[mbuwa99]

in reply to: TED-Second Radiation ? #1066267

Thanks, I totally understand they are two different diseases but related. I had the RAI on my thyroid in Oct 08. Then was diagnosed with TED in April 09 and had radiation on eye orbits in May 09. Things had been stable up until last 2 months and we started noticing the left eye wandering on its own and some swelling. The opthamalogist confirmed the swelling this week – while it is bothersome it is definitely nowhere near the initial bulging hence; I am hesitant to anything at this point other than get a second or even a third opinion. I see opthamalogist every 3 months and endo every 6 months (although I have my blood work done every 6-8 weeks per instruction). I did make an apptmt with endo to discuss some of these issues and to get some clarity. I believe that along with the knowledge I’ve just gained from this forum will be helpful. I am grateful to have found this forum and for all of your input.

[mbuwa99]

in reply to: TED-Second Radiation ? #1066265

Thank you so much for the replies. My husband and i are surprised by your answers. Neither my endocrinologist or opthamologist told us that this was a temporary fix. In fact, I specifically asked my opthamologist repeatedly, if the eye bulging can happen again and was told more than likely not; and he had never seen it happen a second time. (While I have my left eye swelling again it is not bulging and he suggested another round of radiation). I am interested in getting to the "cause" of the swelling while I feel the opthamalogist is treating "symptoms".

I am obviously still in the hot stage so I’m surprised he would want me to move forward with the double vision and eyelid surgery-I sure don’t want to awaken and sleeping antibodies with surgery and have to go through another round of bulging eyes and radiation. There is only one opthamalogist in the city where I live who deals with TED, time to look outside my city for second opinions….Thanks again, your information; it has helped me make a better informed decision.

[mbuwa99]

in reply to: Graves’ Eye Disease #1066476

Wow, I am so glad I found this site. I was diagnosed with Graves in Sept 08 followed by RAI in Oct 08, I kept chalking all my symptoms up to hot summer in Oklahoma, must have a stomach bug, post-meopausal so I have dry skin, etc. Obviously my fatigue got so bad I couldn’t lift myself off the floor and decided it was time to see a doctor. Within 24 hrs my doctor called with the diagnosis. I thought once the radiation was done I would be okay if I stayed on my meds. In April 09 I went to work, turned my computer on and 3 hours later couldn’t distinguish 5, 6 or 8. Scared me to death, I thought I was having a stroke or brain tumor. Went in to urgent care they sent me for brain MRI which was negative-but still had no answers. Went to optomotrist who diagnosed TED and called my endocrinoligist that day. I had radiation on my eyes in May 09 as the swelling was so painful I couldn’t do much. It has been almost a year since my "thyroid storm" . The opthamalogist says my eye swelling is significantly reduced. But I still have alot of tearing, sensitivity to light and sun, double vision, and my left eye drags behind the right so I’ve been unable to read a book for the last year. Has anybody had the surgery to correct the eye muscle or lid retraction? Am looking for a second or even third opinion, I only have one set of eyes and would rather have what I have than lose everything. Would appreciate any thoughts or experiences. Thanks so much!
MB

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