oh, gawd, Dana, you just gave me chills in what I went through 5 yrs ago!!!!!!! Oh, I can so relate!
I took ill 5 yrs ago and like you, did the rounds with rhumetologists. I went through the anti-DNA/anti-ANA, blah blah blah tests to test for lupus and such (my sister does have lupus). My anti-DNA is fine but like you, my anti-ANA is high. Mine was at (gawd, I'd have to pull my files/records) something like 1:64 then 1:120. I had my annual physical earlier this week and asked my primary care to run my anti-ANA again since it's been so long since the last reading was done. Waiting on the results now, so more than happy to share with you it's outcome as soon as I get the results. I know they ruled out Lupus for me (since the anti-DNA was fine) but originally, the 1st rhuemetologist just diagnosised me with fibroymyalgia, secondary to what my original illness is (pre-AN). BTW, I had the left thyroid removed back in '98 for a benign growth and she also ran my TH labs this week to make sure it's still functioning fine... doubtful there is a correlation between TH and anti-ANA readings
I know that sounded mumbled, but let me get my anti-ANA results this week. If still showing elevated, will ask my primary (she's been with me for just over a year now so wasn't around at first elevated levels) to get her thoughts on it... .she's been guiding me through my AN journey and I completed trust her judgement.
Phyllis