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Old 11-23-2001, 11:32 AM   #1
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Post Osteoporosis and Hyperparathyroid disease

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, 1˝ 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??

 
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Old 03-26-2005, 09:36 AM   #2
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Re: Osteoporosis and Hyperparathyroid disease

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

 
Old 03-28-2005, 03:55 PM   #3
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Re: Osteoporosis and Hyperparathyroid disease

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.

 
Old 04-24-2005, 08:53 PM   #4
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Re: Osteoporosis and Hyperparathyroid disease

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!

 
Old 05-01-2005, 08:55 PM   #5
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Re: Osteoporosis and Hyperparathyroid disease

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

 
Old 05-01-2005, 09:04 PM   #6
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Re: Osteoporosis and Hyperparathyroid disease

spitvit,
They haven't found my adenoma yet either and suggested a neck exploration surgery so i found a new surgeon that does the minimally invasive surg. I also have thyroid nodules that have to be retested and another sestimibi scan. Does anyone with this illness have vitamin d deficiency?

 
Old 05-06-2005, 03:17 PM   #7
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Re: Osteoporosis and Hyperparathyroid disease

Hi,
Did anyone here visited the website [url]www.parathyroid.com[/url] or have experiences having minimally invasive parathyroid surgery with Dr.Norman in Florida. According to his website, he seems to be the pioneer in this procedure.

I have recently been diagnosed with hyperparathyroidism and after some research on the disease I decided to go for the minimal invasive surgery procedure. I live in California, but I have scheduled a surgery beginning of June with Dr.Norman in florida. I would really appreciate if I could get any feedback on this or anyone who has experience in the MIRP procedure and their experiences.

-Jay

 
Old 05-06-2005, 04:08 PM   #8
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Re: Osteoporosis and Hyperparathyroid disease

Boy, I'd be leery of having parathyroid surgery too if they couldn't locate an adenoma! Have you guys really poured over your blood draw results and urine tests and thoroughly discussed and questioned them with your endocrinologists?

Secondary hyperparathyroidism can be caused by malabsorption problems and/or by renal problems. Vitamin D deficiency that we are reading so much about now can cause secondary hyperparathyroidism.

I hope that you are all able to work this out and get some relief whether thru surgery or whatever. Good luck and God bless!!!

 
Old 05-06-2005, 08:16 PM   #9
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cayura HB User
Re: Osteoporosis and Hyperparathyroid disease

I have just been diagnosed with hyperparathyroid. I was going to wait for a second opinion because they did not locate the gland on the scan, but my BP has shot up from it's usual 105/65 to 170/100! I think i am going to pop! Started bP medicine today because i didn't think i should wait on that. How can you go from low BP for 56 years, then pop! I am considering a second opinion with a doctor Kokura who my friend had do an op a year ago or Dr. Norman in Tampa. ANyone have any feedback?

 
Old 05-07-2005, 08:21 PM   #10
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Re: Osteoporosis and Hyperparathyroid disease

I recently had my endocrinologist test my parathyroid hormone levels because of kidney stones in the past and now again in the present.

My PTH level was 76 w/ normal being (10 - 65) pg/mL
My calcium level was 9.1 w/ normal being (8.8 - 10.1) mg/dL

Does this mean Hyperparathyroidism?

Tsmur

 
Old 05-08-2005, 07:13 AM   #11
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Re: Osteoporosis and Hyperparathyroid disease

I'm not sure that anyone but your doctors could answer that. Tests for hyperparathyroidism "usually" include low serum calcium rather than high normal. Other results could be abnormal serum phosphorus levels, either high or low; elevated serum alkaline phosphatase, variable vitamin D levels (both 25 D OH and 25 D1 OH) and/or abnormal urine calcium levels, either high or low. I've forgotten the physical symptoms other than bone and joint pain. I would think an internet search on hyperparathyroidism should bring those up. Good luck and God bless.

 
Old 05-09-2005, 08:18 AM   #12
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Re: Osteoporosis and Hyperparathyroid disease

I'm going for a second opinion next week. I have elevated calcium, elevated ionized calcium and elevated parathyroid hormone levels. The scan did not locate the malfunctioning gland, so I'm not sure than an op is the way to go, but i'm trying to be proactive, though all i want to do is crawl under a rock and have it all go away.

 
Old 05-11-2005, 12:47 PM   #13
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Re: Osteoporosis and Hyperparathyroid disease

Ha! Since my last parathyroid blood draw was drawn at my Endo's office and sent to Quest Labs for testing I think I know why she prefers I have my draws done at a Quest Lab! Quest pretty much does the Dx'ing for her!!!

The Quest Lab report not only gives the test levels but also an "Interpretive Guide" which gives the Intact PTH in relation to Calcium.

The normal PTH lab reference ranges are 10 - 65 pg/ml, the Calcium reference ranges may vary from lab to lab.

So PTH intact level <20 and low calcium level would indicate Hypoparathyroidism.
PTH intact level >65 and high calcium level would indicate Primary hyperparathyroidism.
PTH intact level >65 and normal or low calcium level would indicate Secondary hyperparathyroidism and
PTH intact level <20 with high calcium level would indicate Non-parathyroid hypercalcemia

 
Old 05-20-2005, 03:48 AM   #14
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Re: Osteoporosis and Hyperparathyroid disease

I've been suffering with hyperparathroidism since 2001. I had surgery Nov 2001, and had three and one half of the parathyroids removed. I'm still battling this conditon, with my boold calcium levels yo, yoing up and down all the time. I have chronic pain in the right flank, chronic fatigue, and bone pain. I now have kidney stones, my first that I'm aware of having. The Dr said it was small enough, it should pass on it's own. That was last week, and still not passed. Now I'm going for more tests to see if it is caught. I'm also having problems starting with the gallblader, not sure yet if this is realted to the hyperparathyroidism. I feel for anyone who is experciencing this condition. Surgery was supposed to cure me, but unfortunately it didn't. Has anyone else had the surgery, and not been cured?

Becca

 
Old 05-20-2005, 03:57 PM   #15
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Re: Osteoporosis and Hyperparathyroid disease

I recently had a hyperparathyroid removed on April 25th. I had my surgery performed in Northern Virginia by a doctor who was recommended to me by serveral people. It seems there must surgeons who are more than capable of performing this type of surgery. This type of operations has been around for a few years now so there are many doctors who have experience.

Unlike the doctor in Florida, my doctor does not recommend that this surgery be performed under a local anesthia. Since the patient is still awake there is a possibility that the patient may move. This can have harmful results as you may have read from an earlier post. My surgery was done on an outpatient basis. My surgery was performed under general anesthsia. The surgery took a little over an hour. One reason why it took longer than what Dr. Norman would say it should take is that my doctor took several blood samples before, during, and after the surgery. These blood samples were taken to monitor my PTH levels. My PTH level was as high as 153 prior and after the surgery it was down to 65. Tissue was also taken to verify by a second source that the parathyroid removed was an adenoma.

I was out of the hospital by 3:30 p.m., driven home by my wife.

Unless you really want to go to Florida I recommend for you to find a local surgeon that has performed this type of operation and comes highly recommended. If you have any complications or issues on the operation you will not have to go back to Florida.

Good luck on your operation!!

Last edited by trakster; 05-20-2005 at 04:06 PM.

 
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