Patient Comments: Hyperparathyroidism - Share Your Experience

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Please share your experience with hyperparathyroidism. Submit Your Comment

Comment from: Kitkat, 65-74 Female (Patient) Published: October 02

What a misunderstood thing this disease has become. It is called hyperparathyroidism, and I have had it for 4 years. Stop confusing it with any thyroid problems, they are totally different. Several years ago I really noticed the fatigue even when I first got up. I had all the tests. The main ones needed are calcium in your blood and PTH hormone levels.

Comment from: Soapmom, 55-64 Female (Patient) Published: August 10

I have had a high calcium for almost four years and all endocrinologists want to do is follow it. It's never gone down and all I want to do is find an endocrinologist who will refer me for surgery. I have had the heart, bone, kidney and every symptom that goes with hyperparathyroidism, even high urine calcium and I can't get them to do anything but dismiss the labs as in error and want costly repeats. I'm 55 years old, single and I do not have the time, money or energy to keep playing their games. I'm going to die.

Comment from: Juli, 55-64 Female (Patient) Published: August 05

I have had secondary hyperparathyroidism now for about two years. I am on hemodialysis for kidney failure as well. My hyperparathyroidism symptoms include depression, terrible joint pain, especially in my back and ankles, hair loss, confusion, and sleep problems. They tried me on Sensipar but to no avail, this condition, I was told, needs surgery to remove the affected glands. So, I am now scheduled to have all four glands removed, but pieces of the best will be reinserted into my neck. The surgeon is an ENT guy. I will hopefully feel better as they claim.

Comment from: barcula, 55-64 Female (Patient) Published: February 03

I have been diagnosed with hyperparathyroidism and have an adenoma. I have had calcium levels go up and down, hair loss, depression and feel like I am running at about 50 percent of normal. Actually I feel sick most of the day. Hopefully I will have the adenoma removed within the month and start feeling normal again.

Comment from: GrannyKathy, 65-74 Female (Patient) Published: October 27

I had a parathyroidectomy in 2005 after experiencing a lot of fatigue and muscle pain. My calcium level was somewhat elevated but my doctor didn't think it was anything to worry about. My sister, who is a registered nurse and was going through tests for hyperthyroidism herself, thought differently and urged me to see an endocrinologist. I felt wonderfully better afterwards so don't ignore it. Our father had had the disease too so we assumed it was familial. Unfortunately we did not realize that our mom also had the problem until she had very advanced osteoporosis. However, now I am wondering if I might have hyperparathyroidism again. I had a very large kidney stone removed in February 2013, then in February 2014 my kidneys suddenly stopped working and I had to go on dialysis. Now I am stabilized and doing very well on peritoneal dialysis but my calcium levels are above range most of the time. The PTH levels seem to be okay but I am taking supplemental vitamin D per my nephrologist's order (I don't know what the actual level is as they only do that test about once a year.) My main reason for questioning this, besides the high calcium levels, is that since a month or so before my ESRD (end stage renal disease) was diagnosed I began suffering severe leg cramps at night for which they don't seem to be able to find a cause or cure. These are not just the regular charley horses most of us older folk experience but cramps that involve my whole lower leg and foot and sometimes my thigh too. I wonder if leg cramps could be a symptom of hyperparathyroidism.

Comment from: Wendyt, 45-54 Female (Patient) Published: September 26

I have had 3.5 out of the 4 parathyroid glands and part of thyroid removed approximately 5 years ago. Hyperparathyroidism caused so many health issues which have been corrected with surgery. Good luck to all.

Comment from: boneiggy, 55-64 Female (Patient) Published: March 04

I am 55 years old. I was referred to an endocrinologist by my primary doctor because my bone density last year was quite indicative of osteoporosis. My visit was delayed by spine surgery last year, so fast forward to now. I saw her last week, and she did various blood tests, calcium, parathyroid hormone, kidney tests, vitamin D, and a few more. My PTH came back high at 92. Calcium was high normal at 9.8, and vitamin D is 40; and I have been taking 5000 units of Vitamin D for the last few years, because my levels were something like 12 or 13. I have searched the web for answers as to why my PTH is high, vitamin D is normal (induced) and my calcium seems ok too. I do not go back to see my endocrinologist until the end of the month. (My lab results were posted on their web portal). I am wondering if I should continue to take the vitamin D. I wonder what my chances are of actually having hyperparathyroidism. I am quite confused.

Comment from: BonBons, 65-74 Female (Patient) Published: February 26

I had no definite symptoms of hyperparathyroidism other than a decline in bone density and blood tests (to monitor a prior cancer) that indicated high blood calcium. My endocrinologist monitored the blood calcium for almost a year and conferred with my oncologist since blood CA could have also been a flag for possibly returning lymphoma. There"s a great reason to have all your physicians in the same hospital. Once hyperparathyroidism was confirmed I did the pre operation testing, showed up for surgery, had the 2 hour surgery and emerged from the operation room with 2.5 fewer parathyroid, the rebel ones. During surgery wonderful devices monitor how the CA levels are being controlled. I was placed in a post operation room to be monitored carefully until the next morning. My symptoms prior to surgery were nonexistent and I presume that"s why I have noticed no changes post operation. My neck muscles were sore for a day after surgery and that was that! Marvelous! Subsequent tests confirm that I am A-Okay! I should now be successfully building up my bone density again with my usual balanced diet and my exercise including weights.

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Comment from: Teresa, 45-54 Female (Patient) Published: March 19

I have been ill for years with no medical reason other than being diagnosed with Sjogrens about seven years ago. I began missing work due to severe pain all over my body. Then in December of 2011 while at work I experienced a severe migraine with vertigo, followed by two weeks of vomiting. I have had all kinds of stomach problems, diarrhea, bloating, constipation and even have been hospitalized for these problems. On my own, I discovered that I have hyperparathyroid disease. The best advice I can give you is always get a copy of lab, ultrasounds, and all tests sent to your home. You have the right to ask for all medical records. I also followed up with getting my calcium levels checked and asked my doctors lots of questions. Luckily, I did research on my own, found a clinic that specializes in parathyroid disease, and had surgery two weeks ago. I already feel like I have more energy and my joint pain has decreased a lot. Don't give up--there is hope.

Comment from: Ashley T, 25-34 Female (Patient) Published: June 07

I've had Hyperparathyroid Disease since I was 18 and was only diagnosed 5 years ago when I was 21. I had surgery to have one removed because it was overproducing 8xs more than it should. After surgery I felt much better but lately have been feeling terrible which may very well be the disease again. Once you have the disease you're much more likely to have reoccurrences which sucks.

Comment from: flagrl, 55-64 Female (Patient) Published: May 24

I always felt tired and like each of my legs weighed 100 pounds. When I had routine blood work done it showed abnormal calcium levels and my vitamin D level was almost nonexistent. I'm still struggling with the disease, as my doc has decided to try to control it without surgery by supplementing large doses of vitamin D and a small supplement of calcium daily. I am now dealing with a side effect of the disease which is pseudogout. Not very pleasant at all.

Comment from: iamthezookeeper, 55-64 Female (Patient) Published: May 02

My doctor just called and said my calcium was elevated and wants to check it again. I am scheduled for a cardiac workup due to some chest pain. I have been very low in vitamin D for years. I've had osteoporosis in my hips and lower back for years, possibly due to many years of taking prednisone. I finally went in to my doctor and said: "Something is wrong. I can't stop sleeping. I have gained 25 pounds. I feel like crap all the time, am depressed, my legs hurt when I sleep, I'm having headaches, body aches, and I can't remember anything." I have a feeling I have hyperparathyroidism, from what I have read. We will see what she says next week. Something has to be done soon, as I feel like I am sick all the time but don't know why. I am so glad I found this page because it explains so much. If she says my levels are elevated, though not high enough, I'm wondering if I should just look for a second opinion. How long does it take to diagnose this? I have been sick for years, and they have said it is fibromyalgia/Churg- Strauss/GERD/osteoporosis.

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Hyperthyroidism Symptoms and Treatment See Slideshow

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