Now I'm REALLY confused!
I'm on the wait list for thyroidectomy, which I don't really want, but having relapsed a couple of years ago, this is the first time my thyroid levels have come under control, and I guess they want to jump on the opportunity. Perhaps understandable - my body doesn't seem to know what to do with thyroid drugs - I can't tolerate a high enough dose of carbimazole, and have needed a consistently high dose of PTU to get any control (have more than once been accused of non-compliance with medication!!). ... but I feel under a lot of pressure to do it.
Since the end of last year, I've been suspected of some sort of PTU-related lupus syndrome (ANCA positive), or possibly PTU-excerbated "tendency" to SLE and/or some arthritic condition - and have always had, or supposedly had, active eye disease even with "normal" thyroid levels. I also feel quite poorly even with so-called "normal" levels (only, of course, that's not allowed) ... and have been told that the reason my eyes are still bad must be because I still have some antibodies, even though thyroid normal. Endocrinologist, trying to push me towards the op, has told me on a couple of occasions that my antibody levels are "as high as he's seen in any patient, EVER". Now, as far as I am aware they've only tested my antibodies once, 7 or more years ago - and at the time I was doing a lot of research, and although I don't recall what the levels were, I do remember being puzzled that, compared to many, they weren't really that high.
Anyway, not for the first time, it feels rather as if this doc saying just about anything to get the result he wants, and for a number of reasons I'm unconvinced that what I'm experiencing now with my eyes is Graves-related. I've had joint and eye problems that predate the Graves diagnosis by decades ... and this just isn't the same. Thyroid-wise, I feel OK most of the time, but still have sore joints and periods of obliterating fatigue.
So, I picked a week when I'd been suffering very badly with my eyes, and had a thyroid screen done with Blue Horizon. Results came back all within normal limits (currently on 150mg of PTU) - AND THYROID ANTIBODIES NEGATIVE!
If anybody can help interpret these results, I'd be ever so grateful .... Does this mean I'm in remission ??? But mainly, I'd really like to know - IS IT POSSIBLE TO HAVE GRAVES EYE DISEASE WITH NEGATIVE ANTIBODIES - - or is this likely to be due to something else ?
THYROID PROFILE 2
TOTAL THYROXINE(T4) 83 nmol/L 59 - 154
THYROID STIMULATING HORMONE 1.07 mIU/L 0.27 - 4.2
FREE THYROXINE 13.1 pmol/l 12.0 - 22.0
FREE T3 4.8 pmol/L 3.1 - 6.8
Thyroglobulin Antibody <10.0 IU/mL 0-115(Negative)
Method used for Anti-Tg: Roche Modular
Thyroid Peroxidase Antibodies 6.0 IU/mL 0 - 34
Method used for Anti-TPO: Roche Modular
Thanks so much!