Thyroid eye disease with Graves’ disease and after thyroidectomy

[Laineymacd]

Please tell me about your experience with thyroid eye disease and Graves’ disease.

Diagnosed last summer with Graves’ disease ,which couldn’t be controlled with meds .

Had throidectomy a month ago , but am troubled with the eye disease caused by Graves .

What are people’s experience with the eye disease , have double vision at times and have retracting eyelid one eye

Any info would be helpful!

[Slavemistress]

Hi Lauren..

I am experiencing exactly the same as you. Even my Graves and thyroidectomy is our stories alike to the 'T'. I need answers as well. We'll have to keep researching or find someone who can advise us. Good luck and I hope you feel better soon. Hugs from South Africa x

[redeyes2]

HelloLaineymacd and Slavemistress;

i just posted a post about my having my second decompression surgery for Graves Eye disease. Now both eyes have been done and look and feel much better. Fell free to ask me whatever you are experiencing. I will still need to get the lid retraction surgery. if either of you or anyone on here has had that, I would love to hear about it.

Best wishes to you both. Red

[Helenca in reply to redeyes2]

I just joined this group from Asheville NC, USA. I had RAI 35 years ago and after 32 years suddenly developed thyroid eye in right eye. Looked like Igor. I had been bouncing around among thyroid meds for many years, and the TE apparently came from going suddenly from 1 grain of NDT (38 mcg t4) to 100 mcg of levothyroxine t4. My eye doctor put me on IV STEROIDS for 3 months, and it brought my eye back down a bit,

but since then I have terrible insomnia. Now trying t3 only. I declined the decompression surgery, as it scared me, but I did have an eye lift that worked to pull my lids off my eyes. Tell me how terrible the decompression thing was?

[redeyes2 in reply to Helenca]

Sure Helenca, I am in SC and I love Asheville NC! My thyroid levels stay at normal as long as I do not eat anything with high iodine. I may have had Grave's much longer than I realized. The cyclopes eye is what I called mine. One eyeball was 35 mm out of alignment and the other about half that. Dec. I got the 1st eye decompression, I was pretty nervous about it, because I knew no one that had it done. My dr. had reassured me he had done many and had never had any turn out bad. I would highly reccomend someone that specializes like my dr does. It is a complicated operation, but no scars and after two; no regrets.

I actually felt pretty good and went off pain meds after 4 days. I was driving by the 5th day. He sd he could do both eyes at once, but I didn't dare to just in case. I got the 2nd eye done in July and he had told me the 2nd one usually is a bit more painful and may be slower healing. He was right. It was painful for about a week and had a hard time getting my eye to focus. Even so, I still only did pain meds for 4 days as I do not like the groggy nausea I feel when on them. I see him in Nov. and hope tp get retraction done during Christmas break.

By two weeks after my eyes finally looked the same size! I still need to get the retraction done on the first eye, because it had pulled out a lot and stretched the skin. I have very little double vision now. Basically only when I need to cut something or draw a straightline. I used to have a very hard time reading, it was a slow process as i had to determine what to read when it is doubled. I am glad that is almost totally gone. So.. I would say abut 80% better on that. O/w 95% better all around. I'll saw 100% after the retraction.

For me, I am glad I got it done; I was embarrassed when I had to take my glasses of for any reason... as I didn't just look older because of it; I also looked like a cyclops. ugh!! I am looking much better! I still wear tinted glasses as I am waiting til the retraction is done.

LMK what u decide... best wishes... or if you have any other questions, just ask.... Red