Patient Comments: Hyperparathyroidism - Share Your Experience

Please share your experience with hyperparathyroidism.

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.

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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.

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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.

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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: 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.

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Hyperparathyroidism - Symptoms Question: What were the symptoms you experienced with your hyperparathyroidism?
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