Osteoporosis and Hyperparathyroid disease - Endocrine Disorders Message Board

linda.b · 11-23-2001, 12:32 PM

Osteoporosis and hyperparathyroid disease
Does anybody out there suffer from osteoporosis caused by hyperparathyroid (NOT thyroid!!) disease? If so, I would love to hear from you.
I am 55 years old . About 5 years ago, I started feeling tired, lacked energy and started to find life a real struggle. My doctor dismissed this as a ‘time of your life problem’ and offered very little help. My health deteriorated over several years and further severe symptoms appeared (anxiety, muscle weakness, joint pain, bone pain, stiffness, etc.). Eventually, 1½ years ago, I was diagnosed as having primary hyperparathyroid disease (pHPT). One of the four, tiny parathyroid glands in my neck had become overactive. By then, my quality of life was very poor. I could only move with difficulty and pain, I couldn’t sleep, I had psychological problems……..Then I found that I had severe osteoporosis. All these symptoms were caused by pHPT.
About a year ago, I had a successful operation to remove the overactive gland. My symptoms slowly started to improve. But, 6 months after the operation, my consultant put me on Fosamax to increase my bone density. This was a disaster for me because the Fosamax reversed the improvement in my symptoms. After 6 months on Fosamax, I was almost back to square one with considerable pain and stiffness. 3 months ago, I stopped the Fosamax. I am once again improving except that I have recently had an eye problem. Fortunately, I found the messages about Fosamax and eye problems on the old HealthBoard osteoporosis message board. These were very helpful and informative for me.
So, is anybody out there with similar problems to mine??

shadow50 · 03-26-2005, 10:36 AM

My problem is I developed hyperparathyroidism and after many months of being sick and being told it was just due to depression I literally begged to have have some lab work done because I new it was different than past depressive symtoms. I was diagnosised with hyperpathyroidism and had the surgery. However, after the surgery my parathyroid hormone level never returned to normal and started going back up. I think the last was 158 with 65 being high normal. However, my calcium levels returned to normal. I still don't feel well, but was reminded rather rudely that I had mood disorder before the endocrine problem and was referred back to my psychiatrist. I don't know if all of this is in my head or what, but I still have the left hip pain, nausea ,sleep disturbances, mood irritability and try to pretend I'm fine. It may all be stress related who knows. I was just wondering if anyone else out there has experienced this type of problem after their parathyroidectomy. I just want to feel well again and am concerned that the elevated PTH level could be causing stress on my body. I made an appointment to see a rheumatologist, but I still have a month before he can see me. Any response would be helpful. Thanks. Shadow 50

phu13 · 03-28-2005, 04:55 PM

I'd like to keep this topic going. I am 5 days post parathyroidectomy for an ectopic parathryroid adenoma (anterior mediastinum) which was successfully removed with a minimally invasive approach (thorascope). I don't know what to expect in terms of recovery. My pre-op symptoms were vague, though I'm inclined to believe not unusual for hyperparathyroidism. Probably over the last 5 yrs, I've noticed marked tenderness in my hips, at the crease of my thigh/groin and the bones and muscles of my feet. I'd often think, I feel like I have the flu. I have not had kidney stones. I have osteopenia (bone density scan). I spent a year deciding to have the surgery (cure) vs. lifetime monitoring. According to my surgeons (endocrine and thoracic), the surgery went extremely well. The PTH dropped and the calcium stabilized. I left the hospital with a small pneumothorax (collapsed lung), which I'm told will resolve on its own. I'm not particularly sore at the chest tube site. I feel like getting out and about, however, I do bottom out mid-afternoon. Then all my tender spots seem more tender than ever. Needless to say, I still harbor reservations about whether there isn't something else at work in my body. I realize it's much too soon to judge, but I sure am interested (like you) to hear anything about hyperparathyroidism, since there doesn't seem to be much out there. I am grateful no one suggested Fosamax. That sounds like a nightmare. If my "symptoms" resolve, then I may be a person others can draw support from. So, I'm just getting this out there, because it does make me feel a little loopy in the head, because when I feel lousy, I tend to beat up on myself. The mind chatter is there's worse things out there. You don't exercise enough. It's nothing. So for now, I feel hopeful.

spitvit · 04-24-2005, 09:53 PM

Hello, I am very interested in asking phu13, was your parathyroid adenoma located prior to surgery and if so how? I have elevated PTH, normal calcium levels, severe kidney stones that have gone on so long that I now have signs of renal failure as well as often feeling fluish, trouble sleeping and irritability. I am being sent far from my home to see an endocrine surgeon who is supposedly the best but I am still being told that I have to have a "neck exploration surgery" (10" incision!!) because my adenoma was not located via sestamibi scan or ultrasound. I would really rather have the gland located prior to the surgery so I can have a mini surgery. Any info anyone has in regards to this would be so much appreciated as I am quite frightened about someone digging around in my neck! Thanks!

lily1954 · 05-01-2005, 09:55 PM

Shadow I haven't had my surgery yet but wish you luck and let us know what your rheumatologist finds. Thanks Lily 54