THYROID EYE DISEASE!

[19-57]

THYROID EYE DISEASE!

HELLO,I have had TED for over 20 yrs i hav a mild to slightly moderate case in 1997 i had RAI and then in 1999 my eyes got a little better but still bad i wore non RX eye glasses just to hide behind so then i thought i would have the OD surgery back then i chickened out and so ove the next several years my eyes got even a little better, but needless to say still disfiguring and all of a sudden my left eye is starting to bulge or feels like its open more and looks that way and its mostly my left eye so i went to a ocular plastic specialist down at UIC - chicago,il and i may have surgery just on left eye not right my eye measures 22 or 23 on left and right is 17 and that eye does not bother me so he wants to just perform a fat removal instead of bone on left eye so we will see going for CT scan next week, now i just had thyroid labs the other day and this time i asked for antibodies test or TPO and the specialist wants T3 T4 free and total now ive always just been on levothyroxine 100mcg i do not currently have an endo anymore need to find a good now, i just get my labs checked by my primary dr labs are normal thats what they say and i have always felt really good my eyes are stable even though one is bigger and noticable thank God for makeup!! i just have not been feeling well lately and my eye is bigger so something is going on sorry for being so chatty but i am nervous about possible surgery but i know i am in the right place for this and i let the lord handle this He brought me to it he will get me through it!!! thanks for listening, there is one more curiosity i have, has anyone experienced the Antibodies attacking the eyes again after having the OD surgery and then there eyes started to bulge and retract again??

[Fruitandnutcase]

Gosh, I'm so sorry to hear about your problem. I can't help with that but I have Graves' disease and went completely gluten free almost two years ago and have massively reduced my thyroid antibodies, I started doing it as an experiment because I'd heard of good results people with autoimmune underactive thyroids.

In that time I haven't knowingly eaten anything containing gluten and my antibody levels have absolutely plummeted, I still get a number when I test them but it is only a tiny amount. It might be worth trying that to see if it can help reduce your thyroid antibodies, my thinking being that the fewer antibodies you have the fewer there would be to attack your eyes.

Good luck anyway, hopefully you will hear from someone who has had the operation and can put your mind at rest.

[graves60 in reply to Fruitandnutcase]

hi thanks for your reply! i have seen a ocular reconsrtuctive plastic surgeon and he doesnt look at how high your tsi antibodies are! he just wanted to see e again in 3mo and wait to see if my eye irritation would subside he even gave me antihistimine drops , he wont do any surgery until eyes are stable and mine are now but my left eye went crazy a few months back and i have had this eye disease since 1995 probably no OD surgery just lower lid lift because of lag in that eye but it is somewhat bulgy so we will see what he says when i see him in a few weeks.

[DeeD123]

Hi. I am a newbie here. I have hashies and TED. I have had orbital decompression on both eyes. They waited 3 years for my eyes to stabilise. Overnight stay ,minimal discomfort but differences in my life were fantastic. I was warned it could happen again but highly unusual. Hope that helps

[graves60 in reply to DeeD123]

hi my daughter is 22 and has pcos and hashis and she is a smoker i told her she is more prone to get eye disease! i have the graves and eyes since 1995 and i used to be a smoker and i do believe my eyes got worse but back then my dr mentioned that it was not good but of course i did not listen i quit 12 yrs ago and eyes got a little better.