Parathyroid hormone: I'm considering my treatment options

What was your calcium?

Hello @tsch

As @riflemanz64 mentioned, I'm also wondering if you know your calcium levels? When high PTH levels show up, endocrinologists usually keep an eye on the calcium numbers as well. When both are elevated, that is when surgery on the parathyroid can be an issue.

You mention that you have no symptoms. Symptoms of hyperparathyroidism usually include bone loss, bone pain, and sometimes kidney stones as well. Here is some information about the symptoms of hyperparathyroidism from Mayo Clinic's website, https://www.mayoclinic.org/diseases-conditions/hyperparathyroidism/symptoms-causes/syc-20356194.

Has your bone density been tested, @tsch?

My calcium so far is normal. Last bone density Nov. 2020 ok, next in November 2022. I do know the symptoms, and have none of them yet. Have had all screening tests and all are ok. (Kidneys, urine, blood, bone.) Doc said I might need surgery some day and one gland is clearly overproducing, but for now, he is monitoring. PTH has been high for two years, possibly longer but not tested before January 2020. There is normocalcemic parathyroidism and that seems to be what I have. Calcium never out of range.

It sounds like your endocrinologist is being diligent in this follow-up on this matter, @tsch. I hope that you continue to remain symptom-free.

I had not heard of normocalcemic parathyroidism before. That is very interesting.

Do you have other endocrine problems?

There is info online about the condition called normocalcemic parathyroidsim. I had/have a thyroid nodule, so I take Synthroid for that, and my numbers are extremely consistent and normal since 1988. I have no other health issues . I do take 4000iu Vitamin D3 daily.

This is what I have as well (I think). I am not aware of any of the symptoms (yet). I went to an endocrinologist 4 years ago after high levels of PTH were discovered in a blood test by my primary care provider. She sent me to the endocrinologist. My calcium levels have always been normal but my Vitamin D levels were low so she had put me on a Vitamin D3 supplement. The descriptions I read of hyperthyroidism also indicates that it can take a while for levels to return to normal if there has been a Vitamin D deficiency. This was echoed by the endocrinologist at the time - he said getting your PTH levels back to normal after a Vitamin D deficiency was like steering a ship and can be done but it takes a while to do - we have come down the road 4 years and she did another test in February. My calcium is normal but my PTH is still elevated beyond the normal range. So here I go again to an endocrinologist next week (but a different one this time). I get a bone density test on Monday morning. I read where someone else who had the same normocalcemic hyperparathyroidism made the comment that if you have a tumor (cancerous or not), that tumors can make a parathyroid gland behave erratically. It may be 100 when you get tested and the next day be 600. Not sure how true that is but it makes a certain amount of sense. There is only so much the other 3 glands can do to try to make up for the gland that may be behaving badly.

There are articles about normocalcemic hyperparathyroidism from the National Institute of Health and the UCLA Health organization here: https://www.ncbi.nlm.nih.gov/books/NBK555967/ and here: https://www.uclahealth.org/endocrine-center/normocalcemic-primary-hyperparathyroidism.

Best of luck.

Your situation is quite a bit like mine. My vitamin D was on the low side (27-30) but now is about 50, after taking supplement. I have had PTH tested about 6-7 times since 1/2020, and its been elevated all the time. I think 174 (1/2022) is the highest yet, and its never been normal since 1/2020. My 2 year bone density will be in November. I do have for a many years ostopenia in one femur head. I suspect my PTH levels will never be normal, and wonder if its better to do surgery now or wait and hope it is never needed. I have had two ultrasounds to look for parathyroid glands and they could not be seen. Reluctant to do a nuclear (possibly more definitive) scan as I would have to stop Synthroid and I do not want to do that unless absolutely necessary. Good luck to you. I am female and 79 (ugh) and otherwise in excellent health. Would you mind telling your sex and age?

My wife had high calcium and high PTH. She had symptoms for many years and bone loss.
She had scans done and they showed 1 tumor. She had surgery at The Norman Parathyroid Center in Tampa Florida. They removed 3 of her glands that had tumors. The scan was wrong here that she had done in Milwuakee Wi. They check all 4 glands during surgery and your thyroid.
Very simple surgery and back in the Hotel room 6 hrs later. Everything is normal now.
More info here to read.
http://www.parathyroid.com

Hello @plstroud,

Thank you for that interesting article on normocalcemic hyperparathyroidism. I see that your elevated PTH was discovered about four years ago.

How often do you have rechecks for the PTH level?

The weird twist to this is that my PCP deferred to the endocrinologist's determination and she had not checked them again until just this February. I think she was surprised that they weren't in the normal range. She had checked my calcium, potassium, etc. on a yearly basis as part of normal checkups (basic metabolic panel) and since they were normal she didn't do the extra PTH test. I guess a lot of doctors would make the assumption that if the calcium level is normal, no need for the extra PTH test.