DB-About the Sestamibi - Osteoporosis Message Board

osteoblast · 05-22-2008, 09:52 PM

DB-I did this as a separate thread because I wanted to be sure to get your attention before the sestamibi. I just spoke with the woman I know locally who has hyperpara. She has had elevated ca and elevated pth. When she first had her sestamibi locally-nothing was shown. Then her doc sent her to Seattle to where I go and to the ENT I am seeing, that ENT sent her for another sestamibi at the major med center. Again, nothing showed on that sestamibi. But , then she was sent for a neck u/s with an expert radiologist that the ENT works with and the parathyroids were seen-1 good, 1 bad, 2 questionable. This is the ENT who does minimally invasive parathyroid here in the NW. She has been at this for over 20 yrs. and she works hand in glove with the radiologist. Sooooo-why I am telling you this is that sometimes the sestamibi does not reveal the adenoma. Maybe you can talk with the radiologist about this kind of thing happening and what they can do about it. Let me know how it goes!I am always hoping the best for you

DesertBloom · 05-24-2008, 01:18 PM

Hi Osteo: I had the sestamibi at the beginning of the week and it was negative. I can't repeat it because of my insurance, so I guess I'm back at square one. In my case my PTH is low and has never been elevated; just the cal, 125 is high and the D 25 low. Because my cal is higher than it has been and I've had some heart probs, the Dr wants me to stop all D. She also wants me to stop the Forteo now, but I'm still thinking about it.

I would be really interested in your friends situation with all this, but it sounds different than mine, because she has the *classic* elevated PTH which goes along with a adenoma.

I'm not feeling very good today, but I'll recover. The weather has been really strange with strong winds and rain, and then driving through that yesterday. They had a tornado close to the hospital I go to, so that was strange. I wonder if weather can really mess with your head. You have to deal with weather like this all the time right? how do you do it?

If you get a chance read my post to Taape about Denosumab, and Forteo... I was really surprised about my Drs remark on Dmab. I had a dxa yesterday so I'll find out what that is in a week or so. I couldn't get the results from them yesterday because my test was included in some study they are doing there.

Take care...

mmee · 05-24-2008, 03:41 PM

desertbloom
I am so sorry to hear about your negative sestambi. I was just wondering where is your calcium and pth normally running numbers wise? Do you have any swelling of your neck?
mmee

DesertBloom · 05-24-2008, 04:20 PM

Hi mmee: My labs have been all over the place for the last two years, and of course they aren't the classic type, i.e. high cal with high PTH, or low D 25/D125.

Here's the latest:

Ionized Ca: 6.8 ref range (4.8-5.5) at my lab
D 125: 85.6 (25.1-66.1)
D 25: 6 (25-100)
PTH: 9.0 (11.1-79.5)
PTHrP: <0.2 (<1.4)

I'm on Forteo which elevates Ca, and D 125 by 19% and lowers D 25 by 19%. With this said, my ionized Ca was slightly elevated *before* I started the med. I decided to go ahead and take it anyway, and have these levels monitored closely. I'm ending my course on Forteo shortly.

About 3 weeks ago when my Ion Ca was at 6.8, I was having moderately severe chest pains that radiated into my left arm and over my left shoulder. Along with this I would get real dizzy whenever I lied down flat. I have to put many eye drops in every day and lie down to do that, and every time I would lie down the ceiling would be flying around in circles. I also had some dizziness if I would bend over suddenly but it would go away within a couple of seconds. I thought about going to the ER about 6 times, but never did go. I've never had to go to an ER for myself, and I guess I just have a very strong phobia against it. I got a real good lecture from my Cardiologist and PC about this, but the pain has gone away now. I also have the muscle twitching around my mouth/eyes, memory probs, and always exhausted, with horrific bone pain, but only when pressure is applied to that bone.

The Cardio did a 24 hr halter which showed a very large number of PACS, and he said the hypercalcemia explains this and the pain/dizziness. My father died from a heart attack at the age of 56, and his Cardio told him 3 weeks prior that everything was fine. I'm not sure why I just added that info on my Dad, other than it's been on my mind.

The sestamibi didn't show any adenoma, but then my PTH has always been normal or low, never high. I've been tested for many types of cancer, sarcoidosis, granulomas, etc and nothing was found. I do have 2 thyroid nodules, 5-6 breast cysts, and 2 ovarian cysts. The cysts are benign, and the thyroid nodule is too small to biopsy. I'm seeing a mineral metabolism specialist at a Univ Hosp for my Osteoporosis and this Ca prob. She can't figure it out and wants me to see someone else, which I haven't done yet-I guess I'm stupid

Oh, and no I don't have any neck swelling.

I've been following along with all your battles and hope you find out whats going on, I really feel for you with this type of problem that seems to be impossible to dx or solve.

mmee · 05-24-2008, 05:40 PM

desertbloom,
I am so sorry too that you have not gotten answers yet either. It is so frustrating, and I know for me the heart is the scariest symptom that I have. None of them are fun, but the heart is the scariest for me.
Alot of our symptoms do sound the same. I also have cysts around the body that are being found. I guess they are benign, because no one is looking into them.
Good luck and I hope that they can figure it out for you soon.
mmee