Again I want to apologize to everyone that my posts seem to be so far apart. I just looked today and saw that it was four days since I last posted. I can’t keep track of the days at all, as everything is just running together into one big blur. Today marks the 14th day since this latest nightmare began and I am hoping I can go into a little more detail before I have to stop posting. The last time I posted, Part 1: Non parathyroid Hypercalcemia, I discussed that I had been to see my doctor because initially I thought my symptoms were similiar to that of a bad CFS flare. But I knew that something wasn’t right. The doctor sent me for a bunch of blood work.
By Wednesday evening, I was having even more severe symptoms: kidney pain, flank pain, severe headaches, bone pain, bad nausea, overall terrible sick feeling, and severe, unbelievably unreal exhaustion, I haven’t been able to eat, or sleep, and very frequent urination. The urination did not remind of of Interstitial Cystitis though because I have not had the pressure and fullness in my lower abdomen or pelvic area. I have had confusion and disorientation beyond anything I’ve ever had with CFS. The exhaustion that I am experiencing is also different from that of a CFS flare.
Finally, after 5 days, I heard from the doctor’s office and they told me that my pituitary and thyroid glands were not working properly and that I would need to see whatever endocrinologist I was seeing who currently had me on my thyroid medication. I told the nurse that I was put on the T3 thyroid medication back in 2005 when I was going to the Fibromyalgia & Fatigue Centers in Philadelphia and I was no longer a patient there due to out-of-network co-pays and such and that I would need to have an endocrinologist referral. So they told me that they would get me set up to see one.
I always get copies of my lab results ever since I had to go through the disability fiasco so I made sure I received copies of these latest results also. As I was looking through the test results, I came across the thyroid and parathyroid tests and it showed that I had the non parathyroid hypercalcemia. Naturally, I started doing some research, consulted a great online freind who is an RN and has been a wonderful help to me (thanks Amy!), and the symptoms are dead on. I thought to myself that this won’t be a problem – I’ll get my referral, the doctor will see how sick I am, will see how my symptoms match up and I’ll be on my way to recovery in no time. But as usual, the story of my life, it is not working out like that. The past two weeks has just been a total reminder of what it was like 20 years ago trying to get help and trying to get someone to take me seriously regarding my CFS.
Around the 7th day of being sick, I needed to get my pain medication refills and no one was home because my husband was out of town so I had to go and get them filled. I almost passed out twice at the store. Also within this 7 days I had lost 7 pounds. By the 9th day, I was still so sick, no let up in symptoms and now my heart was starting to beat abnormally. It would beat terribly fast and then I would have these terrible pains. I ended up in the ER because I was getting really scared and I couldn’t stand being this sick anymore. When I went into the ER I told them I was there because I had been sick for the past 9 days and I gave them ALL of my symptoms but no one would listen to me. Obviously, and I can understand why, they were most worried about the abnormal heart rhythm and chest pain I was experiencing but they weren’t addressing anything else. I kept trying to tell them that all they needed to do was look at the blood work that I had had done just the week before and it would tell them what they needed to know but no one would listen to me. I laid on the ER bed crying, trying to get the doctor and the nurse to hear me out but all they would say is that I would have to wait until my referral came through. Why couldn’t they see that I couldn’t wait? I am VERY sick!
When you have been to the ER they want you to follow up with your family doctor within the next day or two so I was back at the doctor the next day – which would be day 10. I rehashed how my symptoms had progressed since I was there the week before, how no one at the ER would listen to me, how I believe that the immediate problem is this non parathyroid hypercalcemia and guess what the doctor told me? “I think the symptoms you are experiencing are coming from a UTI. Let’s check your urine.” I’ve had many UTIs over the years. Every single UTI I have ever had has been stinging, burning and completely miserable when I urinate. I told her I had none of this. She checked my urine and said she found leukocytes so she put me on Cipro. Guess what? I don’t feel a damn bit better since being on the Cipro and typically if I have some type of infection I will start to feel better within 24 hours of taking an antibiotic. I told her again that I did some research and that I felt that the problem was my parathyroid and she said that the endocrinologist will be able to help with that if it is the problem. At that point though I still didn’t have my referral. I left feeling defeated again.
By day 11 I’m ready to scream, beg, hit somebody, do whatever it takes to get someone to help me NOW with this. After being sick this many days, I am at the end of my rope. I can’t drive, I can’t take care of my family, I can’t do anything and by God someone is going to help me. I am going to make someone listen to me and they are going to put me in the hospital or do whatever has to be done because I can’t wait 2 – 3 months for a referral appointment. I won’t make it that long. I know it. So I go and call the doctor and ask if I can speak with my doctor or her nurse regarding my recent health problem and they took my name & number. In the meantime, they call me back and tell me that I have my appointment with the endocrinologist for this Tuesday at 9:15 a.m. At the time of the call, I only had 5 days and I was thrilled. I couldn’t believe I was getting in so quickly. So I am guessing that the endocrinologist’s office rushed me in because it’s not normal to get in so fast. Now I only have 2 days to go and I am hoping they can do something to give me some immediate relief. I hate the thought of a hospital stay but I feel so bad I would welcome one right now.
My first step is getting to my appointment on Tuesday, then seeing what tests the doctor wants done, and what the cause of the excess calcium is. And then we will know where to go from there.
As I had mentioned in Part 1, non parathyroid hypercalcemia is when there is excess calcium levels in the blood.
There can be many causes of hypercalcemia. The most common cause, however, is an overproduction of the parathyroid hormone and this is known as hyperparathyroidism. This tends to be more common in women and occurs in approx. 25 out of every 100,000 people. In hyperparathyroidism, all four of the parathyroid glands can be producing too much hormone (PTH) or just one gland which is usually the result of a benign tumor or parathyroid adenoma.
There are other medical conditions that can cause hypercalcemia: some may not be serious, but some may vary in symptoms:
- hypocalciuric hypercalcemia
- certain types of cancer – in particular breast cancer, multiple myeloma, lung cancer
- excessive vitamin D levels
- immobilization over a long period of time
- kidney failure
- inherited metabolic or kidney conditions
- hyperthyroidism or excessive thyroid hormone intake
- using thiazide diuretics
I don’t know what made me come across your blog. I am one of the old posters from wahm and I started researching about your pain. If you’re into homeremedies, try http://www.earthclinic.com. Also I found a post on another site that might have helped them http://www.enotalone.com/forum/showthread.php?t=129932
Hope you feel better soon. God bless
Sounds EXACTLY as my story like I’m almost reading my own blog! My calcium has been elevated off and on over the years. I am almost 100% positive I have a parathyroid tumor. I’m planning to submit paperwork to the Norman Parathyroid Center in the Tampa, Florida area. These surgeons are THE experts, and I don’t plan to have anyone else around here (I live in Dallas, TX) slit my throat but THEM! If you have/had hyperparathyroidism, I hope you were able to have the tumor(s) removed so you an get back on track with your life. It’s a HORRIBLE hell, I can vouch for that!
Hypercalcemia, or higher than normal level of calcium in your blood, is a fairly common finding. Blood tests, such as those drawn for an annual physical exam, today routinely check calcium levels. This allows physicians to detect abnormally high calcium levels early.
Calcium is an important mineral in our bodies throughout our lifetime for bone growth, bone strength, maintaining proper hormone levels and optimal functioning of nerves, muscles and the brain. The calcium level is usually very carefully controlled by the body. However, certain medications and conditions can result in high blood calcium levels.
In the past, complications such as bone loss and fractures, kidney stones, kidney failure, hypertension and bradycardia (slowed heart rate), were commonly found as a result of longstanding untreated high calcium levels. These are now rarely seen thanks to blood tests that lead to preventive treatment.
Hypercalcemia can be caused by more than 25 separate diseases, several medications and even dehydration. Primary hyperparathyroidism and various kinds of cancers account for the greatest percentage of all patients with hypercalcemia.
In primary hyperparathyroidism, one or more of the four parathyroid glands, located behind the thyroid gland in your neck, produce too much parathyroid hormone. Normally, the parathyroid glands work with the kidneys, skeleton and intestines to carefully regulate the level of blood calcium. But sometimes a parathyroid gland becomes overactive, resulting in excess parathyroid hormone being released and an elevated blood calcium level.
Common medications such as hydrochlorothiazide and other thiazide diuretics (prescribed for hypertension and edema), lithium, and excessive intake of vitamin D, vitamin A or calcium can result in hypercalcemia. Taking too much calcium carbonate in the form of Tums® or Rolaids® is actually one of the more common causes of hypercalcemia.
Although having symptoms of hypercalcemia is uncommon, symptoms can include:
More frequent urination and thirst
Fatigue, bone pain, headaches
Nausea, vomiting, constipation, decrease in appetite
Lethargy, depression, memory loss or irritability
Muscle aches, weakness, cramping and/or twitches
Your doctor will order a blood test to determine if you have hypercalcemia. If the calcium is elevated, your physician will often review your medications and medical history as well as conduct a physical exam. If there is no obvious cause, your physician may ask you to see an endocrinologist, who will give you further evaluation and testing.
Treatment of hypercalcemia depends on what is causing the disorder and how severe it is. Often the doctor may tell you calcium levels can be lowered if you:
Drink more water
Switch to a non-thiazide diuretic or blood pressure medicine
Stop calcium-rich antacid tablets
Stop calcium supplements
If the hypercalcemia is due to an overactive parathyroid gland, your doctor can consider several options:
Close monitoring of the calcium level
Referral to surgery to have the overactive gland(s) removed
Starting a medication such as cinacalcet (Sensipar®), which is used to manage hypercalcemia
Using bisphosphonates, osteoporosis drugs given intravenously (with a needle through the veins) that treat hypercalcemia due to cancer
Using denosumab (XGEVA®), another bone-strengthening drug for patients with cancer-caused hypercalcemia who don’t respond to bisphosphonates