[craftsbypat]

#1060617

I was diagnosed with graves disease four years ago. I was on methimazole for over two years. I finally went into remission. Shortly after I started getting double vision went to my Endocrinologist and he said my levels were normal and there was nothing that he could do for me that my levels were fine. Told me to go to an ophthalmologist. Two MRI and Five eye doctors later they diagnosed me with thyroid eye disease. This has been going on for way over a year. Been on 30 MG of prednisone a day for four months and also has some IV steroids trying to keep further damage to my eyes. Finally had my thyroid removed three weeks ago. My TSH Receptor Antibody is 208. It was 217 so it is slowly coming down. I have been put on Levothyroxine 150 MCG. As soon as my levels are stable for a while I am looking at several eye surgeries. I know that it has only been 3 weeks but will I ever star feeling normal or at least a little better. Graves Disease is no fun It is hard to stay positive when you have no energy.

[Kimberly]

#1183667

Hello – We have several posters here who have had successful surgeries for TED, so hopefully, they will chime in with their experiences.

Although most patients have TED in conjunction with thyroid issues, TED runs its own course and can occur *before* thyroid dysfunction develops or long after treatment.

You might be interested in checking out the GDATF’s YouTube channel, which has quite a few free videos on thyroid eye disease. Be sure and check out the “playlists” as well, which includes content from other channels.

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

https://www.youtube.com/user/GravesAndThyroid

I definitely understand your frustration. One doctor from UCSD Shiley Eye Institute noted in a presentation a couple of years ago that TED gives whole new meaning to the terms “patients” and “patience.”

Wishing you all the best!

[Liz1967]

#1183668

I have had Graves eye disease for two years. I had a total thyroidectomy six months after diagnosis, was on oral and IV steroids for 8 months and had orbital radiation. I had double vision nearly from the beginning but the orbital radiation did seem to stop its progression so I could wear 8 prism diopters to correct it. I then waited nearly a year to be sure everything was stable and had bilateral orbital decompression surgeries at the two year mark. My diplopia worsened a bit but the redness and chemosis are gone, dryness, eyelid swelling and lid retraction greatly improved, and eyes no longer bulging at all. Now awaiting muscle surgery to correct diplopia because the double vision that was worse postop has improved and continues to improve, so I need to wait until eyes are done changing. If I had it to do again, I would have had the thyroidectomy immediately at diagnosis instead of waiting six months. My thyroid surgeon indicated that most of his Graves patients’ eyes are stable within a year of thyroid removal. Seemed to work that way with me. Give yourself time because you want the eye disease to be “burned out” before starting surgeries. I did not notice things getting better, but they stopped getting worse. It is a frustrating disease but the surgeries correct most of the damage. As far as your thyroid replacement, I was never good on methimazole. I felt bad and levels were up and down. The levothyroxine has been much easier. I was always within normal limits on it and felt better right away but it has required some fine tuning over the past year to get my own optimal dose. The steroids can affect your thyroid levels, they affected mine, so give yourself some time off them to get your levothyroxine adjusted. I am on 88 micrograms 4 times a week and 75 three times, so as you can see, the doses can be micromanaged. Don’t be afraid to ask for slight changes depending on how you feel. Good luck. It does get better!

[craftsbypat]

#1183669

Thanks for the encouragement, I know that it takes time to get the levels regulated. I just get so tired of seeing double. Trying not to get depressed and stay positive is sometimes hard. I have been in IBTC which is a Bible College I have two terms left and to read and write reflection papers are a challenge. At times I want to just give up but I have came to far for that. It is nice to know that there is light at the end of the tunnel. Can someone tell me if your TSHRA is 208 does that mean your graves disease is still active.

[Kimberly]

#1183670

Hello – Lab results are best discussed with your doctor (and should be interpreted in conjunction with the lab’s “normal” cutoff for that particular test), but in general, an antibody result that is listed as being too high out of range indicate active disease. Keep in mind that different eye doctors use the antibody tests differently. Some will use the antibody tests to determine when someone is ready for surgery, and will not approve surgery until the antibody levels are below the “normal” cutoff. Others will proceed with surgery even if antibodies are high, as long as the patient’s visible symptoms have been unchanged for a period of time (usually several months).

Have you spoken to a school administrator about your thyroid eye disease? If you are in the U.S., the Individuals With Disabilities Act of 1997 and Section 504 of the Rehabilitation act of 1973 can provide some relief by allowing accommodations through an individually designed plan. (For example, a little extra time for tests or homework assignments, or you might be able to turn in your papers in a different format).

Hope this helps!

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