[reneedrew]

in reply to: eye and skin trouble #1071772

I was diagonosed with Graves approximately a year ago. I gained about 40lbs after I was put on methimazole. After trying to deal with that I noticed my skin was dry and had a rash similar to eczema on my upper arms. THEN about 9 months ago I started having trouble with my eyes, it was somewhat gradual. First I had one eye look like it was drooping, then the other one started bulging, massive watering and pain from the pressure behind my eyes. I was sensitive to light,air, everything. I went to an opthamologist and got and MRI since I was also having double vision due to the pressure. In the MRI it showed that there was a lot of fluid and fat being deposited into and around my eye sockets:( The opthamologist informed me that we would have to wait for the swelling to go down wich could be quick or take a lengthy amount of time. He didn’t want to prescribe steroid eye drops due to the side effects and really didn’t give me other options. I was/am very frusterated with that since my eyes look horrible. Its been 6 months and I’m due for a check up to see if the pressure has gone down. I would like to have surgery to restore my eyes for aesthetic reasons but the opthamologist told me if they do it too soon it could cause scarring and more operations could be necessary. I’m at a point I just don’t care, i just want to get back to normal somehow someway. The sad thing is I was never even told by any of the doctors about thyroid/graves eye disease. I would reccomend to anyone to get on it asap when your eyes start acting up with Graves disease. My swelling has gone down somewhat but there’s still bulging,etc. I opted out of RAI at least at this point. I then learned that even if you do get it the eye disease could flare up anyway since it acts independantly even when you have your thyroid under control. Its amazing the lack of information out there. I went to an endo at one point and was told that I either had to have the thyroid out or radiated and those were the only logical things for me to do. I didn’t go back to him and have discovered that in my community the docs are not knowledgeable about this disease. I tell them stuff they don’t know about it all the time. All this to say I’m frusterated and don’t take the eye problems lightly. And does anyone out there have any advice for myself? Thanks for your time.

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