[msjoany]

in reply to: Graves Eye Disease #1075484

I am 52 years old, and I was diagnosed with Grave’s disease in March 2007 and had RAI in May 2007. That was the worst mistake I ever made. Upon initial diagnosis, the only symptoms I had were rapid, unexplained weight loss and constant fatigue. Blood tests and a couple of trips to an endocrinologist made the Grave’s diagnosis, which was confirmed by a thyroid scan. The endo highly recommended the RAI over trying to regulate the thyroid with meds, so I listened to him.

About 6 months after the scan, I started having Grave’s eye disease symptoms, as well as pretibial myxedemia, and extreme swelling in my hands (to the point where I couldn’t wear my rings), feet and ankles (to the point where I could not wear any of my shoes — I had to go out and buy shoes 2 sizes bigger just to have some to wear). I have been on Prednisone for about a year, at gradually decreasing doses, and the swelling in my hands, ankles, and feet is gone, but my eyes have only gotten worse, not to mention the facial puffiness that comes with being on a prolonged dose of Prednisone.

I absolutely can’t stand the way I look now. I was never overly-vain, but I did like to look nice, and used to be rather proud of the fact that no one believed I was as old as I am. Now, my eyes are so bugged out and puffy, I have to wear my sunglasses and reading glasses way down on my nose so my lids don’t rub against them. My face is SO swollen and puffy that I look like a chubby little teddy bear.

My eye doctor does not want to do the decompression surgery because of the risk involved unless my eyesight gets really, really bad (it has dimished significantly since the symptoms started) or unless the optic nerve is threatened by the swelling.

I am a runner, and still maintain my exercise routine, plus eat fairly healthy, and this seems to be keeping my weght under control (thank goodness), but the facial and eye swelling, puffiness, and protusion is wearing me down. Anyone have any suggestions?

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