Worrying About My Hyperparathyroidism

Posted by dave9136 @dave9136, Apr 21 5:33am

Hi All… I've taken 4 PTH tests over the last 9 months and each test level has been higher than the last. The first test level was 87 and the last, taken just a week ago, was 114. The tests were only taken after I had kidney stone surgery last June, so I'm assuming my PTH level could've been high before that. I'm very worried and am not sure what's causing the problem as my calcium levels are and have always been in the normal range, 9.5 – 10. My last 2 vitamin D levels were 23. My endocrinologist told me that my PTH level is high because my D level is low and to correct that, she wants me to start taking 2,000 IUs per day until the level goes above 30. Another doctor suggested I take 4,000 IUs per day. I know that doctors regularly prescribe D when a persons D level is below 30, but I haven't read from anyone, anywhere that they're high PTH level normalized after taking it. In addition, I've read on some websites that taking vitamin D to treat hyperparathyroidism can actually raise a persons calcium level too high making their hyperparathyroidism worse, so I have some concerns about taking it. Thoughts?

*I'm a new member of the Mayoclinic's health forums and accidentally posted this post to another section of the forum before posting it here.

Hello @dave9136 and welcome to Mayo Connect.

I also have elevated PTH levels. along with slightly elevated calcium levels and low Vit D levels. I have recently started taking Vit D twice a day and that brought my D levels up from 17 to 30. Sometimes it is good to break up the amount of D into two different doses (at least this is what my endocrinologist suggested).

Are you seeing an endocrinologist? Have you had a nuclear scan of the parathyroid to look for nodules?

REPLY
@hopeful33250

Hello @dave9136 and welcome to Mayo Connect.

I also have elevated PTH levels. along with slightly elevated calcium levels and low Vit D levels. I have recently started taking Vit D twice a day and that brought my D levels up from 17 to 30. Sometimes it is good to break up the amount of D into two different doses (at least this is what my endocrinologist suggested).

Are you seeing an endocrinologist? Have you had a nuclear scan of the parathyroid to look for nodules?

Jump to this post

HI Theresa.. Yes, I'm seeing an endocrinologist. She was the Dr. who recommended I start taking the vitamin D. No, I haven't had a nuclear scan yet to look for nodules. Is the nuclear scan the same as the sestamibi scan? I heard that those scans are not always accurate. I did have an ultrasound during an endo visit about 5 months ago and it didn't show any nodules.

REPLY
@dave9136

HI Theresa.. Yes, I'm seeing an endocrinologist. She was the Dr. who recommended I start taking the vitamin D. No, I haven't had a nuclear scan yet to look for nodules. Is the nuclear scan the same as the sestamibi scan? I heard that those scans are not always accurate. I did have an ultrasound during an endo visit about 5 months ago and it didn't show any nodules.

Jump to this post

Hi @dave9136,

I am glad to hear that you are seeing an endocrinologist, they are the doctors who can best deal with this problem. I'm not completely sure if the sestamibi scan is the same as the nuclear scan, but after reading about the sestamibi scan it sounds like the same type of test. I am taking 2,000 of the Vit D twice a day, morning and night. That brought up my Vit D level to 30, would like to get it a bit higher.

Have you had any broken bones or been tested for osteoporosis?

REPLY
@hopeful33250

Hi @dave9136,

I am glad to hear that you are seeing an endocrinologist, they are the doctors who can best deal with this problem. I'm not completely sure if the sestamibi scan is the same as the nuclear scan, but after reading about the sestamibi scan it sounds like the same type of test. I am taking 2,000 of the Vit D twice a day, morning and night. That brought up my Vit D level to 30, would like to get it a bit higher.

Have you had any broken bones or been tested for osteoporosis?

Jump to this post

No broken bones and no, I haven't been tested for osteoporosis, but I'm thinking I should be tested for it at some point, especially if the PTH remains high.

You mentioned that you were taking vitamin D. Did your doctor recommended you take it to reduce your PTH level? And if so, has it worked? I was on D for many years. I went off it a month ago hoping it would prevent my calcium level from going higher and possibly lowering my PTH level. It did slighty lower the calcium level, but unfortunately, my PTH level continues to rise. Going off the D helped unexpectedly in other ways, though. No more back pain and no more feeling at times like I couldn't catch my breath.

REPLY

Hi @dave9136,

As far as I know, the doctor just recommended the additional Vit D simply because my level kept measuring 17 (at that time I was only taking one dose of Vit D per day). I'm not sure how (or if) the D level affects the PTH nor the calcium levels.

Do you have more information about this correlation?

REPLY
@hopeful33250

Hi @dave9136,

As far as I know, the doctor just recommended the additional Vit D simply because my level kept measuring 17 (at that time I was only taking one dose of Vit D per day). I'm not sure how (or if) the D level affects the PTH nor the calcium levels.

Do you have more information about this correlation?

Jump to this post

Hi Theresa,

Below are links a few articles that discuss the association between low vitamin D, calcium, and hyperparathyroidism:
https://www.advancedparathyroid.com/hyperparathyrodisim/symptoms-of-hyperparathyroidism/vitamin-d/
https://www.mayoclinic.org/diseases-conditions/hyperparathyroidism/symptoms-causes/syc-20356194 https://www.hyperparathyroidmd.com/hyperparathyroidism-vitamin-d/

There are others on the web as well.

Dave

REPLY
Please login or register to post a reply.