Hey all, I'll try to make it quick. Got sent to an ENT surgeon by my endocrinologist last month after him telling me I DEFINITELY had a parathyroid adenoma, because there was no way my calcium and PTH would look like that otherwise. Went to the ENT, who said he wanted to do an ultrasound first and then he'd schedule me for surgery. I was thinking I was finally going to have my health problems cured (I've been seeing various doctors about this for a year now...)
Then: negative ultrasound. It was performed by a lab tech, who said my glands looked normal. The ENT doctor also said that after. He said my high-PTH high-calcium reading could have been an "isolated case" and that "these things move around all the time."
So I went back and checked my earlier labs (the endo had been monitoring my calcium and PTH for a while) and here are the numbers:
May 2012 PTH 55, Calcium 9.7
May 2012 PTH 46, Calcium 10.6
June 2012 PTH 60, Calcium 10.6
July 2012 PTH 44, Calcium 10.6
Oct 2012 PTH 81, Calcium 10.7
The calcium is almost always high. However, depending on what scale you're using (and I am assuming the ENT surgeon is using the "below 65 = normal" scale) my PTH has never been high except for this last test, it's just been high-normal.
On the other hand, if my calcium is high, shouldn't my PTH be LOW most of the time?
EDIT: I should also add that my endocrinologist ordered a sensamibi scan earlier in the year but that also was a negative. He was treating me for low vitamin D also but that didn't help.
Please tell me I'm not crazy (or if I am crazy, be gentle ). I'm about to try to set up with another surgeon, but I don't want to go through all that again and be told there's nothing wrong yet another time...
I am going through something simular to what you are. My calcuim level first came back at 17.6 and the second was 16.5 and it has not drop below 15.6. My levels are way to high. My Dr sent me to a surgen too, saying I had Parathyroid tummer, well surgen did a nuc scan and said there is no tummer and my glades and levels where normal...well next they tested me for lemphoma..that came back neg. They did find cyst in my breast 5 to be exact and cyst on my thyroid. My mom had thyroid desease and now has stage 3 breast cancer, but I can't seem to get them to listen to me. I'm in pain every day. They just keep telling me that they don't know why...well I go again tomorrow to dr....I am going to demand an answer...don't give up and be pushy and if they don't give you answers get new dr...I'm going to..good luck.
Last edited by pooh68dl; 04-29-2013 at 06:32 PM.
Reason: spelling mistakes
Thanks for the replies Turns out you were right. After posting that I booked another surgeon for a second opinion. This one had an ultrasound machine right there in her office and found a tumor within about 20 seconds. She then ordered a sestamibi, which confirmed it. I had the tumor out this week and I'm doing well So for anyone else who is reading this, NEVER LISTEN to a doctor who tells you that a negative ultrasound means anything at all!
I'm still really mad at the first surgeon... I could have avoided several months of fatigue, depression and terrible bone pain if he had actually known how to do his job. On the other hand, I'm glad that the person who ended up doing the surgery seemed to actually know what they were doing. Who knows, the first guy might have ended up taking out the wrong gland
kselibrary76, if you're worried about scarring you might want to check out silicone scar sheets once the stitches are gone and it's healed up a bit... you can buy them on Amazon, and you just stick them over the scar when you're asleep at night and within a few weeks it has softened and faded. I've used them before on other scars and they're really good.
I hope that all made sense, I'm still on a bit of vicodin from the surgery
I hope this makes you all smile. It cracks me the heck up.
I go to see the endocrin for my post surgery check up and he looks at me and says, "K! He did a phenomenal job. That scar is so deep in the deepest crease of your neck you can hardly see it." I suppose that was a compliment. I was choking with laughter.
I still have a little bump to swallow around, or that is what it feels like, and still have some minor bone pain (they think that is because I got osteo in the spine from all this and it is affecting my legs, I have piriformis syndrome now), but all in all...SUPERB. 6 years. SIX FREAKING YEARS I tried to get someone to listen.
I'm so glad you are all feeling better. I look forward to feeling more and more like myself.
Vit D is low, so we're working on feeding those bones