[lizlair]

#1019356

Great forum. Although I have been monitoring the posts for several weeks, this is the first time I have posted a comment. I was diagnosed with Graves in August of 2007. For a long time, I thought the weight loss, pounding heart, and hand tremors were just stress related. After my ankles started swelling and an abnormal EKG, the cardiologist ran some blood work and. . ta-daah, discovered that I was hyper. I started treating with an endocrinologist. For the past two years, I have been taking varying levels of methimazole with varying degrees of success. For a long time, I have had problems with my eyes—red, tired, and dry. Again, I thought it was due to allergies and work. About a year ago, I woke up with swelling around my right eye and started having real problems with double vision. I then noticed that one eye appeared larger than the other. Kinda reminded me "Mad-Eyed Moody" from the Harry Potter books. Four opthamologists later (in the same office) and three misdiagnoses, the doctor started treating me for blepharitis. (Mainly hot compresses, eyelid scrubs and drops) After multiple questions, the last doctor finally admitted that I may also have TED. BUT, I was informed that no one in the area treated the disease. Finally, enough was enough, and I was able to get a consult at the Mayo Clinic. Currently, I am treating with a specialist and we are trying determine if I am in the "hot" or "cold" phase of the disease, or somewhere in between.

After almost two years of methimazole, my Endo is repeatedly urging RAI; however, I am waiting to determine the phase of the TED. Based upon my research and these postings, I know that RAI can worsen the TED. I return to Mayo the first of June with an appointment with my Endo soon thereafter. Depending upon the results, I may consider RAI this summer.

Thanks for letting me vent. It is frustrating at best. By the way, anyone out there have any suggestions for reducing eye redness, swelling, and irritation. Despite the scrubs, Optiva drops, elevating my head, using preservative-free drops during the day, and gel at night, I feel like a red-eye demon most of the time!

[Jake_George]

#1071120

RAI and TED,

There is a temporary worsening for TED symptioms after RAI for a percentage of people. However, if RAI is taken with oral steroids, the chance of an increase in TED is the same as anyone else. In other words, when steroid were used with the RAI there was no noticable increase in TED symptoms.

So if you are to consider the RAI talk to the nuclear doctor about steroids with the RAI to protect your eyes from a temporary worsening of symptoms.

It is sad that you do not have any doctors that treat TED in your area. I was kind of in the same boat here in Melbourne Fl. There were many talented doctors that knew what TED was and how to diagnose it but I had to drive 200 miles to Miami for treatment and surger.

Life will get better. Use your drops and keep the corneas moist and that will help a great deal.

I have Graves’ and life is good.

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