[vdoroshenko]

in reply to: Prednisone again? #1180603

Hello,
My eyes started swelling in October 2009, but I was not diagnosed until January 2010. At that time I was diagnosed with Thyroid Cancer and Graves. In February 2010 I had total thyroidectomy following RAI. Right after RAI my eye swelling and vision got worse, but that was predicted by my ophthalmologist (one of the best in this field). Therefore I was put on steroid right after that for a few month. A few weeks after I stopped taking steroid, my vision got worse again and then I started losing colors. After a number of conference calls between my eye doctor and endocrinologist, and after reviewing all existing in the world research papers about this topic (I got it from the medical librarian) decision was made to put me on 10 orbital radiation treatments following steroid. The good thing my vision came back completely by the end I finished radiation, the bad thing I had to be on steroid for another 3 months after that (mandatory). Yes, my face got ugly, my curly hair became strait and dry forever, I gain about 30lb. My co-workers stopped saying “hi” because they could not recognize me. In addition to that my TSH stayed undetectable until October 2012 and my medication does was changed probably 8 times. But all of these were done before orbital decompression surgery to stabilize my eyes. I had orbital decompression in June of 2012 and when my TSH got more or less normal I finally had my upper and lower eyelid surgery in April 2013. You can’t do this last surgery if your TSH out of range otherwise swelling will come back (from my surgeon experience – also one of the best surgeons in this field). Last surgery recovery took some time, but after 3 years of “moon” face and ugly eyes, I started getting my look and face back. People that would not recognize me for some time are saying “hi” to me again. It wasn’t easy, but I was patiently taking steps suggested by my doctors and finally I see results. Graves need to be treated. Please let me know if you need some specific information about medication, surgery or anything else.

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