GET IT OUT! Importantly, about 50% of people with a parathyroid tumor will have PTH levels that are high sometimes and normal sometimes. You do NOT need to have high PTH levels to have a parathyroid tumor. Call Norman Parathyroid Center in Tampa Florida for an expert opinion. My wife had surgery there. Scans are wrong most of the time also. Our Dr.s here in Milwaukee said she only had 1 tumor and she had 3, 2 didn't show. The sooner you get it taken care of the better your going to feel.

Hello @rea721

Whenever the parathyroid hormone level is checked, the doctor should always test the calcium level as well. The parathyroid hormone level always needs to be paired with the calcium level. Please check and see if this was done. Often the parathyroid level can be OK, but if the calcium level is high then that shows a need for a closer look at the functioning of the parathyroid.

I would encourage you to take a look at the test results and see if the calcium level was checked and if so if it was normal or elevated.

Here is some information from Mayo Clinic's website about hyperparathyroidism, https://www.mayoclinic.org/diseases-conditions/hyperparathyroidism/symptoms-causes/syc-20356194. I would suggest that you look at the list of symptoms and see how many apply to you.

Is this the first kidney stone you have had? Do you have any bone loss (either osteopenia or osteoporosis) or have you had any fractures? (These can also be symptoms of a parathyroid problem.)

If you feel, after looking at this information, that you should get another opinion, please do so. It is often valuable to go to a multi-disciplinary medical center like Mayo Clinic or a university medical school. They have a lot of research and medical staff that have great skills at diagnosing hard-to-solve health puzzles.

Will you keep in touch and post again?

Hello. I had two parathyroid adenomas removed back on 3/24/21. My calcium and PTH numbers are already creeping up, again, because my regular endocrinologist refused to look for any cause. When I read here that others got NET scans (PET-CT w/dotatate) and kidney function scans after being diagnosed with pHPT, I was both vindicated and angry, because I've been fighting for that here in the Boston area.

In your case, calcium is high, but PTH is still normal? They could still be wrong about hyperparathyroidism in that you could have it. But high calcium on its own - hypercalcemia - is a cancer marker. They should not just be ignoring your issue.

I apologize for the Cleveland Clinic link. 😉