hyperparathyroidism: doc sending me to uber specialist

andreamarie

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The neuroendicrinologist I saw at Mass General had hyperparathyroid on my lab but didn't mention it to me. I didn't have hard copy. When I saw Dr. Felsenstein she repeated the test and is sending me to a specialist in hyperparathyroidism. This has NOTHING to do with thyroid. The only treatment is surgical. The interesting thing is many of the symptoms are symptoms of CFS. The original doc might have discounted it because my calcium is normal and it almost always is elevated. Has anyone had this problem or lab result?
 

glenp

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I have tested high for parathyroid - - it somehow went back to normal. Did the doctor send you for an ultrasound? - it seems to me I had an ultrasound around that time

glen
 

glenp

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Sorry I am so foggy. I seem to remember the cfs physician ordering a different test and the hospital saying that I didnt need it and the sonogram would do - seems to me the parathyroid is behind the thyroid and that it can be swollen? but mine was ok. The technitician had said that if they cannot see it, thats a good sign. It was a few years ago -- my parathyroid blood tests come back normal now. I didnt get specific treatment. Let me know what happens with you. Sometimes tests of mine have been abnormal and somehow have gone back to normal.

glen
 

andreamarie

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fatigue, sleep problems, bone pain, depression, anxiety,headaches, can't remember them all. ones i have are intractable GERD, nausea and vomiting. others are kidney stones, there are more. my doc says "it affects al lot of things and you feel awful. There are four parathyroid glands in your neck. if even one develops an adenoma, you may feel sick. the only treatment is surgery. usually you have elevated calcium, but i don't. some people don't. levels can fluctuate. i'll check other symptoms.There is direct involvement with vit D and calcium. i also have osteporosis, which is a major symptom.
 
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I had a parathyroidectomy about 10 years ago- there is no other treatment and an op is essential .

Do pm me if you need to talk about it. I also developed a large kidney stone as a result of the hyperparathyroidism.
 

andreamarie

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i did read every word of parathyroid.com: there was some things that were helpful in a diagnosis. i also read a lot in Medscape. I spoke to a friend who's a retired nephrologist (people with kidney disease get secondary hyperparathyroidism) and he told me i could stop reading; i was ready to do the surgery. Min, thanks, first i have to get a diagnosis, and if surgery is indicated I will pm you.
 

andreamarie

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saw specialist today. said hyperparathyroid levels are too high because D is too low. D isn't that low but he wants it at least at 50. Says CFS patients share some symptoms with D deficiency. really liked him; he definitely believes in CFS. told me i'm very flexible, well toned and NOT to exercise. I'm back on 50,000 units weekly of D; I might have to be on high scrip doses indefinitely because of Crohn's.
 

rlc

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Hi andreamarie, glad to hear things went well with the specialist, i was wondering if when they said they want vitamin d above 50 if they ment nmol/L or ng/ml. Vitamin D deficiency has for a long time been thought to start at levels below 50nmol/L but new research show optimum levels are above 125nmol/L, theres a article about it here http://www.vitamindcouncil.org/health/deficiency/am-i-vitamin-d-deficient.shtml

I was also wondering if they'd checked for renal tubular acidosis this can sometimes be caused by hyperparathyroidism link here http://medwinendocare.academia.edu/...Distal_RTA_due_to_Primary_Hyperparathyroidism

All the best
 

andreamarie

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not sure which D but i think it is nmol. article that came out last wk differs in opinion on some D ideas but they don't affect me. I've been on high scrip of D for almost a yr so i wonder how i'll get it to fifty. my pcp, who specialist knows, will take over. she put me on 100.000 units about a yr ago. i might not be absorbing it properly because of surgery i had yrs ago for crohn's.
 

Sushi

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Andreamarie,

As I remember the only prescription Vit D is actually D2 not D3. Some people have better luck getting their levels up by supplementing Vit D3. My doctor has had me taking 5000 iu daily and my last test put me at 70.

Interestingly, another friend wrote to me yesterday to say that she had had parathyroid surgery recently and started feeling much better within days. I know she was thoroughly tested before surgery though.

Best wishes,
Sushi
 

andreamarie

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if my D goes up and i still have hyperparathyroid then doctor will have to look further. but i really trust this doc; he showed my how my parathyroid went up and down with my D. i will ask about D3. i've been on 100,000 a wk and now am on 50,000. i was on the higher dose when my D was 14. Sushi, did you feel better with a higher D?
 

Sushi

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Sushi, did you feel better with a higher D?
It is very hard to know what changes are caused by what, so I really can't say if I felt better with the higher levels of D. It comes up slowly, so the change, if it happened, would have been subtle.

Best,
Sushi
 

rlc

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Hi andreamarie, i found this article it says calcium can fluctuate in people with hyperparathyroidism which would explain that normal calcium result, it also says it is a myth that low vitamin D causes hyperparathyroidism, and that the low vit d is caused because the body trys to drop the vitamin d levels because vitamin d increases calcium absorbtion, which is already high because of the hyperparathyroism it's the bodies way of trying to protect itself. They say the tumor should be located immediatly and removed and then everything will come right and to not waste time worrying about vit d link to information here http://parathyroid.com/low-vitamin-d.htm

All the best
 

andreamarie

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I had read this carefully. It still doesn't apply to me because the author talks about low calcium and low D. My calcium has been normal for fifteen yrs; it is not causing low D which is what the author is discussing. Because people who had the type of surgery for Crohn's that I had, my gastro always tests my calcium. Also, I have high oxalate levels because of the surgery so I've been taking Citracal for twenty five yrs: 2,000 a day. I was told to specifically take Citracal because it's absorbed better than most calcium supplements. The Citracal is supposed to protect me from kidney stones, which happen with high oxalate levels.
The surgery I had also can also make it difficult to absorb fat soluble vitamins. There is one expert on vit. A in Boston (he's considered the best in the world) and he tested my A yrs ago; it was partially off even though the levels were good. I sent him an email and he's going to test it again. He has a grant so he'll put me in his study.
I did speak to my gastro after I got the dx; he wasn't surprised and felt the dx was spot on. So did my shrink, who is a close friend with one of the five D experts in the U.S.
I found some flaws in the articles you referred me to; I read it before I read journal articles and then went back to it again.
If my D comes up and the parathyroid is still high then the specialist I saw will go further and I might need surgery. The last thing I want is unnecessary surgery; I fear it would really do a job on the CFS.
I'm writing this before my coffee, so I'm sorry if it isn't written well.
 

andreamarie

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I wanted to add that EVERY doctor I spoke to totally believes in CFS. They are at three different medical centers; my gastro sees a lot of CFS patients who have IBS and CFS and is stunned at their level of fatigue. My shrink always believed in it; he has a colleague who was out of work for over a yr and did recover. Both are aware of XMRV; they are waiting for the studies to shake out. When I was first dx fifteen yrs ago I did meet specialists who were skeptical, but they did not question my symptoms.
 

andreamarie

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If we can't get my D levels up, I will see either Dr.Bess Dawson Hughes at Tufts or Dr. Howland at Boston Medical Center. They are two of the five experts in D in the U.S. I saw Dr. Hughes many yrs ago and my D was normal, but the test and numbers were different. I loved Dr. Hughes because she told me ice cream was a good food for calcium!