Why didn't the calcium go down after surgery?
I had parathyroid surgery in January 2015, and the one parathyroid that was clearly a problem was removed. But my calcium, already 12.3 (way higher than even most people with hyperparathyroidsims have), only went down to 12.2. After going down about six months after surgery into the high 11s for awhile, as of October 2015 it's back up to 12.2.
Yet, all my other labs except for phosphorous are normal. Phosphorous is a bit low, and so was Vitamin D until my new endocrinologist told me to supplment. Now it's low normal.
This endocrionologist is at UCLA Medical Center. So is the endocrine surgeon I consulted when I first learned the earlier surgery had failed. These two doctors are pretty sure, based on my calcium creatinine clearance ratio, and the lack of visible diseased parathyroids on three new scans, that I have another cause for my hypercalcemia. Mine could be familial hypocalciuric hypercalcemia. If they're right, I do not have to worry any more than a person who has never had hypercalcemia that my remaining three parathyroid glands will go bad, and cause the crazy symptoms I've seen most everyone else with primary hyperparathyroidism experience. I've only had bone pain in my lower back, which has mostly gone away. I did fall two years ago, so that may be why. But why did it take two years to heal?
I have no way of knowing if they are right until March 2016. This is because after UCLA tried three times to get my insurance to approve a referral to the UCLA genetic counselor, the third time was the charm in October 2015. But I was then told the genetic counselor I will see is booked for the next five months. Even then, I'm not sure I'll know. I've already tested most likely negative for FHH on the most basic test, as my first endocrinologist just ran that one without going through a genetiic counselor (since his practive doesn't have them.) So, unless UCLA can do more sophisticated testing, I'll have to accept that while my CaSR test was most likely negative for FHH, my labs and all say differently.
In that case, UCLA will probably scan me annually and if any bad glands show up, I will have surgery. If I start having parathyroid symptoms - but only if - the possibilty of finding another surgeon exists. In the meantime I just have to wonder.
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