Hi ,
Thanks Kimberley, Shirley and Laurel for your replies. Both my Endo and Opthalmologist have both said that with my high antibody levels it is not the right time to be considering the surgical route until they settle down. They have both described my Trab as excessively high (range here is less than 1.0), my last reading was 18.8, Tpo is 121 (range here is 0 -35) and hasn’t really changed significantly either way for at least the past year (Both were a lot higher while I was hyper and before TT). They both feel that I am still in the active or “hot” phase as I still get varying degrees of swelling, redness and pain. They have both stressed to me that the Radiation was only to stop my eyesight deteriorating further and that it would not stop the swelling etc. Both together with the oncologist have said it may take 6 months for the Radiation treatments to take full effect. (Let’s face it with all the complications and nearly every possible symptom of Graves’ affecting me, I am probably the one patient that will take the full 6 months). (I keep telling everyone that I am “special” to be the poster child for Graves’ as it is quite common for me to hear from my Medical team that I drew the short straw when it came to Graves’ and that they have not really had another patient that has been on the same journey as me – at every Endo appointment he usually has a new Doctor or Student that he wants to show pretibial myxdema to and if I had a dollar for every time that someone says “I have read about it, but never seen it in real life”, I could retire tomorrow. I don’t mind though, anything that promotes awareness and education about Graves’ has got to be a good thing). I saw another Opthalmologist last December before I had the radiation treatments as it was such a hard decision to make whether to have the Radiation or not and he also confirmed that Radiation was the best route to take. (I still am not sure whether it was the right decision to make, but it’s done now so hoping I won’t regret it later in life). In the last 4 weeks, I have had to start wearing any eye mask to sleep in as I am having trouble closing my eye lids. I will be discussing your comments with both my Endo and Opthalmologist so will let you know what they say. Maybe this is an area where treatment in Australia varies from what is accepted for you in the US? Have a great day all.
Cheers
Deb
