Parathyroid-NEED HELP PLEASE!!

[Lori707]

Hyperparathyroidism?
Hi all. I'm back. Had a CT with contrast and a nuclear Sestamibi scan. Showed no adema. Still feel sick as a dog and getting worse. But now my enzymes are High showing that my bones are affected. My nails have ridges(vertical). Tomorrow I'm getting a nuclear total body bone scan. Docs are saying that I'm losing bone density every day but since they can't find an adema on the scans I took, they would have to go in for an exploratory. That's not a mini surgery! They all said they don't feel I should have this surgery. I'm 57 yrs. old and in poor health as is. I've heard  that sometimes they have to repeat the surgery because they couldn't find anything the first time. What am I supposed to do now?  Is there another test I can take that may pick an image up?  What's weird is that my calcium serum and PTH is elevated but my 24hr. urine calcium is low. Isn't it supposed to be high? Also, my 24hr. phosphorus is LOW!  ??   What's that about?

Somebody please help me with some clues as to what's going on with me. The docs see me for 10-15 min. then tell me to come back in 6 weeks. This is just dragging on and on for so long! I feel helpless and scared.

[Thypatient]

This stuff is all so confusing.  I wish I could give you specific feedback on the labs, but I do know that my results always seemed contrary to what I thought they should have been.  Like, my phosphorus was high (?), so much so I had to take a phosphorus lowing med.

I agree with softlights in that maybe throwing out these question on the dr's forum might help give you some answers.  And I agree to keep pursuing an answer; you can't live like this.

I do hope the total body scan helps.

My surgery was exploratory and it was effective.

My thoughts are with you.

[softlights]

RE. DR NORMAN..He DOES do the sestabami scan.. however, he does it the Day of your surgery. Prior to treating you, he can diagnose whether or not it is a Parathyroid problem.. based solely on the Labs.. So.. if you have Parathyroid problem, it is diagnosed via labs....The scan is done by him later. Just to Clarify.

[softlights]

Please have faith. You need to see a different md. I know you probrably have read Dr Norman's parathyroid.com website.... If you email him with specific labs and a specific question, I have read he does respond. His email address is at the end of the parathyroid.com site( If I remember correctly).  He helps people even who do not have a scan done in advance, as the diagnosis is based on lab results.  I would do this asap...and possibly see another md regarding your condition... You may have something else, but if I were considering surgery for parathyroid, I would be sure that's what you actually need.  Then, I would try to find the BEST.   I had this surgery, and am doing well.. However, my adenoma was visible on the scan.. I did not see go to Tampa for my surgery... However,  Dr Norman inisists he can help people based on an accurated diagnosis, ( sometimes using only labs) and has sometimes found the offending gland in the chest of patients.. I don't want to alarm you,, so please try to contact him, and explore your other options as well.  All the best!  ps  Why not write to Dr Lupo on the experts forum??> that might help too.            Softy