Despite having most of the parathyroid problem symptoms listed on the various sites, the feelings come and go, and apparently, so do the numbers in the blood:
Test Score Range
Calcium 11 8.5-10.3 (my range is normal in Jan, 10.5 in Oct, 11 this month, who knows what it'll be on this next test)
PTH 12 10-65
Vit D 31 20-100
I see the doc next week, after yet another round of blood tests. Fortunately, the doc is a good one and understands plus appreciates when his patients become knowledgeable about the various diseases, then does something about them instead of going "woe is me" all the time.
Now for the fun part, the waiting to find out if this is a side effect of MS, menopause, parathyroid issues, or the ubber-rare milk-alkali syndrome (from drinking it, not chewing on the Tums).
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.
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!!!!
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.
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.
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.
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