Sophie, I am so sorry to hear no one is listening to you. I brought the first doc six medical journal articles where folks with parathyroid adenomas had low PTH levels. My highest ever was 26, most of 'em were 18 or less.
I traveled out of state twice for consultations with those that were supposed to be experts. One told me there was nothing wrong, despite their lab tests showing there was something going on. The other thought there was a 90% chance of having the adenoma and when they operated, sure enough, there was the tumor, and a very "productive" one at that. Why the adenoma was producing lots of hormone yet my blood tests never showed it, I'll probably never know.
I'd recommend getting a consultation with the doc on this website, Dr. Lupo, paying the fee for the consultation with the parathyroid.com doc, and having your doc send you to someone, possibly even the Mayo Clinic. Get the three opinions and then decide with path you want to pursue. Remember, medicine is still, at best, a practice, and it is up to you to advocate for you.
Oh Maria, I am so happy for you!
I am still fighting this! I have had FOUR ionized calciums in a row come back high at 1.37 (1.17-1.32) and calcium at 10.8 but since PTH is only 25.4............NOBODY will help me!
Any suggestions?
Sophie
I am so happy your feeling better!
And, the docs pulled a 2 cm parathyroid tumor out of my neck. Nearly 2 days post-op I feel 10 years younger and the lump in my throat is gone. I'm still feeling the effects of the surgery, but am really glad that thing is out of me.
Finally an answer, I'm scheduled to get a parathyroid adenoma removed soon.
I went back to the one doc with medical journals in hand and to his credit, the doc read all of them, read the test results, then scheduled me for a CT scan. They found the adenoma on the CT scan by using Mayos scan results to drive their search.
It's a big relief for medical science to prove you're not crazy due to mental illness, but due to an "easily" fixable problem.
The visit was a waste of time. The doc saw the low PTH level and referred me for cancer evaluation.
I told him about several medical journal articles with "inappropriately normal PTH" and he asked me to forward them to him. I've heard nothing from him since.
The endo doc wanted all sorts of tests, including TB. I declined. I went to the Mayo clinic. Not cancer (phew), but take estrogen. I took it for three weeks, gained 7 pounds per week, and am back to my pre-hysterectomy weight. I dumped the estrogen and have lost 2 pounds per week since, but still, no answer.
One more bloody test (yep, a blood test) tomorrow and I should have a real answer next week. BTW, I did find out one is not supposed to eat or drink products with calcium before the test, now why didn't any docs tell me that???? ARGH!!!!
Please post what happens with your visit and the final outcome. I also have high to high normal calcium (10.2-11.4) with inappropriately normal PTH (20-30) for two years now. Also have GERD, hypothyroidism and multiple joints showing arthritis bilaterally. Had a negative sestamibi scan. Also have low Vitamin D (19.9-24). Doctors (GP, Endo and otolaryngologist) say it is not pHPT.
Sophie50