I was told a few years back that I am low in vit D, as many of us fibromites are. I began taking massive doses of prescript
ion D -- from a starting dose of 50,000 units a month up to 300,000 units a month. Then I switched endocrinologists and the one I am seeing now who is an M.D., Ph.D. is telling me that he is doing the Vit D 1,25 dihydroxy blood test, which is not the one considered the "standard of care" but the one he feels is the test that actually tests the amount of D our bodies are absorbing and using...so he's the doctor right? I go along with it, have the blood work done and he just called me (9:30 pm) to tell me that my D is NORMAL, which it has not been. Oh, I forgot to mention he took me off the massive doses of D and for the past 5 months, I've been taking 2,000 mg a day of over the counter D.
Just wondering, anyone else out there have this experience? This doctor told me that so far, every one of his patients that show low D on the other blood test, the vit D 25 hydroxy, he is now retesting with the other test, the vit D 1,25 dihydorxy and every single one of them is coming up normal.
So my question is...is it all of us that are so low, or are we being tested with the wrong test?
I have to tell you, lately, I am beginning to question a lot of what doctors have been telling me about FM and how to treat it. I am NOT trying to start trouble, believe me, that is not me.
Well, anyway, just curious if anyone else has any input...thanks so much
Miriam