hyperparathyroidism

[abt2givup]

I have almost all the symptoms of hyperparathyroidism but no doctor will diagnosis me because my calcium levels are not always high. Are there any other conditions that mimic the symptoms of it?  Are there any tests that can be down to verify it other than calcium levels and 24 hour urine samples?  Thanks

[Brigee]

I know it's been a while since you posted, and I'm hoping you're still around. Given my test results, there is no doubt I have hyperparathyroidism - calcium in the 10's consistently and now a PTH that is the highest yet at 127 (normal range ends at 80). My endo has been messing around with this for quite some time, thinking I had a Vitamin D deficiency, which I now know is wrong! And I have been experiencing more and more symptoms which I know are all symptoms of hyperparathyroidism. At any rate, now she wants me to get a sestamibi scan BEFORE she will send me to a surgeon.

From what I have read, this is not really a diagnostic tool (especially considering my test results have already confirmed the diagnosis of hyperparathyroidism), and it is not very accurate. Plus, I am leery of that radioactive iodine capsule and then the sestamibi radioactive IV solution, given that I also have a multi-nodular goiter.  All the surgeons I find online who do the minimally invasive parathyroid procedure say they only do this scan immediately prior to surgery. It seems pointless to undergo it twice. So, my question to you is did you have a sestamibi scan prior to surgery?

[medicmommy]

First of all...(((((((((((((((HUGZ))))))))))))) -I know you need them right now. I was in your shoes 3 years ago and finally had to make a stink to get my @#*#@ Dr to order a PTH test because I had 11 of the 16 symptoms for HPT and she didn't want to order the test. By this time, I'd had 7 kidney stones, had been having all kinds of issues related to hypercalcemia (heartburn, headaches, joint and muscle pain, brain fog, female hormone issues, hypoglycemic attacks, gall stones, the maddening frequent urination, etc, etc) -and this had been going on and getting worse for 4 years!!! (I found out later that my calcium levels had been elevated for that long as well, but my Dr didn't mention it! GRRR!) Anyhow, the PTH came back triple what it should have been with my calcium ranging from high normal to high levels. -They found a parathyroid tumor the size of a chicken egg and, once removed, -I felt great!

My advice to you...1) Get copies of ALL your labs and keep them in one spot (drag them with you to Dr appts, that way they can't give you the old "blow off" if they "don't have those lab results" 2) If you haven't, get a PTH and a calcium (ionized if you can get it) test done. If the PTH is on the high end, then the calcium should low. They should either both be middle of the road, or at opposite ends of the norm range. the calcium should NEVER be normal or high if the PTH is high. Yes, there are a few other things that can cause HPT -usually as a secondary cause like MEN syndrome (rare), pituitary issues, or throat/ thyroid damage from infection or surgery. Please post your PTH and calcium levels when you get them...Good luck! ~MM