Elaine,
Even though I haven’t posted before, I have often visited your site for answers. I just wanted to tell you how grateful I am for all your tireless research and advice.
When I was diagnosed with Graves 17 months ago, my first endocrinologist recommended I have RAI treatment. My eyelids were swollen and bloodshot. I did some research on the web and decided to stay on methimazole.
After a few months, as a result of a change in my primary care physician’s medical group, I began seeing a different endocrinologist. He said that because I had a high TSI level ( my TSI had increased to over 500, although my T-4 was within normal range), that I should have my thyroid surgically removed. He told me that my Graves eye problems would very likely get much worse, and that I was putting myself in danger of losing my eyesight unless I had my thyroid removed. I was scared. But fortunately, by that time, I had read your book and realized that some of his other opinions on Graves issues were inaccurate. So rather than blindly follow his advice, I decided to get an MRI and also seek the opinion of an ophthalmologist. The ophthalmologist confirmed that the eye disease runs its own separate course and the MRI results showed that I did not have swelling on the optic nerve.
I have been reducing my methimazole dose gradually and my free T-4 dropped to 112 on my most recent test, which was based upon 1.875mg a day. I intend to reduce my dose to 1.25mg for the next six weeks, and I am hoping that I may go into remission in the near future.
Without your efforts, I wouldn’t have been as proactive about making my own decisions about my treatment options. The Q&A’s on your site have been tremendously helpful and have answered so many questions that I have had throughout the course of this disease.
Warmest regards,
Coco