Dr. Norman is the doc. behind parathyroid.com I.e. the one I said has a lot of info. but don't believe everything you read. I looked into him and called the office. This info is on his site as well. When you are out of state, you pay out of pocket (insurance will NOT cover it) $1500, just for them to get your records! That does not mean they'll take you!
Upon their aproval, you pay to fly there, stay, etc. and then have the 15 min exploratory surgery. Everyone who goes there has this surgery. They sometimes, not all of the time, will remove the tumor then. I did further research and found a lot of botched and hurried surgeries from him. A whole lot saying it's a money making scam.
He's selling the "calcium app pro" to track your calcium but tells you that you most definitely have it if your calcium is high and your PTH is high. No other explanation for it. So why do you need the app then? Truth is, there are a few remote possibilities for hypercalcemia and in some cases, letting it go and doing conservative treatment until the tumor gets too large, is best.
With all of that said, I reiterate what I said before and what others are saying, you need a more aggressive approach. Your numbers are way too high to just watch. You need someone to take ownership of this and do regular calcium and PTH tests.
I don't know if you can do what I did and just make an appt. with an endo surgeon without a referral, but if you can, do it. I made the appt. and when they asked for the referring MD. I told them it was my regular endo, even though he was the one sitting on it and teling me to wait! I then messaged my endo and told him that he might be comfortable waiting but I wasn't, so I was seeing a surgeon. He told me that "any responsible surgeon worth their weight in salt, will not operate on you without more evidence."
The endo surgeon (whose wife and mil go to my endo!) said that he didn't want to step on anyone's toes, but that he couldn't disagree more with my endo. With all of that said, he is still checking me for a couple of remote possibilities for the hypercalcemia and doing ultrasounds, etc. Then, he will do surgery.
Yes, there's a link between all AI and hyperparathyroidism and Thyroiditis. Thyroiditis is an AI but no one is sure where hyperparathyroidism comes from. Definitely is familial though. Not that you can't be the first in your family. Ugh.
Take care now. Keep us posted for sure! ~Andrea