital lab flag a high white blood count one time and the doctor (internist) I was going to at the time said they may consider it high be he didnt.

    Hi Matt, I have also read alot about why there is the Vit D deficiency. I dont necessarily mind taking the meds but I want to know what is causing it in the first place and if it can be fixed. One of the things was/is hypoparathyroid. As someone who had to see yet anoter doc to get med for anxiety I understand it and you might want to at least think about it.

    I will tell you that you have to be your own advocate. If you feel you need a test especially if its just a blood test and your doctor doesnt want to do it, insist on it or change doctors. It is your health and there are times you just know something is wrong whether a doctor says so or not.

    I’ve never heard of the Mercury, but I would be interested in the result. I do believe you are right about the excess lead in the things from China. In fact, I refuse to buy any toys made in China and a few of other things as possible. But I dont know if adults would have the same exposure as children since we wouldnt be sticking the toy or object in our mouths. But that is just my opinion.

  77. Hello Everyone,

    So sorry to hear there are so many people out there who have been dealing with the same thing. I appreciate the sincerity of this website.

    I was just diagnosed with VDD (18) also. My symptoms have gone on for years and I have spent tons of money and time going from doctor to doctor. I have experienced everything from blood sugar issue to dabilitating pain. I am so hopeful after hearing these stories that this has been the problem and it CAN be corrected. I am a 48 yo female and my symptoms have been slowly progressing over the past several year.

    I started with blood sugar issues. Next was lower chronic back pain. Then problems with horrible gastro problems including chronic intestinal problems and GERD. The GERD got so bad that it was buring my voice box at night and I would wake up with no voice at all. As soon as my feet hit the floor I would have excruciating pain in my ankles and lower back. It would subside some as I moved around and the pain seemed to move around. I was afraid to walk long distance (use to do walk-a-thons). Even walking to my car caused terrible tendon and muscle pain and bone pain. I began not even going out of the office at work. My weight began to balloon although my diet didn’t change. Seemed I was gaining a pound a week. I also had been to a cardiologist because of superventricular tachacardia (heart).

    I began weight watches and the gastro doc put me on aciphex, zantac, and domeperodone (insurance doesn’t cover) because my esophogeal sphincter do longer worked and he didn’t know why. Gaviscon at night and raise the head of the bed to keep acid down. I was on weight watchers for a year and only lost 7 pounds while everyone around me was making their goal. I was becoming depressed. I am already suffering post traumatic stress disorder from being a victim of an armed robbery and things have just been gettng worse. I started feeling like it might be in my head.

    I decided to change all my doctors (except the gastro). I found a new orthopedic (get results in a week of MRI) and my endocrinologist. She ran a battery of test and after hearing my symptoms she said she would run test for thyroid, glucose, cortisol and Vitamin D. Her words to me were, “It sounds to me like a D deficiancy but we’ll wait for the test.” She was 100% right.

    I just took my first dose of 50000 units which will be twice a week for 6 weeks and she will monitor closely with blood work. Expects my weight will start to drop since D coverts to a hormone which processes other vitamins and minerals. After taking it for the first time I began having twitching in my eyes, feet and hands which went away within about 3 hours and some heart palps. I have a headache this morning and will tell her about it tomorrow.

    From what I have read, VDD can cause more then just bone pain. It can cause neurotransmission problems, muscle wasting, weight gain, heart beat problems and GERD. After being told by 4 doctors that I had fibromyalgia and possibly lupus or MS and being tested for lyme disease, I’m glad to hear that this deficiancy can be the route of my problems. I am looking foward to having the energy back that I once had and that I will be able to continue my exercise regiman without having to push through horrible pain just to keep up.

    Good luck everyone and here’s to good health!

  78. I am a male and I feel like most comments come from women ( as the names suggest).

    I am not sure how many males have Vit D issues.

    In the last 3 years my joints would hurt with some swelling, no doctor or test could tell me why? then in the last six months I had severe fatigue. My blood work indicated Vit D at 16.
    I stated taking 2K IU daily for three month, felt very good in the beginning but eventually I felt sick with tingling sensation all around my body like insects crawling all over. I checked the net as I am tired of going to the doctor. He does not seem to be very serious about my issues , claims that I may have depression etc or to my satisfaction I should get all the tests done including HIV. So I self admin B12 and felt better with no more sensation of tingling around my body.

    I visited the doctor again after 4 months and the Vit D levels were lower to 9. So he advised me 4K IU everyday for a year.
    I am going crazy as I have read excessive intake may cause muscle issues.
    I started with 4KIU daily and still don’t feel better after two days.

    Any suggestions ?

  79. I dont think you will feel btr right away, your body needs to get back to a normal d level….that will take time.

    D your joint pain sounds like mine as does your story. I am still on the hunt to find out exactly what is causing roaming joint pain. Also, I have had GERD for years.

    Can you describe your joint pain more? Does it move around for example hit one finger for a few minutes then hours later hit your ankle? I was dx w low d, but dr says this is not causing my pain. SO with that, I have been going from dr to dr.

    Also do your joints crack alot?

  80. Hooray for discovering this website. I too have been deteriorating for the past 5 or so years. I’m 52, used to be very active, working out, and started finding it harder to recuperate after a work out. Joint pain, from toes to neck, flare ups, lack of energy, joint popping, sleepless nights, aching feet and hands… So frustrating.I thought it was age, menopause, arthritis. My parathyroid hormone is high, and vitamin D low. (24) So I’m starting on 50,000u per week for 6 months. I hope this is the answer.

  81. I wish I found this website a year ago. I turned 40 last summer and fell apart. It started with aching pain in the balls of my feet. I started to have pain in my wrists, elbows, and eventually shoulders. I became absolutely exhausted. I had to come home from work in the middle of the day and nap. For days on end I would fall asleep at 4 pm and drag myself out of bed at 6 am the next day. I was tested for lyme, rheumatoid arthritis, and lupus. Fibromyalgia was suggested as was depression. I didn’t feel like I was depressed, but was headed that way because I was slowly becoming crippled and everyone thought it was in my head. Finally was tested and found that I was Vit D Def. I was at 6. Started taking 1000 IU of D and honestly felt dramatically better in 3 days. I felt better than I had in years. I stayed feeling better for a few months and out of the blue crashed. Pain and exhaustion returned. I was retested and was back at 12. I started taking 2000 IU and have moved up to a 32 as of a month ago. My doc says 45-100 is normal so I’m still a little low. He did not want me to increase above 2000 since it is improving. I have been feeling lousy again this week and don’t know why I’d be dropping again. Is anyone having a problem with maintaining once they’re feeling better even if they’re still taking a supplement? I drink a lot of milk, but being very pale avoid the sun without slathering on sunblock. This hasn’t changed so I don’t know why I keep rollercoasting.

  82. Michelle says:

    Wow, I am suprised so many others have similar symptoms. I have had muscle aches, headaches, joint pain, neck pain, back pain, GERD, weight gain, and fatigue for several years and they didn’t figure it out until this week that I have low D. I thought it may have been arthritis although I am only 41. I’m taking my first Rx suppliment today and am optimistic that I will be feeling so much better in the next weeks/months. I look forward to the day when I can get up in the morning and not feel like I’ve been hit by a bus!
    CYNTHIA, I have epilepsy also and my endocrinologist told me the low D can be caused by our seizure meds. Of course I will not consider discontinuing THOSE :) but we may be needing to stay on the suppliments of D vitamin indefinitely. That’s something I have to find out at my next visit.
    btw, great website, thanks!

  83. After more than 10 years of suffering — not only with fibro, but also from the “care” of skeptical and/or inept Dr’s, I was recently fortunate enough (and smart enough) to ask my current Dr for a referral to a rheumtologist (who also happens to be an FM specialist). (If anyone with FM has not done this, do it now.) The new Dr immediately ordered about 20 blood tests – one of which was for Vit D. My level was 9 (35-100 is normal range). If I had not taken the initiative and requested the referral, I would still be going down hill without knowing why. I started on the 50,000 IU prescription yesterday. After reading the comments, I’m wondering about my B vitamin levels.

    The sicker I get, the more housebound I become. The more housebound, the less sun I get — the worse I feel. I’m fair skinned, and use 50 spf sunscreen, wear a hat and long sleeves in the sun — because some of the meds I take say to avoid prolonged sun exposure. I do have a question — I have sudden drenching sweats that last for 5 minutes or less, followed by exhaustion and nausea. This is not a hot flash. Anyone else experiencing this? Thanks for the great site, and great sharing by everyone.

  84. Hi Lesley: I noticed that you don’t mention a fibromyalgia diagnosis — do you have one? I’ve dealt with the roaming joint pain and popping symptoms of FM for years. Sometimes, when I wake up in the morning and step down for the first time, the bones in my feet pop so much that it feels like they might shatter. The pain moves around my body from feet to hands to calves to lower back to arms to knees and on, and on. I can relate to your anxiety that it could be something like bone cancer — I went through years of that as well. FM is a nasty chameleon. That’s why it’s so important to get diagnosed by someone who knows what they’re doing.

    It can be tricky to figure out the difference between what is an actual injury, and what is “just” FM. I’ve just had xrays, thanks to my new Dr, and discovered the severe pain in my hips is not FM related, as I’d been told, but due to degenerative joint disease — perhaps related to years of bone loss due to a vitamin D deficiency that no other Dr thought to look for. I can only wonder.

  85. Cynthia says:

    HI MICHELLE, I’ve read about the Epilepsy meds myself but the ones I take supposedly dont cause Vit D deficency. But I’m like you anyway, if that is the problem I’ll just have to take the supplements because stopping or even changing meds at this point in my life isnt an option for me.

  86. For people still not feeling better or have a relapse of aches and pains, I suggest that they also get tested for other vitamin deficiencies, thyroid functions, parathyroid level, antibodies to TSH, Heavy Metal Toxicity. Dont give up. Also have tests done for Mono. Diet should be balanced and suffcient excercise should be performed everyday.

  87. Hi MATT, I am with you all the way until you get to sufficient exercise. What is your definition of sufficient? I would love to be able to go to the gym and work out but for me a trip to the grocery store and some errands and I am wiped out. I come home exhausted and have to go to bed. I usually sleep for a few hours after that.

    The Vit D is starting to help with the tirdness but now I have weakness in my legs and my doc gave me a script for Potassium too. I have an MRI schulded but I dont really expect them to find anything. They are just ruling things out becuase I have previously had a stress fracture in my lower back (still cant tell you when I did it, they think late teens early 20’s) and fell/got bucked off of a horse about 8 years ago.

    But thank you for the tests I will write them down and ask my doctor about them.

  88. My dr pushed on the trigger points and I did not have pain, so he does not think fm. With fm can pains vary from quick stabs to pulsating and bone crushing pain? I have had so many tests done . Tomorrow I go on for an echo. as it could be endocarditis also they think I may have colitis which could cause this. I just want answers! I will keep you posted would be great if it were just d!

  89. Hi Lesley,

    My Vit D level was 11. My Dr. prescribed me to take 2000 units of Vit D per day.
    My symptoms were mainly the IBS and feeling tired and muscle aches. The IBS is 95% better at this point, my muscle aches are 75% better, but still feeling very tired some days. I have my level repeated in several weeks, so I will let you know how I make out.

    Hope you get to the bottom of your problem. Good Luck

  90. Hi Robin,
    I also experience those drenching sweats at any given time. I have already gone thru Menopause, and I know what hot flashes feel like and these definitely are not the same. I am making a list of questions for my GYN Dr. She was the one who diagnosed me , so hopefully she will have some idea about all of these symptoms.

  91. My doctor wants me to start taking Evista because my bone density scan shows that my bone density is dropping. I am not yet into osteopenia so I’m VERY reluctant to take Evista. He has never tested me for a vitamin D deficiency. After reading all the comments, I feel that this could be the cause of my declining bone mass. (I also have tachacardia, I have to hobble when I first get out of bed or after sitting for a while because my feet hurt). I was thinking I must have arthritis, but now I wonder… Does anyone else take Evista?

  92. I have recently been diagnosed with Vitamin D deficiency and had just started having many of the symptoms described by all of you. I have a question to ask… as Vitamin D is produced by the parathyroid… have any of you had reason to believe you have been exposed to nuclear radiation in the past.

    The reason I ask this, is I am what is considered a “downwinder”. As an infant my father was stationed at Larson Air Force Base at Moses Lake, Washington. This was in the middle 50’s. We now know there were significant leaks, releases and environmental contamination from the Hanford Nuclear site during this time. Many of the inhabitants of the area have suffered from a variety of thyroid conditions, but not much information is given about the effects on the parathyroid.

    I’m just curious if there could be a correlation dating this many years because my mother and my sister are both exhibiting the same symptoms I am. In fact, my mother has been suffering for years with many of the symptoms described by all of you. I am encouraging her to be tested for Vitamin D as soon as possible.

  93. I feel fortunate to have spent only three months in search of a diagnosis for my muscle soreness and stiffness, fatigue, and general unwell feeling. I was sent to a rheumatologist who tested for lots of things like rheumatoid arthritis, dermatomyocitis, lupus, and others. Lo and behold, my vitamin D level is 12 and I have been put on the 50,000IUs once a week for 8 weeks, then to retest. I drink a lot of milk, take a multivitamin, take a calcium with D, walk outside every day, etc so I am quite surprised to have this diagnosis. I took the first dose 4 days ago and already feel some relief in my muscle soreness and improvement in my energy level (there was no where to go but up!). This website has been a godsend in finding others with like experiences. Thanks to all for sharing.

  94. Danielle says:

    Hello,
    I’ve been diagnosed with vitamin d deficiency as well. I’ve been taking a prescribed level of vitamin d for the past 4 weeks and I’ve been feeling sick to my stomach with headaches and I’ve even had a migraine in my eye. Does anyone else have these side affects, or is there something else going on with me? I’ve been to the doctor (that’s how I knew I had a migraine in my eye) and he said to go with over the counter if I’m still feeling sick. I was just wondering if anyone else has suffered from side affects?
    Thanks!

  95. I also have been noticing my muscles twitching and now horitzonal ridges in my nails that look like waves-anyone else/

  96. Lisarose says:

    Since late 2006, I have been diagnosed with low vitamin D, high parathyroid levels and low TSH (thyroid) Endo was not up on this so saw another endo who was worse than the first one. Head and neck surgeon referred me to yet another endo and he specializes in diabetes and he basically is in the same caliber as the first 2. Fast forward….he had me on 50,000 units of D last year for 21 days. I thought I would die taking this. Levels came up from a 8 to 40. I was happy. He then told me to continue with Calcium with D and take 2 pills a day giving me 800 mg of D.
    New tests show Vitamin D back down to a 9. Ferritin levels low and TSH back to 8.5 which is bad. He has flucuated my Synthroid from .112 to .137 to .125 back to .137. I am all over the board. PTH levels are also high again. Plus, it is like hell trying to reach him by phone or fax for drug questions but they do not return calls for over 2 weeks. I hit the roof last month and told him I have to get on with my life as I now also have heart problems, palpitations, thryoid nodules, high parathyroid levels and low thyroid levels and now low Ferritin levels. He called in more 50,000 units of D for another 2 weeks and I am choking on this amount. He refuses to do another D test (last one was 4 months ago) His RN called me and told me that ALL MY HEALTH problems are stemming from LOW vitamin D. I want to beleive her but I have asked to be transferred to a new female endocrinologist that just moved into town. I cannot see her until Ocotber. I was told that she may work differently than the endo that I am trying t leave. I said “I would welcome “different” at this stage. Has anyone suffered side effects from taking 50,000 units of D every day for 2 weeks. I am having a hard time. Thanks.

  97. I found this site around noon time today. I found more information on this site with everybody’s contributions that I did just doing a search on Vitamin D deficiency. My level is 8. I have been in pain for a few months, but as I think back, I must have had low levels of Vitamin D for a few years. I have had problems with my hands to the point that I can’t hold a pen at work. My doctor suspected Vitamin D deficiency right away. He must really be up to date as to the possibilities, but not really knowing much about it except to have me tested right away. I am taking 25,000 units of D once a week for 12 weeks and will be tested after that. I see where some people who have a higher number than me are taking higher levels. I also find it alarming that some people’s numbers drop again. This must be something we have to keep testing for. I have been taking it for 6 weeks now and progress is slow. I also take the calcium & D 400 mgs twice a day. I know I felt terrible a lot of days not knowing why, plus the chronic pains in my hands, hip, and knee. I didn’t mention it to anybody because I didn’t think anyone would believe it.

  98. Lisarose says:

    Yes I have periodic bouts of hot flushes and they are NOT menopausal. I also have side effects from large doses of “D”. I also have been sick for years and thought I was a nutt case. All along it has been lack of vitamin D. I now have sleep apnea and breathing problems. I was just tested for Saqrcoid. No sarcoid per lab results. All lack of vitamin D. Who would of known.

  99. Debby what were your pains like exactly? Were they pulsating or quick stabs? Would they move from place to place?

    Thanks for feedback…

  100. Lesley, The problems with my hands started a couple of years ago when they just fell asleep, then start hurting, but would go away after a few minutes of shaking. Then they got to the point of almost feeling arthritic and when I held something like a pen, they hurt to the point where my hand would not be able to hold it any more even just writing my name. When I finally said something to my doctor they were to the point that it didn’t matter what I was doing, the pain would come and it felt like they were in fire and they actually felt better when I held them under cold water. I have worn the wrist braces to bed every night for over a year because they would wake me up in the middle of the night all the time and the braces seemed to help some. Now after the 6 weeks of the treatment which is low compared to the others, they get tingly more than painful. It seem that they are slowly getting better, but I do have the pain sometimes as the day approaches for me to take my next D treatment. I am 52 and have always been healthy to the point where I only saw a doctor when I was sick enough to get an antibiotic which is why I let it go on for so long.

  101. robin too says:

    From one Robin to another…

    I too experience bouts of that drenching sweat with exhaustion and nausea. I was diagnosed with really low vit d and iron a few months ago and have been supplementing over the summer. I stopped the d because I was spending a ton of time in the sun and it was helping. But this past week, the fatigue, sweats and nausea came crashing back. The doc thinks my d could have crashed again…I think it could be that or peri-menopause hormone crashes. Who knows. I just had my levels checked this week and am waiting for the results.

    -Robin

  102. What a wonderful website, I too agree with others saying that this website is one of the most informative of them all, just by reading everyones experiences with Vitamin D Deficiency. I have been suffering from the Deficiency for 2 years, I was untreated for about a year and a half, like you all I have been on the 50,000iu treatment once per week now going on 12 weeks. I started taking the treatment for 8 weeks that did not help so I am on it again until October. My first test for Vitamin D was an 8, went up to a 10 and has stayed there. I have all the aches and pains and the depression. I am all borderline Hyperthyroid, it has not improved so I will most likely be put on medication for that. I do hope you all get better and that we all know we all can talk to eachother on here. Thank you for you comments and for sharing your experiences.
    Leelee

  103. I have had consistently low vit D <4, 6, with therapy got up to a whopping 28. I also have had high PTH (parathyroid hormone) and was found out I had servere osteopenia when I was only 30 yrs old. My rheumatologist finally started testing my vitamin D, and over the past year, I have been a mess. I was diagnosed with a pancreatic enzyme deficiency as a baby, juvenile rheumatoid arthritis at age 9, sjogrens, neuropathy, and raynauds, and two years ago, I was so incredibly sick, I thought I was dying (that I pretty much thought the arthritis for which I was taking methotrexate and enbrel was kids’ stuff). I was passing out, having rapid heart rate, low BP, anemia, low sodium, low potassium. I was dx with Postural Orthostatic Tachycardia Syndrome (POTS). I also found out I had a small lesion in my brain (pons) which they think is nothing but just so happens that is a major area that controls norepinephrine (NE). I have high levels of NE, but that is because it is not absorbed in POTS patients. At the same time I cannot help but wonder if the pons is responsible for my problems, whether the PTH affects the D or the D the PTH? Which causes what? I Know they are related. DOes anyone know? My most recent tests show my vit D is 6 and my PTH was much too high AGAIN. I am on my third endocrinologist. I have two electrophysiologists for the POTS, and a great rheumatologist. The new endocrinologist is sending me for yet another bone density test and some scan of my parathyroid to rule out a tumor. Well, this sounds crazy, but I hope I have the tumor, cuz the surgery is simple and I will feel better immediately….otherwise, I guess I have multiple risk factors for vit D deficiency and correction of that will help the PTH. So, I am on 50,000 U twice a week this round! Every time I stop it and just take caltrate and D, the blood tests are bad. I also have low IGG. I don’t know what that means except it is something bad! Mayo figured this out two years ago, and said I needed repeat blood tests monthly, but I finally got someone to run it again, and it was low. I am soooo tired, I can sleep on 100 mg adderal w/200 mg provigil…yep, that is unbelievable. The stimulants actually bring DOWN my heart rate (it’s weird, I know). I still work as a professor at a major university, but it is killing me. I haven’t been to a grocery store in 2 yrs….I pay for some care in my house in the mornings and they shop for me. MY HR gets up to 200+ regularly, especially if I skip meds. I think that my memory and attention, body clock and whole concept of time have become a huge problem for me, especially at work. I am up late working on some administrative business due tomorrow, and am forcing myself to push myself, because I cannot afford to quit work and lose my health insurance (and I did love my job until I became damaged goods). Yes, I am depressed. Most POTS patients are, but apparently, the Vit D could be causing this. Anyway, it seems POTS is the root of all my problems, even arthritis. I never imagined life would turn out this way, and when I was relieved to find out I wasn’t a hypochondriac, I didn’t know what i was in for. I have always been underweight…I mean I could not stay over 100 lbs, but recently gained 20 lbs in 2 weeks (20% or my body weight). POTS is costing me a fortune! I read the vit D or PTH problem can cause weight gain. Does anyone know if it does and which came first the PTH or D problem? Thanks for reading. I hope someone will know the answers, but I don’t wish this on anyone. I am too young to give up on life.

  104. Lisarose says:

    Hi Neshema, My scans (sestamibi 99T) do show a right sided lower parathyroid tumor. BUT, new doctors said it is just an enlargement due t the Vitamin D deficeincy. Per parathyroid.com guru Dr. Norman, you have to have an elevated Calcium reading. I beleive this is over 10.6 0r 10.8. My Calcium level is never high=. It is smack in the middle but the IONIZED Calcium Level is a tad low. Yes, I wish I had high levels of calcium as I would of had this thing out by now as I have a great head and neck surgeon here who also does the microvascular removal of parathyroid tumors like Dr. Norman does.

  105. Hello. Feeling lousy all the time and exhausted after having a good night’s rest leads to some form of depression. I have been suffering from Vit D and Iron deficiency. I take slow Fe tablets daily and am now taking Vit D supplements (50K tablet per week). I experienced a noticable difference in energy for a while, only to find out that Vit D and Iron were low again. I was off the Vit D for a few weeks since my Rx ran out, figuring I was feeling better and getting a lot more sun with vacations and general summer days…. Anyway, back to square one and not feeling the best. It seems that the Vit D did help with GI problems, but not sure if that was a coincidence. I hope the new Rx will give me the boost I need. I read the response about Vit D helping to give a boost, then not helping at all. This concerns me… I feel like I need to see a specialist b/c my primary is just having me take the supplements, then get checked and rechecked. How is this all helping?? What kind of physician can help with Vit deficiencies that are chronic problems???

    I hope to feel better soon and I hope everyone else who wrote in feels better, too… Strangely enough, I went on an 8 mi bikeride last weekend and I felt great, but since then, I’ve been fatigued and worn out:((

  106. Hello Kim, We all have alot in common. I have had the same problems as you have. Like you said at first when you start taking the Vitamin D, its great you have some energy back and then boom its all gone. I also have anemia.
    As far as seeing the correct doctor, I would suggest an Endocronologist, they deal with those sort of things including, diabetes and Thyroid Disorders.
    I hope you are feeling better as well.

  107. Matt-
    I have heard of amalgrams from your fillings leaking mercury into your system. My nieces daughter had that and had to go to another state and pay $7000 to have them removed. Have been trying to get tested for heavy metal toxicity but my PCP and rheumatologist refuse to check it. Who do you go to to have it checked? My niece was always fatigued and even after having them removed its literally taking years to improve as the mecury works its way out of her system. Its my understanding that chelating works it out right away but need to be under drs supervision for this. I heard about this under drmercola.com which can refer you to other sites.

    Neshema- When I first started reading your sight I immediately thought POTS. I had never heard of this until my niece got it. Its not real common and she had to go to a teaching hospital to be diagnosed. She apparently got better (don’t talk to her much) since they put her on meds and is back to work. She had to quit because nobody knew what was wrong and she would always pass out.

    Robin-I too get these sweats. I would literally be drenched in a matter of minutes and I knew it was not from menopause. It was never this bad then! I thought it was the meds I was on for rheumatoid arthritis.

    I just started on 50,000 iu a week today so am hoping I get better. I have been told my problems were due to arthritis so they put me on these meds which just caused osteoporosis in my back, osteopenia in my hip, cataracts, you name it. Now I realize my vit d was low (probably for a couple of years) and I maybe didn’t even need those meds. We will find out and see if I feel better on this vitamin d and hopefully get off those meds.

    I love this sight. Hope everyone makes a miracle recovery on this stuff!

  108. FIRST, I have two questions: 1. does anyone have or know about low IgG levels. I think it is something bad based on what Mayo reported and what I have read. I also went to the vit D council website, which was pretty good. Sounds like between the IgG and the vit D, I am at a huge risk for some major illnesses. I guess I will find out someday. 2. I forgot. Darn POTS and memory. Yeah, I just remembered, I read vit D deficiency can cause weight can and even obesity. Well, I think I mentioned the mysterious 20 lbs from nowhere and how I starve. No one seemed to know why (docs). So, have any of u gained weight without knowing why? Since taking Vit D, have you lost it. At least I used to look good and have a brain. I am not fat, but I am unhappy that I went up 2 sizes and have to starve. I am very small boned with very pale skin. So, about the weight gain…I am pretty distressed about it, and would love to hear that other people have had this and lost it.

    Lisa, Kim, Lee, Patti- Wow, thanks for the responses. First about iron, I imagine between anemia and vit D deficiency one would feel pretty awful. Seems we all have so much in common. I have been getting night sweats (I mean the kind where u and the bed are drenched) since my late 20s, and I am now in my mid to late 40s (where did the time go?). No one seems to know what they are from and I am still premenopausal. They come in cycles, so I think it is endocrine stuff. Who knows. It scared me in the beginning, but I guess I am used to it. It could be from the POTS, because it messes with our body temp regulation. But, normally, I rarely sweat and am freezing, sleeping in the summer with the elec blanket, 2 comforters, 2 blankets, socks AND gloves. Part of that is due to neuropathy too. It just all a big mess.

    Patti, I bet your neice saw one of my docs. Was it in Ohio? Yeah, he is the guy to see. He wrote the text. Yes, it is rare, and so we don’t know much, and I don’t expect a cure in my lifetime. They just go by trial and error of what’s the problem du jour. Really, POTS affects just about all your involuntary nervous system. I am very glad and surprised to hear your neice improved. Most people don’t. I hate POTS. I am having a hard time figuring out how to live my life around it. Unfortunately, it ends up consuming life, as much as I want to enjoy life, it is too hard. So what did I say that made u first think of POTS. BTW, I am told I am the “POTS Poster Child.” I would rather be known for…oh, okay I remembered what I forgot…back to the beginning.

    Lisa, thanks for sharing about the PTH. I wonder how many here haven’t even been tested for it. Seems to be a subspecialty of endocrinology. Yeah, too bad they couldn’t just rip out a benign tumor and be done with it. I wonder if I can take mega rx vit D for life? The min I go off, everything gets messed up quickly. What other major symptoms clued your doc in? I heard that poor bone density is a stronger predictor of the tumor than calcium levels. Mine is a bit low too, but my bones density has been poor forever. I’ll try to update u when I get my scan.

    Okay, I feel like an old lady complaining. Sorry. I really just want my life back or even just half of it.

  109. Neshema-When you started saying you were passing out with rapid heartbeat, low bp, etc, it reminded me of the same complaints my niece had. She went to Froedert Hospital in Milwaukee Wisconsin to get diagnosed. Apparently the doctor there is like the only one for hundreds of miles who checks for those things so he is really backed up with appointments and you need a recommendation from your doctor to go there. From what I hear she seems to be doing OK except now and then she feels lousy but overall is OK.

  110. Neshema I have never heard of POTS and I did some research on it and it amazes me, I also read that persons with Thyroid disease can suffer from the same sorts of pains that are associated with POTS. I do hope you get the answers you seek.
    Leelee

  111. Neshema I dont know what I was thinking my doctor has spoken to me about this several years back I just remembered, but nothing ever became of it, I guess I should mention this one day. But I think he called it something different? I no longer suffer from this but I am borderline hyperthyroid
    Leelee

  112. I, like you am having second thots of taking such a high dose of Vit D (50,000 IU) twice a month, due to side effects. I’ve ended up in E.R. so many times, my system is so very sensitive. I like the idea, that when it works, it works well, but would love to hear more comments about side effects people had, I’ve been a chronic pain patient for 19 years (Fibro), and have numerous other disorders.My pain levels and other symptoms are so high, I get out of bed, and spend the day on the couch till bedtime. I’m absolutely miserable! Also was recently diagnosed with Vit B12 deficiency, with very low levels. I also have Celiac Disease which have connections to both these vitamin deficiencies. I’ve started the B12 injections (1000 mcg every 2 weeks. ) My body responds quickly to that, but am back to square one the next day. Haven’t been able to get my GP to respond when I’ve asked for a regimen of injections every day for a wk, then to once a week, then once monthly. If anyof you have had side effects to Vit D, please post. My GP is out of office for 5 days and wouldn’t want to have probs & have to deal with a GP I don’t know.

  113. My D levels are very low also. Dr has Rx’d 50,000IU twice monthly. But the little I can find on side effect on this vitwmain are practically ‘nil. I’ve found myself in E R so many times with side effects & reactions to new meds, the thot of another doesn’t thrill me. Iknow I’m low and need this med, but it seems like such a high dose. And I’ve never ever done well on long acting meds. I try and stick to short acting. Along with all the other symptoms with the pain, etc, I was diagnosed with Fibro and Chronic Fatigue 20 yrs ago, and now have Celiac Disease. Was also recently started of Vit B12 injections for low levels there, but I only get relief for the first day and am back to my love affair with the couch, where I spend most of my time. I, too would like to hear from those who’ve had side effects from this Vit D. By the way, This is ‘the best’ forum regarding Vit D. I love it.

  114. Hi all I’ve noticed alot of people on here are worried about the side affects of the 50,000ius of Vitamin D, this is what I have experienced, I have gotten light headed, hyper, upset stomach, creepy crawly sensation, pins and needles sensation, a bit of depression, and thats about it.
    These are the possible side affects that the pharmacy warns: Weakness, headache, sleepiness, nausea, vomiting, loss of appetite, metallic taste in your mouth, dry mouth, constipation, stomach cramps, diarrhea, muscle or bone pain, dizziness, excessive thirst, or excessive urination.
    It also says not to take antacides containing magnesium.
    Oh and a few asked if the therapy works well from my experience, there were times I have felt lots better and times I did not and experienced one of the side affects. But I can say overall I think they are helping.
    Hope this helps.
    Leelee

  115. Patti, Try a Holistic Dentist who does mercury fillings to prescribe checking your niece and yourself for heavy metal testing. Mercury has no effect on regular chelating agents that can take it out of the system. I have heard, only yesterday, that Chlorella also works as a chelating agent and may work on Mercury without much side effects.

    FOR ALL OF YOU: One thing we ALL MUST NOTE that most treatments when they work have a very strong effect on your body. Sometimes, even if a treatment works, you feel that your symptoms are getting worse. Unless it is really bad, dont discontinue treatment without giving it enough time. This statement goes for herbal treatments too. So unless and until your side effects feel very bad and intolerable DONT discountinue the treatment. For example, if Vitamin D supplements start working, it will initiate many processes in the body. This sudden re-activation of these processes will be handled with the body differently and you may feel very bad. Give some time if you are able to.

  116. Patti: I am sorry in my last post the first like should read “”Try a holistic Dentis who does mercury FREE filling”. Sorry for the error.

  117. oh my god u guys gave me so much hopeeeeeeee

    i noticed from 3 weeks now i am diagonised as a defict in vitamin D and it was 6 !! so u think wat kind of pains nd issues am having i took a treatment for injections once a month nd now i guess iam left with 2 or 3 doses more

    i hope i will feel much better

    can any1 tell me that all the effects will go ?? and never come back again esp. depression
    i swear to god i thought i had a severe illness before knowing why am i feeling so tired !

    thanx to my endo doctor, he figured out my blood test
    and the only reason of this deficit is because i never let my self in the sun !!
    although i am in a hot country Qatar =[

    i just never go in the sunnnnnnnnn
    so id be glad if any1 will answer my question aboveeeeeeee

    and good luck to all

  118. Lisarose says:

    My Endo has Rx’d 50,000 Units of Vitamin D daily for 2 weeks this time. (Last time it was for 3 weeks daily) I did not comply to his wishes, the first time due to many ill feelings of which he was upset with me telling me that Vitamin D in the amount he gave me for 3 weeks did not cause side effects. I wanted to slap him and refused his directions. I took them every 3 1/2 days for a total of 10 times and then quit. ‘MY” regime did bring up the D level to 56. (never told him differently)

    I took one 50,000 unit of D this past Tuesday morning….I took another 50,000 of D at noon today. I am itching all over the body and he wants this daily, again. …I don’t think so. This is it….Perhaps once a month for me but I cannot follow his rules. I cannot wait till I see the new Endo doctor (female) in October. This doctor needs to be put out to Pasture.

  119. the good thing is my thyroid test is normal and all the other blood tests its only the vitamin d deficiency

  120. So glad to find this website. I was diagnosed with hyperparathyroidism 4 years ago. My calcium was high at 10.8 and PTH was elevated at 70. Was referred to endo who said nothing would be done right now as I didn’t have kidney stones. So — had my PTH checked again in May this year and it was up at 113 and calcium was normal at 9.4. Went back to endo who did vitamin d tests and was found to be vitamin d deficient. My vitamin d 25-OH total was low at 11 and vitamin d 1,25 dihydroxy was high at 90 (normal 15-60). So now he has put me on vitamin d 50,000 units once a week for 12 weeks and have to have labs again in 6 weeks. Didn’t know until reading this website that vitamin d deficiency could cause so many symptoms. Now I know why I hurt and suffer from depression. Hopefully taking vitamin d will help. I was taking calcium with vitamin d but endo said that wouldn’t help. Thanks for the info.

  121. I think a healthier way would be to adjust your diet accordingly. Here’s a list of foods high in Vitamin D: http://www.billiondollarincome.com/foods-high-in-vitamin-d.html

  122. Lisarose says:

    BDI, some people cannot absorb vitamin D from foods, I was told. I eat a lot of Vitamin D producing foods and my D levels should be normal from this. I live in hot sunny Texas and I do go out in the sun to garden. Go figure why I am so low. )-:

  123. Lisarose says:

    Good article. Google or any search engine: Type in:

    “Vitamin D newsletter, January 2006″

  124. Quincydoc says:

    I’ve been following the national vitamin d deficiency epidemic for several years now, and getting people tested and recommending 2-4000 IU per day as maintenance. This is unverified, but I was taught that “a naked ape standing at the equator at noon would generate 50,000IU of vit d in their skin” ….this might indicate what our actual need is. or not. (cf Norm Shealy’s work) But I’d like to toss in a couple of other considerations for those of you who have been found deficient. You may be malabsorbing other micronutrients as well, the OTC vitamin products you’re taking aren’t reliable or standardized, and little oversight exists. There are only a few independent evaluators of supplement and vitamin products, but overall they find a lot to be desired in many brands. To further assess your intracellular nutrient status, look into a test by Spectracell Lab that tests blood cell nutrient levels. .Gut absorption can be impaired in many ways, and any deficiency condition should trigger a complete gastro evaluation and/or work-up. Antacids, Atkins type diets, macrobiotic diets, bacterial overgrowth, pancreatic and liver issues, etc can prevent adequate or optimal, nutrient absorption. A nutritionist can help sort this stuff out sometimes better than a gastroenterologist, just by taking a complete history. Integrative physicians will look at the bigger picture and try to get at the causes of the malfunction, detox if necessary first. But back to vitamin d: the Vitamin D Council is a scientifically based clearing house for VD info. online. Nemaste.

  125. Vicki M. says:

    Have VDD also. Was diagnosed last April at level 13. Went to barely detectable, less than 7 in October. Started taking 50,000 IUs weekly since October. Have only moved up to level 17. Am also taking another 1500 to 2000 daily. Want to know if anyone has had surgery while being low on Vitamin D and if it caused any problems with intensity in pain and delayed healing? Was told by my doctor that I would probably have much worse pain after my shoulder surgery because of the D deficiency?

  126. do u guys have the effect that ur heart beats so fast ?

  127. Hello everyone,

    I was extremely happy to find this thread. I received a call from my NEW PC’s office last week telling me that my vit d level was dangerously low and she wanted to start me on 50,000 D3, one a week for 8 weeks. I asked the “messenger” (don’t know if she was the nurse or the receptionist) if the doctor thought that this finding could be the cause of my problems…her response was, “I don’t know, I was just told to let you know about the vit D and that the Dr. wants you to have a re-check at the end of the 8 weeks. I was ticked off thinking that I had just changed doctors due to the incompetence of my last PC and now I was faced with someone just as bad!!!

    I knew nothing about this diagnosis so like many of you I googled VitD and found you! Thank you all for sharing your symptoms…it’s amazing to find so many of you have the same ailments and that I am not crazy or suffering the ill effects of getting on in years. I am 55 and have been miserable for the last two years. I have hypothyrodism and have been on meds for 25 years. I went through my change at the age of 32 due to surgery. I found that since this time my health has taken a slow decline and my weight has taken a slow incline!!! I am literally racked with pain from head to toe. I had to ask my husband to sleep in the guest bedroom a year ago because I couldn’t be confined to my half of a queen size bed. The pain in my arms and legs that keeps me awake at night is so bad that I have to stretch them across the bed or prop them up on pillows. I can’t sleep on either side because my hips hurt so much. I can’t roll over in the bed without grabbing onto the headboard. I can’t get up on my elbows due to the pain. My hands and feet throb with pain and yes, I too have the popping sensation in my shoulders. I seem to thrash around in the bed all night long never getting a good nights sleep which leads to other problems. This past February I had to quit my full time job…it was very physical and just couldn’t do it any longer. The weight gain has been horrible and dieting and exercise DOES NOT WORK! Thank goodness my husband sees how I eat and exercise because no one beleives me when I tell them I am doing everything possible to lose. Oh and I eat a very healthy high fiber diet with lots of vit D rich foods…go figure! It’s no wonder we are depressed!!!

    If nothing else, this new Dr. did find this problem (just wish she could of talked to me about it) and I am now on the treatment. I have only had one dose (without incident) and have not experienced any less pain. I know from what I have learned on this thread that it might take some time so I am willing to go the course.

    Sorry this was so long…I truly want to thank you again for the insight into this horrible affliction. I wish you all better days and nights!!!!!!

  128. Amna…

    About the heart problem. I had a period of about 6 weeks where my heart felt like it was in my throat and at night the pounding was so bad it was frightening. I also had tightness in my chest, this is when I was rushed to the hospital thinking I was having a heart attack. They sent me home with a questionable diagnosis of Cardiac Myopathy or Congestive Heart Failure. After seeing a heart specialist and going through ALL the proper testing it turns out I have bad PVC’s (premature ventricular contractions), which I was told won’t kill me but they will annoy me and cause anxiety and could mimic a heart attack…Great…so how do I know if I am really having one???!!! I was told to keep my stress level down, exercise and not to eat spicy foods. Now I find out that the PVC’s could be related to the Vit D deficiency!!! This is getting very interesting…

  129. so meg all that effect will go by the time the d goes up the level i mean

  130. Hi Amna,

    I don’t know…as I said my Dr. gave me NO information, what I have learned is from the internet…so I am hopeful!

  131. Does anyone know why weight gain occurs while on Vitamin D therapy?

  132. Leelee and everyone else in the same boat so to speak,

    Haven’t heard about the weight gain issue, but I was at the doc today and gained 6 lbs since the last visit, which is when I was prescribed the Vit D supplements. I know my diet needs work, but I’m not used to gaining that much in a few months. Is there anyone that can chime in about the theory that Vit D can cause weight gain??

    Also, any reason why people get prescribed 50k of Vit D at different times (i.e. weekly, monthly, bimonthly)?? I was told to take it once per week. I was also told that I would need at least 6 mo to get to normal. Right now, Vit D is on the lowest end of the spectrum and Iron is also on the lowest end. My Ferritin in 11, also very low… What, if any, is the correlation? Also, why hasn’t my doc. recommended a specialist like a hematologist, endocrinologist, or GI doc? How long is too long to wait for these deficiencies to correct themselves??? I know being your own medical advocate is important, but I am trying to trust my MD??? Please help:(

  133. Hello to everyone here!

    So I am not going crazy, that’s good to know. It seems that all of us have seen so many Dr’s and spent so much money having test after test done just to be told everything is within normal limits. I was just diagnosed with low Vit D (less than 7). I have seen so many Dr’s telling them I am in so much pain and have basically been told all of the MRI’s I have had show chronic arthritis, facetts disease, degenenitive bone disease, etc, etc, etc. I have been told that all of this should not be causing all the pain I am in. Unless you have gone through this NO ONE understands the pain which at times can be so unbearable you just want to kill yourself to get out of the pain. I too have passed out and went into convulsions with a rapid heartbeat only to be put yet on another RX…imagine that. My back, elbows, feet and knees hurt so much that I cannot funtion a normal life anymore. I have nodules in my face have night sweats, nausea, tingling, no energy or ambition, IBS which has pretty much confined me to my house, and weight gain just to name a few. I have been put on 50,000 IU’s a week for 12 weeks and will be rechecked in 8 weeks..I just started this 4 days ago and after 1 day of taking the Vit D I began throwing up and more diarehha. I do feel better today which is a plus I actually feel like doing something. I broke my foot 7 weeks ago and have been in a walking boot for 4 weeks and it still has never healed. I was told low Vit D can cause weak bones so to be careful. I actually was walking around with the broken foot for 3 weeks before I saw a Dr. I am just sick of going to the Dr anymore. I saw a new Dr a week ago and told her that if someone does not get to the bottom of all these problems she is going to find a dead person here soon. And I was so serious. Living like this is no life and she started from the beginning and wanted to know how I felt, and all the tests I have gone through and so on and so on. She ran all kinds of tests and found that I have a low Vit D and a false negatative Hyperparathyroid count..Not sure what that means if anyone else can enlighten me on this I would really appreciate it. I am 47 yrs old and I truely feel llike I am 90. I have felt so horrible for so long that I cannot remember when I felt well. I have seen internests, nephrologists,neurologists and no one has ever tested my Vit levels how amazing is that. The neurologist that I saw actually told me that I wasn’t sick that the only people in her eyes that are sick are people with Malaria and Cancer and that I had neither therefore I wasn’t sick. She told me I wasn’t in pain to just go out and walk through the pain. I was so lived when I left her office I just broke down crying talk about severe deperession! I asked her if she has ever been in chronic pain and she said NO I then told her then don’t tell me I am not in pain she isn’t living in my body…I have restless leg syndrome so addf that to all of the other problems and needless to say I do not sleep much through the night. This last episode I just came back from Philly and I knew I shouldn’t even go it was for work so I felt I had to. I spent most of my time in the hotel. The flying sent my body into a pain that I cannot even describe. I came home and have been in so much pain ever since. I told the Dr’s about this and no one seems to know or heard of this. Has anyone else flown and been in the pain I am in? I beleive the compressurized cabin did something to make my bones and muscles hurt. It really amazes me how people really don’t understand the fatigue, pain and abilility to do nothing. I am not a lazy person have been one to always be on the go from sun up to sun down and now stay in my house most of the time. I dread going back to work in 3 weeks as I am a school cook and the work is very demanding and I am not sure how I am going to get through it. Last year I went to work and had to come home and nap. I am also being test in a few weeks for Neuropathy because my feet hurt so much. Like so many of you getting out of bed is a chore. Just to stand up after being in bed is excruciating pain. The things I use to enjoy doing I no longer find enjoyment in. Sorry this is so long but if this can help someone then it brought some good. I have read everyone of these replies and it has helped me tremendously. Thank You to this great sites. All of the other sites I have seen says that this doesn’t cause any pain (low Vit d) Ya sure. I would gladly trade my body for one day to those who say it doesn’t……Good luck to all of you let’s keep in touch with progress…

  134. Amna dont be in a hurry to get better. Vitamin D is now considered to be a catalyst for many many bodily functions. It does affect parathoyroid too. So many things dont function properly without it. My suggestion to all of you is to at least get about 20 minutes of exposure to sun every day. This is safe enough time to avoid skin cancer. There is nothing like the natural God given things. Who knows what else sun light does in our body that we dont know about and we need that.

    When people are sick and depressed lot of people worry so much that they start having lots of other symptoms like low or fast heart beats. Do get them checked but keep a positive mental attitude. Do take good vitamins and minerals supplement. Eat well and try to sleep well.

    Finally, have patience and stick to medications that the Dr tells you too. There is no harm in consulting other Doctors in the mean while but dont tell the personal physician until you are sure. One of the best thing is that you now know what is the cause and that it is not all in your head.

  135. Is there anyone on here that has been diagnosed as having Celiac disease or any other that would not allow them to absorb Vitamin D from either the sun or other therapies and or supplements?
    If so how long were you on therapy and or supplements, what amounts, and for how long, before you were dxd?
    Thank you as always for your replies.

  136. Lisarose says:

    Lee, one fo the first tests they did on me when they found my Viutamin D LOW and my Parathyroid High (PTH) was a celiac blood test. They also did a Carotene test (Vit. A) Both these tests came back normal.

  137. http://parathyroid.com/

    I think everyone if you haven’t already should take a look at this website. I just came back from the Dr. again and was definetly told I have Hyperparathyroidism and need to get into a Endo ASAP. No one on here has said whether they have had their parathyroid gland out or not. It seems to me for all the problems it causes why are not any of you having yours taken out. Just curious as I am new to this site and just recently posted a reply earlier today. Is there anyone on here that has had theirs taken out? If so please respond….Thanks for your help….

  138. Hi everyone again. I just came back from the Dr and was told I definetly have Hyperparathyroidism and need to have my thyroid gland out. I have not read on here as to anyone that has had theirs out. Is there anyone oln here that has had their thyroid removed? If this is the root of all our problems then why hasn’t any of you had yours removed? I am just so amazed at all the problems this thing has caused and I am more than glad to have mine removed. I was told today that I need to get into an Endo ASAP. I can’t get into one until Aug 18 but in the mean time has anyone looked at parathyroid.com? This website makes so much since to me and just wondered what any of you thought about it. Please respond back if you have any answers. Thanks for your help….

  139. Kim sorry to hear you have gain unwanted weight. From my reading and as you read weight gain is assocated with Vitamin D treatment, I hope someone can answer our questions and maybe give a reccomendation.

    Lisarose thank you for your reply. I checked all my labs and it looks like I have never gotten either of those tested. My Endo did say that if at my next appt my numbers were not better he would do some further testing so I am hoping that he will do so. The reason I ask is because I have been on treatment since March with no improvement and I am wondering if there may be other reasons as to why I am not absorbing Vitamin D.
    Wishing you all well.

  140. I don’t know why people gain weight, but my research indicates that once you’re on Vit D regimen you will ‘ose’ weight. I wonder which it is?

  141. Jan I am not sure what why a person would gain or lose but I can say that sometimes when I take a 50,000 units I get a little hyper. My weight has gone up. Before I started taking it I use to get this terrible need to eat and now it has seemed to be more manageable with the treatment.

  142. How are you doing with the Vit D capsule. Was it 50,00 IU? Have there been any side effects? I haven’t started on mine yet. And I, too have drenching sweats, where I’m absolutely soaked… It would have to be from another prob, tho, since I have even started the Vit D yet. You may have to ask you GP to test you for Vit B12, tho, like I did. Had I not done it, I’d have never known my levels were so low, and that I needed weekly B12 injections of 1000mcg. Keep us posted.

  143. Jan, Yes it was 50,000iu’s . My side affects were dizzyness, upset stomach, hyperness, light headed, creepy crawly sensation, pins and needles sensation, depression, hot and cold all the time… and thats all I can think of right now. I am seeing a really great Endo and I have tested low for Vit B, and am taking supplements, I am also anemic and I am borderline Hyperthyroid.

  144. Kathy- I could have written some of your original post-the pain, night sweats, dizzy spells. Do you know if that is due to your thyroid or D?

    Can you guys describe your joint/bone pain? Mine is slowly getting better but still pulsates and the pain moves from place to place but not as often. That makes me think maybe it IS the D, or I will attribute it to possible colitis. Getting GI scope on Friday so will know if my digestive track issue is causing the bone/joint pain………….

    I know that my meds for GERD is what has caused the lack of D absorbtion in my body. Getting my D tested again in a couple wks.

  145. thanx meg u gave me hope =]]]

    and im sure it has effects on everything in the body

    but the problem its in my head…

  146. When I first went to see my Doctor a year ago my D level was a 10 and now it’s a 28. I’m still having major aches and pains throughout my body. I’m see a Rheumotologist, but we are getting no where. I hear a vitamin D level should be over 50. Does anyone even know?

  147. Marianne,
    Every lab is different so they have different ranges. But I guess you could say that 50 would be a great number to be at.

  148. Marianne- my D was at 28 and I keep thinking my pains may be from this though my dr said its doubtful…however I have been tested for most everything else.

    Can you describe your pains? Do you feel pulsating pains in your joints that migrate from place to place?

  149. Lesley: I have the pain and joint popping. Got worse and worse. Am a former yoga instructor…have never had stiff joints!

    You should consider fibromyalgia, and find a Dr./rheumatologist who is current with treatment options. I was diagnosed FM and D deficient…am noticing they seem to go together for many.

    If anyof you don’t think you have Fibromyalgia because you don’t have “11 of the 18″ markers….you should seek a 2nd opinion. I don’t have any…my symptoms are more skeletal than muscular, like Lesley and others. But FM treatment is having fabulous results!

    For anyone in pain…don’t wait 3 years to get treated like I did! Don’t think you are “getting old”. Don’t try to figure it out yourself….just seek treatment. If you don’t feel well, something’s wrong. Find a Dr. who is on the cutting edge of these issues.

    Best of luck and well wishes to you all!

  150. Marianne, my d is at 28 and I have pain.

    Is your pain pulsating and migratory?

    Also, my joints are cracking like crazy

  151. Today was that time of the week for me to take my 50,00 iu’s and boy did it really make me not feel good today. I was so nasuaus, light headed achy all over. My feet hurt when I first stand up I get pains in them. I have not strength in my hands and my legs get so cold so easy and then they start to ache so bad. I also experience like menstral cramps. I dont know whats going on. But later in the day I did feel a little better.
    A tip I was going to share if I did not already when you take your supplement make sure and have a full meal and I mean a full meal.. not just a little snack it really seems to help most of the time.
    I really wish I would start feeling better soon, and you all too.

  152. Michelle says:

    Hi Lesley, my joint pain is typically in the shoulder joints and neck, spine, and feet. When I get out of bed my feet hurt and I have to walk carefully because they are tender for awhile. Sometimes if I am on my feet for awhile (an hour maybe) they hurt and I have to get off them (as if I were on them all day). I get sharp pains in the long bones (thighs mostly, sometimes arms) which last in each area for 2 days or so. Then there’s the general fatigue and feeling like I need a nap every day, sometimes I fall asleep in the middle of the day and wake up hours later. I have taken my third Rx D (weekly for now) but so far have had no side effects. I am just very happy that the problem has been identified, it will take a while to feel better, we have to get our levels up and then our system will begin to repair itself. I hope you feel better soon!

  153. Michelle and Lee- Wow, I really now think that maybe my low D, even if it is 28 (even if it is 28) is the result of all of this! If my scope comes back okay, I have to attribute it to this because I have been tested for EVERYTHING else, even a darn bone scan! Soemtimes my toes hurt just for 5 min, other times it is one finger, other times my wrist will pulsate for an hour. The pain just moves around and at times just stab certain areas.

    Anyone else get tinglig/buzzing in their feet?

  154. Oh by the way, speaking of the spine pain. I have gotten a few deep stabs in my spine (about a month back) it almost knocked me over it hurt so bad. Well now, I have this “sore” spot right where my bra stap clip hits…..very odd

  155. Hello, and thanks to you all for writing in. I’ve been reading your comments for the last couple of weeks since my endocrinologist’s office called and wanted me to take yet another test…this time for Vitamin D deficiency. I took the test last week and they called today to tell me my level is 16. I picked up the prescription for 50,000 IU Vitamin D pills, and took the first one today. Supposed to take one 1 X week for 8 weeks, then 1 X month for 2 months, then recheck.

    At age 40, I had a total abdominal hysterectomy (fibroids the size of cantelopes) and reconstructive bladder surgery in 2000. Since then I’ve been going down hill…chronic fatigue,”phantom” stabbing pains in my lower abdomen, massive hair loss, hypothyroidism w/large thyroid nodules, high blood pressure, loss of muscle mass (I taught aerobics up until 2000), severe joint pain especially in my knees and lower back, depression, weight gain and can’t seem to get enough sleep. I have been having back pain so severe that I have been flat on my back for days. I have a very high tolerance to pain, having had an 11 2 1/2 oz. baby naturally, for example. I am not a hypochondriac, but felt like everyone thought I was because I had so much to complain about. I have felt like my friends and family thought I was a whiner or just plain lazy.

    Over the course of the last 7 years I’ve told my doctors I feel like I’m going “down” and also something similar to what many of you have written…I feel like I’m 90 years old. The doctors have all pretty much run the standard thyroid test and said, you’re normal and to continue to take the same amount of Synthroid. Then, after running down all my symptoms yet again to my gynecologist, he finally listened and referred me to a wonderful endocrinologist. She’s ordered many tests and although still have a couple more to do (one of which is a thyroid biopsy as my mother had thyroid cancer), I feel like at last there is something concrete we can point to and try to fix. When I turned 48 recently, I said that this was the year I wasn’t going to the doctor merely to be sent home with a handful of prescriptions and a pat on the back. So I kept pushing and it’s paid off, hopefully.

    I will write back in during the weeks to come to let you guys know how the Vitamin D supplement is working. Thanks again to those who have posted their stories here. It made me feel not so “crazy” to know there were others out there going through something similar. I hope you all feel better. Talk to you soon….

  156. Michelle,
    That is the same way I am when I get out of bed in the morning, my feet hurt so bad just as you described. But then a little while after being on them its not as bad.
    Lesley, It sure seems as if you are suffering from VDD, please take care, even at 28 I am sure a person would still not feel good. Andd yes I get the buzzing, tingly thing in my feet, so weird I wonder why? And stabbing pains I get them all the time in different places.

  157. I am just wondering if a deficiency of Vitamin D would make your skin very dry? AFter I started taking the supplements the cracks in my feet have gone and are not rough anymore.

    Lee: I do have wheat intolrance so much so that I have not eaten wheat in 4 years. It is not Celiac Disease though.

  158. Thanks for responding to my questions of possible side effects on 50,ooo IU (I’ll be taking once every 2 wks). I decided to try taking Altace, a blood pressure med Tuesday when my DDS had refused to do my dental procedure due to very high BP levels. He sent me home . Can’t blame him. I have to appreciate that he was looking out for my best interests.It was a new med for me,too. But I had a super-duper side effect and am still trying to mend from that. This is what usually happens to nearly every med or vitamin I try. I’m soooo sensitive. I do so much better on short acting things. You know, I’ve found that Vit B12 and Vit D deficiencies have similar symptoms, with pain, balance, nausea, etc. I’ve maxed out on my pain meds and can’t take a higher dose, so I knew, deep down, that these high pain levels had to have a more difinitive answer. I just didn’t know what ! & tho I haven’t had the lab test for it, I’m nearly positive I have a malabsorption problems cause I’ve had Celiac Disease for 3 yrs now. I have my annualphysical the 14th. I’m very faithful to my diet, but it’s a bad case of it. My mom had it as does a sister. I’ve gotten very thorough info from this board. thanks all. PS When you had side effects, did they last long? or go by quickly?

  159. Matt: I have had very dry, flaky skin and scalp too, but not sure it is because of the Vitamin D deficiency. That is a good question which I will be sure and ask my doc next time.

    Jan: When I picked up my Vitamin D script yesterday, I asked my pharmacist about side effects. All he said was that I should take the pill with a meal and not to take any antacids with it. I took my first pill with a full meal yesterday(about 24 hours ago) and have not had any stomach upset so far.

  160. LeeLee -thanks for your feedback. Wonder if the feet buzzing is due to the lack in D. I am sure my pains are–they seem to vary from day to day.

    Get my scope tomorrow so I should have more answers.

    Does anyone else now notice joints cracking?

  161. Lisarose says:

    Hi Kathy, you mentioned that you have HYPERPARATHYROIDISM and need your thyroid out. With HYPERPARATHYROIDISM…it is not your thyroid that has to come out but one of the PARATHYROID glands that needs removing. (there are normally only 4 of these Parathyroid glands) Now, if there is a thyroid problem also, the surgeon may want to address this also. Please be sure you understand what your doctor has told you. Also with HYPERPARATHYOID (not the same as THYROID) your calcium levels are high. Your PTH (parathyroid) levels are high, also. I am going thru this right now. I have read Dr. Norman’s site several times. It is interesting but also confusing. If you truly have a Parathyroid Problem and all the testing prove this to be true, find an experienced surgeon that does the Mini surgery like Dr. Norman does. No, I will not travel to Tampa if I truly have a Parathyroid tumor as I have one of the best head and neck surgeons in America right here in my city. We are being cautious as it is still IFFY if I truly have a parathyroid tumor even through the PTH is elevated and Vitamin D is in the cellar. My Calcium levels are all Normal. Good Luck.

  162. lesley

    is it normal for a vitamin D deficit

    to feeel down and tired all the time and not in the mood to jump around like a normal person ?

    and what is brain fog and anxiety?

    is it leading to V D ??

  163. Just got diagnosed with severe Vitamin D deficiency. Dr. is sending scripts that he wants me to take for 3 months and then get it checked again. I have had IGg deficiency due to pregnacy, then IBS, then fibromyalgia and the list goes on and on like all of you. I started eating small meals every three hours. High in fruit, veggies and fiber and all of a sudden I am feeling much better. My blood sugar is now normal-no more diabetes, my blood pressure meds were cut in half and I dropped 20 lbs without exercising. So when the Dr. told me that I had this I thought it was no big deal. But I checked another site-for MD’s and it saids that vit D deficiency is a sign of underlying illness (i.e. cancer, lupus, MS) and treating it, only covers up the disease process. I just had colon surgery 3 weeks ago and hope to return to work in a couple of weeks and 4 hyperplastic polyps removed. Now I am scared that this could just be the tip of the iceberg. Has anyone heard anything more about this theory???

  164. Matt, thanks for your reply I was just worried since I have not been absorbing the D that I may have Celiac Disease, but I guess that is not always the case, like in your case.

    Lesley, Yw, that may be ther reason for the buzzing in our feet, like with anything I guess we will have to wait and see.

    Does anyone else have the creepy crawly tingly thing?

    Dry skin? yes I have that too, on my scalp on my feet, wow they are very dry and cracked but that may because of flip flops?

    Amna I have heard of alot of people with VDD to have mood changes at least I do and the depression yes it is associated with VDD.

    Helen, I just wanted to mention that sometimes pregnancy triggers certain things, this is true in my case.

  165. leelee

    thanx for ur info
    but leelee, depression is the same as mood swings and anxiety??

    and does any1 of u suffer from anxiety that is associated with vdd

  166. Matt i have checked my heart by the echocardiovuslclar and its all normal i now take tablets for the palpitation and it made me feel alot better

    but now heeres a question ,

    do any1 of u get tinglings in nose and the side of ur face or in the head ?

  167. Amna,
    I guess anxiety and mood swings could be associate with Depression but I have always defined them as being a bit different wheather that is correct I do not know. They are all hormonal imbalances.

  168. after reading a lot of the messages here i would recommend that anyone not getting results from their regular doctors should look for a good naturopath.
    i have had more help from my naturopath than any of the regular doctors i’ve gone to over the years.
    she was the one who identified that my pancreas wasn’t producing the enzymes it should and that i had the h. pylori bacteria. regular doctors just put me on protonix because of the acid reflux it caused. once the h. pylori was cleared up i haven’t had reflux anymore.
    now we’re working on my vitamin d deficiency which may have been caused in part by my years of bad digestion problems.
    last october when she first had my vit. d level tested it was 14. she had me start taking 4000 iu’s of d3 for the first month and then 2000 until we tested it again in february. it had only gone up to 22. so i took 4000 iu’s for the next few months. in june it was up to 32.5 but she wants it more around 70, so i’m taking 6000 iu’s a day until we test it again in a few months.
    even though it isn’t up where she thinks it should be i have seen improvements in my health so far. for years i had an erratic heartbeat that landed me in the ER 3 times. that almost immediately cleared up when i first started taking the vitamin d. i have also noticed that my skin is better, especially the bumps on the backs of my upper arms have smoothed out.
    vitamin d isn’t really expensive and i always buy it when the stores have the buy one get one free vitamin sales.
    it’s not like i hadn’t been taking a normal amount of vitamin d before. i always took a multi that had 400 iu’s in it and a calcium/magnesium supplement that had another 200 iu’s. i guess some of us just don’t absorb it very well. especially if we have digestive problems or are overweight like i am.
    i am so thankful for my naturopath. the regular doctors just would basically tell me there was nothing they could do, like my problems were in my head. my naturopath treats me as a whole person. she looks at what i eat and what my life is like and orders tests to really get to the bottom of things.
    so i would say “get thee to a naturopath”!

  169. anma- yes I hear low d causes lack of energy depression and anxiety.

    My scope came back ok. Oddly my joint pains have subsided alot maybe because I have been taking alot of d and its finally working-that is if that has been my issue. Still get buzzing feet and muscle twitching.

    Anyone else notice excessive cracking joints with this?

  170. les

    nope not really i havent experience that

  171. Ive read a site which says that lack of calcium affects the nervous system which lets it to lead for anxiety and depression so by taking enough suplments of calcuim and vd it will cure it all

    and good luck to all

    now i feel alot better by taking my supplemnts and cant wait to get healthy again by the way i am only 15 years old =] which too young for all that =]

  172. Kat, thank you for your advice on seeing a naturopath. I am considering doing exactly that as soon as I can. I went through 12 weeks of acupuncture recently to treat pain that I was having in my right shoulder due to a fall that I had in Jan.2007. The acupuncture really helped take a lot of inflammation out of my shoulder and gave me back some ability to move my arm. I also did not have to take all the painkillers the doctors were pushing because acupuncture helps with pain. I was told that I had a torn rotator cuff, bone spurs and arthritis that had settled in the bone. Anyways, I just had surgery on Mon., August 4th and I am happy to say that it went well. I was very nervous and worried that it would be very painful because of my Vit. D being so low. I had been told by the doctor that I would have more pain because of the low level of D. However, with acupuncture removing the inflammation as well as providing relief, and waiting a couple of months more before I had the surgery, the cuff somehow healed on its own. They only went in orthoscopically and removed the bone spurs and shaved the bone to try to remove the arthritis. Maybe that’s why this hasn’t been so bad. Acupuncture, homeopathy, nutritionists, etc is exactly what I am looking into to help heal my body. I have read all of these blogs on this website and I have been dealing with almost all of the same symptoms and I am tired of relying completely on Western medicine to get better. I have been taking Vitamin D supplements ever since I was diagnosed in April of 2007. The doctor told me to take a multivitamin in April and 1,000ius daily…. and I was at a level 13. My oldest daughter talked me into taking 2000iu’s daily instead. They tested me again in August and my level had dropped. By October of 2007, they couldn’t detect any Vit. D in my body. So, they finally put me on 50,000iu’s a week. In addition to that I take 1,000iu’s of D daily, along with another 1,000ius with calcium of 1500iu’s. So, I am really taking a total of 64,000ius weekly. It came back up to level 18 at the end of June, and then last week it had dropped back down to level 17. I garden a lot, except for the last couple of weeks and I think that may have caused it to drop because I wasn’t out in the sun very much. I have had anemia my entire life, even when I was a kid, and B12 deficiency off and on too. Like most of you, I am sick and tired of being treated like a nut case, like I am a hypochondriac, or being dismissed with another prescription of pain medication or an antidepressant. The acupuncture helped clear up pain that I was having in my feet and elbows, and also insomnia. I think there also could be a special diet that might help with absorption of Vit D. So, I am going to see a naturopath in San Francisco and will keep you all advised of my progress. I AM going to get better!!!

  173. I only recently learned that it is important to take calcium supplements to help with absorption of Vitamin D. I wasn’t taking calcium for several months and I have upped my intake of that. Also, I gave up coffee last October and rarely have anything with caffeine at the insistence of my son. He used the argument that Vitamin D helps with the absorption of calcium and since I didn’t have enough of D, that calcium probably was not being absorbed either in my bones. And what does caffeine do? It leaches calcium from our bones. And, by the way, I recently learned that if you have a calcium test when you have a Vitamin D deficiency, the calcium test will show up normal, because our body pulls what it needs from our bones into the bloodstream. However, I did have a bone density test and scan back in the fall, and I have osteomalacia which is a sign of the bones weakening, thus lots of bone pain and feeling like they could fracture at any time. So I advise, “give up the caffeine.”

  174. yeah vicki me2 i gave up caffeine cuz its bad for the bones and for the heart rate

    foods and drinks which contain cafeine is all sodas and chocolate and coffee,tea and these kind of things

  175. my supplemnts are all once a month for 3 months and its 300 000 IU

    more thaan all of u i guess

  176. remember all, that you shouldn’t take calcium alone. you should have a good balanced supplement that has magnesium in it too. and get plenty of potassium. if you take a bunch of one mineral it throws off all the rest of them. low magnesium or potassium can cause a lot of pain too, so that could be part of the problem that some of you are having.
    even if your blood tests show you’re in the normal range for some of these minerals and vitamins it doesn’t take into consideration that every body is different. some people probably need to be at higher ranges to be their healthiest.
    that’s why i recommend a naturopath. they (or at least the one i see, she’s great) seem to spend more time with you trying to find the best solutions for each individual.
    the regular doctors i’ve gone to over the years seem to want to treat the symptoms and not do any detective work to find out what’s causing them. they always have their prescription pad at the ready whether you want a prescription or not.

    are the high levels of vitamin d that some of you are taking vitamin d3? just wondering. from everything i’ve read and what my naturopath says d2 doesn’t do us much good. it has to be d3.

  177. I’ve just spent a couple of hours reading all these posts and am so relieved that I’m not crazy. I was really starting to wonder – I have always been energetic and active, eaten right (generally), but the last year or so, I have been so tired, achy muscles, feet hurt to stand on, feeling depressed, tingling in my arms and legs. It got worse in the last couple of months to the point that I thought I had fibromyalgia. I think my husband was doubtful that anything other than stress was causing my symptoms.

    I contacted my doctor and told her I was concerned about FM, and she immediately ordered blood tests and a vitamin D test. If I didn’t see the results, I would have never believed that all this can be caused by VDD. My Vit D is 16, and she has prescribed 50,000 IU once a week for 6 weeks for me, with another test after that to see what the results are. I have taken 3 so far, so I’m halfway through. While I still have the aches and stiffness, I’ve noticed the tingling is not quite so pronounced and I’m sleeping through the night instead of waking up. I’m still tired, especially at the end of the work day. I work a 10-hour day, and have been taking 1-2 days off of the four just to conserve energy. I hope this works, I don’t know how this happened. I got some sun before, but like alot of you have been concerned about skin cancer so I don’t sunbathe, but I do go out on walks. Guess I was still too covered up. I am lactose intolerant, so no milk or cheese in my diet, but I guess I didn’t eat enough ice cream to make up for it :) I am also trying to get a bit of midday sun 30-45 min. as often as I can.

    Hang in there everyone. So far, I am relieved to at least find out there was an actual chemical, testable reason for the way I was feeling. My doctor tested me for Vit. D because she said that VDD symptoms mimic those of FM. However, I see from other posts that some of you have both at the same time, or still have FM even if your D levels have come back up.

    I’m glad to have discovered the rest of you – it means alot. Also Matt, I agree with what you say, and we just had our mercury fillings replaced with the white material. Sun and food should be the best way to stay healthy. I know I did well on the food end this past year because I cut my cholesterol 30%, LDLs down, HDLs and Triglycerides very good, to really healthy levels, so I was really surprised to learn of the VDD.

    Anyway, sorry this is so long, but it’s great to know you’re all out there and give so much support.

  178. hi Vicki- try the IMT center in sf. I live in sf and go there as does a friend of mine. I have not been able to go lately but think it works

    Cindi- does your tingling kinda feel like buxzing? Never had that the joint cracking or muscle twitches till all of this joint pain

  179. The IMT Center in San Francisco? Is that an abbreviation or the actual name and where is it located? Very interested in hearing more about it. Also, just to let everyone know, my oldest daughter is the one who researched and insisted that my doctor test me for Vitamin D deficiency last April. The doctor really didn’t want to do a test, but I was having a lot of crazy symptoms and felt very ill. Anyways, my daughter recently went in for a lot of blood work because she and her husband are ready to have a family. Now, my daughter should be the poster child of what the healthiest, fittest human being in the world should look like. This girl eats the recommended 6 small meals a day, is a size 4, goes to yoga and pilates classes on a regular basis, attends the gym, walks during her lunch hour in San Francisco, takes vitamin supplements, gets regular massages and spa treatments, has a wonderful husband, no real stress. And she is Vitamin D deficient!! Needless to say, we both were really shocked. What the HECK is causing this?

  180. well some people like my friends sister her level of vitamin D is 5 and she didnt feel any of the symptoms we had felt in the begining , so i guess its all from the body immune system.

  181. Les – The tingling in my feet, arms and legs feels like strong pins and needles. The wierdest is in the bottoms of my feet, like all across the bottoms. I kept thinking I was pinching a nerve somewhere, but it would just happen, even if I am relaxed and nothing’s pinched. Since taking the 50,000 IU pills, the tingling is less often now.

    I have mentioned VDD to two other ladies I work with today, and they are amazed that it exists. They have felt the same way, and their doctors had given them thyroid test and anemia tests with normal results. They were just chalking their symptoms up to “old age (we’re in our late 40’s-50)” or premenopause and suffering through it. They will be asking for Vit.D tests now.

  182. http://www.mayoclinic.com/health/drug-information/DR602171

    Really good article for anyone taking Vitamin D.

  183. Vicki- The IMT is intergrated manuel therapy, but it is the IMT center on Bush st. The person I see, Jen, got into this because she had lupus and doctors were not helping. She discovered IMT in Napa, went there and was “cured” of Lupus. To this day it does not show up in her labs now. I have heard a few success stories on this. It does take a few times to start noticing a difference. I am not a believer in this type of medicine, but think I felt a difference last time. I however have been traveling so much that I have not been able to go back.

    Cindy- Interesting about your tingling. Mine feels as though my cell phone is on vibrate or something. Also, lots of muscle twitching and joint cracking. Wondering if some of this is due to the recent high stress in my life.

    I am very active as well, weigh 103, am 5’5 eat healthy etc… and was taking a supplement, and consuming dairy when I found out I was low on d (granted I am not that low). I think mine is due to my GERD medicine, aciphex, as a side effect is malabsorption of D…

  184. It has been helpful and comfirming to read all your comments. Thank you for taking the time. I found out my level was 16 around the 1st of July this yr. and have been taking 1000 unit twice a day. Feel better but it is slow recovery. Just received new test and level is 16.2. It has been about 2 years after Chemo/Breast Cancer, I though it was that, keep getting worse, thought I was dying, am 55, felt like 85. Going to Doctors all the time, no one checked Vit. D., went to Podiatrst, he asked questions, LISTENED, and tested for Vit. D., God works in strange ways! I don’t know what will happen in the long run but I do feel noticably better today.

  185. Jean omg i kinda had the same problem you had about no1 figuring out whats wrong =(

    i stayed for 2months tired honey but now i feeling alil bit better well much better

  186. Thank you for the great information. I just had a full physical last week. And while all my other tests came back great my doctors nurse said my Vitamin D was dangerously low (her words). They are prescribing a medication for me (i will pick it up tomorrow) & I have to take two 1000 iu’s of vitamin D a day. They will recheck me in 6 weeks. I have RSD and fibromyalgia. I am very tired alot which I thought was due to the large amount of narcotics I take but am hoping once the vitamin d deficency is taken care of this may help that problem. For hose of you not familiar with RSD its reflex symapthetic dystrophy or complex regional pain syndrome. Esentially my central nervous system is a mess. The nerves constantly send messages to my brain telling it I am in pain. This started because 18 years ago I crushed my hand & 2 1//2 years ago I needed carpal tunnel surgery then BAM! PAIN! That never went away & wouldnt stop. It took a year before doctors finally figured out what was happening. I didnt realize until I read the information on a couple of sites how serious a vitamin d deficency could be. I am glad I have a good doctor. Good luck to everyone. And feel better.

  187. Does anyone have a good doctor in the Houston area? I located two more ladies similar to me who are also looking for a good doctor in Houston. Thanks.

  188. Denny:

    Don’t under estimate the vitamin D deficency, the complications and varied symptoms are huge. It’s easy to look at a major illness and blame that, that’s what I did. Give it time though, my treatment has been about 6 weeks and I am just slowly starting to feel a difference. It looks like that is common. It takes time. It is also possible we have had these deficencies for a long time. I don’t know about you but I do not believe this was ever tested before on me. Before chemo I went to the gym 6 days a week now I can bearly work sitting at a desk. Hoping for sucess and Wishing you good health! Thank you for this web site, it has helped!

  189. jean, you should talk to your doctor about putting you on a higher dose of Vitamin D. When I was first diagnosed with this, I was at a level 13. I started taking 1,000ius for about 2 months, and then my daughter convinced me to take as much a 2,000ius daily for several months. Anyways, I was tested in October after several months of doing this, and they could no longer detect Vitamin D at all in my body. And, I felt terrible pain in my bones, had no energy, felt like I could die at any minute. I finally saw an endocrinologist and he told me that our bodies use about 1,500ius daily. So, that’s why I could never get built up. I have been on 50,000Ius weekly since the end of October with an additional 2,000ius I take daily. I also am out in the sun quite a bit as I like to garden, and I walk on the days that I’m not too tired. Last test, I was at level 17. Please don’t let them jerk you around like they did me for months. Get on a higher weekly dosage and then also take 1000ius daily over the counter D3, in addition to a calcium that D in it.

  190. Sorry, I didn’t make my last statement too clear. Take 2 calcium pills daily, that has 750mg of calcium along with 500ius of day along with the D3 that has 1000ius. Then you will be taking a total of 2,000ius daily along with a prescription of 50,000ius a week. The doctor told me it takes a very long time to build D back up in the body. But be sure to have your blood tested every couple of months so that you know what your level is and you don’t go over the level 100 in your body. Then, it will become dangerous and toxic. Calcium supplements are important to take along with the Vitamin D.

  191. 750mg of calcium supplement that includes 500ius of D

  192. I was just tested again after being on mega doses of D and it brought the number up from 8 to 24. (they would like to see it above 30 and remain there) I will be on a maintenance dose now.
    The PTH is still elevated but down a bit also. Vit. D deficit can cause heart disease they said, on the news last night, among other health woes. I am also a heart patient.

  193. lack of calcium is assocaited with VDD and it causes anxiety attacks and all other issues that also vitamin d does …

    in a normal person atleast calcium should be 500mg like me be4 i got treated in one month its only 300 000 IU without any calcium supplemnts thats why i felt really tired and my heart rate was increased this was due to my lack of calcium and it also causes sleep disorders

    so everyyyyyyyone make sure you take calcium with vitamin d cause it will help alot beleive me ,..

  194. besides vikki ,

    you know my level was 6 and it was severly low.
    your level was 13 and u felt u couldve die in any minute, can u imagine how i felt .. oh my god it was terrible fatigue i had !

    like for 3 months they didnt noticed that i was low on vitamin D

    thanx to my endocrinologist

  195. Vicki M & all:

    Thank you for your imput, I have a long way to go here. Just started with the calcium yesterday. Thanks for your input. My doctors office gave me the wrong test results. I spoke with them yesterday. I started at 16.2 July 9 and Aug 4 was 21. I am taking 1000 units x2. I believe I should speak with my doctor and take more, which I will do. I have three different Dr.s and am refered to my General Practioner which I have not spoken to yet on this issue. (though he received a copy of the original defficiency report) I also need to focus on the amount of calcium needed. Thanks for the input, have to run, will get back to it later today.

    Once again thanks Vicki M & thanks to all for your help. I feel like I am going forward. I appreciate it!

  196. So glad I found this site. I was diagnosed with fibromyalgia about 10 years ago. I had been in somewhat of a remission and doing well until about 2 months ago when I just seemed to crash. The fatigue was unreal and the body aches were incredibly painful. I avoid the doctor since they typically attribute fibro to being all in my head. He said he had been doing some research on fibro and decided to test my vit d level. It came back 18 and he started me on 50,000u a week x 8 weeks. I finished my 8 weeks with no real increase in my energy level, but the body aches are somewhat better. I just got my second results today and my level is up to 40. He wants me to continue on 50,000u every other week for 8 weeks and then retest.

    I’m just glad to have found this info here. Thanks to each of you for sharing your story. I know its not all in my head!!!!

  197. Wendi when it increased to 40 did u feel better?

  198. Troy Suzann says:

    Wow– I am so happy I found this site. I have had many of the same symptoms as a lot of you on this site (especially Debby with the pins and needles in hands and feet) and getting very frustrated with the lack of results I was getting back from the test my GP and Neurologist had ran… no answers there. I finally went to a endocrinologist because my TSH levels were a little high and my calcium was low– my doctor didn’t seemed to concerned so I thought I would get a second opinion… My endo ran another set of blood test and found that my vitamin d levels were extremely low for someone my age (45) and for a person who lives in AZ. He started me immediately on 50,000 IU of D once a week for 3 months. I am also going to have a bone density scan done. If my levels of vitamin d do not improve then he plans on sending me to a gastrologist for intestinal tests…. I noticed he also has a celtic blood test on my follow up lab work in 4 months. — Is this some of the samethings your doctors have done?

  199. Hello everyone!

    I’m so glad I stumbled onto this site! I was doing research based on some family medical issues that came to a head this year: my mother was diagnosed with severe vitmain D deficiency, auto-immune disease, Parathyroid disease, Hashimoto disease, Thyroid disease and after having one parathyroid gland and her thyroid gland (and a couple tumors) removed in May, they diagnosed her with lymphoma cancer. Her endocrinologist suspects that, aside from a family history, if her vitmain D deficiency had been caught earlier, she may have been able to head-off the onslaught of some of these other issues.

    Due to her family history, her endo recommended that her children be tested. My sister (9 years older than me, I’m 34) went first and tested positive for severe vitmain D deficiency, auto-immune disease, parathyroid disease and hashimoto disease. My blood tests came back with a severe vitmain D deficiency (level of 9), but no indication in the bloodwork of the other issues (thank goodness).

    I had been blaming my lack of energy, fatigue, lack of interest in friends/hobbies/dating etc to just being overweight, stressed about finances, working 10+ hour days, my mom’s health problems and the usual life stuff. My Dr. put me on 50,000 units 2x/week for 3 months, but thinks we should pursue the possibility of me being “depressed” because she doesn’t believe that a vitamin D deficiency has anything to do with the issues I’ve been experiencing for the last 2 years. I refuse to accept depression as an answer because it just doesn’t fit my personal make up. (should I consider going to an Endo and not letting my regular Dr. treat this anymore?)

    It wasn’t until I found this site and read that so many of you are dealing with these exact issues and that some of your Dr.’s also believe the vitmain D was behind it, that I finally felt like this was the right answer. The relief and validation is such a blessing. Thank you all so much!

    I just finished my 4th week of pills today and while I don’t feel drastically better, I am starting to notice that the day I take my pill and the next day, I seem to have a little more focus and a little more energy to get something done at home after work. (unloading and reloading the dishwasher seems like such an accomplishment anymore!) Also, a day/day and a half before it’s time for my next pill, I feel more of the “crash” and start yawning in the middle of the day and have no energy to get things done at home.

    I really want to believe that this will work and that it IS working. I look forward to reading more of what you all have to say about how your treatments are going and the results you may be seeing. And again, a million times over, thank you all for sharing your experiences!

  200. You mentioned your dr may send you to a gastroenterologist for follow up work. I don’t recognize the word ‘celtic’, but I was diagnosed 3 yrs ago with Celiac Disease from a gastroenterologist & most recently with the Vit D Deficiency. I understand that with Celiac, there could be a malabsorption problem that can be caused by the Celiac. I have to request a lab test to see if that’s what caused the Vit D problem & Vit B12 prob I have. I’ve been on B12 injections about 5 weeks now and am just now noticing a very tiny improvement in that deficiency, especially the ‘brain fog’. I haven’t started the Vit D yet (50,000 iu). But my pharmacist tells me it’s a safe dosage. I’d been worried about that. good luck

  201. Troy Suzann says:

    Jan, Sorry it is Celiac Disease testing…. you apparently were having some issues in order to go to the gastroenterologist, if you don’t mind me asking, what brought you there? I know I was diognosed a couple several years ago from my Gyno with IBS– which has some of the same symptoms. They checked my vitamin b12 but that seemed fine. Regardless of what is causing I am glad that the Dr. tested me… most of the elder women on my mom’s side of the family have osteoporosis so I don’t need the lack of Vit D help that along this early in my life :)

  202. Maureen W says:

    I have been following this site since I stumbled on to it a couple of weeks ago and I find it interesting that so many of us learn about our vitamin deficiency under such different circumstances and yet we share so many of the symptoms. I have been taking 50,000 iu/week for four weeks now and am now shifting over to taking the vitamins montly. Fortunately I have not experienced any adverse effects of the vitamins at this level of dosing. On the other hand, I have not had any particular relief either, but I suppose it isn’t a “magic pill” and these things take time to correct.

    What I am interested in knowing, from anyone who is willing to chime in, is this… in addition to the high dosage of vitamin D, is anyone taking any other vitamins (over the counter multi, calcium, D, etc..)? If yes, is this something your doctor recommended? Are you feeling any relief?

  203. Maureen W

    nope I dont take any vitamins only the supplements of Vitamin D and calcium, and yes I do feel alot much better I have now 2 more doses and i hope i will feel really good

    by the way these things take like 4 or more months for getting better and healthy again

    ..

  204. By the way how old are u all ?

    I am young , 16

  205. Amna, first of all, let me clarify that when I felt like I was going to die because of the Vitamin D deficiency, I was not at level 13 but they could no longer detect it in my body. Second, I am 54 years old. And, third, I have been told that it will probably take me a full year or longer before the Vitamin D is back to normal. I have been on 50,000ius weekly with an additional 1500-2000ius of D daily for 9 MONTHS now!!! I am only at a level 17. Also, I have been taken other supplements since I have been diagnosed with this. I have always had problems with anemia and being low on B-12. However, because of taking super B complex vitamin, a multivitamin, iron, Vitamin C, and fish oil, all of my other levels are normal finally. They also sent me for an endoscopy in June to do a biopsy to see if I had Celiac disease and to see if I had anything unusual like bleeding ulcers, etc. Everything looked fine.

  206. Troy Suzann. Yes I was having what I thot was IBS symptoms, bloating, severe diarrhea, combined with periods of severe constipation, and projectile vomiting, sometimes all at the same time. I was so fatigued, I’d lay on the couch till time to go to bed. I lost 40 lbs in just a few months time. I was a very sick gal. My GP referred me to Gastroenterologist and he did the upper and lower scopes and found my tummy and intestines positive for celiac disease. So I rec’d that diagnosis 3+ yrs ago. But I was on my own when it came to how to treat myself. No drs I went to knew what to do with me. So, I went to Barnes & Nobles and bought books and learned, thro trial & error what kinds of foods AND meds I could and could not take, and I’m still learning ! I still can’t figure out why the gastro MD didn’t run lab for Vit D deficiency at that time, but he didn’t. So, I suspect I’ve no doubt had this and the B12 prob since then. Celiac has been around for a long time, but doctors are only recently KNOWING about it.

  207. Maureen W….As I just responsded to Troy Suzann, I have just been diagnosed with Vit D deficiency, and will be starting on 50,000 IU; one every 2 weeks. I was concerned that that was a high dose, but I talked with my pharmacist and he assures me it’s a normal dosage. So, I’ll start taking it on Monday (18th). And i recently found I’m Vit B12 deficient about 5-6 wks ago. I’m taking 1,000mcg injections once weekly for that. I’m just now beginning to sense the tiniest bit of improvement with those symptoms. I take no other supplements. How long did you dr say it would take before the Vit D ‘kicks in’? I guess we get in a hurry living in this ‘microwave world’. We want it fixed ASAP! lol. But having had Fibromyalgia and Chronic Fatigue for 20 yrs, I KNOW not many things work fast.

  208. Vickki

    I hope you get much better dont be in hurry you will get better really soon it just takes a hell of alot of timeeeeeeeeee !

    Im gonna check my level cuz fatigue is horrible, wanna compare myself with what iam feeling recently ..

  209. My dosages have been 50,000 mg daily for 3 weeks ,the first time and 2 weeks straight the second time. I think he was trying to OD me. I felt horrible with this amount in me after the third-fourth day and chose to take weekly and then I spread them out to every 10 days. I was also taking Citracal with D daily. I had to be my own health advocate. I am also in my fifties. There is so much of unknowns with D deficiency that MD Anderson is doing a study on this.

    If my calcium was high and my D was low…I would jump on the table and have a parathyroid tumor taken out and this nightmare would be over. My parathyroid is enlarged over the D being low but my calcium level is very good so we don’t mess with surgery.

  210. I’ve been taking my 50,000 IUs for 4 weeks now and was wondering how much improvement I’m supposed to be feeling. I’m also making a point to get out in the sun for at least 30 minutes a day, which I always avoided before. I’m glad to have read these recent posts that it will take time. Here I was, looking forward to getting my re-test in a couple of weeks, thinking I was going to be back up to near-normal levels (I tested at 16), but I guess, like Maureen said, these things are going to take time. After all, who knows how long it took to become so deficient? I have been fighting lower back pain for years, which I attributed to the equipment I wear for work, and age – I will be 50 soon. But, I haven’t been wearing it as much this year and I STILL have the pain. Now I’m thinking that this and my other pain and joint stiffness was due to the vit d def. all along. So, now I know it may be a longer process to recover. I am still so tired and fatigued when I wake up, and I’ve gotten used to living with the pain because it’s an every day thing now.

    I, too, feel a difference when I take my weekly 50,000 IU dose – that first day I don’t feel so good, but then it gets better in the middle of the week, then goes down at the end of the week just before my next dose.

    I am also taking 1200 mg of Calcium a day. My doctor didn’t even tell me about that when she gave me the Ds, I read it on the internet and contacted her, saying that it appears I should be taking calcium too. She wrote back and agreed. What if I hadn’t asked? Lesson here to be your own best advocate and do your research!

    Since learning that I’m deficient and I’m not imagining my symptoms, I’ve been using my sick leave at work more to take care of myself. The thing that bothers me is that I think some of my coworkers think that Vit D deficiency is no big deal. They don’t understand how much this can make you sick – can’t you just get out in the sun more and pop a vitamin? I know I shouldn’t let it bother me since other coworkers seem to understand or know someone else with VDD, but still, I feel like I want to educate everyone about this – the more I read about it, the more involved I see lack of Vitamin D is in diseases, cancer and overall health, more so than other vitamins.

    So glad I found you all, it makes me feel better to talk about this with people who understand and more information to share!

  211. I’ve continued to follow your comments since a couple of weeks before my first post on August 7th. I still have had no side effects (or noteable improvements, yet) after taking 2 of the weekly doses if 50 K IU’s. However, after reading some of your comments about taking a Bone Density Scan, I called my endocrinologist’s office to see if I shouldn’t have one as well.

    Lo and behold, they said, “yes, absolutely”. And also added that since my ovaries had been removed in a total abdominal hysterectomy EIGHT years ago, I should definitely have one. What??? Much like Cindy wrote above, I thought, what if I hadn’t asked?

    Several months ago, I noticed a lump under my right breast. It hadn’t gone away, so I decided to make an appointment with my gyno. The appointment was last Thursday. This is the same gyno I’ve been taking my TYPED list of symptoms, medications, and supplements to at every office visit for the last 5 years. But recently I’ve been feeling somewhat more empowered since my diagnosis of VDD (and having found this website). So, I felt like I had the courage to go have it checked out.

    In the exam room the nurse asks when was my last period, as she does every time. I give the same answer as always, “December of 2000″, which is of course the same month I had my hysterectomy. So the doc comes in and immediately feels the lump. When I ask him about my low Vitamin D count, elevated calcium count, and very large thyroid nodules (my mother had thryoid cancer), his eyes look like those of a deer caught in the headlights. He opens my chart and finds the test results from all the other doctors I specifically had copy him in over the course of the last year. Again I thought, what if I hadn’t asked?

    He sits down on his little stool with wheels, rolls right over in front of me, and starts to talk with me, not TO me. I can tell he’s actually listening. I tell him how I’ve been flat on my back for days after trying to do such simple things as walking to get the mail or trying to do some house or yard work. I tell him that I know why cancer patients just want to die in peace…so that the pain will be OVER. I remind him of the 11 lb. 2 1/2 oz. baby I had naturally and that I KNOW what pain is.

    I know doctors are busy and I don’t want to totally bash my gyno. He’s actually very nice and did, after all, refer me to the wonderful endocrinologist who actually got the ball rolling. I wholeheartedly agree with others here that say you have to be proactive and your own best advocate.

    I’m now scheduled for 4 tests this Wednesday…a fine needle biopsy of the thyroid, a diagnostic mammogram & sonogram, and a bone density scan.

    I can’t thank the creator of this website enough or those of you who post your comments here. As I continue to read and learn from them, I have more hope to get better than I’ve had in a long time. I’m wishing the same for all of you. :)

  212. Troy Suzann says:

    Cindy I agree with you… it is actually kind of scary to think of the ‘what if’ would happen if you did not push your doctors. My Primary, Gyno and Neurologist tested many things but did not test my Vitamin D, I made my own appt without referal to the Endo because of findings on my blood work which my primary wasn’t addressing such as low calcium and high TSH. Thankfully after seeing these results and describing my symptoms the Endo decided to test for Vitamin D…and thus found the deficiency… my TSH is down a bit so we are just going to continue to check that every 6 months. I am hoping the Vit D treatments will help–

    I wish the best for you with all your test– prayers are with you.

  213. Does Vitamin D Defeciency creates Menstural disorders? ..

  214. Lisarose…

    50,000 “units” is likely the doseage you were prescribed. It sounds like a lot, but in reality 50,000 units = 1.25 mg (that sounds a lot less ominous, yes?) I asked my pharmacist for this unit of measure because I, too, was concerned about the “50,000” seeming like SO much. Makes you wonder why Dr’s don’t just say the “1.25 mg” instead of the alarming amount of “50,000 units”!

    My vitamin D level was 9 and my Dr put me on 50,000 units twice a week. My sister’s was completely depleted and her Dr. put her on 1.25 mg 3x/week (ie, 50,000 units 3x/week).

    Your prescribed amount DOES seem like a lot. You may want to explore a second opinion by an Endocrinologist.

  215. Also, my mom’s Endo believes that they didn’t catch her parathyroid issue sooner because her original Dr wasn’t aware of the relationship between a vitamin D deficiency and possible false readings on your calcium….

    …(fact) knowing that your body’s absorption of calcium is controlled by vitamin D, and your parathyroid controls your calcium production/output…..(“theory”) the idea is that your parathyroid may still be working double-overtime producing calcium and your blood tests may not show the increased levels of calcium because it’s not being absorbed without the presence of enough vitamin D….

    I’m basing the “fact” and “theory” on my own research – I’ve yet to find conclusive scientific results on the theory part, but I’m inclined to believe in the expertise/conclusion of my mom’s Endo as he was the only one to tie-together all of the issues she’s been experiencing for a long time and not treat her like it’s all in her head.

    Stick with a Dr who has a lot of experience in these issues and who recommends regular monitoring of your levels – it’s the only way to stay on top of it.

  216. I wonder how long it took for me to get down to my 16 deficiency level. After reading the posts here, I see that bone density is directly affected by calcium and vitamin D. So now, I’m wondering what my bone density is and have emailed my doctor about doing a test. Why do we have to ask them all this stuff?? If you’re discovered deficient in something or they discover a test result that’s not normal, why don’t they give you all the information you need? Why should I have to research and ask about each thing that is connected to it?

    Gee, Dr., you’re giving me 50,000 UI of Vitamin D, but don’t tell me I need Calcium with it, otherwise all that Vitamin D will take the calcium I do have out of my bones.

    Gee, Dr., I’ve read Vitamin D deficiency will cause a lack of bone mineralization, sooooo I’m not making enough bone – don’t you think you should be looking to check out my bone density?

    Sorry for the rant, I’m getting worried/frustrated because I shouldn’t have to depend on myself to do the research and get my doctor to take care of me. After all, I’m not the one who went to medical school, right?

    I certainly sympathize with you folks who have other serious health issues in addition to this, what can people do to make sure they get the care they need without missing anything critical or spend all their time trying to research all this without a medical degree?

    Do your best to find a good doctor who will listen to you, those of you who do are very lucky. Hang in there!

  217. Cindy,
    I can sympathize with you…I recently switched doctors thinking I was doing a good thing…turned out just the opposite! While I was in the middle of explaining a problem to her she said, “your time is up for today, you’ll have to make another appointment”. This was a yearly physical!!! I was tested for Lymes disease and they didn’t even have the common sense to inform me that the test came back negative. I too had to call and request a bone density I also had to do all my own research since all I was told (via the phone + receptionist) was to take 50,000 iu’s once a wk for 8 weeks and repeat blood work at the end of the 8 weeks. It’s been three weeks and I still haven’t heard anything regarding my bone density. I guess it’s up to me to call and I will because I know from experience…my old doctors motto, “no news is good news” is a bunch of bull. I learned the hard way that things get over looked so now I call and request a hard copy of all my labs to make sure things get addressed.

    After three weeks of Vit D therapy I can honestly say there has been NO change. I know it will take awhile…but I was hoping for a day or two of tolerable pain.

    I really think we need to stay on top of things and you are right…look for a doctor that will listen…I am searching again with the hopes of finding someone that will give me more that 1/2 hour for a physical if need be and listen to me. By the way, the whole 1/2 hour the doctor typed into a lap top while I talked…(the practice is all computerized)…didn’t look at me the whole time. I just couldn’t believe it!!

    Sorry this was so off subject!!

  218. why doesnt anyone answer my question?

  219. Amna:
    My experience was much heavier periods for many months while I was deficient. That seems to have subsided now that my Vit. D level is normal and has been for two months now. That is only my experience. Perhaps others haven’t noticed anything different and so that is why nobody else has responded. Hang in there!

  220. Hey All,
    Went to my Doc a few weeks ago asking him for a Vit D check ……….
    Mum said her levels were very low (85 years old….years of broken vertbrae from doing nothing) and it was told it is often a mother/daughter “thing” n I might to check my levels…

    Doc says “we should do blood levels.. we will check your cholesterol, liver, iron, kidneys….n .n.

    So.. the only “problem” was the only thing I asked for..’posed to be 80-100… mine was 16……… I thought I was a complete loser, always feeling tired, my hands can hardly turn a tap these days, 3,000 D3 for a month, 2000 a month then 1000 a month n then blood levels……

    so being 49 I hope my 17 year old daughter has a greater understanding of Vit D def and doesnt have to know the unnecessary …….. ps …Vit D is not a vitamin it is a hormone

  221. Thanks vicckie =] .. I have asked my endo doc. and he told me that it disorders everything in the body. The deficency I mean =D ,

    Jan
    Hope u get releif for u and ur daughter, I’m also a 16 year old and I have a severe deficiency which was the level 6.

    .. Now that I did a blood test for Vitamin D today, waiting for the results on thursday =]

    do any of you get annoyed by a chest pain?

  222. Troy Suzann says:

    Amna any chest pains should be checked by your doctor– this maybe some complication from low calcium level caused by low Vit D levels… but you still need it checked talk to your parents, please.

    BTW- I also have extremely heavy periods, what are you experiencing?

  223. Troy Suzann says:

    Oh I was also put on Lyrica because of the pain, numbness and tingling– that helped but then my hand started to tremble and I gained weight mostly from swelling of hands and feet. I was then put on cymbalta but that zoned me out too much where I could not work, or didn’t want to talk to people. It also made me sick to my stomach. I also read about some terrible side affects and withdrawl symptoms so I took myself off while I was still on a low dose when I found out about vitamin d deficency.

  224. Troy Suzann says:

    I had listed all of my symptoms / treatments and hoped that others would be willing to share theirs, but the note did not post. It was suppose to be before the note above :( Here they are again….

    -tingling and numbness in hands, arms, legs and feet.
    -stiffness/pain in hands and feet (can’t hold a pencil anymore without pain, feet hurt so bad when getting out of bed in the a.m.
    -limbs fall asleep when in bed at night
    -joints and bones hurt in the a.m. real bad upon getting out of bed
    -frequent urination especially at night
    -extreme pms
    -heavy periods
    -lack of sex drive
    -low back and neck pain
    -hips hurt
    -brain fog
    -meloncholy
    -slight attention deficit
    -beginning of dowager hump
    -vitamin d deficiency (8/15/08)
    -up and down calcium levels

    I had mri’s to test for MS – no lesions, i have some neck and spine damage which showed on the MRI but nothing to cause all of the pain, numbness and tingling.

    I take 50,000 IU of Vit D for 12 weeks, then retest. I am also having Celiac Disease test and Albium level tested. No cause for VDD found yet.

    I also was told to continue taking my Calcium 750 mg/ with Vit D 500 IU x2 a day.

  225. Hi Ginger and all. Yes, 50,000 Units daily for 3 weeks “to me” is toxic and my pharmacist agreed. In May he ordered the saame thing and I felt I was near death with this dosag3e. he refused to retest D levels as he said it was too soon. Yet in July he ordered another strong dosage. He sent me a requisiton for Quest to have the parathyroid retested along with Ionized Calcium and TSH and FREE T4 and Ferritin Levels. NO 25D OH levels. Well, I left three messages on their phone and no return call back asking them to add the D testing so I know where I am. He is suppose to be a top notch Endo here in Houston…^&#%$()*%^R#@#$(*$%!~! LOL I have an appt to see another ENDO but it is not until late October. I am thinking about adding another doctor’s name to the requisition form and adding the D levels myself. My last levels were early May and since that time I have been on mega 50,000 units. I have reported this doctor for non compliance and to my insurance company. His nurse is out for 2 months due to illness but his message recorder states other staff will be taking all phone messages. This is not happening.

    Symptoms:
    Troy here are my symptoms
    Eyes. Joint pain, low back pain, breathing problems, feet swelling and ankles/feet pain. Hair falling out, fatique, weakness, sleep problems, high PTH levels, Low Ferritin, (anemic) enlarged parathyroid gland (lower right side)
    Gerd (severe). Aging on the face. Sawllowing problems. Diastolic Heart Failure. (this can be connected)

  226. Hello all, I have been out for a bit, I have been in alot of pain lately. My feet and legs hurt so bad, I was not experiencing this before. It feels as if I have been on my feet all day long walking miles. The pain is in my feet and goes up my calves.
    Do you all have this? or what do you all think about it?
    Leelee

  227. Troy I went to a cardiologist and did an eccho for my heart seems that theres nothing wrong all results are negative plus with an ECG

    Thats what my doctor said it might be low levels of calcium linked to vitamin D .. thanx alot

    umm regarding periods… theyre ok only disorders be4 knowing that they are that low ..

  228. Amna, my periods were all over, sometimes no periods at all, sometimes light some times heavy, my doctor finally had to put me on BC pill and now I get one every month and it is very light and only lasts a few days.
    Leelee

  229. I thought this article might help those of you struggling with vitamin D deficiency, it’s regarding cod liver oil which contains vitamin A and D in significant amounts (if you get the high vitamin cod liver oil:

    http://www.westonaprice.org/women/menorrhagia.html

  230. Leelee
    wat was ur level of VDD?

    I got some releif now after taking the doses. Im left with one dose and itll be over i hope =]..

    umm well u can get any pain due to loss of calcium and vit D

  231. To all of you

    for vitamin d to get absorped in ur body needs to take time might last for 3 to 4 months just expose urselfs to sunlight and eat diary products esp. fish like salmon and with healthy diet it must help to fight fatigue.

  232. troy*

    My symptoms are
    -Fatigue
    -Chest Pain
    -Stiffness & Cramps in the muscles
    -Increased Heart rate (but i controlled on) < Lack of calcium
    -Sadness
    -weight loss
    -Loss of appetite
    -Diarhea

    But most of them I got releifed from

    good luck to all

  233. Troy Suzann says:

    LisaRose thanks for sharing… so do they think your vitamin D deficency is being caused by your Parathyroid issues? What’s going on with your eyes, if you don’t mind me asking? I was diagnosed with IBS many years ago because of my symptoms, I also have alot acid reflux and heart burn when active or at night.. but I don’t know if it is gerds. It is very interesting and helpful to hear what others are going through. I thought I was just going crazy :)

  234. Amna, when I was first dxd I was at an 8, now I am at a 10 after almost 5-6 months of being on 50,000 iu’s per week.

  235. I can’t believe I just found this site!!!! I have felt like crap for the last 5 years and really not so great for 10 years and I moved from sunny texas to rainy portland, or. and all these symptoms started slowly and got progressively worse. I just found out after years of being called a hypochondriac by everyone, that my vit d is low (21) I just took my first 50,000 iu. I can’t believe all these people are deficient? I wonder how long I’ve been this way? I’m only 35!! I even remember thyroid tests being a little out of range in the past. If this Rx doesn’t work, does anyone suggest that I see and endo doc? I hope I don’t have any side effects because I have a lot of anxiety and panic problems and they would send me over the edge. Took me 3 hours to swallow first pill after reading side effects. WHY IS EVERYONE SO VITAMIN D DEFICIENT????????????

  236. I have alot of the same symptoms that Suzann listed, especially all that joint pain and stiffness in the mornings. And, like Leelee mentioned, my feet hurt in the mornings like I walked all night! I used to be more active, and would attribute all those foot pains, lower back and hip pains to whatever exertion I did the day before, like walking or a long hike. But, there are several days now where I don’t do a thing, just sit at a desk or on the couch and I wake up the next day feeling like I finished a triathlon.

    I was also diagnosed with GERD last year, too, and I eat healthy foods, so I couldn’t figure out where that came from. I also had breathing problems, like lung spasms and alot of coughing. The doctors put me through the breathing tests and lung capacity tests, and concluded I had GERD. Tossed me steroid inhalers and told me not to eat certain foods (which I didn’t eat anyway).

    I also have a LOT of fatigue. No matter what time I go to bed or how many hours of sleep I get, I wake up so tired. I’ve always been the sort to get up and be alert and ready to go to work. Now, I feel like I can just crawl back into bed and sleep for the rest of the day. Even when I’m at work, I can feel my eyes and body so heavy and tired that I can go to sleep.

    I never connected all these symptoms until I started reading this board.

    Lisarose, that 50,000 IU a DAY is unreal. Everything that I’ve read on perscription Ds say that the 50,000 IU tablets are supposed to be taken once a week. Unbelievable that a doctor would prescribe that level.

    Amna, I thought my periods were pretty heavy with lots of cramps for a few days each time, and lasted a week. I was very regular and could predict the start, though, like clockwork. I have noticed that since I started taking the Vitamin D, my latest period wasn’t as heavy and didn’t last as long. Cramps weren’t as bad, either.

    Wow, Leelee, you only went up 2 points after 5-6 months on the 50,000 IU? I am really curious now, to see how my progress will be, I’ll have to wait til Sept to take my 6-week test.

    One day at a time, folks, the more we learn, the better equipped we are to deal with this.

  237. Meg, Good luck on finding a good doctor. That level of disinterest is just so blatant, I don’t know how that doctor can even think she’s helping anyone like that. I know some HMOs like mine, pressure their doctors to stay on schedule, but I know that going in, so I make sure I get my questions asked and answered. The trick is making sure you are prepared with information and questions to ask!

  238. Does anyone have any feedback for me? About side effects of the Rx? Anyone else become hyper from it? I took my first one about 8 hours ago and feel pretty energized. Is it my imagination? Could it work this fast?

  239. Hi Leslie, I don’t get hyper from my 50K pill. I actually feel a bit bad after I take it for about a day or so, like queasy and a heavy feeling. If you feel energized and great, go with it! I’ve been watching for a positive effect from it, thinking I’d get a reaction like you’re getting, but not yet. Maybe it’s in my head?

  240. Hi Cindy,

    Thanks for replying. This is so new to me that I’m not sure what to think about it all. For so long now, I’ve know that something was wrong with me but I’m still not convinced deep down inside that it is just vitamin d. Docs are always missing things. Any other tests I should request? Calcium, other vitamin levels? Also, sounds like lots of the posts here are not feeling or seeing results from the vitamin d therapy.

  241. Leslie, same here. I knew something wasn’t right with me, and started surfing the Web for my symptoms. I thought fibromyalgia, and asked my doctor. Luckily, she knew that Vit D def. can mimic FM. I did a full blood workup and asked for as much as I could – Vit. d, thyroid, anemia, glucose, cholesterol and so on. And, am now asking for bone density. At least now I know that there is a physical reason for the way I am feeling and not imagining things or simply being sensitive to “old age” aches and pains (I’m only 49, it’s too early). I think there will be results from the treatment if one is only Vit D deficient and there aren’t other health issues, but it may take time for the levels to build back up. As I posted before, who knows how long it takes for one to become deficient, it may take just as long to get back up.

  242. Ooops, by the way, I forgot to mention – doctors have, and are discovering just how important Vit D is to your body, it’s not a minor thing. Here’s an interesting link to read more about it: http://www.westonaprice.org/basicnutrition/vitamindmiracle.html

  243. On 5-2-08 my doc called to tell me I was deficient at 18. I began taking the 50,000 IU per week doses – for eight weeks. At the end of the first week I had more energy than I’d had in two years. I was still achy, having muscle spasms , and some pain from time to time but over the next several weeks that all slowly went away. I completed the megadoses in July and now take 1,000 IU per day. Last week my level tested at 50! I feel fabulous. I don’t feel 52, I feel like I’m 40!! Quite a difference from a few months ago when I thought I was dying and felt like I imagine a 90 year old would feel. This summer has been spectacular. I walk every day, work in my large perennial garden daily, have gotten projects done around the house that I’d put off for years, etc. I pinch myself every day because I truly thought I’d live in misery for the rest of my life. Oh, and I no longer take anti-depressants. I know it is frustrating when docs don’t listen , or worse, think it’s all in your head. I have noticed that no doc likes a patient to come to them with a diagnosis. When I finally got my doc to listen to me I pointed out that if he’d look back at my chart he’d see that until recently I had no health concerns and that I know my body and I know something is wrong. This was after I had gone to him before with self-diagnoses of Fibromyalgia, arthritis, and Lupus! Also, everyone can – and has the right to – request a Vitamin D test. Tell your doc you’ve heard a lot about it in the news and that you think you’d like to have it tested. I have two friends that recently did that. One had a normal level ; the other (who also has MS) was deficient. I pray that the rest of you find relief- and soon.

  244. Leelee for 5-6 months ur level is still low thats y ur symptoms are still there

    it takes time to absorp vit d its ok just let ur self out in the sun itll help

  245. people u take 50 000 IU , why do i take 300 000 IU

  246. Vickkie Im so happy for you
    that now you feel much better so all of you must listen to vicckie haha she was deficient since Feb she felt better at Jul so that took her 6 months atleast.

    Never be in a hurry like me hahaha…
    Im feeling better I feel that my level went up to 18 from 6 =)

  247. Hi Troy,

    I have a lot of inflammation in the eyes with blurry vision. I cannot thread a needle and I love to sew for my friends. I make drapes and children’s clothes and children’s quilts. I am on mega doses of antibiotics and Restasis for dry eyes. They do not have a clue and this is a large teaching hospital. I am so sick of having to do their work and paying them. I am not nice anymore….(-: Parathyroid issues came up at MD Anderson cancer center. They insist I have this rather large parathyroid adenoma in my right lower but no one could tell me about it and what to do about the low D or the high PTH except to keep getting my calcium levels checked and if they become high (even a bit over the range) I am to come back. I did not care for Anderson’s Endo dept nor some of the doctors, that freaked me out…so I went across the street to another place and they were the Mercedes….The radiologist viewd MD’s Scans and reports and all the blood work and feels if there really is an enlargement of the parathyroid it is due to the low vitamin D issues. He also noted that the calcium levels are normal. Now, if calcium levels are elevated and one has low vitamin D…then it is time to talk to an experienced surgeon who does the Mini/Micro surgery to remove that bugger. I have already talked with one of the best surgeons in the country on this matter (not Dr. Norman) …but with normal calcium levels, no surgery is warranted at this time. …or perhaps ever. There is much unknowns about low D levels and what exactly it means in terms of “well being”. Much has been said lately about it causing cancer and heart disease and osteoporosis. I have the heart disease. I have sleep apnea with 5 different face masks to wear at night and at 4:00AM…like clock work, I toss the mask off my face onto the floor. I hate that thing. I also have Irritable Bowel Syndrome. I am not sure I have Gerd but perhaps…I have a lot of burning and it is worse at night and some nights I awake with severe burning in my throat. I take nexium and drink Maalox like it is going out of style.

    For those interested, Dr. Jim Norman has a sight on parathyroid issues and vitamin D. It is parathyroid.com..
    Cindy, YES! 50,000 IU daily for 3 weeks x 2 months is unheard of. I truly think he wanted me to go away, forever….(-: Hubby does not want me to return to that office.
    I put in another call to that office yesterday and I was firm. They will be calling in an order for the D blood work. I told them that I have never had to deal with an office like theirs. They were sorry to hear that I was unhappy that they do not return patient phone calls in a timely manner. I told them that weeks later is not acceptable and this is bad medicine. I also mentioned to her that I get chest pains when I know I have to call them knowing it will take weeks for a return phone call.
    I see the pulmonologist tomorrow for PFT’s. They also are disorganized but in a nice way and always return calls the same day. And so it goes…………….

  248. Cindy, our pain seems to be the same (the pain in our feet). But do you get shooting pains in your calves?
    Yes my levels only went up 2 points, I am really scared about that.

    Vickie, thanks so much for sharing your progress, it is great to hear that you are doing better!

    Amna, yep only 2 points, I get as much sun as I can, but it being monsoon season it not that easy. How often do you take 300,000 ius of Vitamin D?

    Lisarose, I cannot imagine being on such a high dose, wow were you really sick from it? I dont think you should go back to that office either.

  249. I called my doctor yesterday and told him about the pain I have been having in my feet and calves and how I have been feeling lately and he had his secretary schedule me an appointment for this morning, they seemed very concerned, which worries me alot. I will let you all know how it went.

  250. Leelee, let us know how the appt goes.

    YES, I felt horrible on that mega dose and calling this yo yo’s office did not yield a return call…even after sending them a fax and an e-mail. My pharmacist was concerned. I read about toxcicity of vitamin D and one site listed that some patients even after taking one 50,000 units can feel side effects. I felt it after taking 2 but did not know it was the D and then I took another 50,000 on the third day and I was in bed for 2 days. I was so sick. Finally 2 weeks later, the nurse returns the calls and she was upset with me that I started staggering the dosages and had the audacity to tell me that Vitamin D replacement causes no ill effects. She also needs to be put out to pasture.
    Now I sound like an old hag that puts down doctors but this is not the case. I love my cardio group and gastro lady and the head and neck surgeon and my GYN. They are tops. And, I do like the pulmonologist. I do not like the eye group, I saw but found a better one down the road. Hubby said if there is a bad doctor out there…I will find him…LOL
    Wishing you all better days ahead. We deserve this.

  251. Thanks Cindy for replying. I hope this is my cure. I knew Portland was slowing killing me when I moved away from my sunny state to here!!! I HATE THE RAIN!! Thanks again and good luck to you

  252. Troy Suzann says:

    LisaRose, my vitamin d pamphlet that came from Walgreens said not to take antiacids with Magnesium in it. I take tums which does not… Maalox does. I don’t really understand what it is but when I looked up interactions it mentioned hypermagnesemia. I guess if the kidneys aren’t able to process out the magnesium complication may occur … more likely in patients with Kidney problems. Just something to take note about.

  253. Troy Suzann says:

    Leslie, I did not get hyper from my first pill last week, but I did feel a sense of relief that maybe I have found out what is wrong with me… which picked up my spirits quite a bit! I know what you mean about feeling that people think you are a hypocondriac– I was putting off going to the doctor for several years with my symptoms because it seemed that I had way too many complaints and I felt he might think I was a hypocondriac. I never mentioned it to my husband either because I feared what he would say– then one day last October when we were reviewing insurance plan offers from work for this year, I told him I wanted the best plan for myself– and explained why. He has been so supportive, and has not let me give up in finding an answer. I have been on a road of tests, exams and medications for the last 9 months… until finally my endo tested my vitamin D, now I think I am going down the right path and truely excited about it!

  254. I do not think I have a kidney problem but who knows. I just had lots of blood work from my Cardio (3 pages) and everything was beautiful but a slighty high Trigylerides. (I am tested every 4 months for liver and kidney function as I am on cholesterol lowering meds and beta blockers) There was a man on another site that also was low on D and when he took 2000 units of D (over the counter) he felt puny, he said. He only taked 1000 units everyday. You just never know how this can affect someone.

  255. Leelee

    once a month

  256. So does anyone think that the d deficiency could be caused from an underlying disease or just not enough sunlight and bad diet? My doc said that I could go see an endo doc if I wanted to but I’m not sure what to do? I live where it rains 9 months a year so I originally thought that was my problem but now I’m reading that the deficiency comes from a disease like CFS or MS or lupus etc. and mega doses of vit. d can make you worse. Anyone know about this?

  257. Hey all,
    Last wed. I took my 4th vit. D rx and will see my endo this friday. I haven’t had any side effects from the rx, but also haven’t felt any improvement in symptoms. I am expecting it will take several months though. The fatigue was pretty bad this weekend, I helped a friend get his house ready for rent (painting, sheetrocking, etc) and the next 2 days I was BEAT! I could hardly make it through the day at work Monday.

    LEELEE, I have shooting pains also but not in the calves, I get them in the front of my thighs (typically the right side). Not every day, but it will go in spurts, pains for a few hours then it stops for a few days. Feet hurt every morning when I put weight on them. It has been YEARS of feeling bad, so a few months to recover I can do :)

    Here’s an informative site on VDD:

    http://www.your-nd.com/html/Jan2008_1.htm

  258. Leslie,
    My endo told me that my seizure med can deplete my vitamin D and that was why (along with my symptoms and complaint about my weight gain) he originally ordered the test. I also recall reading somewhere that in women, our hormone changes (as we age!) can cause vdd, and those who live in the northern hemisphere don’t get adequate sun exposure especially in the winter. I am sure there must be a lot more reasons they aren’t even aware of yet.

  259. Leslie,
    If I were you I would definately see the endo doctor, if for nothing more than peace of mind.

  260. Okay this is what my doctor said:
    He thinks that my thyroid is giving me more problems, as you all know Vitamin D Deficiency and Thyroid Disease go hand in hand alot of times, meaning persons with Thyroid Disease often have Vitamin D Deficiency. He ordered a bunch of labs so we will wait and see what those say. He also felt a goiter. I am hoping that this is the answer to my prayers and that I can hopefully get on the road to recovery or something like that.

  261. Lisarose, I am glad you that you figured this out for yourself, that amount was unheard of.

    Amna, I guess different doctors different doses…

    Michelle, so how are you doing now with the pain?

  262. Troy Suzann says:

    Leslie, Definitely go see an endo or push your doctor to do some other tests, especially if it doesn’t get better. There a many things that can contribute to VDD. from lack of sun, age (your too young), parathyroid issues, malasorbtion issues (celiac disease, Lactose Intolerance), etc. As I have said before in this post, besides prescribing me Vitamin D 50,000 iu once a week for 12 weeks, he is also sending me to get bone density scan. On my next blood test he is checking my PTH levels (parathyroid), , 2 -Vitamin D tests, basic metabolic panel (for calcium), Celiac Disease Panel and Serum Albumin. I am 45 and live in arizona– he said I was too young for it to be age related and AZ has a lot of sunshine. So he is determined to find out why and so am I. It is your right to confirm what is going on with you too…

  263. LeeLee,

    I too have the pains in my calves as well as my feet. I also have them in the front of my legs. My shoulders, arms, hands and hips are the worst!! This is constant pain…never seems to let up. I will be taking my 4th dose of vit D (50,000) on Saturday and have had NO relief at all. Still hoping though! I have been on thyroid meds for 25 years and back then I was diagnosised with a large visable goiter. They killed off my thyroid and I need to take meds the rest of my life. It amazes me how the more we talk on this thread the more we have in common. I am at the point where I think it’s something bigger than VitD…now all I have to do is find a doctor that will listen and help!

    Feel better everyone!!

  264. I just heard from my GP, who I asked for a bone density scan. She said she is consulting with an Endo who will determine if it’s warranted under my circumstances. (????) A 16 VDD isn’t enough? Good old HMOs.

    Leelee, no, I don’t get the shooting pains in my calves, just alot of foot pain when I stand on them whether I’ve been walking or not.

    Vickie, that’s really great to hear how you’re doing – it’s encouraging to hear that a relatively fast recovery is possible. I will test again after a 6 week 50,000 IU program and see where I am. I live in the San Francisco Bay Area, and the sun here is plentiful – I have been making a point to get out there, which is a 100% improvement than before when I avoided the sun to prevent aging and skin cancer. I have taken 4 of my 6 pills and still feel tired and achy, but I know the body needs time to change.

    Leslie, the megadoses of Vit. D that can make you sick are really, really high doses on a continuous basis, not these 50,000 IU / week therapeutic ones. The safest way of course, is to get the sunlight, since the body knows to stop from OD’ing on D naturally. But, we need to take these doses just to get up to normal levels. I’ve read about the deficiency causing serious diseases as well as certain diseases causing the deficiency, so it’s just a matter of seeing how you respond to the prescription dosage and if that’s enough to get you up to normal. If not, there might be a reason that the D level is staying low. That’s where it’s important you have a good doc that will follow the clues to find out what’s going on with you, or any of us….

  265. Have you all noticed that at last Vitamin D isnt a Vitamin, Its a Hormone which is a Fat soluble. Thats why its hard to find in Foods. And must be exposed to sunglight.

    and if a hormone is imbalanced it creates the anxiety attacks.

  266. Before knowing that all of you were low on vitamin D, did anyone of you experienced Palipitaion?

  267. Troy Suzann says:

    Yes Amna, I think that is what you would call it, I notice it most sometimes when I lay down at night, heart starts beating faster and it feels like its doing a flip flop in my chest.

  268. Meg, wow thank you for shairing, yes we do have alot in common, I really wish we could find the answers to what is going on.
    Cindy, yep thats almost the same pain I have.

    Amna yes I did have them before I was dxd Vitamin D, we thought it was my thyroid and then thought it was Vitamin D now we are back at the Thyroid.

    A question to all…. have you gotten tested for Thyroid Disease? and if so what are you results?

  269. exactly oh my god we have same issues

    first when it starts to beat and all we did a thyroid test. it was normal levels. but then i wasnt feeling ok {INSECURED}…

    so i told them just refer me to an endo

    that endo doc. decided to see vitamin D .. by that we knew it was low. level 6

    I did the thyroid test twice it was all normal

  270. exactly oh my god we have same issues

    first when it starts to beat and all we did a thyroid test. it was normal levels. but then i wasnt feeling ok {INSECURED}…

    so i told them just refer me to an endo

    then did all blood tests that was required

    I did the thyroid test twice it was all normal

  271. lool y is it 2 comments now !

  272. Troy Suzann says:

    My levels were borderline high the first time, now they are well within normal range.

  273. I have now called the labatory !!! My level is 20 !! It has improved. YAAAAAAAAAAAY ME

  274. Troy Suzann says:

    Has anyone else noticed a marked difference in height? I just got back from my bone density scan (dex) and they weighed and mesured my height, i am 1 1/2 inch shorter than in highschool only 27 years ago.

  275. Amna, yes it is similar. My thyroid levels have always been borderline or high and now have seemed to get worse. Make sure and keep an eye on your levels every now and then. Great news Amna on your Vitamin D.

    Troy Suzanne, did your dr give you a reason as to why it was high? keep an eye on it as well. Just weight difference.

    Just thought I would say this again. Vitamin D Deficiency and Thyroid Disease go hand in hand alot of times.

  276. Leelee, dealing with the pain issue–it is just coping and I used to take a lot of ibuprofen. I have been trying to stay away from the ib recently I know it in’t good for you. I often struggle through the day and when I get home from work I’m done (exhausted, no energy for anything).
    TROY Suzann–I have had borderline high thyroid for a few years now, which is funny since I had hypothyroidism as a teen and into my 20s and was on synthroid for years.

  277. Amna: So happy for you that your D level has increased. For some it can be a slow process. In response to your question to all of us about heart palpitations. Yes, I did experience those,also. As well as my chest hurting to the point I was sure I was having a heart attack at times. Both have gone away now that my D level is normal. Until someone has been through this it’s so hard to explain; so hard for others to understand. I feel bad for you that you are so young and have all of these medical issues. Hopefully, soon, all of this will be behind you and you will be out enjoying life like someone your age should be.

  278. Amna: One more thing….I remember your saying that you live in Qatar and don’t go out in the sun at all. Since being diagnosed at D level 6 have you tried to get some sun each day? I read that even 10-20 minutes can make a big difference. I live in Minnesota and so from November thru March I am indoors most of the time. I have spent a lot of time in the sun this summer and that may have helped to speed my D level recovery. I am a little concerned that this autumn and winter will be a challenge to keep my D level up there. The good news is that now I know about it so I can have it checked – and will have it checked again in December to see how I’m doing.

  279. Vicckie
    Yes i Live in qatar but its so hot and humid i cant really stay in the sun for so long like my maximum is only 8 minutes. but after i knew about my low vitamin D level I know let my self out in the sun for 8 minutes only. besides eating diary product may help increasing vitamin D. Ignore wat the doctors says about food that doesnt contain vitamin D. I drink alot of milk now I think that helped my vitamin to increase aswell as the calcium level.
    Thanks alot Vicckie for your replying =]

    umm if you dont mind me asking you.
    when you had the palpitations was it before u know that ur low on Vit D.? even the chest pain. me2 yesterday it was hurting me. but nothing is wrong with my heart. I did all heart tests doesnt show any disturbance. I guess it is all from the defeciency.

  280. Amna:
    I can’t even imagine how hot it must be where you live. And I do understand why you don’t want to be in the sun. The sun is such a fast generator of large amounts of Vit. D so even the 8 minutes per day is probably helping you.
    Yes, the palpitations and pain were before I knew I was VDD. VDD has so many symptoms – so many more than what we read about. Most articles really don’t go into depth regarding the symptoms but state only muscle aches/pain, weakness and fatigue. They don’t stress that it gets to the point where a person can barely lift themself out of a chair, walk up and down stairs, painful hips, knees, shoulders and hands, how painful it is to get out of bed in the morning, the muscle cramps, dry skin, strange sensations throughout the body, the tingling of the hands, legs, feet, etc.

  281. Vickie
    yeah i agree, Seems like doctors will only understand if theyd have the deficiency and particularly severe defeciency!

    umm,, Iam wondering. did u take tablets or pills for paliptaion?
    cuz i do. for 3 months to re order the beats.

  282. Yes, I have heart palpitations too, like the air gets squeezed out of my lungs and my heart beats very fast. It doesn’t last long, just about 10 seconds or so. I’ve told the doctors in the past and I’ve had EEGs which show normal.

    I had my thyroid tested doing the TSH test, and normal range is 0.4 – 4.5 mIU/L. Mine was 0.7, on the low end, but my doctor didn’t seem to be concerned.

    And, an ironic story here – I was out on my low chaise lounge a couple of weeks ago getting my vitamin D sunlight, trying to be productive and doing some paperwork. A wind gust came along and blew some of my papers towards the pool. Panicking, I rushed, trying to get up off the lounger (it’s low, 6″ off the ground) to catch the papers before they hit the pool, and I over-bent my knee under me. It hurt, but I thought it would get better by itself with time. So, it still hurt today and I went to the doctor and got x-rays. I’m now off on the injury and waiting to see an orthopedist. Sheesh.

  283. Carebearny1999 says:

    Hi! I was recently diagnosed with vitamin D deficiency. Reading some of your posts I’m nearly crying–I have likely been low all my adult life! I have been taking 50,000 units a week for 4 months now, all I’ve noticed is I’m naseous and irritable after taking it. The dr said this was the only way to buy it (except over-the-counter) other than shots. I’d rather do 25,000 units twice a week, hopefully less throwing up! He said I could try the shots, wasting half into the sink before injecting it. My question is–is the shot like an insulin shot (just under the skin) or does it have to go into a vein?? Trying to decide what I want to do when my script runs out next week…. Thank you!

  284. Cindy
    do u get chest pain? & was it before knowning that ur low on Vitamin D.

    Carebearny1999
    For the injections u mean?… Its better when u take it by injection and no its not by the vien or skin, its an injection to the muscles. I think it has a better and faster effect more or less than a tablet or a pill. [ from my own experience ].

  285. Yesterday I saw the cardiologist with hubby. I am in heart failure. It is called Diastolic Dysfunction although my BNP levels that indicate heart failure have yet to go over the normal range. BUT, the Echocardiograms picked this up. Other tests do not pick this up..only the Echo and these are read by top notch doctors.

    I told her about Dr. DUFUS and My vitamin D levels and she asked if I was anemic. I said YES and told her my Ferritin levels are in the cellar. Told her my TSH is 8.4 (too high) and the parathyroid in question and low Iionized calcium readings. Now, if I understood her correctly and hubby also, (should of brought a tape recorder) she is telling me that all this needs to get correc ting as it is affecting my heart failure. Duh! I asked her what came first, “the chicken or the eggt”. She said it is all intermingled. She wants to see the lastest reports. I told her that God Only knows when I will get those reports. Well, I got home and on my recorder was Dr. Dufus’s office with results. Can you believe this? I quess my raged call to them the other day, got them on the ball, to return calls. Had I known these results were ready I could of of walked to their building and got them late yesterday but will call them on Monday and have them Fax a copy to my Cardiologist and on to the Head and Neck surgeon’s office as I see him next week. Lack of D can cause many problems in some..not all, I was told…..So not only do I need to stay on top of my D numbers and calcium levels, I need to stay on top of this Diastolic Heart failure thing. MY BP is normal….She did note that my potassium level was 3.5 (normal is (3.5 to 5.1) and is concerend and I am now on small amounts of potassium with repeat tests next week for this. She would like to see potassium in the 4.4 range. This is where I always was in the past. Did the vitamin D mega dose do this? OR is it a lack of vitamin D that can cause low potassium? Hmmmm! Have a great week-end. I am trying to sew for grandchildren. School starts on Monday.

  286. sounds like your body is finally responding to the Vit D. Good for you!. I’m looking forward to feeling better. Your message gives the rest of us hope !!! I just started 50,000 IU twice monthly last Thursday. I’d been afraid to start on it cause the dosage sounded sooooo high, but someone mentioned that 50,000 IU equaled 1.25 mg. I agree with her that if it was written that way, some of us wouldn’t be quite so worried about overdosing ourselves. I’m so very sensitive to most new meds, but I’ve had not one single problem with this Vit D. First day I felt a little hyped up, and was on my feet nearly the whole day. Second day I was in such high pain…..much more than usual. (I’m chronic pain patient with fibromyalgia & chronic fatigue for 20 yrs), and Celiac Disease for 3+ yrs). I spent most of that day lying on couch. and today, I’ve been gently busy the entire day..trying to deep water my outside plants, so I’m getting more sun than usual, at the same time. I hope this keeps getting better. I’ve been ‘bed bound’ for nearly this whole year, before being diagnosed with Vit D & B12 deficiencies. No complaints. At least it looks like Thanks for good report. we’re on the right track ! From Jan

  287. Cindy…. You mentioned living in SF area where the sunshine is plentiful. I, too live in the North Bay area……Was it you that talked of palpitations? I’ve had them all my adult life, but they’d gotten worse before this ‘D’ diagnosis, so I’m hoping it won’t be so noticeable once my numbers come up. I see a cardiologist 2-3 times a year cause I have a leaky heart valve, due to having rheumatic fever when a teenager ( I’m a senior Citizen now ! lol.) They do very thorough testing on me and I’m doing fine in that area. I’m anxious to talk to my cardiologist next month and tell him of this diagnosis. I’ll bet he’ll be so excited for me. I’m one of 2 of his patients that have fibro, already. I just never knew how lack of ‘D’ could cause so many problems, and many of them similar to the Fibro/CFS, too ! I guess we live & learn!

  288. I think it’s normal for us to ‘shrink’ in height as we get older. I have, too. I had a Bone Densitometry last year and I’d gotten shorter. I watched as my mom got tinier and shorter as she got older, and now I’m at that place. lol. It’s times like this, we wish for time to stand still, at least as far as getting older is concerned. lol. From Jan

  289. Like all of you I’ve just been told about my VDD, don’t know the exact no. yet but will next week. Started the 50,000 1xwk today and feel fine with it, but took it on a full stomach.

    Have had most of the same symptoms, not severe, just naggy for all these years, and recent weight gain, but no depression that I’m aware of. However, if I had your severity I might get there! I wondered why I could never get comfortable for longer than 5 min, think I know now after hearing all of you.

    Connie wrote once above about radiation. I had radiation treatments on my lymph glads in the 50’s when it was the rage. I now have auto-immune hypothyroidism and this. Could be a fit. But, one thing that stands out here is that I’ve had the GERD and IBS for ages and have taken Prilosec and a natural IBS med daily and read both of them last night and they both contain magneseum. Since the prescription warns of taking this with the D maybe this cause the VDD??? I also have a history of very unusual bacterial infections, rarely get a virus.

    Will be interesting to hear the rest of the test results next week. By the way, my orthopedist was the one who urged me to get all this testing because after having surgery on both ankles they were still swollen and hurting. I fortunately have a great group of docs here in San Francisco.

    Who is it, Leslie…joint popping? Like crazy!

    Amna, you’re too young for all of this, be strong.

    Thanks everyone.

  290. What are the main symptoms of CFS? I never know if it is something I’ve been dealing with or not. How do you get diagnosed with it? How long does it take for the vit. d dosage to start working? And my doc says that it is not that big of a deal to have this deficiency. Just take the 50,000 for a couple months and I’ll be better. Also, he said that most people living where I do have it. Is he blowing this off as no big deal?

  291. Amna – I noticed the palpitations long before the VDD diagnosis. They come pretty randomly, so I couldn’t tell if it’s connected. I did have chest pains, but it was from the “squeezing” feeling and the muscles seizing up.

    Jan – Amna mentioned the palpitations first, but I also noticed them. Docs said heart’s ok, though, with a couple of EEG tests the last few years.

    Took my 5th 50,000 pill today. My doctor said the endo said that a bone density test wasn’t necessary for me at this point. I’m not post menopausal, and even if my bone density was low, the Vit. D therapy and calcium I’m already taking now would be the same recommended treatment to increase the density. So, why spend the $$ on a test, right? I’ll also start on some weight bearing exercises when I get some more energy…

  292. Sherry
    Yeah I know I’m too young but its all my fault i dont eat properly and never go out in the sun. Luckly my level is now 20 and i Feel Like a new person. I hope you all feel better when your level gets higher. I no more have cramps or tinglings in foot. No more pain. No more fatigue. and now my heart palpitations are getting much better than before i know can go and walk like before. I dont get tired easily. I felt so tired before is because they knew Im low on D after 3 or 4 months maybe since i was low. like for 4-3 months I didnt feel ok. I knew something was wrong. But after those 3-4 months they knew i was low on D from the Blood test. Besides It was a Coinsedense. I hate our hospital UGH !! …

    Ummm people I’m an arabic person, do I speak fluently in english? ..

    Like is my language good for my age?

  293. I’m due to take my next vit d pill and I feel weaker than I did before. I’m having major trouble falling asleep and staying asleep. I thought I would feel better. Do you feel worse before you feel better? What’s the deal???

  294. Yes you do leslie
    its ur 2nd Vitamin pill so its ok.

    I all suggest that you guys take an injection its faster and better

  295. Leslie,

    This is a big deal, bigger than I ever thought, you don’t hear about vitamin D defficiency problems.

    For me it ranks up there with the effects of Chemo. As my D level slowly increases I do feel better, give it time. Don’t let anyone discount what you know you are feeling.

    Good luck and wishing good health!

    Jean

  296. Leslie, I took my first Vit, 50,00 IU capsule on Thurs aug 21st. the first day I could tell I felt better. Next day, I didn’t feel so much better, and since then, my pain levels have been out of this world. I’m a chronic pain patient, so I know about pain. But I’m getting very little rest or sleep, now, due to the high levels of pain. Before starting Vit D, I had chronic all over body pain, now it’s all over body pain, plus every single joint in my entire body. My pain med isn’t even touching this pain. But I will have to endure it, I guess, cause I’m ‘maxed’ out at the highest level of pain med. Anyone else having these kinds of pain symptoms? Or start out with these pain symptoms and then got better as time went on and your Vit D levels got better?I don’t want to get discouraged at the start of this regimen. I had just begun feeling better on my Vit B12 injections till this. I don’t want the Vit D pain to block out the good that the B12 injection is doing. i guess I’m between a rock and a hard place. Any thoughts? Thanks Jan

  297. I heard from the doctors office today…Now,I am griping again. I got a call from some gal there and she said, “Dr. so and so wanted me to tell you that your lab results are all normal and we will see you in two months”. I said, Give me the number!
    She stuttered and said the TSH (Thyroid) is 7.0 and the….I stopped her and said, “You call this normal? Do you need eye glasses?” She told me to wait. The RN got on the phone and I asked her if she felt 7.0 was normal for Thyroid when Lab Normals are 0.4-3.8. She said NO they are not normal. I asked for the D levels and Parathyroid.level. The Vitmain D was 25….up from 8 but still below normal. The PTH (parathyroid) level was normal. First time in almost 2 years. So even on Toxic levels of D in the months of June and and July….it only brought the D up a little bit but not in the normal range. She is calling in another round of 50,000 units of D to be taken every day for another week and then I am to take Oscal with D x 3 a day on a continuous basis. He wants calcium in the body as the Ionized calcium was low…
    Ladies, be sure you get copies of all lab reports. Do not take anyone’s word, “Your labs are normal”…How dumb can an office be? If I was not on top of everything….no telling how bad the thyroid would of gotten and the Vitamin D. This gal needs to be fired. Gads…..The RN did say “no wonder you feel badly”.. Low D and Low Thyroid…..I need a good drink! (-:

  298. Carebearny1999 says:

    Well I’m due to take my 13th pill tomorrow–I was vetoed today on the injections…so more naseau (i can’t spell right now) because he doesn’t want to put me through injections. My levels of D went DOWN! WTF?!? I’m back down to 22, I started at 15 and have gone as high as 24…. I’m in horrific pain, and I’m no stranger to pain. I even got myself a handicapped parking permit today, something nobody should have to do at the age of 32. He sent me for bilateral xrays of both legs but even if it’s arthritis something HAS to be done!

  299. Carebearny 1999 – Have your doctor keep checking out ‘WHY’ your numbers are declining. I have questions to ask my doctor when I see him this week. For me, I suspect a malabsorption problem due to Celiac disease, but tests will have to be run. Hope you get to feeling better soon. And don’t feel bad about the Disabled Placard. I’d be lost without mine. ( I’m a Sr. Citizen, now tho). I’ve have it for 5-6 years due to the Fibromyalgia pain & Chronic Fatigue. Sometimes even the closest parking space seems like a MILE, and my legs hurt sooooooo bad & it feels like I’m walking in deep mud. Hope you get some answers soon. From Jan

  300. I have just received a phone call from my PCP. I have been told that I have no indication of Vitamin D in my body. He said he has never seen anything like it. Thirty (30) years ago I had a Gastric By Pass, and was told to take my vitamins, but over the years I neglected them. Over the course of these 30 yrs., I have had 7 knee surgeries. One partial than a total on that one and a total on the other one. A left hip replacement, and now wearing a boot for multiple hairline fractures of the left ankle. Dr seem to think all of this has been initiated due to low Calcium and D levels. Bones are getting weaker. Have to go for a bone density test and am on Calcium Citrate, and 50,000 IU capsules. I am 70 yrs old, so I guess I shouldn’t complain, but I have also had other fractures, lots of pain in all the joints, and deteriorating discs in the back. Guess I should have listened yrs ago. One good thing I can say, is I have had the same primary care doctor for 20 yrs., and when I tell him I have a problem, he listens, and he follows up on it, and we work together to find an answer.

  301. Have been reading a lot of your blogs about Vitamin D making you feel nauseous. I always take my 50,000iu’s at night after I’ve eaten dinner. I also take my daily D intake on a full stomach. Never feel sick doing it that way. By the way, I don’t believe taking Vitamin D causes sleeping problems or heart problems, I believe it’s the DEFICIENCY. I was having sleeping problems long before being diagnosed with VDD.

  302. Vicki M.
    I tottally agree, In other words taking vitamin should cure u and make u feel much better ! not cause sleeping or heart problems. Its supposed to make u feel generally better.

  303. Lisarose
    Happy to hear about level 25 ! =D , but still as u said below normal
    Now u need to check on ur thyroid ;) ,,

  304. Hi all!
    Lisarose gave great advise, keep a copy of all your labs, keep them in a folder. Its good to keep track of your progess and also you need to double check that what your doctor or nurse is telling you is correct, they make mistakes.
    Still waiting on my labs, makes for a long week. I am praying that these results give me the answers I sooo need.

  305. OMG I LOVE VITAMIN D hahahah :P

  306. Thank you Amna. The more I think (dangerous) it seems more women are low in D than men. I feel we all have some sort of an autoimmune problem that also needs diagnosing and addressing. Have you all had your thyroid checked? Ferritin levels? Gamma Globulins? Ana? Sed rate? These are good to get like now.

  307. Lisarose

    omg ive never heard of those , i hope i dont need to check them due to my young age !! ,, /Its just my vitamin D is low. :):)

  308. Does anyone else get muscle twitches? That is my new symptom. Also do you feel your shooting pains in your bones too?

    At this point I have been tested for most everything, all okay. Final test is lyme w ingex.

  309. Amna, forgive me but I forgot your age. Thyroid is in the autoimmune family as is Lupus and Rheumatoid Arthritis and Sjogrens (sp) and others. These autoimmune diseases spare no one and can appear as young as in their twenties. I am in my mid fifties now and I have felt bad for a long time. My SED rate last year was normal. My antibodies for thyroid and parathryoid was very high. My ANA was normal and the SSA and SSB for Sjgroens was ok but the head and neck surgeon still suspects I may have this and he suggested a needle biopsy of the lip as this is more diagnostic. My intention is not to scare anyone but doctors do take back seats to women’s complaints and pat us and tell us to take another valium and everything would be fine. A Cardio did this to me and I was not fine. The lame brain put MI on the EKG report (heart attack) but never told anyone. I found out about it when I went to get my reports 6 months later. This heart attack still appears on all my EKG’s.

  310. I’m back. Had the appt w/my RA doc today and my D level is 12. Also, this is not to be ignored, but my B12 is low too. I asked her what she thought the cause and she said not getting enough sun or wearing sunscreen. Well, au contraire, I walk at least 15 minutes each day in the sun with no sunscreen…have for a long time, as well as take a calcium supplement daily that contains vitamin D. So I threw my theory at her, since the rx says no magnesium while on it I think that may be a big culprit. Most of us seem to have GERD and/or IBS…I’ve been on meds for both for years and they all have magnesium. Perhaps that’s reducing our absorption rate. And, we all have some sort of auto immune disorder. The other symptoms seem to be the results of the VDD, aches in muscles, joints and bones; burning/tingling; sweats; heart palps; joint popping, etc. I’m fortunate to have no depression or fatigue. At any rate, she thought my theory held water. She’s running some more tests and going to confer with some colleagues.

    Amna, my first thyroid problems began when I was 13. For some reason as I got older my count improved and I came off the meds. It has only been three years ago that I was diagnosed with the auto immune hypothyroidism. I had an ultra sound of the thyroid last week and it said there were signs of thyroiditis. I asked the doctor about it and she said that was an inflammation and I don’t recall knowing I had that. But, we can have all sorts of strange things and never know it. And, your English is very good!!!

    I say let’s all keep on the D and see what happens. She wants me on for 3 mos of 50,000 units/week, then 1,000 per day for a month. No side effects from the D (yippee).

    Thanks all, your support and input is very valuable.

  311. I have been on 50,000ius weekly since last October, along with the 1500-2000ius that I take daily. Last October, they couldn’t detect any Vitamin D in my body. I am only at level 17 and I garden all the time, no sunscreen and walk 45 min. every morning. I had terrible IBS for a long time. It seems like it has improved a lot recently. And I have always had anemia and B12 deficiency. Anemia as a small child and B12 shots since my teens. WHAT IS CAUSING THIS!!!!

  312. Well I got my results back today and I am so relieved to find out that my Vitamin D is almost normal! I never thought I would get there soooo sooo happy.
    And.. my thyroid has gotten worse and looks like I am going to have to go on medication for that. I guess now my thryoid is going to take a wack at my health now that my VDD is in control. To hyperville we go!

  313. Vicki M.
    Lack of vitamin B12 , u dont eat properly =]

    Leelee
    Oh Congrats. though take care of the thyroid =]

    Sherry
    Hope u feel better.
    BTW thyroid disease is our family from my dads side. but luckly we dont have any issues about that…

    I’m look forward for hormones blood test.

  314. Troy Suzann says:

    Vicki M. Malasorbtion issues might be causing problems as well. An example would be Lactose intolerant or Celiac Disease which both can cause issues with absorbtion of vitamins into your system. My doctor is checking me for celiac disease because of my VDD, plus other deficencies… I also have had what was thought to be IBS. I eat right and take supplements but the vitamins are not sticking :( . See Jan’s posts and mine. It may not be because of this but it would be something to check.

  315. Anyone have an answer to my question above???

    Also anyone who is on GERD meds–(like I am) It is KNOWN to cause malabsorbtion of d

  316. Lesley
    I do have muscles twiching.
    I dont know why i dont have bone pain like you guyz ..

  317. How much calcium and other minerals are people taking with 50,000 IUs of Vitamin D?

  318. I take 900mg of calcium

  319. just came back from my endo doctor.
    he put me again on 300 000 IU for the next 3 months. and today I took my 3rd injection.

  320. I have been taking the 50,000IUs once a week for 6 weeks. My vitamin D level when the deficiency was discovered was 12. After a month it was 15.7. I have a bit more energy and am not so depressed feeling, but my muscle soreness/aches are still bad. How long has it taken others to recover and lose the muscle aches? In addition to taking the 50,000IUs I have been trying to sit in the sun as often as possible. Should I be doing anything else? I have been tested for parathyroid disease and do not have it. I don’t know why I developed this deficiency.

  321. I just got a call from my dr today that my Vit D level was at 17. I don’t really know what it means, I am picking up a prescription for it tomorrow, but I have to wait a few weeks for my appt with him to get all of the details. They also found that my tryroid is low. Is 17 a really bad number to be at for vit D??

  322. Julie
    honey ur level was 12 and after a month it became 17. I losed my muscle aches and soreness when my vitamin increased up to level 20. I no longer have these cramps or whatever they are called. Plus what ur doing is completely right by letting urself out in the sun. I also need to tell u, do eat more kinds of fish esp. salmon and more diary products including milk, make sure that you take in calcium with ur supplements of vit. D.

    Val
    Its a very bad number ofcourse ..
    I’ll tell u
    any number below 30 means a defeciency.
    Like my number was 6. Severly low. urs too. Mild to moderate defeciency, Can u tell me ur symptoms?…

  323. Matt my Endo told me to take 2-3 Oscal with D per day also to get calcium in me. This is the first time he told me this after three trials of 50,000 units. I am to have repeat blood work in a month. He stressed the improtance of having Ionized calcium taken. (lood test) This is always low but the the calcium that is in the Matabolic series is always normal. Go figure. He seems to think I have secondary or Tiertary (sp) hyperthyroidism. I spoke with the head RN at the head and neck surgeon’s office and she is delighted I am seeing someone new in October. She said I am soo atypical. Good Luck

  324. Amna,

    Well I originally went to the dr. to check my thyroid. My husband is in the Air Force and the dr’s on base decided to send me to my gyn off base. So I went and he did some lab work and wanted to check my vit D level as well as my thyroid. I didn’t even know that vitamin D was that important. But for the past few months I have been extremely tired. I just thought it was because I have two little ones. But I was having aches in my bones. Mainly in the left side of my body. It would start with my arm and eventually move down to my leg. I get uncomfortable at night. I can’t stay in one sleeping position for very long because I get a tingly feeling. And I noticed last night that my heart was beating funny every once in a while…like really heavy and slow. I get dizzy a lot too. I don’t know if it’s all because of that. But now that I know a little more about having low vit D….it’s all starting to make sense. It’s still a little confusing though. I mean, is this something I’m going to have to deal with for the rest of my life? Thanks for taking the time to reply :)

  325. Val,

    Oh yes, vitamin D does alot of things especially heart palpitations I had them they were awful, My stupid doctor gave me the first supplement of D without calcium for 1 month ! and calcium is really important, but thank god i told him about taking it. So u 2 make sure u tell ur doctor about calcium cause its deeply connected to vitamin D. Me2 I didnt recognise that its that important, my doctor told me it is the most important vitamin. and calcium is the most important mineral in the body mainly for heart. I hope u get better soon. It will take time just be patient.

  326. and ofcourse not for ur rest of ur life. Just whenever u vitamin D gets increased u will feel the difference.

  327. Thanks for listening… :)

  328. Val
    You welcome.
    Do u mind telling me ur age?

  329. Amna–I do eat right. Have always had problems with B12 deficiency. Was diagnosed with it in high school.

    Troy Suzanne–was tested for celiac disease through blood work first and then even a biopsy. Perfectly fine. Also am not lactose intolerant. And symptoms of IBS have improved since I am taking Vit. D now and my level has risen from nothing to 17.

  330. I just turned 24 in July. I have never had any health issues what so ever! till now….

  331. Vicki M.
    oh right. then hope u fill up ur vitamin B12.

    Val
    ooh me and you are the youngest here that have a defeciency in vitamin D. Loool
    the cause of ur defeciency it might be the sunlight problem.

  332. Hi all,

    Glad to hear some of you are getting good results! For the others don’t give up hope!!

    I got so frustrated today…I received a letter from my dr’s office stating that I was overdue for my retest on vit D. I am only on my 4th supplement so I have four more weeks left of 50,000 iu. I was initally instructed to have the blood work done after 8 weeks…so I called the nurse and told her I wasn’t anywhere near done and asked why she sent the letter. What a surprise!!! She had no idea!!! Anyway, during this conversation she reminded me to continue with the rest of the Rx and make sure I come in after the 8th week. She then said make sure you are not taking calcium with the vit D. I said I was and she told me to stop until I finish the 50K. Ugh!!!!!

    Were any of you instructed NOT to take calcium with the high doses of VitD?

    Best wishes to all

  333. My D was undetectable on a test that measures down to 7. That was Jan.’08. I took 50K iu/wk for 6 months, retested, and my D is still undectected. So for the past 2 months I’ve taken 2 – 50K iu/wk per wk. I have felt so bad, for so long. When my doc said I had a perfect bill of health I went home & cried, repeating over & over ‘I’m dying”. I even take 1,000 iu D3 on days I don’t take my Rx. I had a D deficiency as a child too. I had rickets. That all cleared up – I assume – on it’s own. Is it possible to be unable to uptake D orally? I had a bowel resection 6 yrs ago – Doc said I didn’t lose a whole lot. I feel awful though. It’s been since Jan. & nothing. Are there specialists in this area, or centers concentrating on this?

  334. I don’t get much sun, so several years ago I asked my endo (I am hypothyroid and also had very low bone density) to test my Vitamin D levels. It was 16, which was described as “severely deficient.” I tried many courses of those 50,000 I.U. prescription pills (Vitamin D2) and they barely got my results into the 20s. So I told my doc I wanted to try over-the-counter D3 instead.

    I take 4000 I.U. per day, plus the D in my multi-vitamin PLUS what I get in my food. It took a year+ of this to get my blood results to 30, and about two years (!) to hit the 40s. My endo tests my D levels twice a year. And occasionally my primary doc tests it too, mostly (I think) because he’s so shocked at the amount I take. My bone density has improved. Fatigue seems more or less the same. But I feel less of an ache and not so weak. So if your prescription pills are not working well, maybe you’d do better on D3 (cholecalciferol).

  335. I read through all the comments here. Strange how it was so many of our GYNs rather than family doctors / GPs who are the ones testing for vitamin D.

    My Vitamin D level was 14. Thyroid normal. Don’t know about calcium, not even sure it was checked. I am otherwise healthy as far as I know, although my white blood cell count was elevated (doc said it should be 10 or below, it was 16.5) which indicates some type of inflammation.

    My main complaint to the GYN was ridiculously heavy menstrual periods over the last few years. It never occurred to me that other things – restless legs (especially calves) at night, weird chest pains, weird tingling arm/hand pains, general fatigue and low energy level despite sleeping 9-10-11 hours, and some brain fog when I’ve always been sharp and had a great memory – might all be connected.

    I do not have any kind of chronic pain, but when I sit for even a little while now I have to unfold myself out of a chair slowly because my joints hurt and are stiff. I’m 43 years old, not 86, so this never seemed normal, but also not something I would bother to mention to my doctor. I tried once to talk about the hand/arm tingling and chest pains, GP said it was “probably anxiety” and then did exactly nothing about it. I once went to the ER several years ago because I thought I was having a heart attack but everything checked out just fine.

    I pick up my Rx tomorrow for the 50,000 IU dosage as others have been given. I wonder now if I should ask about the calcium. Some people wrote that the Rx says not to take magnesium antacids, which sounds like magnesium shouldn’t be mixed with vitamin D. But don’t you need magnesium for your body to absorb/process the calcium? All these vitamins and minerals are so intertwined.

    Its an interesting question asked above – why are so many of us vitamin D deficient when it really should be pretty easy to get what we need?

  336. What a great website! I have been making plans for the last few days for my death from bone cancer. Truly. I was convinced that was the situation. I haven’t read EVERYTHING on here but do have a new outlook. Thank you. My symptoms were so wacky, they didn’t seem believable, no pattern. Finally I talked to my doctor PCP at Kaiser, young guy and he LISTENED. Started about 6 or 7 months ago. Wake up in the middle of the night with a stabbing pain in my shin. My shin. What the heck? It was brief and horrific – like the worse toothache you ever had. I knew it wasn’t muscle and thought – it’s deep – it has to be the bone. Then another night it would be in the middle of my thigh. Deep horrible, like electric shock. Didn’t last long and I would go back to sleep. (Was someone sticking pins in a little doll that looked like me someplace?) As time went by, duration increased, more painful, stabbing electric shock. Almost always SHIN and THIGH. Duration increasing. ALWAYS AT NIGHT. No pain in the daytime. Pain moved to outside of ankle, then other leg – shin, thigh, ankle. I never take pain medication but I just couldn’t sleep with the pain. Started taking TYLENOL PM. Did help me sleep but I had the pains in my dreams. In the last month or so, the pain would sometimes make a brief stabbing appearance during the day. Also my BP, always low, had gone into Stage One Hyptertension. Related? Don’t know. Dr suggested taking some meds that would block the pain – some kind of nerve blocker. I told him no meds without a diagnosis. He sent me to a neurologist who checked me out and said, “it’s not a nerve problem.” He said he too felt it was a bone thing and I might laugh when he told me what he thought. No way. He smiled and said, “Sounds like growing pains.” Great I always wanted to be a long legged blonde. HE said he was ordering x-rays of my legs and lower back and some blood work. He said he would write to me with the results of the x-rays and then we would talk. At Kaiser the labs mail you results of tests at the same time they email them to your doctor. So yesterday I got calcium level good; parathyroid okay. Vitamin D – not so good. The test I took is called Vitamin D 25 Hydroxy. Range is 30-100. Mine was 14. So I researched test and reading everything (Wikipedia) it seemed pretty clear that it was probably bone cancer. So I have been preparing for that, even though haven’t talked with dr yet. Now I am not so darned sure. I will let you know. Bless you all. xxx

  337. SUNNY
    u have bone cancer?
    theres no such thing called bone cancer, its from the defeciency

  338. Meg:
    Yes, I was told not to take any other supplements , including calcium, while I was taking the D megadoses.

    Sunny:
    I had always had low BP, too. Then when I began experiencing all the other symptoms of VDD my blood pressure also went up considerably. Now that my D level is normal, my BP has also checked out normal the last two Dr. visits. Part of the increased BP may be from anxiety – wondering and worrying about what could be wrong. I was sure I was dying – that’s very stressful!

    Laura:
    Love your description of ‘unfolding’ yourself to get out of a chair. That, and everything else you described – restless legs (especially calves) at night, weird chest pains, weird tingling arm/hand pains, general fatigue and low energy level despite sleeping 9-10-11 hours, and some brain fog when Iíve always been sharp and had a great memory – seem to be classic symptoms of VDD.

    Hang in there every one taking the D megadose…..there are better days ahead for you.

  339. Do all of you get anxiety and panic attacks before knowing that ur low on D or after the diagonisis? ..

  340. and what i noticed is that i always get my symptoms at night time.
    is it a coinsedence or what?!

  341. AMNA,

    Symptoms only at night time was what was puzzling my doctors. Just does not make sense, does it?

    I don’t get panic attacks or anxiety.

    And sorry to tell you that I have two friends passed away with bone cancer.

    I have not been diagnosed with bone cancer. I came to that conclusion after a great deal of reading about the VITAMIN D 25 HYDROXY test results. NOT A GOOD IDEA to self diagnose. After reading comments here, I realize that bone cancer is not necessarily the case.

    What I also noticed on these comments is people puzzling over why they would have the deficiency. It’s not always that you are not taking in enough VIT D, but for some reason, your body is not utilizing it. And the reason for that is what the physician – with tests – needs to determine.

    As of now, I have no diagnosis. Waiting to hear from neurologist as to his opinion of tests. I am also starting Vitamin D therapy today. My daughter who has a Bio Chem degree, also reps several high grade lines of supplements – the kind you get at Whole Foods, etc. She reps one company who makes such a Vit D supplement so I will let her supervise this until doctor comes up with something. We are a vegetarian, health food, green family and all pretty healthy. I don’t think I mentioned my age as 74.

  342. Hi I was just recently dx and was just wondering if anyone else had the same symptoms as me. Some of my symptoms include pimple like rashes on my arms, burning, throbbing pain in feet and legs after being on them for awhile, excessive yawning and many more. Let me say that I also was diagnosed with low b12 back in April and also pernicious anemia and have to be on injections the rest of my life. But like many of you there has been no definite answer. I have been sick since i had my son 6 years ago and I am still waiting for a final answer why all this is happening. I have dealt with fatigue for a very long time and it has been a big problem in my social life. My biggest problems for me have been my feet and legs and no one seems to know what to do. I also noticed that everyone seems to be on a D supplement for a while. My DR. gave me one 50000 iu for the month then he will retest. I would like to know more of symptoms and medications that everyone is on and maybe some of the other diagnosis.

    Thank you

  343. Vickie,
    Thanks for the response…I guess I’ll stop the calcium…wish they had told me that 4 weeks ago! As I said, I am so frustrated with my doctor!! I called for an appointment with someone that was highly recommended but wouldn’t ya know…they don’t accept our insurance plan. Next week I will try and get in with another highly recommended Endocrinologist in Boston…I am willing to make the trip to see someone good.

    Sunny and Laura
    Until I found this thread…I was sure I had a deadly disease (cancer), still not sure but reading the posts here gives me hope. I stopped telling everyone including my husband how bad I feel because the pain is constant. Legs, calves, neck arms, shoulders. I was told it was fibromyalgia which one doctor told me, “that’s what we call it when we can’t find anything”. I even enrolled in a pain management course which sometimes made me feel like I was crazy (didn’t help)! My kids and husband can’t understand why I don’t want to go for long car rides, or hiking trails in the mountains or just a trip to the coast like I always loved to do. Everything is a effort made even worse by the intense pain…heck I just about have the energy to do what I need to do. It’s funny…I used to be a compulsive cleaner (anal as my family would say) now if I drop something on the floor…I think twice about how I am going to pick the dang thing up!!
    Last winter I started with the heart problems, PVS’s…my blood pressure escalated as well…I always had normal to low BP. My lower extremities are full of fluid. Can’t get into shoes comfortably (thank goodness for flip flops). Right side is twice the size of left which is lovely!! If I take the diuretics prescribed I can lose up to 9 pounds in one day but then that depleats all the nutrients needed to stay healthy. Talk about catch 22! Something else interesting was I developed chronic bronchitis and couldn’t fight off the infections. I had several sinus infections and upper respirtory infections from Dec until June of this year. I had a few good months with that and I am back to the chronic cough and upper respirtory thing. Just happened out of the clear blue (maybe allergy season). My immune system seems to be very weakened and so am I!!! I am 56 going on 90 (actually my daughter in laws grandmother is 101 and in better health)!!!!

    Best wishes to all of you!

  344. good luck to all
    thank god my doctor is a consultant and understands everything.

  345. Meg:
    Your story is just like mine. I’m 52 years old and when it really smacked me between the eyes that something more was wrong with me than age, being overweight, a bad back, etc., was when my parents came to visit from out of town last winter. They are both in their mid-70’s and they were able to run circles around me! I got depressed after they left because I had come to the realization that something was definitely wrong with me. I was convinced that I had cancer , too. I was tested for so many things and had myself convinced it was so many things. First it was Lupus, then RA, then Fibromyalgia. I’d never heard of VDD and so when my doctor told me he wanted to test me for it I just chuckled to myself and thought ‘whatever trips your trigger, doc.’ Later when I got home , while waiting for test results, I got on the internet and began reading about VDD. Amazing – so much of what I read described me – it was like reading my own story. So when the doctor called with my test results I wasn’t surprised I was deficient. It is still a mystery to me as to why I was deficient. With winter coming on I do worry that it will happen again. At least if it does, my doc and I will know what to do.

    All: Since recovering from VDD , I tell everyone to get their D level checked. Unfortunately, some people get a different diagnosis. A friend of mine became ill last winter – no energy, lots of pain; eventually ended up in a wheel chair and was bouncing from doctor to doctor looking for an answer. I kept saying “have your D level checked.” She did and her D level was pretty good…about 35. Fortunately – or unfortunately (depends on how you look at it) , a doctor finally listened to her and ran extensive tests ….she is full of cancer in her bones. It is scary to me to think that it took months and lots of doctors for her to be diagnosed. She had her first radiation treatment yesterday. I was really praying that her problem was VDD and it would be an easy treatment for her to begin feeling better. God has other plans for her. Anyway, if we don’t get answers we need to be persistent. If a doctor won’t listen to you go to a different one until you find one who will listen. If your D level comes up to normal but you still hurt, are tired, or weak , etc. Go back to the doctor. There may be something more there. We each know our body better than anyone and it is up to each of us to be our own best advocate. One thing that helped was on my third visit – which was going to be my last if he didn’t listen – when I handed my doctor a typed list of every symptom I had – when the symptoms began and how often I have each symptom, etc.

  346. Vickie
    I getting to ur point. but what I think is get ur calcium test and see if its low or not. cuz calcium is connected with vitamin D, and lack of calcium can cause many problems too !

    and when calcium is low there’s a name for it which called Hypocalcemia .. which affects everything in the body like if 1% is lost in the blood it will sure affect the nerves and nervous system !!
    so each one of us must check the calcium levels and if low we must correct it.

    get it from me as an advice. I went all through this in a very young age. but now i got releifed :D from all of this.

  347. sunny I was convinced I had bone cancer too got a bone scan even! My pains are like yours but my d level was 28 so not super low. I just got it re checked so we will see. My symptoms seem to be getting worse muscles are now twitching all over my body all the time and the joint cracking is worse. I should have Lyme results next week…

  348. Vickie what tests did yourfriend have run for her for her bones!I agree we need to test test test till we FEEL better

  349. Les:
    She had blood and urine tests first that indicated there were cancer cells. Next they did a bone marrow biopsy and a bone scan. She is in an unbelievable amount of pain and is taking morphine for that. For months she went from doctor to doctor and they pretty much treated her like it was in her head. At one point a doctor did diagnose fibromyalgia and was treating her for that but after a couple months she continued her search for a doctor that would listen to her.

  350. Vickie I am so sorry your friend is going through this. I just lost my dad to pancreatic cancer-he was dx 5 21 08. He had odd symptoms but it was chalked up to other things-I always told him to get a second opinion or new doc as that is how he raised me.

    Did your friends prior docs not run blood tests. How long was she having syptoms? She may have a lawsuit. I know how it is to go from doc to doc and not be taken seriously I have been to at least 9….

  351. LES
    So sorry about your dad. Pancreatic cancer must be very difficult to diagnose. I notice people are gone so quickly after diagnosis. That is the way I would want it.

    My friend who died with bone cancer was actually a doctor. He was in stage 3 before it was finally diagnosed. He kept saying how embarrassed he was.

    JAN
    I too am senior citizen in North Bay. Walked to post office & back in sunshine yesterday and legs were screaming by the time I got home!

    Plus, I always use SPF 30. Guess that blocks sun. I have heard it is enough to get it on the top of your head.

    We’ll all hope for the best and work on our VDD. There is a book called the Vitamin D Cure – I am picking up today.

    Hope this book gives me new good information.

    Best to all

    Sunny

  352. SUNNY
    where do u live ?

  353. Hi all,
    found this on a website, make sure you take your calcium and magnesium with your D:

    Adequate calcium and magnesium, as well as other minerals, are critical parts of vitamin D therapy. Without calcium and magnesium in sufficient quantities, vitamin-D supplementation will withdraw calcium from the bone and will allow the uptake of toxic minerals. Do not supplement vitamin D and do not sunbathe unless you are sure you have sufficient calcium and magnesium to meet your daily needs. Weston Price suggested a minimum of 1,200-2,400 mg of calcium daily. Research suggests that 1,200-1,500 mg is adequate as a supplement for most adults, both men and women. (Magnesium intake should be half that of calcium.)

    Here’s the site for those interested:
    http://www.westonaprice.org/basicnutrition/vitamindmiracle.html

  354. I was also told that you needed to take calcium to help with the absorption of vitamin D, but I AM going to call my endocrinologist and make sure. Because my flaky general practitioner doctor recommended this, and frankly, I don’t trust her as far as I can throw her.

  355. What if magnesium is high in our blood ?

  356. Troy Suzann says:

    Jennifer, how long have you had your rash on your arms. Does itch? I have red dots and pimple like bumps on my arms too, but they do not itch. When I went to a dermatologist, he told me it was Keratosis pilaris and there really isn’t any medicine that will take it away completely. It is hereditary but it usually gets better as we age and that the sun helps it. I have always wondered if it had something to do with Vit D, even before I was found deficient. Mine has gotten worse over the the last two years. http://www.helpforkp.com/keratosis_pilaris_about_kp.html

    There is also something called Dermatitis Herpetiformis which is related to Celiac Disease (wheat allergies) which causes an itchy red rash with little puss filled bumps. Celiac Disease can cause vitamin deficiencies. http://www.csaceliacs.org/dh_defined.php

  357. Phyllis Rettman says:

    Lord Ya’ll… I have been to countless doctors in the last 15 or 16 years! It has been all in my head… LOL… Well if that’s the case I wish it would leave the rest of me alone.
    Sick to death of the anti-depressants and the other countless meds that made me so sick or put me in the bed for days. Walking around in a daze… couldn’t tell you my own name half the time.
    “Seeking a high” is what I was told the last trip to the ER cause I had a headache so bad I couldn’t see to dial the phone for help. A neighbor had called me the night before and I just punched redial and told her to get Momma. Good thing she had not left for work yet that day. Good thing she knew my Momma.
    Why hadn’t anyone seen this Vitamin D thing before this? Why did they put me through Hell all this time for something they couldn’t figure out? Why was it me that was lying about the pain?
    Why can’t the doctors now a days be more like the doctors that were around when I was a kid… If you were sick… they did not stop till they knew what was going on with you.
    Where is “House” when you need him?
    Huggs and Best of Luck to Us All!
    Phil

  358. Phyllis Rettman says:

    By the Way… I’m just starting the meds today. I’ll let ya know how I come out with them.

  359. troy suzann,
    i wrote a while ago about the bumps on my arms clearing up after i started taking the vitamin d. mine were mostly on the backs of my upper arms. i remember having them years ago when i was a teenager too. when i was about 19 i discovered prevention magazine and started taking vitamins on a regular basis. after a while the bumps disappeared. i thought at the time it might be either the vitamin a or vitamin d that was helping because i think i had read that those were good for the skin.
    now all these years later (i’m 56) the bumps were back. probably because i had had digestive problems with my pancreas not producing enzymes like it should. and i had the h. pylori bacteria. those things are cleared up now with the help of my naturopath and i’ve been taking vitamin d since last october. not the huge 50 k iu’s like some of you, but just over the counter d3. my level has been gradually going up from 14 where it started to 32.5 last time it was tested in june. my naturopath wants it to get around 70. i think 32 or 35 is the absolute minimum level for health. it’s funny when doctors say your level is fine when it’s at the bare minimum. i always want to see my test results and get my own copy. my sister had her vitamin d tested after i told her how low mine was. she was just barely over the minimum and her doctor told her it was perfectly fine.
    well, that’s my rant for the night.

    kathy

  360. My OB found that I am low in vitamin D. another doctor discovered it about 2 years ago, but did nothing. When my OB saw how low I was and that the other doctor did nothing, he was pretty ticked off! He put me on the high dose VD and I take it once a week. I have had burning in my hands and feet, off and on, for several years. Now it is there all the time. I have been on the Vitamin D for 3 weeks now. I have noticed some improvement…but it will feel good for a day or so, and then bad again. It is very discouraging to feel half way decent and then to start feeling bad again. I also have muscle pain and fatique. It hurts to walk. Has anyone else had these symptoms, and if my pain is due to low vitamin D, does anyone know how long it should take to feel better.

  361. Hi Gina,
    Yes, I have the same symptoms and more…been on Vit D mega doses for 5 weeks with no improvement, still hoping though!!
    Hope you feel better soon!

  362. Gina

    for 6 months maybe , like me im 3 months on treatment now i feel better but not yet healthy.

  363. What is everyones worst symptom? Mine would be the roaming bone/joint pain. The continued muscle twitching is annoying.

    Getting an MRI and nerve testing to rule out other things. I just dont know if Low d could cause all of this, mine was not THAT low…but who knows. I would rather be on the safe side and check EVERYTHING till I feel better

  364. Lesley:

    I just had my vitamin D levels done and got my results 9/2/08 and it was 24. I have taken one vit-D pill and already fill better. I have hypertension, diabetes & hyperthyroidism. The last year I developed peripheral neuropathy to the point I can hardly walk. My feet were numb to the touch, but at the same time they were burning, stinging and when I walked it felt like hundred’s of pins sticking in my feet. I also starting have muscles twitching about a month ago. Fatigue has been a major problem.

    This may sound strange but 24 hours after my first pill my feet or so much better I have been up most of the day.

    I hope these comments might help someone else to be checked for vitamin DD.

    Juanita

  365. Juanita,
    You have my exact symptoms. The burning in the hands and feet is horrible! It hurts to walk! I have been on Vitamin D for 3 weeks now. I have experienced some relief, but it is still so up and down. From what I am reading here, I guess it will take time to get better. Please keep me updated on how you are doing. It’s such a relief to read that others have the same problem…at times I feel like maybe I am just crazy!!!

  366. I still can’t get over how we all have these wierd symptoms, and all the conflicting advice. I finally called my pharmacist yesterday because mine was the rx that said NO ANTIACIDS WITH MAGNESIUM. This was from Safeway pharmacy. She said that even the circular in the vd didn’t say it but their computer spit it out. Someone out there has to know what this is all about. She’s promised to get to the bottom of it for me but who knows. My doctor still thought I wasn’t getting enough sun, but I do and I take a supplement with my calcium chews every day. I think it’s the magnesium since I’ve been on Prilosec OTC for 8 years as well as a natural IBS pill for 4. Both have the mag. Also, I’ve taken two doses of the 50k and do feel somewhat better. No stabbing bone pains and not as much burning/tingling. I’ve felt more energetic too but have to get at least 7 hrs sleep for that.

    So, I’m saying we get to the bottom of the dosage…do we or do we not take calcium and magnesium? Who on earth can tell us?

    I’ll let you know what the pharmacist comes up with. I’m on the rx for 3 months, then 4k per day for 1 month.

  367. The neurologist has DECIDED that I have osteoporeosis & is passing me back to my primary care provider. It doesn’t quite fit for me but I am asking for the DEXA test to confirm it. I am not going to accept some diagnosis “by default”.
    Am taking 5000 IU of 100% Pure Cholecalceferol twice a day, as well as a multi with D. Still haven’t seen results of leg x-rays taken last week. After diagnosis, then a specialist.
    I am reading the VItamin D Cure. Seems it is an article that was stretched to make a book ($28!) but am absorbing all information.

    Our nutritional “bible” is Phyllis Balch’s PRESCRIPTION FOR NUTRITIONAL HEALING – can get at Costco. She is says not to take Vit D without calcium.

    I will pursue this after a definitive diagnosis.

    Don’t remember who asked – I am in Southern Sonoma County.

  368. Gina

    When I took my 5000,00 of vit-D yesterday at lunch, After a few hours I started feeling better.. This morning when I got up my feet hardly tingled or hurt when I walked. But when I got between the sheets tonight the pain was quite bad. Also I have a damaged nerve at the L-5 and S-1 with a slightly protruding disc that gives me trouble. I was hoping that pain would go away and I wouldn’t have to take loritab any longer.
    I am on cymbalta 90 mg. lyrica 50 mg. t.i.d. glucophage, t.i.d.
    Three different kinds of blood pressure. I had a brain aneurysm 3 years ago. They don’t know if any of it is connected to the vit-d. My memory is not good and fatigue is awful

  369. do any of u get ears cracklings?

  370. Oh Amna, you’re so cute. I’ll bet we all have crackling ears! You know we can’t blame everything on this VDD but would love to. It seems that we certainly all have symptoms in common. Not only the pain, but I for one am waiting for some of this unexplained weight to fall off with taking the D. I wish I had enjoyed lots of hamburgers, fries and hot fudge sundaes to get it on! It truly did start because I had surgery on both ankles in the past year and couldn’t exercise, but the pain has kept up in the ankles and this is why the orthopedic doc suggested these additional blood tests. Those roaming little zings to the bones are something else and I never told anyone about them for fear they would think I’m nuts. Thank God I’ve found this group of all of you.

    Sunny, I’m in San Francisco and someone else is too. But, I didn’t ask where you were. Maybe we’ll find a Bay Area Cluster of this, just like Mill Valley and the cancer!

  371. Hi Juanita, thanks a ton for your feedback. I am at 28…..so level 24 has been your original level since your symtpoms?

    Do you also have shooting body pains?

    I just found out today I have basel skin cancer on my chest. Dr said it is the most slow growing and easiest kind to treat-they usually just cut it out. I dont know though, I guess I am scared that my symptoms are due to cancer spreading into my spine hence causing my spine pains, neuro issues and shooting body pains. Dont know it that could cause all of this odd joint cracking though.

    What level d supplement are you taking?

    I just retook my D test to see if it has gone up (was only taking over the counter after dx), should have results tomorrow.

    BTW I am from San Fran too all.

  372. Sherry
    Looool it doesnt hurt or anything it just annoys me :P it started on this summer holiday we were in austria riding the telefreak up high in the mountains so my ears couldnt stand the pressure i guess from that day it started crackling ! hehehe I was just guessing if it was from VDD cuz at that time i was diagonised with the severe defeciency :D

  373. Hi Leslie.

    I a take 50000 MIU PLIV of D three times a week and I will continue my calcium with D also. Don’t let your mind take over until you find out about your basal cancer. If you just now found it I wouldn’t worry about.

    Let me know the results of your V-D level. (HA HA V-D I think VD would be easier to treat. Maybe a three day treatment of penicillin.)

    My body pains don’t actually shoot, I am just in pain. If I didn’t have such a understanding pain doctor, I would not have a life.
    I worked in the medical field for 32 years with the last 20 of that with a internist so I am not dumb on symptoms or diagnosis. But I found out I am very dumb when it comes to Vitamin D. I am so afraid of getting hooked on the condone. But my pain Dr. says we will deal with that problem when we get there.

    I am 67, I have had back pain for 15 years and only had the fibromyalgia and or neuropathy for the last three years. I think that is really when my VDD started and no one ever thought about I could have it. All my problems were diagnosed around my diabetes.

    The reason my internist checked my vit-D level was I told her I had started having muscle twitches. I was on two different Statins when I started having wasting muscles so I stopped taking them against the advice of my cardiologist.

    Since I found out about the VDD I have been doing a lot of thinking. I really starting having small problems about 10 years ago when my husband came down with lymphoma. I retired to take care of him. He developed staff in his back from the treatments he had for chemo. Stayed the hospital and/or the
    SNU in the hospital for 3 months. I went up every morning and stayed all day with him and went home at night and fell in bed.
    Never seeing the sun at all. That’s when the fatigue and weight started coming on. I weighed 132 and gained up to 210 before I knew it. I have lost back to 185. After he went into remission I was ready to go back to work but I couldn’t even do my house work from the back pain and the fatigue.

    I hope this is making sense.

    Do you have dry patches on you elbows or dry sores in you nose that bleed every day.

    I see you are from San F , I live in west Texas where the sun shines everyday and the mosquitoes will carry you off even in the heat of the day. I really don’t get much sun.

    Let me know what your test show and how you are doing.

  374. Wow, I just went to the doctor last week due to severe fatigue. They did bloodwork on me and the doctor basically dismissed me saying that 95% of the time complaints of fatigue are “emotional”. (Gee, thanks lady… Diagnose me “mental” before you even draw the blood.)

    I have had to hound this unprofessional doctor for the blood results. Today they finally told me my bloodwork was perfectly normal, “except for low Vitamin D…. so make sure you take your multivitamin.”

    Doing a search, I found this site! I have asked for a hard copy of my bloodwork so I can see precisely what my levels are, and hope that perhaps this can explain my fatigue and overall chronic aches and tiredness! Thank you!

  375. Hi Juanita. I guess I am freaking out over the basal cancer because I do not know how long I have had it. I use to have a VERY freckled chest (so I would have never noticed the pink spots), got IPL last yr and then I think I remember seeing it but ignoring it. I only took notice when it started to bleed. So I am so scared it has spread into my body, though I understand that is rare. I am actually going to see my GP in an hr to ask him about this and discuss, also to get my D labs back.

    Are you a Nurse? My company places nurses and hospitals nationwide…wish I had become a nurse.

    I actually lost weight..normally I am 107 and I got down to 101. Its slowly going back up. Of course now I think, oh duh its because of skin cancer. I am definately a hypochondriac as I am sure you can tell..its hard not to be when you dont feel well and are not FOR SURE what it is.

    No I do not have dry patches. Do you think that is related to D?

    I was raised for the most part in Houston TX (oh yeah out in the sun all the time, guess thats one of the many places I exposed myself without proper sunblock!) It is foggy here a lot. Well now I will be even more careful with the sun, so if it is D making me feel this way then I have tough challenge ahead in terms of getting D without sunlight!

  376. UPDAT- Okay so my D is pretty much one point away from normal now.

    SO I continue my search as to what is causing my pain etc. My dr said that basel RARELY mets to other areas. I get an MRI of spine and head tomorrow to rule out other things. ALso getting nerve testing done.

    If all the above clears then dr said could be fibro brought on by MAJOR stress I had 3 months ago( dad was dx with term pc) shortly after his dx all of this started to happen………

    Juanita-Not sure if you would know, but I had a bone scan 2 months ago-came back clear. IF I had cancer in my spine, think it would have shown then or woud I have had increased calcium etc in my blood?

    Thanks all-keep up with your D and PLEASE follow through on furhter testing until you are no longer in pain.

  377. I am starting to feel at my wit’s end. I just got the results of my lab test. I am at level 15 down from level 19 two months ago and level 17 one month ago. I have been in the sun every day over the last month, gardening, walking three miles every day, even sunbathing in a 2 piece. I have continued my daily 1500 to 2000ius of D daily as well as the 50,000ius weekly. What the hell else can I do!!!! I just sent my doctor an email and asked to see the endocrinologist again. I want them to figure this out.

  378. Vicki M.
    Strannnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnggggggggggggggggggge !!
    or it might be lab mistake ! ,,

  379. Hi Guys:

    SUB: Vit. D with other minerals and vitamis? Should we or shouldnt we.

    Just when my low levels of Vit. D were found, I was trying to find out why sometimes I feel good and most times not. Finally, it dawned on me one day, on my way to Rochester – NY, that whenever I took CALTRADE I felt better. Upon finding my level of Vit. D my doc placed me on 50,000 IU per week with 1000 mg of Calcium everyday. Still, a few days after my weekly Vit.D, of 50,000 IUs, I was feeling a little bad. So, on my own, I would take a pill of CALTRADE every other day during the wek. It makes me feel good. Also, I take multivitamin+mineral supplement of Centrum A to Z two to three times a week. This had made me feel 95% good. I do have very very slight soreness in muscles and my toes- my feel are not rough, dry and burning like before. I dont have night sweats like before and I am not depressed like before. I think most Doctors are just machines – I am saying that despite the fact that 2 out of 4 in my family are doctors.

    If you read on hypertension, you will know that if the Sodium, Calcium, Mangesium, and Zinc are not in a proper proportion our BP problems arise. So the body is a machine which depends on so many things. Best way is to eat right and excercise.

    As for as the supplements, I will suggest to start with half a tab of Caltrade 600 and see how you tolerate. Slowly increase to full tablet once a week. It also contains 400 IU of Vit D too. I bet it wont hert if done slowly. Dont start taking Sun too much right away.

    AMNA: Antacids when taken with Magnesium may cause diarrhea because it disturbs the balance of all the minerals. There is a safe ration of Calcium to Magnesium. Anything too much can be dangerous. For example, too much or too little Potassium may kill you.

    Let me know what you guys think.

  380. Matt

    oooh greatttttttttttttt what i have read just now.
    I hope u feel better. but i think its not a good idea to self diagonise u have 2 tell ur doctor ok? .. just to be on the safe side :D

  381. oooooh now i get what u meant ,, when i said wat if magnesium is high in our blood i was just asking that do w have 2 take magnesium and calcium togather cuz i dont remember who said so.

    but from 2 days i did a blood test on every mineral exept iron and magnesium im gonna do tomorw,

    well everything is normal, we compared our results with my mom =P hehe mom had low phosphorus , the doctor told her take it from ur daughter ;P which means eat alot of fish !

  382. Leslie,

    As far as your concern about cancer in your spine – I am not qualified to answer you, sorry.

    Maybe someone else in the group can help on that subject. I know you are concerned and scared but the test they are going to do should help in finding a diagnosis.

    Keep in touch I am hoping for good results but at the same time hope you find some answers.

  383. Sunny:
    I ordered The Vitamin D Cure from Amazon and it should deliver in a few days. Have you learned anything new reading it or is it pretty much the same info a person can find here and in other areas of the Internet?

    All:
    I had been feeling great – really, really great – for a few months; was pretty much pain free but this past week muscle pain has returned. Particularly bad in my legs and low back. Also experiencing tingling in my hands.

    I’m on 1000 IU daily of Vit D and three weeks ago my D level tested at 50! My doc says I don’t have fibromyalgia because I don’t have the pain points in the neck and shoulder area – only in the hips and legs. Something is going on though. It hurts to get out of bed, rise from a chair, and bending to pick things up off the floor. I don’t want to get as bad as I did last winter…just thinking about that brings me to tears.

  384. Mrs. Smith says:

    I have not felt good for almost four years. It has progressively gotten worse. At one point I thought that it was because I had taken a liquid vitamin and had taken too much. I stopped taking it and the symptoms went away, but then they started coming back. They would come and go occasionally. Over the years they have come and gone, but now they have come and stayed…and have gotten worse.

    About two years ago my primary care doctor did some blood work and found I was low in Vitamin D, and high in cholesterol. She did nothing about it. My symptoms have gotten worse. About a month ago while at my yearly OB check up I mentioned to my doctor how I was feeling and asked him about the vitamin D being low. He got pretty ticked off that the doctor had found that I was low and did nothing about it, and then he got very straight forward with me and told me that I needed to be more active in taking care of myself and I should have spoken up. He ran the test again, and found that I am still low in Vitamin D. Which means that I have been low for probably 3 – 4 years. My OB said that it might be why I feel bad.

    He started me on a once a week Vitamin D prescription. It is 50,000 I’s. I have been on it for 3 weeks. He also told me to take Vitamin B6.

    My symptoms are progressively getting worse. They are the following: Burning in my soles and palms. So bad recently that it hurts to walk, especially in the morning. Aching all over. Aching in my shins, like I have bad shin splints from exercise or something. Fatigue. Burning and metallic taste in my mouth. These symptoms have been present for about 3 years now. When I started taking the vitamin D, I felt a slight difference the first week. There has been a slight change in the pain,but it is still bad. This week has been very bad.

    I have been to a reumatologist, and he found nothing. My primary care doctor found nothing. The only person who has taken an active role in trying to help me has been my OB who put me on the vitamin D.

    My question is this: Do you think my problems could be the Vitamin D deficiency, especially since it has been so long that I have had it and not been treated? If it is the Vitamin D deficiency, how long would it take for me to start feeling better?

  385. Mrs Smith-I was a little low in D and now my D is almost normal my symptoms were not my D…Keep looking. Like someone said earlier, we cant blame everything on D.

    My drs have found nothing yet. All of my tests, including MRI seem to be okay. My next test is my parathyroid….

  386. Mrs. Smith–I think some of your symptoms could be Vitamin D related, but I’m no doctor. I have the aching shins and my arms ache too. I dont have the burning feet and hands, but have read that others do. I have alot of fatigue although it is getting better. My original level of vitD was 12. After a month of the 50.000IUs it rose to 15.7/ I have taken it for 6 weeks now. I will be retested in a month, I think, The rheumatologist couldn’t find anything wrong with me, but she is the one that did the vitD test so I am forever in her debt. I wonder when I will start feeling well. The depression and fatique are better, but the aching muscles are still there

  387. Mrs. Smith,

    Your symptoms are so much like mine, right down to the shins! I am in so much pain it’s difficult to get through a day. Right now the burning in my feet is scary but reading that others suffer from the same thing helps me get by mentally.

    I am so glad that you mentioned the metal taste in your mouth. I mentioned this to my PC and she just pooh poohed it. After doing a lot of reading I thought it might be because I eat a lot of fish or that I have many mercury fillings in my mouth (seems that’s what they did to us baby boomers years ago)…drill and fill…(and now I read that 99% of it was unwarrented). Now you’ve got me wondering what the heck it is. Mine is not constant, but when I get it it stays for hours.

    I just took my sixth Vit D (50000 iu) and don’t have any improvement at all…in fact I feel like it’s getting worse. I will be retested in two weeks…hopefully my numbers will be up from 6!

    Best wishes to you and to all the others suffering with this awful affliction.

  388. Mrs. Smith says:

    Dear meg,
    It’s overwhelming,isn’t it? I would love to keep up with your progress. Would you mind if we kept in touch…I think the support would be helpful. If you are interested, email here:gina8688@gmail.com

    I’m not sure Iwill be coming back to read anymore for awhile, because it starts to get a bit overwhelming! But I’d love to hear from you.

  389. VICKIE & OTHERS –
    I am working my way thru the VIT D CURE. Disappointing in some ways but helpful in others. Critically, it doesn’t seem well written or organized. And it is anti-vegetarian – which my whole family is (or are). On the other hand, it is well indexed and I have already used it for a few things. The thrust of this book is 4 things: Vit D supps, diet, sun, & exercise. Explains how to get Vit D from sun [which apparently you must] w/o worry about skin cancer for one thing.

    TO QUCKLY RECAP: my systems are excruciating quick almost electrical shock pain in my shins, thighs, side of ankle, primarily when I am in bed at night in prone position. fatigue. ear buzzing. My PCP thought it was nerves, did a lot of good tests, then sent me to neurologist, who said, “Nope, not nerve related” and ordered more tests. It was the Vitamin D 25 Hydroxy tests that showed me a 14 when range is 30-50. both doctors are thinking that is the cause of the pain. PCP then RX’d 50,000 units once a week for 12 weeks. He also told me to take calcium (don’t have dosage here.) I also went to nutritional counselor who advised I should also be taking magnesium with the calcium. I am taking PURE ESSENCE IONIC FIZZ MAGNESIUM PLUS. I drop a little scoopful into my bottle of water and use it to take all my other supplements!

    Nutritionist also thinks doctors are behind the curve and the Vit D dosage is too low but I feel I want to stay with my doctor on this for now.

    Bad news is there is no let up on the leg pain.

    Good news is that today I received test results neurologist had also ordered. It is called Vitamin D 1,25 Hydroxy. This is a renal measure, like is your deficiency due to problem with your kidneys? The answer is no. Good score on that. They just sent me the rest results and I found out the meaning of the test from the book.

    Funny news. I have committed to getting out in the sun between 1 and 4, following the book and it is raining!

    Best to all of you. xxxx Sunday

  390. sunny,
    have you had the ex-rays or whatever they are that show your bone density? i know some people on here have had that. mine was fine a few years ago, but now that i’ve been so low on d that might have changed. if we’re low on d i don’t think our bodies can use calcium correctly. yes, we should be getting plenty of balanced calcium and magnesium. being low on magnesium or potassium itself can cause leg pains.
    regarding the lightning bolt pains down the leg. i get those from my hip shooting all the way down to my ankle when my hips are out of the sockets. which i don’t think has anything to do with low d, so there could be other sources for some of these pains that we’re all having. i have to do stretching exercises to try to keep my hips in place and go to my massage therapist when it’s really bad because she can adjust them and get them aligned again.
    most likely for most people the pain is because the calcium is being leached out of our bones though.
    i still recommend a naturopath to everyone. if you find a good one they are so thorough. mine was the only doctor who tested to see if i was producing enough pancreatic enzymes to be digesting correctly and i wasn’t. she used natural herbs and things to remedy that. so now hopefully i am absorbing my vitamin d better, and all the other nutrients.

  391. Troy Suzann says:

    Kat and Sunny– over the weekend I read an article on Magnesium and how it goes hand in hand with Calcium and Vitamin D. My physical therapist also said I should be taking magnesium for my extremely tight/cramped muscles and painful joints. I started to take a supplement once a day two days ago, based on the article which said 2 parts calcium to one part magnesium. I Should of probably asked my doctor but I did so anyway. I am 4 wks into my vitamin d therapy and had not noticed any difference was still having severe burning pain at night in feet and hands, difficulty, etc, after taking the magnesium I find it has decreased a bit… I have since put a call into my Endo to see if taking the supplement is ok– because I am very please with the results–still waiting to hear back. I still have a couple of months before I go back and get the rest of my blood work done for celiac disease and PTH for parathyroid.. but if magnesium can help relieve some of my discomfort —

    Does anyone know of a place or a procedure to get all of your important vitamins and minerals checked in your system. It seems like there is a seperate test for all…

  392. TROY SUZANN: Follwoing site wll have some labs who do these testings.

    http://www.ctds.info/nutrition_testing.html

    http://www.abundalife.com/clinicalservices/Nut-Testing/Nut-testing08.html

    Also Google NUTRITIONAL TESTING

    Hope it helps.

  393. No one has anything new to tell or ask? Wondering why suddenly everyone disappeared?

  394. i was just diagnosed yesterday with low vit d at 15.2 by a rheumatologist. i was refered to him by my pcp to evaluate for autoimmune and connective tissue diseases because of my pain. fatigue, etc. i was feeling soooo bad that i even quit my job. all tests were normal except vit d. after reading these posts, i feel lucky that he found this problem. my concern now is that he told me to take only 1000iu of vit d daily. from what i read thats about what people should take with normal levels. i called his nurse to make sure and she sd it was right and that he would retest in december. im concerned because i dont want to waste another three months of my life feeling bad. i wonder if i should go to another type of dr for this???

  395. debby,

    i hate to keep harping on this, but i’ve had the best and most thorough care from a naturopath. so if you’re looking for a different doctor who will take your problem more seriously look around for a good naturopath.
    whoever you go to, the first thing you should have them test for is if there’s something going on in your intestines that is causing the vitamin d not to be absorbed. it could be low pancreatic enzymes and intestinal inflamation like i had or it could be something else.
    start taking the 1000 iu’s (be sure it’s vitamin d3) for now but get another opinion and more tests or you probably will be wasting the next three months. also get yourself a good balanced calcium and magnesium supplement. the magnesium should be about half the calcium. it will probably have d in it too which is good. don’t worry if you get more than the 1000 iu’s. it won’t hurt you.
    good luck.

  396. Debby
    um can u tell me ur symptoms plz? if u dont mind.
    and did u get any hear palpitation or chest pain?

    Matt
    Im busy with studies at skool. :d

  397. I am the first “Debby” that wrote in on July 28th that was diagnosed at an 8. I thought I was taking 25,000 mg’s, but someone way back mentioned 1.25 mg was the 50,000 mg dose, so I was actually taking the same as everyone else once a week. I am now in my 13th week and have been having a good response to the therapy. I was having so much pain in my hands that I could hardly use them sometimes. They still ache once in a while, but I am now able to button a blouse with hardly any problem. I also had pain in my right knee and hip, and my shoulders which all seem to be diminishing. I can even wake up and feel good. I go back to the doctor on the 18th and I’m sure he will send me for another test next week. Everyone including myself, was looking for fast relief, but it just doesn’t happen that way. Considering the way I felt when I first started the D therapy, and the way I feel now, what a difference. I hope everyone else gets the relief too!

  398. im the second debby i didnt pay attention to there was another one posting, so i put a 2 on mine, sorry.

    amna
    my main symptoms are:

    fatigue
    inability to fall asleep
    pain in joints
    pain in feet
    decreased memory
    abdominal pain
    constipation
    dry skin
    theres many more problems but those are the main ones.

    can everyone tell me what type of dr is treating their vit d deficiency?? mine was diagnosed by a rheumatologist but im wondering if he is really educated on the treatment. he has me taking only 1000 iu daily.

  399. Debby 2,

    I didn’t want anybody to mix us up since we have the same spelling, but some different symptoms. No need to be sorry, just get well!
    I was diagnosed by my PCP.

  400. Troy Suzann says:

    Debby 2, my endo is who diagnosed me.

  401. Debby 2
    umm I go to an endocrinologist, he is a speclist for these cases too.
    I really sugesst that you transfer to an endocrinologist cuz its better he knows more about these stuff and he might give u other supplements including vitamin D.

    umm I dont wanna be curious but did u get any hear palpitation or chest pain due to the defeciency.?

  402. tomorrow i am doing a blood test for iron & magnesium cuz i think i have defeciency in them. my endo recommended to do so. !

  403. i do have some heart palpitations but usually only at night when i lay down.

    i was wondering if any of you had extreme fatigue when you started taking the vit d ?? im on a low dose and only started taking it friday, but yesterday and today i can hardly hold my head up. any suggestions??

  404. Hi everyone! Here’s my story….& thank you so much for yours. I am sick in bed today and it was so uplifting to hear the positive stories about people getting better.

    I’m 22 and at 19 I became severely ill. I collapsed while on vacation and after that continued to faint until the point where I was bedridden. I was soon diagnosed with Postural Orthostatic Tachycardia Syndrome which is a long way of saying I had a high heart rate and low blood pressure and there was no explanation as to why.

    I began taking meds to increase my blood pressure which stopped me from fainting. I considered that a miracle and thought I’d keep getting better but the fatigue I dealt with was unbearable. I could barely get up in the morning and like some of you said I had to sit down every chance I could get and couldn’t remain upright for long. I thought I was dying.

    It’s been a rough three years but I’ve gotten a little better but with a lot of setbacks. I started exercising which helped some but as I write this I’ve had a terrible last few days – weak, achy, exhausted.

    Anyway, a week ago my doctor told me my vitamin D level is 13. I was apprehensive about taking so much of it but after reading your stories I think it’s definitely worth a shot! I also have the bone jolting pains some of you described and the buzzing in my feet. I’m REALLY hopeful that this could possibly change my life :) THANKS!

  405. Debby2
    , its because now vitamin D gets absorbed and you will feel better soon.
    but i reaallllllllllllllllllly suggest the endo doc. its better for u.

  406. Kyli
    I hope u feeeeeeeel better. <3

  407. thanks amna. i just looked for an endo dr in my area and there is not one. so unless i drive probably two hours, im out of luck.

    so, it is normal to feel so bad when first starting vitamin d??

  408. debby2
    yes its normal, me 2 when i took my doses i felt so fatigued .. but i was really scared to tell my mom because she will sure tell me noo u just took ur dose and u have to feel better and i thought she wouldnt believe anything i say… so i waited for a week then i felt better each time i take a dose it has a fatigue side effect because it is now detectedd on ur body.
    u know debby im 16 years old and my vitamin D level was 6 :( .. was so so so low.
    severly low .. but now thank god i feel much much better.

  409. Wow…I am amazed and comforted to read all of these posts. I just had a vitamin D test run…got results back and it showed I am low. My level is 13. I’ve had foot pains, severe fatigue for a few years now..like 2 1/2. I also had low cortisol (adrenal fatigue) and showed low thyroid. Now I’m wondering how long I’ve had low D and if this is why everything else went south, health wise? I had a heel bone density test about a year ago..on a whim and it showed that I had osteopenia.

    I’ve started myself on 7000 iu of D3 per day and will get to my doc to probably get a script for the D. I’ve been taking the D3 for 5 days now…so it’s too soon to feel improvements I guess.

    I hope this will finally give me back my energy.

  410. Kyli:

    You are too young to be having such problems with heart and Blood Pressure. I hope you are going to a good doctor – an endocrionologist hopefully. You need to get full tests done, like stated by so many above. Namely, Thyroids, B12, and other minerals. I am thinking about a mineral problem because if you dont get proper amounts of Calcium, Potassiam, Mangesium, and Zinc, you might have blood pressure and other heart problems. Hopefully you live in or around a large metropolitan area so you can find a good doctor.

    Amna:

    I am glad you are getting those tests done. An excess of Iron stored by the body makes you feel very sick too. Also, an imbalance of Magnesium will give you palpitations etc. Good luck to you.

  411. Hi All, I’ve been gone for a couple of weeks and glad to see everyone still talking on the board. Here’s my update – I finished my 6 weeks of 50,000IU treatment, plus 1000 mg Calcium /day and sunlight and salmon on top of that. I re-took my Vit D test and my level is now at 52! Since I was at 16 to start, this was a big jump in 7 weeks. I have no more tingling and burning feelings in my legs and feet, but I do still have aching joints and muscles in my back and legs. Feet still hurt to walk on first thing in the morning. I’m an active 50 year old, but get out of a chair or the car like I’m 90. My lower back is more painful now, so I guess my hunt for what ails me is still on. I suppose that even with my Vit D levels back up, the body still has to heal up?

  412. Matt
    thanx, =]
    umm we finally and suddenly noticed that my palpitation were from a medicine i took for more than 5 years which caused a palpitation as a side effect. Now that we knew, the doctor told me to stop that medicine and go for another one which doesn’t have severe side effects.!

  413. Amna:

    When will you know about the Magnesium levels? I am curious.

  414. due to my lazyness i didnt do the test yet :P i think im ok but i really have to check iron and magnesium cause i havent check those 2 elements

  415. Hi–After several years of muscle and bone aches and pains, thorough testing by specialists including a rheumatologist, I happened to see an article on Vit D deficiency in a women’s mag and was tested. Level is 19. My doc put me on a once a week Rx supplement and I am to take an OTC supplement and get 15 mins of sun each day (I am a redhead with hot flashes, so I spent the summer indoors!) I drink a lot of fortified milk, so I never suspected I would really have a problem. I wish I had an idea how long I have been deficient. I will be 50 in 2 days. I also had a heart valve replacement last year but haven’t felt as great as I had hoped after–vit D is probably why.

    Here’s my question: Has anyone had shortness of breath with this or has anyone seen this mentioned anywhere? I have developed severe venous stasis in my legs, which is progressing to varicose veins–my legs look like city roadmaps. I have restless legs, cramps, etc. along with this. Has anyone else experienced/read about this in relation to Vit D? Also, I’ve read here that levels can take a long time to go up–does it also take a while to start feeling better?

    Thanks all.

  416. sharyl
    um for ur questions, i havent expierneced anything exept for cramps. umm for getting better it depends on the level u are it. like 19 u might need 1 month. but like me i needed 4 months and will 2 months again as my doc told me because mine was at level 6.

  417. Hi again–Just remembered I saw something about Walgreens having a traveling van with free tests, including bone density (don’t know how complete it is or if it is a full scan). Here’s one site that lists the health events (sorry I don’t know how to make a hyperlink in this screen)

    http://events.empowher.com/listProviderEvents.do;jsessionid=164F8E33E2066C58242BD1A7DA880AFA?id=98

    Re magnesium–I take magnesium salicylate –commonly known as Doan’s pills or Momentum, for back pain, restless legs etc. and my magnesium level is always good when tested. This might be one way to get magnesium into your system and also get some relief of symptoms. I take the max dose, which is two 580 mg caps every four to six hours. Also, Hylands has two products that help the leg symptoms: Hylands Leg Cramps and Hylands Restful Legs.

  418. I just wonder that at some point, when the vit. D is going low, something happens in the body that doesnt reverse some actions. This I mean is due to the fact that despite taking Vit. D and brining the blood level to normal, the bone and muscle aches dont really go away. It may be more true for older people than for younger persons. I seen many people complain that they did have some relief but these aches and pains didnt really go away. I would like to know the experiences of other people.

  419. Matt
    sorry for asking but are u a male or a female?

  420. for all .. I just wanna ask, um does the defeciency leads to boils and dry skin? ..

  421. I have been dealing with vitamin d deficiency for over 9 months now. Like most of you, my labs came back with severe low levels resulting in my doctor prescribing 50,000 IU/week for 3 months. Then I recheck my levels to make sure the treatment has worked, which it always increases my levels into the normal range. The problem is once I stop the treatment. Even though I continue to take an over the counter d vitamin (800 IU) and calcium daily as well as walk outdoors with no sunscreen daily, my levels still quickly drop. In fact, my doctors have me check the levels every two weeks. We have found that in matter of 14 days my levels fall by 15-20. At this point, my bone density test shows bone loss in my hip and parts of my spine. I am only 26! I am wondering if there is some other process that is literally stealing my vitamin d from my bones. Is anyone else experiencing this process?

  422. Jeanne, I have taken 2 different tests for Vit D. The 25 Hydroxy Vit D test reflects the body stores. this is what most of us took to find that we were deficient. My low score was 14. My doctor has put me on an RX D 50,000 units once a week for 12 weeks. This is ergocalciferol – you cannot get over the counter. No help from pain as yet. There is also a 125 Hydroxy Vit D test which is a reflection of kidney function. This latter one does not help determine need for sun or supplement. But if it is low, you may need to supplement both forms of Vitamin D. (This is from the Vitamin D Cure book.) You might want to ask your doctor about the second test. And also read up on the balance of Vit D, calcium, and magnesium. It is complicated but IMPORTANT. You are unlikely to get this from your doctor.

    My pain at night – excruciating pains on side of ankle, shin and thigh. I am really good at pain management being a hypnotherapist but these come unexpectedly just like electrical shocks. My whole body jumps. I may have to ask my doctor for some pain med to take at night although I really do not like to take any drugs at all.

    It is helpful reading experiences of others. Keep going to other sites, too, Wikipedia, Dr. Weill, etc. As we find information we can bring it back here. Always good to give source, too.

    Best wishes to all, Sunny.

  423. Troy Suzann says:

    Sharyl, If you read about magnesium deficiency you will notice there are some of the similar problems you mentioned with that deficiency– shortness of breath is one. I believe Mitral Valve Prolapse is another. I think I would ask doctor to check for that as well…. even though you are taking Doans.

  424. Does any one wants to keep in touch with me ? incase u need anything u can ask me for my email. :)

  425. Hi all…my vit d is a 13 and I’m supplementing with 7000 vd3 per day. Is this what everyone else is taking..the D3?

    Also…does anyone else experience a sense of heaviness with their deficiency? Like…your arms and hands are too heavy to lift sometimes or you feel like you’re being pulled down to the ground from your ribcage in the back…I guess because you feel so heavy? Not sure if that makes sense or not.

    I have moments of feeling like my body, arms and legs weigh a ton….anyone else?

  426. Amna I am male.

  427. Marie,
    D3 is what you can buy over the counter and seems to be best for long term replacement. But with your low score (mine is 14) you need to jumpstart and be on the high dosage D2 which is available by RX only. Most likely this will be for a two-three month period. (See my note posted yesterday.) After you get to a better level, you will probably take the D3. As well as proper sun exposure and good VIT D diet.

    Remember everyone, Vit D Defic is not only a problem on its own. It makes you susceptible to many serious conditions, including diabetes, heart disease, cancer, arthritis and more. [This is from the VIT D CURE book I am reading.] Get your daily sun exposure.

    best to all. SUNNY

  428. marie,
    my naturopath has me taking d3. she says the body uses that more efficiently than d2. so the 7000 iu’s you’re taking should help. i started at a 14 and was only taking 2000 iu’s at first. mine has come up slowly and i’m taking 6000 now. i should have it tested again in a few weeks. i think it was 32.5 back in june but my doctor wants it a lot higher.
    even when i first started taking just the 2000 iu’s it didn’t take long before some of my symptoms went away. like my heart palpitations and rapid beat normalized within a few weeks.
    i think for a lot of us with low d we might have to take large doses for the rest of our lives. maybe we just don’t absorb it correctly or need more than other people. it might not be something we’re going to be cured of.
    be sure to get a good mineral complex to take also. calcium, magnesium, potassium etc… you need to keep the minerals balanced and not just take calcium.
    i know what you mean about the heaviness dragging you down. i don’t really have that feeling anymore. i think it’s part of the general fatigue that seems to come with low vitamin d.
    how soon do you have your next blood test? i’ll be interested to hear what it’s up to.
    good luck.

  429. Hi, I am 33 and have dealed with a high sed rate for a very long time. during the midst of many blood test my Doctor found that my Vitamin D level is 11. Which probably explains why my bone scan showed arthritis in my hips, shoulders and knees. Now my Doc has Dx. me with polymyalgia and possibly Giant cell arteries. Like I stated above I am 33 and with out Gods help I would be a nut case. I suffer lots of pain and my joints are steady popping, I have gained a ton of weight and after what I have read i think it may be from the vitamin D. I am taking 50,000 Iu once a week and have done this for a month, I can tell a little difference but not much. I would love to talk to someone else with this problem, I feel very alone at times. I have 3 kids and i just want so much to be healthy for them. Please let me know if any one else is in this boat…

    Other symptoms and Labs…
    Hair falling out. Swollen joints, Rash

    I have a sed rate level of 70 Vitamin D 11 High C reactive Protien and a low WBC.

    THANKS…
    KATE

  430. Its me again, One thing that I forgot to mention… THE LEG PAIN IS HORRIBLE. I have had the leg pain for years worse at night. All the docs i have gone to thought I was crazy or just wanted to send me to PT. So , now I wander how Long my levels were low. That pain is also in my arms along the side bone… I have to say though that since on the Vitamin D it has gotten MUCH better. I cried many night with leg pain. Several docs wanted to put me on meds for RLS. Its not RLS … I found the Best Rhumy in Indianapolis that is awesome and very aggressive just after a few visits he had me headed in the right direction where as PT was not the answer for these types of problems… :}
    Thanks,
    Kate

  431. les, re: 8-31-08 post & ‘twitching’. I’m no doctor, but I became Vit B12 deficient just before being diagnosed with VDD. I twitched all over, body wide, The worst, were the facial ‘tics’. My last b12 test was up to normal levels and I’ve been taken off those B12 injections. I no longer have those twitches and tics. Just a thought. I see several people on this forum have deficiencies with both B12 & D.

  432. Does anyone continue to lose vitamin d immediately after successfully completed their D treatments? At this point, I have completed three rounds of vitamin supplementation, each round consisting of 50,000/week for three months. However, all three times, my blood work shows a drop of 15-20 points of D within two weeks. So, now I have been taking sups for 11 months and still battling for my body to actually maintain the level acheived for more than two weeks. It would be great to know if anyone else is not able to maintain D levels after supplementation.

  433. Jeanne
    thats really strange !
    did u tell ur doc. about this?

  434. Troy Suzann says:

    Jeanne- if you have malabsorbtion problems or a hyperparathyroid you mayl not be able to maintain levels of vitamin d… My endo is going to test my D again a couple of weeks after I complete my 4 month therapy. He is also testing my levels for calcium and PTH (for Parathyroid) and doing blood work for Celiacs Disease. He did say if my levels have not improved significantly then he will also send me to a gastrologist to see if I am having intestinal issues… (further check for Celiacs or other problems). There is definitely a reason your levels are not staying up… keep pushing your Doc!

  435. Troy Suzann says:

    Kate– what kind of rash to you have?

  436. Kat and Sunny…thanks for your replies. I was just reading about Vit D in an article that I googled..one of many..anyway, the doc said that since there is no 50000 iu of D3 available yet by prescription, that is why D2 is prescribed. He did say that you can find 50000iu of D3 at some health food stores now..that’s one pill with 50000 iu of D3.

    Everything I’ve read speaks about D3 being the best to use…so I’ll stick with my D3 at 7000iu per day and see how it goes. Sunny, I have read that alot of folks are doing well on the D2…so I’m hoping you’re feeling improvements.

    Kat..love the name….I’ve been taking my 7000 for 8 days now and, dare I say it, I THINK I’m feeling improvements. This makes me just want to cry as it’s been a 3 year struggle to figure out what the heck has been causing these debilitating symptoms. I have always been really in touch with what my body is feeling…so these sensations of heaviness, weakness and fatigue have put me to the test!

    I guess I will retest in a month or so…not sure when to retest? I tested myself with a home blood test by ZRT labs…a bloodspot test. I also tested my C-reactive protein to check for inflammation…and it was sky high. Just read that low D and high C-reactive protein go hand in hand as D helps with inflammation.

    I am making sure that I’m taking enough Calcium, Mag and potassium. Oh yeah..those heart palps and rapid heartbeat are horrible…but I do think they are getting better. I don’t know if we’ll have to take huge amounts of D for the rest of our lives…if so, then that’s okay with me..as long as I have my energy back!

    I do think that since Vit D deficiency is becoming more and more recognized..that multi vits and standard D3 vits will start containing at least 2000iu of D3.

    Kat…I will post my new levels once I figure out when to test them. Post your results..it’s great that you’ve seen improvements already…they say it’s best to have our levels above 50 or is it 50-70 is more ideal?

    I just bought the Vitamin D cure..so we’ll see what new facts are in that.

    Good luck!!

  437. KATE,
    Where exactly is your leg pain at night? Mine varies from ankle to shin to knee to thigh. Right now in a cycle of “side of the ankle” pain and primarily in RIGHT LEG.
    I haven’t been able to find any reason for such severe leg pain at night. My docs don’t know either. It is incredible. And very little pain during the day – just occasional jolts. I refuse to live on pain meds, sleep late, feel all druggy next day. I just tough it out and cry. Pain so sharp & stabbing it makes my whole body jump. Just took my 3rd RX D pill this morning. I will try to give it another week.
    By the way, I was told to take my calcium/magnesium in three doses if possible, rather than all at once. Helps with absorption.
    We will find answers.
    Best to all, SUNNY

  438. Sunny, Kate, Troy
    u guys take the minerals without the doctors prespcription? cuz u might have these electrolytes balanced and in good level cuz increasing them by those medications can toxic them as far as i am concerned.

  439. Troy Suzann says:

    I did check with my endo on the Magnesium and it is ok — not taking that large of dose. My Physical Therapist was telling me take alot more than I am — the Endo said no. I agree though you should not take them unless the Endo says ok.

  440. Re: your 8-17-08 post and your levels dropping once you’ve finally gotten them up and when you go off they go back down.
    do you have any gastric probs? I have Celiac disease and I read where there can be malabsorption probs that ‘steals’ your Vitamin D. I see my GP, on 25th and intend on having him run tests as to WHY I have the deficiency in the first place. It appears the symptoms are only being treated, not the actual cause. I think we’ll find, in my case, anyway, that malabsorption is my cause. I was Vitamin B12 deficient at the same time as I was diagnosed with VDD, but those numbers came up to normal, in 9 weeks, with weekly B12 injections. I’ll ask for a new test for that, too, cause there can be an absorption prob with that vitamin also. If my numbers are down on that one again, that’ll be my answer for both vitamin deficiencies. Keep us posted. Does anyone on this board have any thoughts on this?

  441. Re: 8-12-08 post of having very low levels of Vit D and your doctor advising you to take 1000 IU. I see someone else has already suggested an Endocrinologist, and you say there are none in your area. Have you checked with you county Medical Association? I’ve always received help from the one in my county. They give me names and phone numbers, etc. I’m fortunate to have 2-3 to choose from in my county and won’t hesitate to use one if my own GP keeps dragging his heels. Your symptoms sound a lot like mine, but I also have Fibromyalgia with Chronic Fatigue and Celiac to contend with. Pain levels are always high, but the horrible debilitating exhaustion is the worst… Knocks me for a loop, Big Time, too. Hope you can find a good practitioner closeby. Do you have a larger city,nearby, you might could travel to that would have more options for you? Keep us posted. I’d like to see you get some immediate help. From Jan

  442. Sunny,
    Mine started out in one little spot along my shin. Now its all the way up. Its just how you described. My Doc said its from The Vitamin D. Its so strange because no Doc had ever taken the pain serious and I was starting to think I was a nut. Its like electric shocks. I dont take pain meds because I am on so much other stuff. But I have used heating pads ( it didnt do much) Do you have any of this pain in your arms? Mine just started recently.

    Kate

  443. For all
    -Some of your sypmtoms can also be a side effect of a medicine ur taking. Like me, the heart palpitations were from a medicine which turned out as a side effect later on.

  444. Someone asked about my rash. I have not had it for a while but I get a rash on my face and arms and legs. My ANA have all come back normal so no signs of lupus. So I dont know what its from.

  445. Hi all of you,

    I took a break so I could let the Vit. D do its work without dwelling on all this stuff and after pill #5 today I feel so much better. Funny though, this afternoon I felt the zinging in my arm and it reminded me to take the pill! I think the common thread here is we all have something underlying which is stopping us from properly absorbing the D. So, we get the level up and if we don’t stay on these mega doses we’re back down again. But, I’ve had some amazing things change that I never suspected were connected to this. The whites of my eyes were very yellow, only where they’re open, and had some growths. They’re almost all white now and the growths are going away. I’ve also had unexplained Reynauds Syndrome for a few years and the other day I was handling a lot of ice with no problem. I can’t believe all these things are connected but they must be.

    Matt, I’m still very confused regarding the magneseum. My prescription severly cautions taking antacids w/mag while on the D. My pharmacist didn’t know exactly why, found some interaction between d/mag/kidneys and promised to keep checking. Also, someone back in August said that mag stops the d from absorbing. Geez, is there anywhere we can find out about this?

    So, bottom line is, I’m one of the lucky ones for now who feels great. Maybe the underlying thread of all us is different for each and perhaps some of them can’t be corrected with the D. I just think it’s so odd we most complain about the shooting pain in the shin. What a funny deal.

    I’ll keep checking in here, you’re all great. We should have a get together!!!

    Amna, did you have your mag level checked yet?

  446. A few months ago found out my d level was 8, took supplements for 6 weeks, tested again and went to 12 then took supplements for another 6 weeks, and it went down to 4.
    The Dr is not sure why it would drop so, he is sending me to a specialist. Any one have any ideas? I have chronic fatigue and hurt all the time. I am 44 and I feel 100. I can not lose weight, even if I had salad for a week straight, I would gain.
    Any suggestions welcomed.

    Thank you Lucy

  447. Lucy
    See an Endo Its might be the parathyroid gland too hyper or too weak,, something must be wrong or something must be wrong in the digestive system or u have difficulty absorbing the vitamin, u take it as pills or injections? is it with calcium ?

  448. Sherry: Excessive Magnesium causes diahrreah (Remember Milk of Magnisia). This could cause the electrolytic imbalance which can be dangerous sometimes.

    I would like to know who is from which town/country?

  449. Hi Matt,
    I am from Indiana

  450. Amna,
    Thanks, I am seeing an Endo Dr next week to see what is wrong. I was taking pills the Dr gave me, 50,000 units for 12 weeks, horse pills is what I say they were. And I went up a bit and then back down. He said that was weird. I do have digestive issues but tired all the time, it is awful.
    Lucy

  451. By the way Matt,

    Upstate New York….no not the city!

  452. Matt,

    So, could that be misconstrued as IBS? Seems that’s a common thread here too. I know since I went off all magnesium my digestive system is more balanced.

    My goodness, we’re from all over…I’m in San Francisco…yes, the city!

  453. Carebearny1999 says:

    Rochester, NY (western NY)
    I go for the results of all kinds of bloodwork on Friday. Lupus, RA, who knows?! In addition to the VDD. My Gma was just also diagnosed VDD. I’m on prednisone right now for bronchitis, actually feeling halfway decent at the moment!

  454. hi matt,

    i’m in puyallup, washington.

  455. Troy Suzann says:

    Hi matt, I am from mesa, az

  456. Hi Matt,

    I’m from Massachusetts

  457. hey Matt

    I’m from Doha-Qatar

  458. Sherry Still i dont know the results
    I’ll keep u guys all updated as soon as i know =D

  459. Troy,
    I have a friend who lives in Mesa AZ.
    Marcus Palmer…ever here of him?
    Lucy

  460. i found this website which looks to help a lot ..i been feeling weak , fatigue, joint pain, feet hurts aftre walking or standing up for 5 minutes only…heart palpitations, muscle pain including around my chest..so went to doctors got test for thyroid, adrenal function, liver fucntion, kidney function, and chest x ray and egk for my heart palpitations

    basically he said is all normal .i was like what? he told me go to an endo doctor i went he said aftre al the test you have done i gone do a vitamin defiencit test

    2 weeks i got the test finaly he found soemthing sever vitamin d defienciency..i was like so relief ..he told me take this 50,000 d 3 pills for 8 weeks (2 month once a week)

    after taking the first one didnt feel no changes so i been taking 3 times a week since i read that in another site plus i been eating more milk and fish eggs etc that supopse to have some vitamind and alos i take 3 times a b12 multivitamin

    after my 3 week now i can feel a little more energy and less pain
    looks llike finally im improving very slow but still far from been myself like when i was in college..now im 32

    for those of you affraid od overdose read other doctors articles about it ..the posibilities of overdosing are only if you take it like 50,000 everyday for like a month..so it looks like our bodies are made to absorb or storage small amount of this vitamin

    i hope i keep feeling better im in my 3 week ..i willkeep taking it 3 times a week until my next doctor visit ..

  461. i just noticed something that i think must be because i’m finally getting more vitamin d in my body. it’s just a small thing compared to heart palpitations etc, but i thought i’d share it.
    it seems like as far back as i can remember the cuticles on my fingernails have been kind of torn and raggedy. i don’t chew on my nails or anything, they just grew that way. also the few times i’ve been to a manacurist they’ve had to cut my cuticles back because there was so much of them, they couldn’t just push them back.
    i was just looking at my hands and noticed that the cuticles are smooth and even and no hangnails or anything. i was able to push the cuticles back easily. having enough vitamin d must really help the skin grow correctly and repair itself.
    i’ve been taking 6000 iu’s of d3 for the last 3 months and lesser amounts before that. a lot of my health problems are gradually going away. yay!

  462. RICHARD
    u have the same problem as mine from the heart palpitation and chest pain… umm u think is it from the vitamin D defeciency.. and please can i know which level were u at ?

    but i noticed that my palpitations are from a medicine i took which turned out as a side effect… but now i take a pill for palpitations untill it gets better:) n its actually improving big time and i feel very good..

    umm do u mind me asking u by taking the doses of vitamin d did u find a difference in ur heart ? like did it become less off to beat :D

    hope u get well soon :)

  463. kat
    Im so glad to hear from u :) that most of symptoms have gone. umm have u noticed that its the most important vitamin ever ! my endo tells me its the miracle vitamin:P

    did u also experience heart palpitations?

  464. amna ..i ask my endocronologist about the heart palpitation he sadid he cant not tell if its from vitamin d deficiency but he can not see anything else wrong besides my vitamin d problem so
    base on this is my third week on high doses of vitamin my chst pain has decrease and my palpitaTions too..i still get them but they have decrease about %30 which is good news for me ..now i guess i have to wait longer to see if thas the real problem i still 5 more weeks to go on high doses i als taking a multiviman b12 with calcium ..calcium looks like is very related with vitamin d since cholecalciferol helps to maintain good calcium levels on blood
    my number is 10 which my endo said is consider severe and creates lot of problems form bone pain to muscle and even nervous system anxiety problems..
    thas what i guess palpitation are related with this defiency like i said they have decrease some about 30% so ill keep inform every week to see if i keep improving or not

  465. amna and richard,

    yes, i had experienced bad heart palpitations and rapid (off the charts) heartbeat for several years before starting on the extra d. i ended up in the emergency room 3 times because of it and of course they couldn’t find anything.
    when my vitamin d level was first tested last october it was 14. i had always taken vitamins so i had been getting somewhere between 400 and 600 iu’s of d3 each day, but i guess that wasn’t enough. my naturopath had me start taking 2000 iu’s of d3 each day for the first month then said to drop down to 1000. i would say within that first month my weird heart stuff stopped. in feburary we tested again and it was up to 22.8 so my dr. had me up the dose to 4000. in june the level was up to 38.5. she wants it between 50 and 70 though so i’m taking 6000 iu’s of d3. i’m going to have it tested sometime in the next few days. we’ll see what it’s up to now. but in the mean time i have seen vast improvements.
    from what i’ve read d2, which i think is what everyone is taking with those huge doses, isn’t used very efficiently by the body. i’m glad my naturopath wants me to take d3. it seems to be doing the job. maybe i should have started out taking 6000 iu’s to begin with but it seems to have worked out ok this way.

  466. this is just one of many articles that i have read about d3 being superior to d2 for supplementation.

    for your perusal.

    http://www.ajcn.org/cgi/content/full/84/4/694

  467. Hi All–
    A SUGGESTION FOR EASE OF READING:
    I would like to propose something since this site is so active. I’ll start it here and see if it helps–putting little “headings” on topic areas so that scanning the posts is easier. Maybe use all caps and/or spaces. If you think it helps, try it on your next post.
    THANKS:
    Thanks to all for the responses to my posts.
    MY LOCATION/DOCTOR:
    I am in a suburb of Phila. I saw a rheumatologist and a hematologist who tested for everything but Vit D. I saw an article in a women’s mag (maybe reader’s digest?) about VDD and asked my GP to test it.
    MITRAL VALVE:
    My magnesium levels are fine and have always been, even being on diuretics for heart. And I had a rheumatic-y type small and shriveled valve, probably since childhood, as opposed to it being caused by a deficiency. (I say rheumatic-y because I never had rheumatic fever, despite R. fever supposedly being the only cause of this type of valve damage.) But perhaps the need to replace the valve was hastened by something, like a deficiency or other issue.
    SUNNY RE BOOK NAME:
    Would you please list the name and author of the Vit D Cure book you are reading? Or better yet, the ISBN number, which should be on the back cover somewhere or on the copyright page (to anyone who doesn’t know, the isbn is the most unique identification of a book and it changes for each new edition even if title and author are the same).

  468. Kat,

    Oh my goodness…the nail thing!!! I always had beautiful manicured nails (without going to a professional). The last couple of years I had the same problem with cuticles that were thick unsightly and needed trimming and then they’d split to the point where they’d bleed. I just finished my 8 weeks of therapy and about a month ago I noticed my cuticles were back to “normal”. I didn’t even think it could be the vitamin D supplimentation. WHO KNEW!!!!!! Thank you so much for sharing that!!!!!!

  469. LIST OF REPUTABLE SOURCES:
    Hi all–I have been a medical writer and editor for about 25 years. I wrote a long comment listing well-known reputable sources for online medical info, but I seem to be unable to post it. Maybe it is too long or has too many urls. I hate to waste the effort, so I am listing my email address here–if you want the list, just email me. It lists about 12 sites I thought of off the top of my head that are known valid sources of medical information. My address is:

    sharylwolf@comcast.net

    I confess I haven’t really looked at the official sources in depth about Vitamin D, but as a medical writer and editor, I can attest to these sources as being reputable and current.

    I’m going to look further into the calcium/mag/D issue we’ve been seeing here. The following info is readily available.

    MAGNESIUM BINDS VITAMIN D.
    Magnesium binds the vitamin D (prevents its absorption). You can take it at other times–the usual time period is not to take something that interacts from 2 hours before to 6 hours after the other drug. So no magnesium or antacids with magnesium 2 hours before and 6 hours after your vit D, both the Rx and over the counter type.

    REMEMBER TO GET SUN!
    Your body needs sun to utilize vitamin D. My doc said get 15 mins a day. Someone in an early post stated that sunscreen of some fairly low number blocks the D utilization process, but I have not seen anything else on this. It makes sense to me though.

  470. CALCIUM/VIT D/Reasons we are low in D

    I am still researching this but they do make prescription supplements that are calcium and vitamin D together, so apparently they do not interact badly. You need adequate Vitamin D to utilize calcium. This is from the PDR health site. I searched on vit D and calcium and clicked on an entry about osteoporosis.

    http://www.pdrhealth.com/disease/disease-mono.aspx?contentFileName=BHG01EN17.xml&contentName=Osteoporosis&contentId=110&TypeId=1&sectionMonograph=ht2

    “Insufficient vitamin D intake increases your risk of osteoporosis and decreases response to any osteoporosis treatment plan. Adequate levels of vitamin D are required in order to absorb calcium and to build bone. It is estimated that more than 70% of the population in the northern half of the U.S. are vitamin D-deficient. This significant bone loss is directly related to inadequate levels of vitamin D and sun exposure. This is true for all age groups, but is even more severe in the elderly. In addition, after age 50, there is a progressive decline in the absorption, metabolism, and effectiveness of vitamin D in both men and women. After about age 50 it is essentially impossible to get enough vitamin D from sun exposure alone. Vitamin D is not readily available in the diet, so supplements are usually required.”

    “Insufficient calcium intake increases your risk of osteoporosis and decreases your response to any osteoporosis treatment plan. Calcium is required to build and maintain bone density at all ages. After the age of about 50, your ability to absorb calcium decreases, which is often made worse if you don’t get enough vitamin D. As a result, you should increase your intake of calcium after age 50. However, you should take your calcium in several smaller doses to optimize absorption.”

    But, this is from another article on same page.
    “Excessive amounts of vitamin D may cause abnormally high calcium levels in the blood”

    BONE DENSITY INFO
    For the person who was asking about bone density, this same url has a lot of info on causes of bone loss at all ages, from meds, genetics, and other causes…

  471. RICHARD
    I see , even me I asked my endo about the heart he told me at first it could be but later on without giving me his supplemention of calcium I noticed that after one month of therapy. but it sure it had got less by 20% by the supplements of calcium he forgot to give !! unfortunatly..

    but he advised me to take one pill a day to prevent the palpitations cuz they freaken annoy me. so i took it n now i feel so much better.. its just for 3 months till the rythm gets better :)

    Thanks for replying back :)

    Kat
    I kinda have same as ur problem with ur heart and landing in ER without knowing the reason they just go and tell u u were scared and we will do a CBC blood test :P which will sure be normal and has nothing to do with vitamin D

    thankssss 2 u 2 :D

  472. amna and kat yes about the heart thing when i went to doctor i was like thinking i was gonna have a heart attack .heart palpitation and about 100 bpm rate just sitting down , chest pain

    they run blood count cells test. and heart x ray .liver function , kideney function, sugar levels on blood..but nobody have a clue about this vitamin d thing..until i went to endocronoglist he mention that i was like …ah ok vitamin d defiency test…go ahead do it..i endo up paying him $ 500 ..first visit 2 weeks he call me for results he told me is this creating your problems anpother $ 100 second visit ..basically i pay him the second visit for him just to tell me go buy this 50,000 d3 , plus some calcium ..thas it
    i was ok ..hopefully see it working slowly but at least its working..:0)

  473. avbout the sun a lot people is talking about ..yes sun helps create vitamin d3 but from i was reading in other artcicles and making a research ..

    there will be never enough sun baths if we don eat right or get fortified foods with vitamins..one example will be people from way north like alaska or north russia canada etc ..where is so cold basically 10 month of cold weather and almost no sun at all
    looks llike they have a diet or eat a lot of salmon….all kinds of fish , caviar ..milk and cereal in the mornings too..

    there is not realy a high percentage of vitamin d defiency cases from those countries ..and in fact vitamin d defiency problems were found in countrys like saudi arabia where is hot and sunny 12 month at year..

    so yes sunbath helps ..taking sunbath once in a while but doenst look like it necesary to go burn in the sun everyday for 1 hours or more ..then might create skin problems
    in my own experience im hispanic live in houston tx where is hot and sunny 9 month a year ..i see the sun almost every day of the week , once a week i work on my yard for 2 hours on the sun..so im still vitamin d severe defiency ..i am bout to finish my 4th week of high doses of vitamin d3 and calcium and vitamin b12 and i am about 40% improve in my fatigue, my bone , muscle pain, palpitations, etc..

    so lest eat more fish, milk , egges etc and take the supplements vitamin pills and dont worry about the sun much..specially if you are white fair skin ..too much sun might give you skin problems

  474. RICHARD
    I agree with everything u said, but have u noticed my level of vitamin D?

    Mine was 6. :| so no wonder i would be exteremely tired, acutually iv been fatigued for 2 months without knowing the exact case

  475. amna my level was 10 very low too yes my fatigue its been bad for 3 month until now that i feel im getting little better..
    my doctor said anything below 40 is consider low but under 20 is consider severe so you are like me severe defiency which i will take long time for us to recover which i hope we do ..for now im positive with this 40% improvemnet in 4 weeks

  476. Richard: I think you should be concerned about the over dosing of Vitamin D. You are taking too much. It is ok initially, but once your basic storage completed you will start feeling the bad effects of over dosing. Please look in to it.

    Looks like Vit. D. deficiency is all over. I am from Long Island, New York.

    They are saying that most plastic containers contain a chemical which acts like hormones (some Pthalate used to make plastics). That chemical is a major cause of increases in cancer and other sicknesses. Why would otherwise there are so many sick people in the U.S.A. where people eat well, excercise, and take care of themselves. I belong to a small desert town in Rajasthan in India and I go there, except for poor nutrition related diseases and old age,
    people are healthy. Lately, with an increase in plastic product use and the use of cookwares and kitchen utensils made in China, they are seeing an increase in chronic diseases. Chinese products are very high in lead and other toxic things. They dont care. They just want to make money.

    Oh well.

  477. i am wondering if any body else has type II diabetes? i have read that vit d deficiency can contribute. my thinking is that when i start taking the vit d, my sugars might be lower. i have only been taking the low dose of 1000iu of vit d daily for a week and half now, but my sugars are starting to be really high now, especially in the morning. does anyone have any experience with this??

  478. Debby 2
    no i dont have diabtes i checked them with the vitamin d at the same time.. mm no i dont think so i have them… do u measure ur sugar? u have the machine?

  479. Matt
    chinas products are cheap, so many people will buy .. theyll make money..

    :S watever i mean the whole world there aim has always to be financial :P

    kk were moving out of the VDD :P

  480. To Debby 2 – Vitamin D deficiency has been linked with insulin resistance, the most prominent feature of Type II diabetes. I have had a number of patients find that they required less insulin and/or they needed to adjust their oral meds after repleting their Vitamin D levels. The incidence of Vitamin D deficiency is astounding!!! I have found that nearly 60-70% of my patients have levels < 30. Vitmain D3 is best. Oral D3 (cholecalciferol) 50,000IU is available on the internet but remember you must check your levels – you can’t replace blindly

  481. Barb
    ur a doctor? can u plz tell me if vitamin d dfeciency is linked with anxiety , heart palpitations ??

    My level was 6 incase if ur interested to know :)

  482. About the sugar levels and diabetis ..i did the diabetis test because of the symptons fatigue, and sometimes if i dont eat for long period of time i will get anxiety like my blood sugar was low or something

    i dont know if anybody else have experince symptons like diabetis like fatigue and sometimes the feeling like you have low blood sugar llike you gonna faint if you dont eat for long period of time?

    by the way i also have dry skin like psiorasis in my elbows and on my knees

  483. Hi All…

    yesterday was the start is a Horrid day for me, Not sure what to contribute it to however I went in the my Family Doc and he ordered labs, My Sugar is coming back high even though I am on Metformin and once again my potassium is low. Have any of you had this problem? Do you think a low potassium is contributed to The VDD??? Thanks so much…
    Kate

  484. Might be, it has a connection to BILLION of things. !

    just watch on what u eat, and eat more bananas the pottassium is all contained in them :D

  485. Debby and Troy – Thank you for your comments. I have been worked up for GI diseases – including Celiac, Chrones, and UC. However, I am currently on Sulfasalazine, which masks inflammation of the colon. So, my GI told me that unless my Rheum lets me go off the sulf, he can not tell if the colon is inflamed. My rheum and I are going to try taking me off and see how it goes.

    I know most of us probably have some severe pain when pressure is applied to the shin bone. Does anyone have that same pain on their sternum bone? chronic low back pain – hurts to sit for more than 20 minutes? Anyone have problems walking on hard surfaces? My heels hurt like crazy when I walk on our wood or marble floors.

    One more question – Anyone having problems with their bone alkaline phosphatase blood work? This is different from the alkaline phosphate serum lab because it only measures the ALP from the bone.

  486. First Post
    Listing of symptoms & diagnosis

    I am 42, Female, and live in Salt Lake City, Utah. Born in San Francisco, raised in Marin County, just north of San Francisco.

    Diagnosed with Psoriasis at age 7. Started gaining weight at age 7, and was a chubby kid until about age 13. Was normal weight until 18-19.

    Age 18 started arthritic symptoms in knees. Diagnosed with arthritis in mid-20s, specifically diagnosed with Psoriatic Arthritis in late 20s. At about the time the arthritis began, the skin problems mostly went into remission.

    As the arthritis got worse, I excercised less, but in my mind, my weight increased dramatically in ways unexplained by just the lower excercise. I gained 65 pounds in less than 6 months at the age of 19-20, with no dietary changes.

    I have had the bumps on the backs of my arms (keritosis pyleris) since a teenager.

    Diagnosed with PCOS (Polycystic Ovary Syndrome) in early 30s. My PCP watched my sugar levels, went on Metformin, and saw them increase, until finally diagnosed with Type 2 Diabetes at age 38.

    I see a Rheumatologist for my arthritis regularly, as well as my PCP for everything else.

    My arthritis affects nearly all my joints as well as ligaments and tendons. I have less than half the normal range of motion in both knees (I cannot move the pedals on any kind of bike the whole way around, for example, as my knees will not bend that much), and have just about the same problem in my left elbow, but not the right.

    Winter of 2007, I seemed to have injured my right achilles tendon, but had no knowledge of an injury, it just began to hurt.
    Went to a Podiatrist, got x-rays then MRI, and found I had a small rupture. Went to physical therapy, and when they worked on the muscles in my calves, it was absolute torture.

    I began taking Rx for high cholesterol and high blood pressure earlier this year. I started to notice more pain in my legs, both front and back of the calves, but now seemed to be coming from the bones as well as the muscles. Thought maybe one of these meds. was the culprit. Changed meds.

    Was tested for Vitamin D Deficiency in May 2008. Level was a 7.
    Have been taking 50,000 units once a week (dark green football-shaped soft capsule) for 12 weeks now.

    My doctors and I have just attributed all my pains and fatigue to arthritis and PCOS and diabetes and Hypothyroidism (forgot to mention that diagnosis at about age 32).

    I have also felt pain and numbness on the bottoms of my feet, horrible fatigue, restless legs, sudden muscle twitches, both rapid multiple fluttering type twitches, and sudden large-muscle twitches in my legs while sleeping that make me scream out in pain because they hurt my arthritic knees. Also, dry skin. Lots of hangnails. Skin tags around my kneck. Little bright pink hemangioma spots have started to show up this year: little pin-sized spots, some on my face, others on my chest.

    I get occasional GI problems, but usually when I start a new medication.

    I eat more produce and have a better diet than anyone I know. I try to do as much physically as I can, but the pain and fatigue have reached intolerable levels, to the point that I was driving my garbage out to my dumpster 50 yards from my apartment, as walking it there was too painful.

    For the last 2 weeks I have been walking my garbage out to my dumpster. I hope this means the Vitamin D treatment is working some.

    I will test again in a few weeks to see if the VitD levels have risen.

    I know this is long, and I didn’t get to too much related to the VitDD, but for me I have no way to tell what symptoms go with which diseases, or if there is a connection to all of them.

  487. Gwendol
    I’m speechless
    i really hope u get well soon honey.
    wat ur having can be treated and u can easily get releifed if god wills :)
    if its about the VDD ! It has connection to everything. well u know maybe u had the defeciency from long time ago and u didnt notice that. as u said u had arthrisis..how can a dumb doctor doesnt check Vitamin D from the first place…! its annoying when they leave some important issues and go for the normal ones. but i can assure u, u will feel much better when ur level is going to increase, Main symptom of a VDD is Fatigue… tell me about it my level was 6 :|

  488. Hi All,

    I have been achy and very tired, more or less ever since I had my daughter back in 2004. I was dx with RA about 2 years ago, after waking up every a.m. with puffy, inflamed, stiff hand/finger joints (still have this problem)

    Anyway, my NP suggested that I get tested for vitamin D levels last week, and sure enough, they are low at 19. She has me on the ergocalciferol 2 times a week. I read all the posts here and I’d say about every single one matches my symptoms of achy pain all over, lethargy and fatigue.

    I feel really old, tired and stiff and I’m only 37. I’m only 108 pounds, very petite, and used to be very mobile and had lots more energy. I really, REALLY hope getting my vit D levels up will help me feel better. I wonder if it will help the seborrheic dermatitis on my face and neck, too.

  489. I was diagnosed psoriatic arthritis almost 4 years ago. Based on an unrelated bloodtest for my OB/GYN, I was told a few days ago that I am vitamin D deficient. I was given a vitamin d supplement that comes in a liquid form and I need to put 10 drops in a cup of water every day and drink. It’s called Vitamin D supplement for BABIES (babies are supposed to have 2 drops). Does this make sense?

    I was wondering if the arthritis is related to this problem. I also always feel like I have very little energy and strength for my age (21!) and am wondering if this will be the magic cure. I live in a hot climate and avoid the outdoors during the day or take a bus. I guess I will start pushing myself to go out more.

    What do you think??

  490. If we look at life, water, sun, food, and air are the most important ingredients for it. Sun helped form life, I am assuming, through Vitamin D and by supporting other life sustaining materials and matters – like plants etc. After reading all the posts here, I am thinking that Vitamin D must have a big role in our bodily functions. If we cover the grass , in our lawn, with a plate, two days later that part of the grass is yellow. I wont be surprised if all our bodily functions have some or other link to Vitamin D. Within two days of my 50,000 IU of Vitamin D, I started sleeping better, my mood changed. A week or so later, my skin started feeling better. I wont be surprised if one day scientists tell us that Vitamin D has bearing on diabetes, blood pressure, cholestrol, cancer etc etc. It may not be the elixir of life but it probably has a major role to play in most bodily functions. I hope it is so and that all of us benefit from this.

    Amna: Why would Middle Easterns buy cheap Chinese goods when you guys are loded with oil riches? Joking ?

  491. Troy Suzann says:

    I am just amazed about how many new people get on this sight every week that have been diagnosed with Vit D deficiency. It makes me feel so much better to see that I am not alone… or crazy for feeling physically as bad as I do.

    For those of you who have been diagnosed with Arthritis, I have a question for you. I was diagnosed with VDD through my Endo– I have never been to a rheumatologists and I wonder if I should? Besides the painful feet which sounds like it might be from the VDD, my hands are a complete mess. I can barely hold a pencil any more, my once beautiful handwriting looks like chicken scratch, in the morning my joints in my fingers are so painful I can hardly bend them. I can’t wear my wedding ring at night because of the swelling. My knees are also becoming that way. Those of you who have arthritis– do you think I should go so a doctor about this or should I wait to see if VDD helps? I have taken it for 5 weeks now.

  492. troy do you feel any diference after 5 week? if by your 8 week 2 month you get not chasnges ..then yes you will have to check your arthritis..

  493. Troy says, “I am just amazed about how many new people get on this sight every week that have been diagnosed with Vit D deficiency.”

    Never in my wildest dreams did I expect such a tremendous response from my Vitamin D deficiency article. I never realized that there were so many of us out there with this problem. Seeing all of the comments on this post has made me aware of what a huge problem it truly is.

    Thanks to all of you for reading this, commenting and passing on the information to others. The response to this post has been so overwhelming that I haven’t been able to keep up with the almost 500 comments! :)

  494. Troy Suzann,
    Why not see a rheumotologist? If it is arthritis, the sooner you get on the correct medication the less chance of damage to the joints

  495. thanks to sandy for posting this website…i honestly didnt have a clue a vitamin defiency can createsuch of big health problems but learn soemthing new everyday!

  496. Sandy Robinson

    Thank you so much for this site. We all appreciate it and I have told many about it. Is there some kind of of Vit D Defic epidemic going on? Went to get bone density exam yesterday and the woman giving the test has Vit D Def as does her sister. I told her about your site.

    KATE

    We seem to have identical symptoms.
    Like yours, mine started with small intense pains in the middle of my shin in the middle of the night? I was so confused and puzzled by this, I didn’t tell a doctor. Finally as it increased, I did mention to my doctor. Only at night? she said and she just shrugged. Then it started in my thigh. ONLY RIGHT SIDE. Sometimes shin, sometimes thigh. Only at night. What doctor would listen?
    I went back to Kaiser, which is an HMO, and got new doctor, young internist. By this time, pain was unbearable, like dentist hitting a nerve, electric shocks, and he started looking into it. Sent me to a neurologist who after testing declared it was not neurological. He ordered leg xrays and blood tests. The blood test showed the VIt D Defic (and they seem to have lost the leg xrays).
    By the way, a week ago, pain moved to side of right ankle. I put a lidocaine patch on it last night and slept through the night!! Of course, it could move back to thigh or shin tonight.
    Very occasional pain on left side and occasionally during the day. I feel like I have shin splints as I am walking.
    On Friday I will take my 4th 50,000 unit. The little green football someone called it. My doctor also told me to take the calcium. I am taking SOLGAR calcium, magnesium zinc tablet three times a day.
    thanks everyone who writes of their symptoms and progress. The more information the better.

    Thanks again Sandy and best wishes to all. xx Sunday

  497. Amna, thank you for your comments.

    Troy Suzann (is your first name Suzann?)
    By all means go find yourself a Rheumatologist. There are therapies available to help prevent more permenant joint damage, but once the damage is there, it can’t be reversed.

    As far as a lot of people being diagnosed VDD lately, well, it has become gradually, over just the past couple years, something doctors are hearing about that maybe they should consider testing for. I have no idea why my dr. tested me for it in May, he didn’t mention it to me when I was getting my blood test after a routine check up, and I was really surprised when his office called the next week or so saying I was deficient in Vit D, and he wanted me to start taking Rx Vit D. Whoa. Shouldn’t I start with more sun exposure and maybe over the counter doses? Then they labled me “uncompliant”. Great. Just because this was totally out of the blue, no clue about the test, and no chance to have any questions answered. Since when is asking questions equivalent to uncompliant?

    I wonder if there is an autoimmune connection to an inability to absorb Vit D effectively. 20 years ago I don’t remember hearing the term autoimmune. It is so complicated, and I think the medical community knows there is much more they don’t know about it than they do know. I have heard theories that there may be both a genetic link, then some kind of event, like a virus, that triggers the autoimmune response, but that proving or disproving these theories is a long way down the road, let alone being able to use any of this knowledge. I look forward to breakthroughs in this area!

  498. Matt
    basically,
    not all middle eastern are rich.
    the country itself has oil but not all the citizens. so why blame the citizens for everything? and if your reffering anything to me, well i dont really know our goods whether its from china or not, i dont know like its a product being selled and people go and buy it :)

  499. This question is for anyone….with your vit D deficiency and the accompanying muscular weakness, when you stand and/or sit, do you feel a swaying sensation? Almost like a sensation that your muscles are so weak that they give alittle as we try to stand/sit and then regroup..thus making us feel a swaying/pulsing sensation?

  500. Sunny,

    Have you had any of those pains in your arms? I have recently started having the arm pain. You are right, We have the same leg thing going on… How strange is that? Its horrible is it not? This week has been a horrible week for me, My ribs and shoulders are killing me not sure if its all from the VDD or not. I get my levels rechecked next week.

    TO ALL!!!
    My potassium keeps dropping, Any one having this problem?
    I wander if its something to do with the Vitamin D.

  501. yea well i guess thats completely normal.

  502. goes to MArie ^^^^ forgot to mention her name

  503. Kate
    my electrolytes has always been normal. pottasium as my endo told me it has a connection to vdd and bad nutrition habits. eat well kate and drink lots of water.. :)

    by the way.. my mom yesterday found out that her level of vitamin D is 4 !!! Lower than mine which was 6:| Imagine.. and she felt achey and tired for long time but guess what! she thought she had lack of sleeps well thats one thing because lack of vitamin D causes insomania so she always blamed her self for not sleeping and having hypertention.

  504. so amna could be maybe something in your family?

  505. gwendol…im wondering too if has to do with autoimnume problems..since arthitis is related..diabetis, psiorasis, parathyroidsm also related with vitamin d defiancy

    i have psiorasis in my elbows and knees..

    and lot of the people here loks to have arthitis and other autoimnune problems..

    there is got be something that dont let us absorb this vitamin corectly….factor x remains a question for now maybe in the future they might find an answer..

  506. Richard
    no way :P it has nothing to do with genes. umm its because of one reasons, as u know I from the gulf and i live in Qatar which is really Hot!.. but what prevents the sun to be intered in our body to generate vitamin D is because we wear long slevees and head scarfs.

  507. Troy Suzann says:

    Gwendolon – I am going to make my appt with a Rheumatologist today. My first name is Troy, the Suzann is middle name. Just put both so people know I am a female.

    All – I noticed some earlier posts about weight gain. I am curious how many of your with VDD notice any differences in weight since your other symptoms started and after your started taking your Vit D supplement. For example, I noticed my weight increased over the last 2 1/2 years as my symptoms increased.

  508. Amna: I am having everyone in my family tested for Vitamin D. I think it is better to prevent the pains and aches by early intervention. I see that once the pains start they dont even go away after taking vitamin D. May be it should be made part of the regular blood test for everyone.

  509. Troy Suzannon
    I noticed that i lost weignt in less than 2 months about 10 or 12 kilos.
    rapidly and now after taking my supplements. I have good appeitite and I gained 3 Kg. about the symptoms… umm no they have decreased by the time my level increased.

    is that what you mean =)?

  510. Matt
    yes ur right… my mother was so shocked about her level. no she wants to test all my sisters and my brother including Dad :P

  511. Troy Suzann says:

    Amna, what I was trying to find out has anyone gained/lossed weight after treatment or increased levels of Vit D.

  512. Oh then I gained 3 Kg

  513. Wow, I’m glad this site is here. I had no idea so many people suffered from this. I didn’t even know about it until I got diagnosed yesterday – after years of wondering what was wrong with me! I’m 26. I started having gastro-intestinal problems in my late teens / early 20s and was diagnosed with IBS around the age of 20. Joint pain started a few years later around the age of 22 and worsened as time went on. I’ve always been tired and sleepy for as long as I can remember. I’ve really noticed the fatigue increasing over the past 4 years and coinciding with the increase of joint pain. I also have irregular and elongated menstrual flows, am very sensitive to cold temperatures, and experience seasonal depression. When I was about 23-24, my gyn suggested I might have hypo-thyroidism, but I brushed it off as no big deal until a friend saw a special about it on tv and urged me to go to the doctor. My grandmother has also experienced all of these sytems since her 20s (she is now 80), but she avoids doctors. I decided I better look into it, so I started researching hypo-thyroidism on the net. Then I became convinced that I had it because I have so many of the symptoms. It has been almost a year, I have seen 3 PCPs, and finally ended up at the endocrinologist after my thyroid levels came back irregular. The endocrinologist was annoyed that the PCP sent me to him because I am on birth control, which caused the “irregular” thyroid levels. I do not have a thyroid problem, but lucky for me, I ended up at the endocrinologist because he was the first to suggest a Vitamin D deficiency and sure enough, that’s what it was!! He prescribed 50,000 I.U. of D once per week and I go back for a follow up in about 12 weeks. I am so glad to finally find the source of most of my symptoms and never in my wildest dreams would’ve realized Vitamin D was so important!!

  514. MaryJane
    yeah, it a hell of a vitamin :P
    BTW what was your level?

  515. Troy, I started the VitD 50k 1x/wk the beginning of July. In late August, early Sept. out of the blue I began losing weight. I recognized I was eating much less for about 2 weeks, but it was a short period of sharply decreased appetite. Why? I don’t know. I lost 18 lbs in 2 weeks. Some of it I’m sure was dehydration. I have fluctuated a few pounds, but am basically 16 lbs lighter than I was 6 weeks ago. I would love to believe that taking VitD will be the secret to getting back to a normal weight, but deep down realize that is a pipe dream.

    I believe my VitDD is just one thin layer of my health issues, a symptom even, rather than an underlying cause. I am convinced my VitDD is because of my body having trouble absorbing/utilizing Vit D, as I get a normal amount of sun exposure, and consume plenty of Vit D fortified dairy products, regularly take multivitamin supplement, and am just very careful with my diet.

    I had a crazy moment last night when I pulled out my tube of Whites A and D Ointment (yes, the diaper rash moisture barrier cream), which my family has used for chapped skin etc. since I was little. Could the longterm use of this Vitamin D fortified “vaseline” somehow be related to my current problem with absorbing Vit D?? Like I said, a crazy moment.

    Kate, I am unaware of any potassium problems. I will ask my doc at my next checkup if this should be checked.

    Marie, I haven’t experienced the swaying sensation you asked about, but I cannot straighten my knees because of arthritis damage, so have had to be careful with getting in/out of chairs for years.

    MaryJane, hope the VitD treatment eases your symptoms. That goes for all of you, of course.

  516. Ok, Just thought I would update you all on todays dr. appointment. it was with my family doc. Not sure if i mentioned in previous post that I have a sedrate of 79? Well, I am having strange symptoms that he thinks falls under Ms…. And he is asking me to go to mayo, Says I am way to young to mess around with this many problems. I am just seeing a connection with the Autoimmune system and Vdd.

    Just my thoughts….

  517. Troy Suzann says:

    Gwendol, Thanks for your response on weight loss.. I am just curious because of many article I read when I searched Vitamin and Weight. ie: http://www.womentowomen.com/nutritionandweightloss/vitamind.aspx

    There are several others as well.

  518. TROY: that is an interesting article on vitamin d. thanks for posting that.

    GWENDOL: does that whites a and d ointment have mineral oil in the ingredients? I’ve always read that mineral oil, even applied topically, can absorb your oil soluble vitamins, like a, e, d and i think there’s one more. maybe k? it then takes the vitamins with it as it’s excreted from the body. lots of lotions have mineral oil in them. i always read the ingredients before i buy lotions and ointments. i try too hard to get my vitamins to let something wash them away.
    here’s just one article about it.
    http://www.thestork.biz/mineraloil.html

  519. Hello everyone!
    It’s been a while since I posted anything. Just to refresh your memory…
    JAN-APR ’08: Lots of pain. Trouble getting out of chairs and climbing stairs; doing daily chores was exhausting. Major low back/hip pain had been treated by specialist via PT and cortisone injections but no improvement. Muscle and joint pain increased during this time. Many sleepless nights in agony.
    MAY 2, ’08 : After lots of blood tests to rule out Lupus, MS, Fibromyalgia, Lymes Disease my Vit D level was tested. VDD diagnosis. Level 18. 50,000 IU Vit D for 8 weeks. Followed by 1000 IU daily forever. Major improvement by mid-May. I had resumed my normal active life, pain-free.
    SUMMER ’08: Had a great summer. Was able to tend to my very large and beautiful flower and vegetable garden. Walked daily. Some days with achiness but nothing that stopped me from doing what I wanted to do.
    AUGUST ’08: Vit. D level tested at 50!
    EARLY SEPT ’08: Pain and aches have returned. Overall body and joint pain. Trouble rising from chairs and climbing steps. Body hurts even when I am just resting. Pain worse in legs and pelvic area. Chiropractor says firbromyalgia. (md had dismissed that earlier in the year)
    YESTERDAY: I’ve made an appt with a rheumatologist. I do not want to go through another winter like last. I feel like that aged me about 15 years. (I’m 52 years old; overweight but very active) I believe it may be fibromyalgia. Also am wondering about my TSH level. As I review all of the tests on my online chart I don’t see that I’ve ever had that checked.
    I’ll keep everyone posted.
    I’m from Twin Cities area, Minnesota.
    Vickie

  520. Vickie,
    we miss you all
    I hope ur having a great health right now.
    but I also hope u get releifed as soon as u find out ur causes of pains =] !

  521. Troy Suzann says:

    Vicki, Have you had you vit d checked since your pain returned?

  522. Hi all,

    Wow, this site is amazing. I too have suffered with the symptoms of joint/muscle pain especially the aching feet for the past 2 years with the unrelenting tiredness. I put it down to the business of having twins; had them Feb last year. Isn’t it amazing how we all put up with so much pain?

    I have had my Vit D status checked, but haven’t received the results yet. Will this week. So in the meantime, had done a whole heap of research on vitamin/mineral levels and put it together once I found the vit D website. But I have also come up with some other information that many may find interesting too. For those who are also struggling with depression/anxiety, even paranoia type feelings (not trying to be rude or offensive), dry, scaly skin, but I was; Vitamin A. A vitamin A deficiency will give bizarre symptoms too. Many GP’s don’t test for it as, they are taught it isn’t possible to have low Vit A. But since most people now eat low fat dairy (if they eat it at all), margarine not butter and no liver anymore, vitamin A deficiencies are becomming common too. It is also a fat vitamin, and again like D, can be stripped from the body with mineral oils and also trans fats. They are stored together. Any how, I have straying from Vit D topic. But with our modern view of no sunlight, no fat, it is becomming more and more of a problem. I came across this website http://www.westonaprice.org for those who are interested in looking further. The fat soluble vitamins D,A and K all require similar environments to be stored in the body. Since I don’t have my Vit D levels yet, I have been spending some time out in the sun daily. I have in the past avoided the sun like the plague to avoid chance of skin cancer (I live in Australia), perhaps to my detriment. And have started eating butter, liver and full fat milk and I am starting to feel good again. My pain levels have dropped enormously and I don’t drag myself around wishing I was asleep.

  523. This is the first time I have been on this website and have not read all the posts. I was diagnosed with D deficiency 2 weeks ago my level is 11. I had been getting injections of B12 since about a year ago, so I was shocked to know that I am also D deficient. I also have been having really crazy symptoms for a long time before finding the deficiency of B 12, I thought that with the injections I was done with the bad symptoms and just to find that I was not really getting better and instead went to worse after feeling better for a few months. I have been having neck pain and headaches, back of head. I see a chiropractor for that, but I also get the overwhelming sleepiness that feels like I am going comatose at times. I don’t know if anyone has any of these symptoms. But in the last 3 months I have started having heart palpitations on top of it all, waking me up in the night. I have had a couple of times when I have woken up to find that my head feels numb like it feels when you sit on your foot and it goes to sleep. very scary! My chiropractor says that is from the circulation cutoff because of my cervical spine problems. I don’t really know. Another symptom I have had is leg cramps and even cramps in my thighs front and back, at times I wake up feeling that my whole body is cramping. I haven’t read everyones posts so am not sure if anyone has any of my symptoms.

  524. Gosh, this website is pretty amazing. You are all such brave people. Good luck to you all with finding health!

    I too, am suffering the symptoms of Vit D that many of the people have posted. I am yet to get my blood test results. Last year I was just a horrible achy mess; not good when you have infant twins. I’d never had such cramps and bone pain with joint swelling. The pain in my feet was horrible. But with the research from this site and others, I’ve spent much more time in the sun. It has worked wonders. As I don’t have my lab results, I haven’t been prescribed the pills. But most of my symptoms have abated over the last couple of months. I also think I’ve been Vit A deficient too. Perhaps some people here are also. The absorption and storage mechanisms of the fat soluble vitamins are all very similar, that is Vit A, D and K. I think Vit D is better absorbed if it is eaten/ingested with fat containing Vit A.

    To Betty, if you don’t mind me commenting; having your head go numb may not be just as simple as ‘circulation problems because of cervical spine’ I’m not entirely sure what your Chiropractor meant, did he/she mean because of subluxations, if they use that term? It does sound like circulation but it sounds more blood vessel orientated rather than spinal. Perhaps you have nerve impingement in the muscles at the back of the skull? I had the muscle cramps just like you. Like many posts, mine were mainly legs, hips, feet and shoulders. But possibly, where there is already stress, that area may play up more. You sound as though you may have an absorption problem. Do you have stomach problems too?

  525. betty
    i had leg cramps and heart palpitation. my level was 6 incase ur interested to know =]

  526. Betty…your symptoms sound alot like hypothyroidism symptoms. Have you had tsh, free T3, free T4 and thyroid antibodies tested? If not, you may want to. B12 deficiency as well as Vitamin D deficiency is a common issue with people who have hypothyroidism. If you’ve had these tests, you could post your results and reference ranges. some people have subclinical hypo….numbers are in the normal range, but they still exhibit signs and symptoms of hypo and respond really well to thyroid hormone replacement like armour thyroid.

    Numb fingers, toes, hands, face, head,legs…..can be nerve impingment by vertebral subluxations as well as muscles in a semi contracted state..impinging on the nerves. Muscles are highly affected and don’t work right with any hormone/vitamin deficiency.

  527. Troy Suzann:

    No, I haven’t had my D level tested since 8-13-08. It was 18 on 5-2-08. Up to 35 by mid-June; up again to 50 mid-august. I realize that for some reason it may have dropped. May be malabsorption issue. I hope to find out more by going to a rheumatologist. My md has left his practice to take a job with the pentagon and so I am without a doc anyway. That prompted me to seek out a specialist. Even if my D level is lower again, I suspect there is something more….like fibromyalgia or thyroid. I’ll let everyone know what I find out on Wednesday.

    Amna: Thank you for wishing me well! So happy you are feeling better these days.

    Have a great day!
    Vickie

  528. wow lot of difererent syptoms ..high blood pressure 145 /100 heart beats 100 to 110 anyone?

  529. Richard seems like ur having a hypertention… seek for a medicine ..

  530. RICHARD, i used to have the rapid heart beat. i only have that now if i let myself get dehydrated. my blood pressure is a lot better too since i’ve been on vitamin d3 for the last 10 months or so.
    are you taking d2 or d3? are you the same richard that has been writing for awhile. because that richard said he was taking 50 k doses of d3 and usually those high doses are d2. from what i’ve read d3 is used more efficiently by the body so you should be sure to get some d3 too.
    also the heart and blood pressure are really effected when the other minerals are low, like magnesium and potassium. you don’t want to just take calcium alone. get a good balanced mineral supplement. it should help a lot.

  531. thanks kat yes im taking the 50,000 doses..
    for some reasons some days my pressures will be high 145/100

    then like next day will go to 130 /85 around that ..more close to normal

    not sure what cause sthe rapid heart beat and the highblood pressure my doctors told me to check myself the blod pressure at least once at day..im only 32 ..was wondering if it has to do with vitamin d ..but yes i had heard about the minerals helping your blood pressure and heart..

    thanks

  532. As far as blood pressure goes, it has effected mine for sure, Mine used to always be 100/60 now its 150/80 I am on my 6th week of Vitamin d 50, 000 Iu and it has not gone down yet.
    This VDD thing is a scary thing.

  533. Hi everyone! I’m new on here and I want to thank you all for your experiences! They’ve helped a lot! I just wanted to share with you my experience with VDD. I’ve lately been super dizzy, tired, lightheaded, and having heart palpitations. I just got my test results back and my Vit. D is at an 8! From what I understand that is super low! I’m only 24 and have been diagnosed with hypothyroidism, and am taking 88mcg of synthroid for that. It seems to be stable for now, but this Vit. D is a shocker! Hopefully the doc will let me know what the plan of action is tomorrow. Looking back I could attribute a lot of aches and pains, and generally not feeling well on this deficiency. I’ve never been checked before this too, so who knows how long it’s been like this. Well, thanks everyone for the help!

  534. yes jenny level 8 is consider severe vitamin d defiency ..so you need to talk to an endocronogist to give you treatment as soon as possible ..
    im my 4th week of treatment i have improve about 40% but still get heart palpitations, high blood pressure, pain on joints , feet, fatigue . get treatment as you as can ..since looks like takes forever to get better after treatment..

    and i dont know if anybody in this board has basically cure 100% or close to 100%

  535. Thank you Richard! Yeah, I guess even 10% better would be better than the way I’ve been feeling. I hope I’m okay for work tomorrow. I’ve been out for a month for removal of an ovarian cyst, and tomorrow is my first day back! I have to stand and walk around all day, so hopefully I won’t faint or get sick…

    I hope you feel better soon! It sounds like many on this board have been through a lot. I’m so glad I’m not alone!

  536. Troy Suzann…more regarding your question about my current D level….

    Interesting….I’ve been reading The Vitamin D Cure book which states that the amount of Vit. D a body needs is dependent upon one’s weight. 25 IU per pound of weight, to be exact. According to the book I should be taking 5x the amount of D my md had prescribed once my D level was in the normal range. So,early last week after reading that – and after I had begun hurting again – I increased the amount of D I am taking. I didn’t go 5x but I did go 3x…or 3000 IU daily. Last evening it ocurred to me that , except for some minor discomfort in my low back, I hadn’t hurt all day. This morning I woke up with no pain! Also, my sleep has improved. I’ve slept through the night – 8 hours – for three nights now! So, now I’m thinking….do I keep the appt with the rheumatologist? Or continue with the increased D and see how I feel? This is kind of like when your car is acting up , you call the machanic to take it in and the car runs fine when you take it in. I want a doctor to take me seriously and not think I’m imagining things or whining. So, for now, I’m inclined to cancel the appt.

  537. Jenny
    ur just like me, i believe vitamin d has alot to do with heart rythms,,, and my level was 6 close to urs but lower !

  538. From Jan …… everyone of your symptoms are mine, exactly ! I, too have been found B12 and D deficient. B12 levels climbed to what’s considered ‘normal’ in 2 months, after 2 months of injections, but I was barely beginning to notice improvement. GP stopped injections for 3 wks, and my numbers dropped from 983 (normal ?) to 535 ! GP said he would give me a shot that day (9/25), & I could go monthly. Am so upset, knowing I really can get better if kept on a more aggresive regimen. RE: Vit D., I was found to have levels at 16. I had no idea about VDD, but I got so very ill taking it tho, and GP is now trying to use smaller dose, OTC. Hope it works. I too have palpitations, leg cramps, numbness in head ( I also have c.spine prob), and all the symptoms you described. Weird. Isn’t it? I think doctors are becoming more aware of this medical condition. My own doctor indicated it’s almost become an epidemic, and that he now orders Vit D tests on ALL his patients. I love being kept abreast of all the postings. Keep them coming! Thanks Jan

  539. Troy Suzann says:

    Richard– low blood pressure 113/79 and around 66 heart beats a minute most of the time..unless having heart palpatation which they are not as frequent anymore.

  540. Vicky: I am with you on this. I was told to take 50,000 IU per week for 4 weeks and then after one month another 50,000 IU just once and then after a week have blood test. I am due for blood test this coming Saturday.
    When I started on the regimen, three days after the first 50K, I was again feeling the pains and feeling low. So I took Caltrate (has 400 IU Vit. D) and two extra Vit. D pills (400 IUs each). That worked in diminishing my pains for a couple of days. When the pain appeared I took the same again. I have have been taking about 1200 IUs almost every other day. I think 50,000 IUs per week is just a number. 53,000 or 55,000 IUs per week is not really that much different. May be we need different amounts of D, depending upon our day to day activities, health, age, etc.

    FOR EVERYONE: We all talk about Thyroids, B12, now Vitamin D when it comes to pains, depression and other chronic symptoms. There is one more factor. Candida (yeast). Some people with low immunity, people on steroids, and people who have taken antibiotics get an overgrowth of Candida in their GI tracks. An overgrowth of Candida (called Candidiasis) is very painful. Causes depression/anxiety, bodily pains, stomach problems, palpitations, and other symptoms which Doctors generally say that, ” It is all in your head.” If you still suffer after treatment for VDD, B12, Thyroid then have yourself checked for Candidiasis.

  541. Sorry, last post I misspelt Vickie as Vicky.

  542. yes, what matt was saying about candida is true. it also effects your intestines ability to absorb the nutrients that pass through them. so it’s directly related to how much vitamin d and other nutrients your body gets. also h. pylori bacteria will do the same thing. you have to have an abundance of good bacteria to keep healthy.
    be sure to eat yogurt and get a good probiotic or acidophilus supplement to take. it makes a world of difference. if any of you have reflux, getting the good bacteria growing in your gut can fix it without taking acid pump prohibitors and all that other stuff.
    also be sure you’re taking vitamin d3. i keep saying this, but it’s important. d2 doesn’t work like d3 does. those big 50k doses that everyone is taking are probably d2. i’ve been taking otc d3 and my level has been steadily going up and my palpitations and leg pain etc… are gone.
    also be sure you’re getting good balanced minerals. not just calcium. they need to all work together.

  543. Does anyone have tight, sore arm muscles from the vitamin D deficiency? Pressing my palm flat on a table or the floor is painful and my forearm muscles feel “too short”.

  544. Thank goodness for this site and all the people who have shared their stories!!! Thank you all.

    A year ago, I got a sinus infection and then bronchitis – I was sick for about 6 weeks, and I was prescribed 3 rounds of antibiotics and prednisone, along with steroidal inhalers. I felt like I was having trouble breathing (chest pressure), or that I had pneumonia. I had increasing bowel problems. I had an incident where I passed out. I felt better for a few months (around the holidays), but by February, I was sleeping round the clock. Out of a typical 30 hour period, I would sleep around 24 hours. I described this feeling as being poisoned or drugged – my brain became foggy, I had a hard time concentrating, and I was sleepy ALL OF THE TIME. I was quickly diagnosed with narcolepsy, after tons of tests were done to rule out heart problems, brain tumors, breathing problems, etc. I was prescribed 600 mg of Provigil per day, along with Xyrem (date rape drug). I could not tolerate Xyrem, and I had to stop. I began taking 20 mg of Adderal along with the Provigil, and I was still fighting sleep the majority of the time. I believe I had a small seizure, when I was staring at some flashing firetruck lights at my neighbor’s house, I began having double vision and blurry vision. I think most people (including some of my doctors and nurses that I spoke to) probably thought I was mentally ill or that I was a hypochondriac. I also had trouble with my eyes twitching, especially around flourescent lights. I noticed that all of these symptoms started after I had had a few night sweats and hot flashes (I was only 39 when these started). I had almost lost hope, but went to the Cleveland Clinic. The internist there tested me for Vitamin D, and my level was 19. I am so grateful to find out. I was prescribed 50,000 IU weekly, and after the first day of taking Vit D, I felt better! I rarely had the muscle aches that people speak of on this forum.

    By the way, I have been bad about avoiding the sun, but I was sleeping a majority of the time, and I was in bed! Also, had a suspicious pre-cancerous mole removed a few years back, so I thought I was being a good girl. :)

    Have any of you been diagnosed with neurocardiogenic syncope, gastroparesis, narcolepsy?

    Do some of you have such a wide variety of symptoms?

    I keep seeing links to Multiple Sclerosis…

    Could I have irreversible damage from this level of 19? I really felt like I was dying – it was scary to have so many neurological side effects, like double vision, small seizure, excessive daytime sleepiness.

    Thanks again – so good to finally have an answer!!!!

    Take care!

  545. JEN: undoubtedly a lot of the things you ended up with were because of the antibiotics and steroids you had to take for the respiratory ailments you had. i wish doctors would make sure they give their patients probiotics when they prescribe antibiotics. otherwise you end up with all kinds of bad side effects. please go get yourself a probiotic or acidophilus supplement to replace the good bacteria in your intestines. it’s good that you’re getting your vitamin d level up but you need to get your gut healthy too. i think intestinal problems are why a lot of us were low on vitamin d in the first place. we couldn’t absorb it correctly.
    your symptoms sound pretty much like a lot of people’s here. it seems we need vitamin d to keep just about everything in the body working the way it should. along with all the minerals that the d helps us absorb.

  546. Kat, you asked about the White A and D Ointment I mentioned a couple days ago, and whether it had mineral oil. Yes, it does. This stuff is something I have used since I was little, but only occasionally. It is the only thing that helps when I get really chapped lips. I will have to read up on mineral oil. Thanks for the link.

    I keep intending to get out in the sun, but I am having a really hard time giving up my night-owl ways.

  547. Wow! I am surprised to see so many posts since a few days ago I posted the first time. My level is 11 and have just taken my second dose of 50,000. I thought I was just nervous or having anxiety since the heart palpitations started few months ago. I don’t have high blood pressure thank God except when I am feeling really sick it goes up temporarily. I have everything else, no energy and dizzy spells at times severe. I haven’t had any more cramps, but I do see that everyone advises an endocrinologist so I will ask for a referral, and have my thyroid checked more thoroughly. to Nellie, yes I have vertebral subluxation, atlas and axis and also C 3 to 7. Chiropractor says I have impingement of nerves and arteries to my head, he helps a lot. lately I have been feeling worse with sinus trouble, haven’t had cramps and sleep little better since starting D3 vitamin.
    My B12 level is 449, much better than 98 when I started 1 year ago. My doctor won’t give me injections anymore because my level is normal now she said. I dream a lot and have mixed up thoughts when I wake up. That happens only at times and always at night. During the day when I nap i don’t have dreams. I did have a test for candida and it was normal.
    I should warn everyone that using creams or lotions with uv protection is very bad idea. I used a face cream with uv protection for the last 15 years and now I come to know that prevented me from absorbing D.I used it on my hands and arms and on my feet to keep from getting the sandal strap marks. it works good for that purpose but tragic, I find out now. I have been told that getting sun before 10 am and after 3 pm is safest and only for 15 minutes, face and hands is enough. I wish you all good luck and better health

  548. Kat: The 50,000 IU green football-shaped geltabs that everyone is prescribed is D3.

    Matt: I think to start the 50,000 IU does help a person but then – if a person is prone to be losing D or not absorbing it properly then additional is needed. I felt great the entire 8 weeks I was on the megadose. It was several weeks later after being on 1000 IU per day that I began to have the muscle aches and pains. I compared it to feeling like I had the flu all the time. Felt weak, hurt all over, etc. So, for now I’m going to keep taking 3000 IU per week. I feel great again this morning and getting 8 hours sleep at night is heavenly! Another thing the Vitamin D Cure book says is that an ideal level is 50-70; not 35-50 as most other information states. I had tested right at 50 in August. Also, according to the book I am at high risk for deficiency because of my age – over 50; BMI over 30; and live in Minnesota.

  549. Kat: The 50,000 IU green football-shaped geltabs that everyone is prescribed is D3.

    Matt: I think to start the 50,000 IU does help a person but then – if a person is prone to be losing D or not absorbing it properly then additional is needed. I felt great the entire 8 weeks I was on the megadose. It was several weeks later after being on 1000 IU per day that I began to have the muscle aches and pains. I compared it to feeling like I had the flu all the time. Felt weak, hurt all over, etc. So, for now I’m going to keep taking 3000 IU per week. I feel great again this morning and getting 8 hours sleep at night is heavenly! Another thing the Vitamin D Cure book says is that an ideal level is 50-70; not 35-50 as most other information states. I had tested right at 50 in August. Also, according to the book I am at high risk for deficiency because of my age – over 50; BMI over 30; and live in Minnesota.

  550. Sorry , I didn’t mean to post twice…my impatience with my computer caused that!

  551. Thanks, Kat! I agree – I have been taking some probiotics – I never thought I would have to research so many health issues. Overall, alternative medicine has helped immensely! I also felt better after having 3 colonics, but I still was fighting some of the symptoms, and I couldn’t afford to keep having them. I think I have really been struggling with a systemic fungal infection (yeast), also. I have been prescribed antibiotics over 100 times, most from age 7 through age 35, due to strep and sinus infections.

    All: I am also amazed at all of the posts. I first saw this site less than a week ago, and there are over 100 new posts!

  552. Hi everyone..

    Julie…yes, my arm muscles..especially forearms feel like I can’t ever stretch them out. They are always sore and tight…I have this is the majority of my muscles and I do believe it is D deficiency as well as my low thyroid, low cortisol issues. Our muscles need that correct level and balance of vitamin and hormones to be able to contract and relax efficiently. So until we get our levels where they need to be, I think we’ll feel stiffness and with muscular contractions/stiffness…we’ll have pain!

    I totally agree with issues of candida…we need to cut out sugars..in all of it’s forms….starches and etc. A good probiotic will help to recolonize our intestines, our entire body, with good flora/bacteria. They say our immunity starts with our intestines and is dependent upon it having a healthy balance of the good bacteria.

    So, am I reading that the green football shaped pills are actually D3 and not D2?

    With all that I’ve read, I believe the D3 to be the best supplement in the long run. This is also mentioned in the Vitamin D Cure book.

    Did those of you taking the green football shaped D3 (50,000) get them by prescription? Or healthfood store somewhere?

  553. Troy Suzann says:

    Marie, my green football 50,000 IU pills were prescribed by my endo.

  554. my 50,000 iu pills are white clear gel and inside a white powder that ..my endo gave me the website to order them..i got them 2 days priority mail ….i heard lot of people saying that takes 6 weeks for the vitamin d 3 to start getting active? is this true?

    i have improve about 40% less pain and al syptoms but still have them i juts hope by my 6th week like some peope say i get much better..my next endo appoimnet is in 4 more weeks

    so i see a lot of us feel like we are basicaly dying with so many symptoms …i hate the way i feel at my 32 young .i feel like im 90

    hope we all get much better

  555. Troy Suzann says:

    Vickie on 29 Sep 2008. Just saw you post. I am glad you feel better after increasing your dose a bit. I am one for disclosure with your doc, so I would suggest keeping your appt and letting him know what you are doing, that way if it stops working he will know that you have been there and done that. Just my opinion. I hope you continue to feel better.

  556. Richard….I have read some people say that they start to feel some improvements around 3 weeks. You are already feeling 40% better…so I would imagine that in 6 weeks you’ll feel even better. From my mouth to God’s ears, right!?! What is the website where you ordered your D3?..if you don’t mind sharing?

    I have been on D3 for two weeks now and i do feel some improvements already. I hope that at 6 weeks I will feel better too! They say to retest at 8 weeks to see what your levels are. I have also read that some docs test at 12 weeks.

    I totally understand the frustration of feeling so crappy. I also feel like I’m in my 90’s…I am 47. I started wondering how bad I would feel at 80, if I felt so horrible at 47! Yes, it does feel like we are dying…it’s a strange feeling to lose our energy and ability to function the way we used to. It can be very depressing, because our lives change as we find ourselves having to plan our days based on how we think we’ll feel that day and how much energy we have.

    Small things like walking to the mailbox, making dinner, playing with your pets or children become too exhausting and all of this wears on us mentally.

    So on top of feeling pretty miserable physically, we also have to contend with the feelings of depression that come from having our lives altered! It’s not been easy, not been fun…but it sure puts things in perspective, doesn’t it?! Our level of functioning has been greatly reduced and somehow thru all of the suffering with this and the mental anguish…we’ve managed to figure out what may have been causing all the problems in the first place.

    I do wish that each of us finds a renewed sense of health and energy as we keep popping those vitamin D supplements!!!

  557. Wow, I was just reading Marie’s comment. I’m 42, and I was telling my husband the other day how I feel like I’m 80. I was diagnosed 2 1/2 years ago with IC (interstital cystitis) and I suffer from migraines primary during the months of April thru September. I’m already starting to feel better now that the weather is cooling down. I thought that I might be hypothyroid, along with my other health problems, but the endocrinoligist office called today, to tell me I’m vitamin D deficient. What a surprise! But in a way it makes sense, for the last couple of years I’ve retreated inside my house most of the spring and summer because of the migraines. I feel like there’s some hope now, maybe I won’t feel so tired, weak, forgetful, etc. once I start taking Vitamin D. It’s encouraging to know that I’m not the only person who struggles along with a mixture of illnesses, trying to do my best to live a productive life. Thanks!

  558. thanks marie yes i hope i keep improving
    so i can go back to normal life
    today i been moving some stuff from fists floor to second floor my paian and fatigue are less than before like i said about 40% i have improve but my heart gets rapid beats just by walking downstair to upstair like i have to breath harder..im still far for been myself back like couple of year ago like in my early 20s now im only 32

    hope god hear our prayers so we can be active again and even go work out to get in shape :)

    this is the website

    https://secure.bio-tech-pharm.com/detail.aspx?product_id=20&cat_id=2&subcat_id=0

  559. Amna: Thanks for empathizing with me! Sometimes I feel weird that I have all this because I’m so young, but I guess I’m not the only one!

    I also have been having problems with my GI tract after I eat especially. I attributed it to the ovarian cyst that I had, but now I’m still having the problems after the cyst was removed! I guess it would either be from maybe IBS or even VDD. I still gotta talk to my doc about those results! I’d better send her a message…

  560. JENNY: go back and read my last couple of posts. it sounds like probiotics would help you too with your intestinal issues.

  561. It does sound like many of you have seen improvement with the probiotics. Where can you find these? And how do they usually come? Are they cleanses or pills, or supplements, or what? Sorry, but I actually have never heard of these! Thanks!

  562. JENNY: you can usually find some kind of probiotic or acidophilus in most drug store vitamin sections. or go to a vitamin store or a natural food store. they all should have them. they can come as capsules or tablets. some of them need to be kept in the refrigerator. now-a-days a lot of them can just be kept in the cupboard or where ever you keep your vitamins.
    if you like yogurt, eat that. but you should probably still find the pills because you get a bigger dose of the good bacteria when you’re taking the pills every day.
    i think they’ll help you a lot. it’s not the kind of thing that you’ll probably notice the first day though. you will need a couple weeks at least to get the good bacteria built back up in your intestines.
    good luck and report back if you find them.

  563. Just curious am I the only one on here that is wandering if I have ms? My symptoms are very strange not sure whats from the VDD, I am having a MRI next week. But my coordination is off and I have most of the symptoms listed for ms, Just curious if its a coincidence.
    My Vdd levels are 11.

    Thanks,
    Kate

  564. I have been reading all of these articles, thank you. My doctor put me on 50,000iu twice a week for 8 weeks. It was interesting that I recieved a report from the lab saying that my colestral level was 239 and my LDL was 170 and HDL was 58. Two weeks later the Doctor calls me to say I was Vitamin D Deficient and must get this perscription filled plus continue to take 1200 over the counter of Vitamin D a day. Interesting that I do not hurt anywhere, (somewhat in one knee because of osteoarthritis) I have energy and do not have any other problens besides having a hard time loosing weight. I am 60 and 160 lbs. Gained 20 lbs just this year. I am working on exercise and trying not to eat junk because I would like my colestral to come down. Has anyone else been asked to go on vitamin D and not really having any problems?

  565. Troy Suzann says:

    Kate- Before being diagnosed with VDD, they originally thought I might have MS as well. Many of my symptoms were similar to those of MS.
    -tingling and numbness in hands, arms, legs and feet. (neuropathy)
    -Tingling and numbness on left side of mouth
    -fatigue and old feeling
    -stiffness/pain in hands and feet (canít hold a pencil anymore without pain,-limbs fall asleep when in bed at night
    -joints and bones hurt especially feet hurt when getting out of bed in am
    -brain fog
    -meloncholy
    -slight attention deficit
    -gait issues and balance
    -urinary frequency
    -hyperreflex

    On recommendation of my Neurologist, I had an MRI done on head and back with and without contrast and they did not see any lesions although I have several problems with my back and neck (cervical sponylosis and spinal stenosis, tear in lumbar disc, plus cysts on nerve sheath in the sacral area) I had nerve and muscle studies done and they were fine. I did not have a spinal tap done where they check the CFS, but It made me feel better knowing I most likely did not have MS. I was still concerned because I wanted to know what was going on with me.. and my back issues were not causing all of these problems so I went to see an Endo. I have been on 50,000 IU of VDD for 6 weeks now and I am starting to feel a marked difference on how I feel.

    I am not saying don’t go to see someone for the MS diagnosis –You NEED to, but I hope you do see some relief from the Vit D treatment. A lot of the studies you do see on Vitamin D deficiency are tied to MS, RA, and other autoimmune disorders

    Good Luck!

  566. Kate…I think alot of us have feared having MS because everything we read about D deficiency states that MS can come from low D.

    I’ve had alot of the symtoms that Troy Suzann mentioned above…so I’ve wondered about it as well. I did go to a neurologist a while back with complaints of dizzy/off balance sensations. He did alot of hammering on reflex areas and etc and told me he thought it was trigger points and anxiety..not MS.

    I think I read in the Vitamin D cure book that uncoordination was a symptom of low D, I’ve read so much stuff lately I can’t be sure it was in there, but i did read it a few times in a few areas.

    What type of symptoms are you having?

    Jody, I wish I didn’t have any symptoms..but I’ve got a list! I hope your D supplements will make you feel even better than you do now!

    Troy..ok, 6 weeks and you’re feeling a marked improvement…that’s what I want to hear, especially since your symptom list looks alot like mine! Come on…six weeks…..

  567. Kat, Jenny: Most over the counter probiotics have very little live bacterias. These few are dead by the acid etc. in our stomach. Dont waste money on these. I know a company who only specializes in Probiotics (in Arizona), and has developed a method of preserving the bacteria in a capsule that can be delivered to the intestines safely. I will look up the address. But, if someone can tolerate yogurt and milk, then the best thing is to drink a full glass of warm milk and in between eat a lot of organic yougurt (Blackstone has it). This will help. Once I find out the details about the company I will let you guys know.

  568. MATT: thanks for the info. i look forward to hearing about the company that has the good probiotics.

    the otc probiotics do work pretty well though for a lot of people. so JENNY and anyone else who’s having intestinal issues, it’s better to get them and get started right away instead of waiting.
    just recently my brother started taking otc acidophilus. for years there have been lots of foods that gave him stomach pains, gas and diarrhea. after a couple weeks on the acidophilus he can eat anything. he’s not the type to eat yogurt either so he had to get his good bacteria from pills.
    a few days ago a friend of mine who had had terrible reflux problems told me since she’s been taking otc acidophilus capsules she’s only had some minor chest pains once in a while.
    so from my own and my friends and familys experience i know that the probiotics you can get at the drug store do work.
    i’m sure the special ones matt knows about probably will work better, but start with the ones you can get right away and then get the mail order ones later.

  569. Kat: Thank you for the info! I will definitely check for those when I go pick up my D vitamins.

    My doctor got back to me and told me that my low vitamin D level is actually very common in San Francisco. She told me to get a 1000 IU daily, or a 400 IU 3 times a day. She said I could get it with or without calcium. I guess it’s good that it doesn’t seem too bad, but it’s a little weird that people with higher levels than me are getting prescribed 50,000 IU a week. What do you guys think?

  570. JENNY: i guess it depends on the doctor. i would take more than 1000 iu’s a day. higher doses aren’t going to hurt you. i started out taking 2000 a day and then went down to 1000 and after 3 months my level was only up to about 22, so my naturopath has been gradually having me take higher doses. i’m taking 6000 iu’s a day right now.
    i don’t think your doctor quite knows what they’re dealing with.
    i would take at least 5000 to start out with. hopefully the doctor will have you tested again in 6 weeks or so. it’s kind of a waste of time to start so low.
    you should be getting all your minerals too, not just calcium.

  571. Kat: Yeah, that’s what I was kinda thinking. I’m probably gonna take a multivitamin from now on too. Well, I’ll start out with the dose she gave me, and then in a few weeks I’ll be on her for another test. And if it comes back low still, then I’ll up my dose. That way maybe she’ll see it’s not such a trivial matter!

  572. Hi

    I have been diagnosed with Vit D Def in March 2008,my levels were <9, I was put on Calciferol and B-Cal D, as my calcium level dropped as well. My symptoms are dizziness, fatigue, imbalance, pain in joints and cramp in stomach, stomach felt like there was alot of gas. i could not eat and i lost 10kg in three months. the tablets are not helping me as i still feel the same every day. i cannot even make it to work. The people at work dont understand what i am going thru and my doctor was not very clear with his explanation on this disease. All he said was, take your tablets correctly as you will have all of these symptoms. I am want to see a specialist who delas with this. i can longer work as i get very tired and my body pains alot and the dizziness and nausea doesnt stop. Please help me find someone who can help me. I even thought about resigning from work but i just bought my house and cannot afford to resign. i looked at medical board, but my doctor is not playing the game. I started in this new job last year May and started to fall ill late last year. i assumed it was the enviroment as its a oil company and i am surrounded by oil compnaies. also this area is very polluted and i read that in a poluted area it is very difficult for sunlight to seep thru as there is too much fog. Is there anyone that can help and advice. Can one get mediaclly boarded off work with a Vit D Deficiency.

  573. VALERIE? what doses of the pill you taking? basically lot of websites and doctors prescribed the 50,000 doses also take vitamin b 12 helps with your energy levels..

    i recommend going to an endocronologist…i been in regular doctors office before ussualy they dont even mention anything about this vitamin d problem ..

    where do you live? thas is very polluted..

    so since march basically you dont feel any change or improvement?

  574. Troy Suzann says:

    Valarie– you did not say how much Vit D you were on or how often or what kind of Doctor you are going to. Vitamin D toxity has many of the same symptoms as you describe–have your symptoms gotten worse over time and again how often and how much vitamin d are you taking? If you look back at all the notes an Endocrinologist or Rheumalogist seem to be the two doctors that many are going to in order to get help. Also if your symptoms are extreme you could always go to your hospital emergency. Bottom Line– keep looking for help. Wish you the best.

  575. Here is the link to the probiotic manufacturer.

    http://www.nutri-health.com/default.asp

    They have capsules, powder and other forms that contain about 16 different kinds of friendly bacteria. I find it better to take it before sleeping so the bacteria has enough undisturbed time to multiply. Hopefully, they also help in the aborption of Vitamin D.

  576. matt…so you think this good bacteria has a big role in the good absortion ?

  577. Hi Richard and Troy, thank you for your replies.
    I used to take 1 calciferol tablet every saturdays and 1 B-Cal-D everyday. Now the doctor changed it to 2 tablets a month and 2 B-Cal-D everyday. I have been seeing my GP. Yesterday I saw another DR GP, was recommended as he is apparently very good. He gave me a Vit B12 injection as my pressure wasvery low and i am abit anemic. He also gave me medication for the joint pains and for the ulcer that i have in my tummy due to my appitide being very low. He has now given me medication for the pressure and Anemia. He said that he is going to investigate VDD as its a very rare disease as i live in Durban, SA and there is alot of sunlight, but were i work, Island View, Bayhead there is alot of pollution so i am assuming its because of that too.

    This morning my i felt very weak and the nausea makes me feel even worse. I legs feel weak and i sometimes canot drive but forced to as i need to get to work. Bosses at work are very fussy and they want me to investigate VDD as my sick leave record is quiet high and they even wanted to dismiss me. I started here last year MAy and started falling ill late last year. i loved my job but now after feeling so ill and tired all the time i just cant make it in the mornings. I dont even go shopping or out eating with tyhe family as i am always feeling dizzy and stomach feels cramped especially when i eat. Monday i could not move my left hand as it was so saw at the shoulder bone. i did not go to the doctor cos all he would say, its because of VDD and then i pay for nothing, therefore i went to this other dr yesterday.

    You are right maybe i should see and endocronologist or a Rheumatologist. Its just that my medical aid was exhuasted begiing of this year with me going to the GP all the time just to find out that my VD level is low. Have to save some money now to visit the above specialists.

  578. Valarie
    endocronologist is ur only answer. first fill up ur missing levels of vitamin d. then compare ur self with the aches and the fatigue u have with the therapy. ofcourse u will feel tired and fatigued because ur supplements are just not wright for a vitamin d severe deficit. here are pple there level is above 10 and theyre on mega does so how about u, seek for n immediate endocronologist

  579. Valarie…how much Vitamin D3 is in the Calciferol and in the B-CAL-D supplements that you are taking? Your own vitamin D test showed you <9…is that correct?

    If you look on the bottles of your supplements…see how many pills make one dose and tell us what amount of Vitamin D3 is in each dose in both supplements.

  580. I am so disappointed. I was diagnosed with viD deficiency in mid July with a level of 11. After four weeks of the 50000IUs once a week, my level rose to 15.7. Then six more weeks of the weekly therapy, my level has only risen to 16.1. Has anyone else experienced this very slow rise in their levels? I don’t know what to do. My PCP has recommended eight weeks of the 50000ius weekly and then retest. Any thoughts or suggestions from the great network of support on this message board?

  581. Julie..I am new to all of this as well…so I can’t offer much advice with how long it takes to raise our levels. However, I have read consistently that the most bioavailable D to take is the D3…not the D2. So….if you’re taking the D2 and not D3…you might consider switching over to see if it makes a difference. It might mean using a good quality over the counter D3 instead of the prescription of D2. Just my opinion….

    I’ve been on 9000iu of D3 daily for 3 weeks now and i definately feel improvements. I will retest in a month or so.

  582. julie ..my endo also prescribed me the 50,000 once at week..the first 2 weeks i didnt feel any changes until the third week and then the 4th week i little more improvement..because i been making researches about this diseases ..some doctors called a condition not a diseases but god its really a terrible diseases with all those symptoms..

    i raise myself the 50,000 doses 3 times a week plus eat lot of fish , egsgs and at least 2 times a sun bath of 30 minutes at week
    since i did my researches some othe doctors has that prescription which had work better they also have a injection up to 300,000 once every 4 weeks ..after i raise myself the doses i start feeling improvements..still have the syptoms just less pain. lees fatigue etc.

    some people is affraid of overdoses..lest be real we are so low level that before getting overdose of course at leats we needs to reach the right levels..first before that happen

    so i would suggest increasing the doses and talk to your doctors aoout it…my next doctor appoimnet its in 4 more weeks where i hope my levels will be at least close to the right range

  583. Troy Suzann says:

    Richard, I am going to put in my two cents about raising your vitamin D– do not do so unless you discuss with your doctor. There is a reason why your levels are low and until you find out WHY your levels are low- It is not Normal to take large doses of Vitamin D so work with your Doctor and push them to find out why it is necessary if things are not improving.

  584. for those low levels not increasing. ! PLEASE DO TELL THE DOCTOR TO PUT U ON INJECTIONS FOR 300 000 IU or 600 000 IU ONCE A MONTH LIKE I DID !!

    and ur level is gonna increase as fast as possible !! PLEASE DO SO

  585. Troy Suzann says:

    Amna, I agree you need to talk to your doctor about increasing Vit D if your levels are not going up , but you also need to push to find out why they are not get to healthy levels! Especially if you are seeing low levels of other necessary vitamins, minerals or hormones.

  586. KATE – No I don’t have the pains in my arms. Just headaches from the pills for the pains in the shin and ankle! What a joke.

    I am having a nuclear bone scan on Monday. That should answer the “what’s up with these leg pains?” for once and for all. I’ll post results, when known.

    I found a source for OTC D3 50,000 IU so I am alternating it with D2 weekly with my doctor’s approval. He says there is no support for the idea that palpitations are caused from D2. I searched the net and seems he is correct.

    There are definite dangers from TOO MUCH Vitamin D and with not balancing it with proper calcium and magnesium. Check good medical sites on the internet.

    Best wishes to all. Sunny

  587. Richard: Probiotics are not only helpful in digesting the food, they are also very much involved in the immune system. The latest news is that appendix is not a useless thing, acidophillus (and may be other strains) are produced there.

    Julie: Vitamin D is fat soluble vitamin. That means our system must have fat to be able to abosrb the vitamins we take. May be you should eat more oily fish or eat a little fatty food (Also salad with olive oil). Also take multivitamis. Most imporantly consult some other doctors to find out if something else is also a factor.

    ALL: Today I had problem loading this blog. I was afraid. If ever this blog goes may be people may email me at insys11@hotmail.com. We may work out another blog if that ever happens.

  588. So I got some probiotics yesterday and took my first one last night, as well as my first vitamin D dose. Hopefully everything will work out just fine! I had a little bit of an upset stomach, but I wasn’t sure if that was from the pills or from what I had eaten last night. I’ll keep you guys posted!

  589. Jenny:
    A lot of what you have mentioned sounds like my symptoms. Try a few colonics if you can – my intestinal problems pretty much disappeared after I did a few. They are a bit expensive – I think the three that I did ended up costing me about $250, but the results were great, and I learned a lot from the counseling I received at the center (they explain dietary changes, etc.) I got rid of a lot of yeast that was flourishing in my colon. The probiotics should do the same thing, probably just take a bit longer. Try to avoid sugar and carbs as much as you can – that feeds the yeast. The over the counter vitamin d seems to bother me more than prescription, so keep that in mind. It makes me feel a bit sick – I feel like I have a slight fever, and just feel like I’m coming down with something. I only seem to have this reaction when I take it later in the day, with dinner.

    Good luck! Enjoy the weekend!

  590. i had read or heard on the news about the appendix just lately too. i thought that was facinating. they think the appendix is where the good bacteria is stored and when your system needs it it comes out of the appendix. i’ll have to read more about it. i’d like to know what kind of research they’ve been doing that led to that conclusion.
    it seems that a lot of us aren’t storing enough good bacteria though. hmmmmmm. or we don’t have appendixes. i know i still have mine.
    JENNY: that’s good that you got the probiotic and started your vitamin d. keep us posted on how you’re feeling.
    i was thinking about what matt said about needing oil and fat in our diet to be able to absorb the vitamin d. that is a good comment. maybe that’s why so many people are low. everyone is trying to avoid too much fat. i take fish oil capsules and flax seed oil capsules to help lower my cholesterol. maybe if i make sure i take my vitamin d at the same time it will help me absorb it. just a thought.

  591. Jen: I will definitely look into the colonics, since everyone I’ve talked to says that a good cleansing made them feel a lot better. I took the vitamin d again today, and my stomach felt fine, so hopefully it was a one time thing. I’m going to try to take it with food from now on since it helps. I will definitely keep you all posted!

  592. by the time you all noticed by he deficiency, did anyone of u expierienced urine infection? or its hard to urinate or something..

  593. Amna: I read in one of the post on internet, where this man was saying that he used to have the runs to the bathroom to urinate which got much better after taking Vitamin D. As for Urine infection, since Vitamin D affects immune system, it is possible that urinary tract infections may be more in VDD people. Another thing I can think of is that lack of Vit. D reduces the body’s ability to aborb calcium effectively. Thus there will be more calcium in the body than the body needs. It may end up in the uriniary system and cause stones that may cause urinary tract infection and Difficulty Urinating. Anyone, specially men, who have these symptoms should consult a urologist urgently.

  594. I have been feeling so tired latley…. Dr. checked my iron levels and said it was just menopause, and sent me home with a perscription for depression…. (I didn’t fill it because I was not feeling depressed…)
    When the pain in my legs and overall heavyness feeling and the burning sensation in my muscles became overwhelming I went back and Dr. took 8 viles of blood. The nurse called and said all was normal and I was deff. in menopause. I asked for the numbers and it turned out my D is 16. He wasn’t even going to mention it. He hasn’t perscribed anything… but when I asked he said drink milk, eat tuna.
    I find it amazing that the majority of you have stomach issues. I have had to ignore “discomfort” for years, because I have had upper and lower oscopys and found nouthing.
    From what I am hearing from all of you is that there is a clear corolation with the condition of the stomach… Could it be that the Yeast / IBS or what ever may be ailing your stomach is not allowing us to absorb the nutients. So many of you are not responding to the treatment… could it be because you are not retaining the nutrients in the pills?
    I am going to discuss all of this with my Dr. and in the mean time… I will eat yogurt… Drink milk… get sun 3 days a week for 15 min. and tell everyone I know about this silent epidemic. Thank you for sharing…
    Patty

  595. Troy Suzann says:

    Patty- What type of doctor do you go to?

  596. Troy Suzann says:

    Amna- no painful urination but frequent… up three or four times at night.

  597. Patty: I can’t believe your dr wasn’t going to mention a vit d level of 16. I was at 19 at the Cleveland Clinic, and the dr immediately called me. My dr told me that at the latest medical conference that she attended, they stated that everyone should have a level of at least 100. She has me on 50,000 IU each week – you would have to drink hundreds of glasses of milk to get that much! This deficiency made me so tired that I thought I was dying. I slept all of the time.

    I agree with you about the yeast connection. I was waking up at 3 am, craving sugar. When I told my neurologist this, she said, “go ahead and eat sugar – you can afford to!” At that point, I was down to 110 lbs due to being so ill and medication side effects (from 136 lbs). Of course, this was probably a signal that I had a horrible yeast problem. When I did my first colonic, hardly any waste was released – it was tons of white flakes that looked like fish food – yeast, yeast, yeast.

    If any of you are interested – try Agricept that you can get at a health food store. A few drops in some water will kill yeast and other bad stuff! :)

    Take care all!

  598. Patty
    O.o he has to atleast give u some vitamin d pills i mean its not something u can ignore it…tuna and milk are not gonna increase it that much!

  599. Hi,
    My name is Margot, and about 6 month’s ago my GP diagnosed me with severe Vit. D deficiency. For several years until that point I had been diagnosed with everything under the sun..lol, including Fibromyalgia, IBS, Major Depressive Disorder, ADHD, PTSD, Chronic Pain, and most recently they are looking at ME(Myalgic Encephalitis) or MS. As well, in the last couple months they discovered a 7cm cyst on my right ovary that had to be removed along with part of my ovary, and carpal tunnel in both hands with both thumbs having severe nerve loss. I am wondering if all these diagnosises have something in common…Vitamin D deficiency. It just dosn’t seem a coincidence that my lower back pain, ovarian cyst, carpal tunnel, and more are all occuring seperate from each other. I am wondering if there is a common thread or link, and if it is not Vitamin D deficiency, then what could it be. Up until the last 6 months, specialists and physicians have chalked me up as psycho-somatic…help please. Knowledge is power for me.
    Sincerely,
    Margot D

  600. PS: They also discovered that my thyroid, iron, and Vitamin B levels are all normal, except certain hormones, I can’t remember if it was estrogen or progesteron, are unusually high. I also have never had a so-called ‘normal’ menstruation. I have had to endure long and heavy menses…sometimes it will last 7-10 day’s. My doctor has also taken me off of all birth control and am hoping I can get the Mirena IUD covered by canadian medical. But now I am enduring severe acne!!! geez, I wish I had Dr. House…lol
    Margot

  601. hi MARGOT D,

    it seems that all the things you reported as symptoms have been reported by most of the other people who have posted on this site. a lot of those things have been written about in vitamin d research articles too, so i do think a lot of it is connected to being deficient.
    are you on a good dose of vitamin d3 (make sure it’s d3) now? it takes a while for some of these things to start responding once you’re getting the vitamin d so you should start as soon as you can.
    check into finding out if your intestines are in good health too. because that seems to effect how we absorb the vitamin d. if you have a proliferation of bad bacteria or if your pancreas isn’t producing enough enzymes for digestion it can do all kinds of weird things to your health.
    have you read back over some of the postings here? i hate to keep going over the same stuff, but it would be good if you could start eating yogurt and taking a probiotic to help the good bacteria along.
    let us know how you’re doing.

  602. Troy Suzann says:

    Margot– As Kat said, everyone on this site has had some of the similar issue/diagnosis as you. You seem pretty close to the track I have been down as well. I have learned to take things one step at a time and keep on pushing for answers. I keep coming back to this site to see what others have found out or what others are going through for treatment so I can if necessary push my specialist to look at that too. Thankfully it seems my endo is pretty much on top of my care. Welcome to the site– we all know your frustrations :) if that is any help.

  603. Hi Marie

    I started of by taking 50000iu of calciferol every week for 2 months then its now changed to 100000iu every month. The B-Cal-D is 500mg every day(it has 400iu of vit d in it).
    I feel so ill. I cannot handle the gas movement in my tummy especially on the left hand side. My legs and hands are sore.
    I called my GP yesterday telling him that my pressure is still on the low side and i am still having the same symptoms. he never mensioned anything about doing another test to check my levels again. All he said was that i need to see a psychaitrist, as he thinks that i am suffering from depression. one of the symptoms of Vit d, i know is depression. Who wont g into depression considering all that we are going thru with the lack of these vitimans. I cannot handle this anymore. Another dr is investigating the Vit d for me so i will get a reply from him today. will let you guys know outcome.

    Does anyone of you feel like a ice feeling in the head or sometimes anywhere in your body. i feel this all the time. Does your head feel so heavy that it sometimes just fall back cos you become so weak.

    Help please. GP’s are useless.

  604. hi VALARIE,

    you have said a couple times that you are taking calciferol. can you check your bottles and tell me if it is ergocalciferol (vitamin d2), or cholecalciferol (vitamin d3)? or i suppose it could be a combination of the 2. either way it should say what it is.
    from everything i’ve read and from personal experience i think the results are better with the d3.
    the b-cal-d supplement you take is probably d3. you should make sure you’re getting other minerals too, like magnesium and potassium. if you don’t have enough of those minerals that could be why you have the muscle weakness you talked about.
    you mentioned the gas in your intestines bothering you. i think we talked about that earlier. be sure you’re eating yogurt and taking a probiotic to get the good bacteria growing. that will take care of the gas. the gas is caused by bad bacteria feasting on food (especially sugars) in your intestines.

  605. I have seen that most of us deal with fatigue and depression with what we are going through. Vitamin D has been found to be a major functionary in our system – It is not just a vitamin, it is a hormone. We talked about B12, thyroid, and good bacteria. One more factor in fatigue and depression is also overlooked by GPs (and most other physicians) is the Iron factor. Body stores iron in the body and if there is an overload it causes many problems (including fatigue). This condition is called Hemochromatosis. Just look up on the internet. This may be one more test that people with idiopathic fatigue and tiredness can look in to.

  606. so i guess its normal for vitamin d to take long, months to recover? lot of people here talk about months and still havent heard of anybody recovering the 100%

    my 5th week no change between 4th week and 5th week i feel 40% better ..dont know if i will ever get any better close to 100% which i hope i do :)
    waiting for 6th week that some people mention after the 6th week vitamin d start circulating more active? i just hope so if not i guess i have to find out what else its causing this problem

    what a problem ..i think this disease should be consider more by doctors..looks llike when you tell someone i am low on vitamins anybody will be just take the pills and eat more healthy thas it not big deal ..man they dont how bad can affect your life this thing?

  607. Valarie….”ditto” what Kat said…definately look at the calciferol bottle. Is it D3 or D2?

    Matt…also if we have low iron storage, we can have fatigue as well. I think you test your ferritin to check for iron storage.

    It’s interesting info regarding the appendix and being the manufacture site of good bacteria…I’ll have to read up on that.

    Margot…in the last 3 years, I’ve learned that most docs are not up to speed on hormones and vitamin deficiencies. I think alot of people are misdiagnosed with so many things because of the medical establishments tunnel vision in certain areas. I’m curious what thyroid tests were done on you and what the results were…as well as the normal reference ranges. If you have those numbers,post them here. I think everyone should have a baseline hormone and vitamin blood test done to see how their adrenals, thyroid, sex hormones are doing….as well as vitamin levels. I hope your new doc who is researching the D will retest you with your D.

    Richard….keep the faith…you’ve probably had a D deficiency for a while and any hormone supplementation will take a while to show improvements. I do consider vit D a hormone. Hold on to that 40% improvement and give your body time to get it’s vit D level where it needs to be. Be easy on your body…it’s doing what it’s supposed to..if you’re providing it with what it needs to heal.

    Amna…I’m like Troy, I get up 2-4 times each night to urinate. Very annoying! I don’t have bladder infections or pain though.

    Patty…I want to smack the cr*p out of your doc for being ignorant. With all due respect….he seems to be one of those docs with tunnel vision. If he doesn’t feel a level of 16 is worthy of supplementation, then he is indeed uninformed. You need to supplement with D3…just read some of these posts and the articles at the beginning.

    Kat…your advice to get on probiotics is right on…digestive enzymes are helpful as well. I even have my dog on probiotics, just for his own health and immunity.

    I’m at 4 weeks on D3 tomorrow…I do feel improvements. I read somewhere that vit D is a super immune booster…so if we are low and start supplementing, we can feel a die-off effect from things that are being killed off in our bodies. Things like fungi, yeast, bacteria, viruses have been allowed to thrive in our bodies because our immune systems have been compromised by low D. Symptoms of die off can be diarreah, gas, acne, nausea, fatigue, bad breath, nasal drainage and etc. You can google die-off effect if you want to read more.

    I do think this is a slow healing…so patience is a good thing.

  608. My son was basically bed ridden for a year (diagnosed with a sleep disorder-kleine levin syndrome), doctor after doctor, diagnosis after diagnosis, finally went to Mayo, was diagnosed with a very severe Vit D diff, put on 5000 iu daily for 12 weeks, new test showed normal levels. After about week 3, he was eating, up more, and by week 12 a different kid, after being so sick and homebound for a year, he is back at school, and normal. It truly is amazing what can happen when you have a severe difficiency, my son is living proof that it can be turned around with a mult vitamin and daily supplements (the sleep disorder has cleared up, or never exhisted). I will say he also goes to a tanning bed 2-3 times a week which has made a difference also.

  609. JP
    aww insomnia is caused by vitamin d defeciency too
    make sure u let him in the sun =”)

    did he get heart palpitation?

  610. I finally saw the new female Endo. My Vitmain D levels did not come back in time for this appt. She wants it at 40 and no lower. If it is lower than I need to be back on Vitamin D 50,000 units BUT, only once a week so Toxcicity does not set in. Remember the other guy had me on 50,000 units of D daily for 3 weeks. She said NO, I do not operate that way. Yes, the parathyroid elargement is there but she said they will not do a thing about this unless teh calcium levels get elevated. MY TSH is down in the 5.5 range and she wants this down to the 1-2 range.

  611. Hi all,

    Interesting, did anyone find their Vit D levels increase with increasing their fat intakes?

    I have found some interesting, yet controversial information on the Weston A Price website, particularly on fat intake and the importance of good Vit A levels effecting Vit D levels. Has anyone had their Vit A levels checked along side with their D levels?

  612. Lisa rose
    where are the parathyroid glands that are enlarged? I have small bumps just above the collar bones on both sides. bumps about the size of a bean. that area is swollen also, which is what took me to the internal medicine doc to start with and eventually found the vitamin d deficiency.
    anyone have any thing like that?

    I think we all have a good variety of similar symptoms. I read that VDD wreaks havoc on the body.

  613. Oh My God! Nellie, are you telling us we need to check our level of vitamin A also? I already had low B 12 then Vitamin D now I have to worry about A?

  614. Betty…I have swelling above my collar bones as well. I’ve read in Mark Starr’s book that it’s common in hypothyroidism to have fatty pads above the collar bone. Mine aren’t bean sized…just kinda fills in that area.

  615. Betty, they already checked the Vitamin A (carotene) back 6 months ago. I was OK. Normally, you cannot feel the parathyroid enlargement but you can at times have problems with swallowing just like enlarged thyroids. The Parathyroids are just below the thyroid gland. There are two on the right side and two on the left side. The Parathyroid enlargement, I have is on the lower right side and this is also the same side that i have two thyroid adenoma’s. There is a test called the 99 T sestamibi scan that will definately show the parathyroids. It is a Nuclear scan. I have had it twice. BUT, this needs to be done at a good center with a good radiologist reading this. I hope to know the D levels by tomorrow. I hope it has climbed to 40 but I really doubt it. More like 25 if I had to guess.

  616. JP….I’m so glad for you and your son that you’ve found out what was wrong with him and that he’s feeling better. It’s good that you kept looking!

  617. well my dad just found out he was low on d . his level was 6 .. :| like mine. but with no symptoms at all i guess its because he removed his parathyroid and taking meds instead. but what he relised a severe skin rash.. does it cause this ?!! .. cause when we ask the doctors they can simply tell u NO :|

  618. Troy Suzann says:

    Amna I mentioned this in an earier post about rashes– Dermatitis Herpetiformis which is related to Celiac Disease (wheat allergies) which causes an itchy red rash with little puss filled bumps. Celiac Disease can cause vitamin deficiencies. http://www.csaceliacs.org/dh_defined.php

  619. oh right, well imma tell my dad bout celiac disease !! is it like when we eat food that has wheat we get irritated easily from it ? like allergie to wheats? Loool sorry i might seem so cool and not serious but my age keeps me from doing so :P as u know im 16 haaha :P

  620. I would like to know does anyone experiencing muscle twitching and tingling related to vit. d deficiency?
    I have vit. d deficiency but the calcium level is within the normal range , I did all the blood test that came out normal..
    I think if you have vit d deficiency, your calcium level should be low too. Any idea???

  621. Troy Suzann says:

    Amna– You seem very intelligent for 16 and very kind :).

  622. carol my calcium was normail too.is very strange they told me everything looks normal except of vitamind at level 10 severe low

  623. Richard,
    What sypmtoms do you have?
    My muscles are aching and I have muscle twitching and tingling on my legs and arms. That’s wired!
    I keep thinking that even my calcium is normal, it should affect the calcium anyway. Vit. d helps to absorb calcium, I believe it should be related.
    Do you guys think so?

  624. Carol, and Richard. my calcium level is normal but my level for D is 11, so I don’t know that they go low together. I have twitching of my eyebrow, so weird! but sometimes it can be my lip. I haven’t had tingling, but I have sometimes had numb feeling of my head on one, side very odd.

    Marie, I do have the fatty pads above the collar bones like you, but I can feel the swollen glands that are bean size in that fatty areas. My doctor felt them and just said “we’ll keep an eye on that”. I never was told that this swelling of that area had to do with hypothyroidism. I will check with my doc on that.

    Marie, tell me about this book by Mark Starr. thanks
    You guys are all great and in my prayers.

  625. My serun calcium that is seen on a Basic Metabolic test is normal but my Ionized Calcium is low. My PTH is high and Vitamin D low. I should know my D levels tomorrow.