Worrying About My Hyperparathyroidism

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?

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.

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?

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.

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?

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

Hi, I am new and not sure if I'm doing this right. My primary doctor says that I have primary hyperparathyroidism. My calcium has been elevated for several years, but my PTH is always in the upper half of the normal range. I also have other symptoms including recently a large kidney stone which was lodged in my ureter. He referred me to an endocrinologist. I saw him yesterday and he basically told me there's nothing he can do, that no surgeon will do surgery because my PTH is not elevated. I've read about the effects elevated calcium and I'm concerned about letting it go. Any info would be appreciated. Thanks rea721

@rea721 Welcome to Mayo Clinic Connect. You have a large kidney stone in your ureter but you were told that no surgeon will do surgery because your PTH levels are not elevated. You want to connect with other people that have gone through someone similar. Members like @dave9136 @hopeful33250 have discussed this topic before.

Below I have linked a previous discussion related to this topic. You may wish to scroll through the previous comments. There looks to also be links provided by a member that may be helpful.
- Worrying About My Hyperparathyroidism https://connect.mayoclinic.org/discussion/worrying-about-my-hyperparathyroidism/

You mentioned that you were concerned with, "letting it go." May I ask if you have considered a second opinion?

Read this.
https://www.parathyroid.com/parathyroid-disease.htm

Yes, I have considered a second opinion, but I wondered if other doctors would feel the same about not doing a hyperparathyroidectomy surgery because my PTH is in the normal range. Just to clarify, it's parathyroid surgery not kidney stone surgery that the doctor said no surgeon would do because my PTH is normal.