Did they do a Ionized Calcium test? It actually is quite common for the sestambi scans to miss tumors....please go to parathyroid ******* and read what Dr Norman has to say. He is located in Tampa FL and is supposed to be the best in the US. His site gives incredible information on parathyroid tumors and disease. After you read this let me know if you plan on just waiting a few months. I bet you don't. lol :) :)
I also have high PTH and serum calcium and had a sestemibi scan along with a Cat Scan with contrast. They didn't find anything. Was negative. I'm at my witts end! My Vit.D was VERY LOW at 8.5 . Been taking 50,000iu weekly to bring it up but then it increases the other levels. In a catch22. I asked three endocronologists, "what now"?. They said they'll watch it. I don't want to just watch it. Don't feel like getting a stroke or other bad things that come along with high PTH and calcium and low D. I have osteoporisis at 57yrs old and my recent nuclear whole body scan shows degeneration in all joints. I also have a positive RA Factor (rheumatoid arthritis test) but one rheumatologist says I have RA and another one says it's a false positive. But I do have arthritis. Just don't know what autoimmune issue I'm dealing with.
Getting back to the high PTH and calcium....If you find out anything please pass the info to me and vise-versa. I would like to get down to the bottom of this.
I was thinking of going to a surgeon and asking his opinion. Maybe there's another test that can be taken? My urine calcium came out on the low end of normal. Strange. The docs were expecting to see a higher number. Please let me know what yours is.
My Sestamibi scan came back negative too...but I soon after ended up having one gland with a large tumor in it removed. My surgery turned into an exploratory one due to the dr not being entirely certain which gland was the problem.
The urine test would be another thing to help the dr get a clearer idea. Are you having to do a 24hr collection?
Let us know how you make out.
Yes, I am doing the 24 hr collection on Saturday. My calcium was not ionized. My vit D is normal. I read all through the website on parathyroid and don't want to wait either. My mom had 2 glands removed when she was in her 30's. I don't actually go to an endo until Jan. It is difficult finding a specialist around here (Elko, NV). My appt is in Salt Lake City. Reno endos couldn't get me in till June.