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#1 Aug. 27, 2018 15:02:31

WishIKnew
Registered: 2018-08-27
Posts: 1
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Graves, RAI, and hyperparathyroidism

I was treated with RAI 19 years ago for Graves disease. In July I found out that I had hyperparathyroidism (for atleast the last 9 years according to my past blood tests), and just got a very large tumor removed last week. The endocrine surgeons told me that RAI is linked to hyperparathyroidism and that I should have been informed of this risk, and had my calcium levels monitored on a regular basis. Today, when I look at the Graves Disease and Thyroid websites for the risks associated for RAI treatment, this is not mentioned at all. However, when I go to the parathyroid websites, RAI is known to be associated with elevated risks of parathyroid tumors called adenomas. The surgeon told me that his practice operates on and removes adenomas from 1-2 people a week that had RAI.

I think this is unfortunate that this risk is not mentioned. I am posting this in the off chance it helps someone else like me. My health has been deteriorating for years and my slightly elevated calcium levels have been ignored, because they aren't “that high”. Dr.'s have been treating my low D for years sometimes with 50,000 IU. One simple PTH test many years too late, identified the problem. Hopefully my body will fully recover from all the damage the tumor caused.

Also please note that calcium should never be above 9.9 in anyone over 35. The lab ranges that go above 10 for the upper limit are not for older adults.

One last bit of advice…It would be nice if dr.'s would explore out of range blood tests instead of rationalizing it away….Be your own advocate. Get your blood tested with every physical, and do your own research on your out of range test results. Its the information age. Make your doctor have an educated and even challenging conversation with you. Don't assume they are researching anything beyond the common ailments of a general practice.

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#2 Aug. 28, 2018 16:57:22

Kimberly
Online Facilitator
Registered: 2008-10-14
Posts: 4062
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Graves, RAI, and hyperparathyroidism

Hello - Have not heard much about hyperparathyroidism in terms of treatment options, with the exception that someone with *existing* hyperparathyroidism might be steered to surgery instead of RAI. Will keep an eye out for further research on this!


Kimberly
GDATF Forum Facilitator

…through nature's inflexible grace, I'm learning to live…
– Dream Theater

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#3 Sept. 5, 2018 10:54:08

emmtee
From: Phoenix, AZ
Registered: 2011-10-26
Posts: 139
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Graves, RAI, and hyperparathyroidism

Thanks, I've never heard anything about this. I have regular CMPs due to kidney issues, and my calcium is always at the high end of normal. I drink milk daily and take a calcium supplement, though. I also take a D supplement because I was low and finally got to mid-range where my endo wants me. I'm 53, BTW. I had a TT almost 3 years ago and my surgeon didn't notice anything wrong with my parathyroids then. I'll start paying more attention to the calcium numbers in future blood tests, and maybe cut back on my supplements if it gets too high.

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