Post count: 305

    You can have a thyroidectomy after RAI, and there is some suggestion of RAI after thyroidectomy. The object of both of these plans is to be sure all of the thyroid is totally removed, no remnants left. I had a thyroidectomy and it did cause the eye disease to burn out pretty rapidly but I also had intravenous and oral steroids as well as orbital radiation as my eye disease was severe, eventually requiring many eye surgeries to repair the damage. There are some studies showing benefit to rituximab. Bottom line, the eye disease seems to burn itself out after 18 months or so, and steroids, thyroid removal, etc do appear to hasten the process. Oral steroids are a great help in reducing the inflammation until it all stops progressing and removing your thyroid would eliminate any thyroid tissue remaining that could start chugging out hormone again. I understand how you feel, I have been there and it is terrifying. In the end, find the best oculoplastic surgeon you can as well as a pediatric ophthalmologist for the double vision. These docs can repair the damage done once the disease has stopped getting worse.