[Deb1128]

#1017838

Hi everyone I am new here but not new to thyroid or graves disease.I had my thyroid removed in 1983 and have graves disease. It wasnt until 2000 that I learnt I could have my eye lids lowered, I did have that surgery and it helped alittle . Over the yrs my vision got worse and worse and each time I would just get new glasses . It wasnt until 3 weeks ago I ended up in the ER in such pain in my right eye and the vision was so blurry. The doctor I seen was just going to send me home with more tears plus until I pushed him telling him I was in alot of pain something was wrong. I got to see a specialist the next day, who gave me the impression I had Glaucoma and was treating me for that . Now 3 weeks later in that same dr.s office I seen an other dr. for new glasses again , she was very rude but after I snapped back at her she wanted to know why I was there that glasses wasnt going to help that this is something I have been dealing with for a long time with the graves/ thyroid . I was so confused and lost for words I didnt really know what to say . Now she is talking of sending me to Toronto Ontario ( I am from Canada ) to a Orbital surgen for surgery . Anyone that can help me in this please do . I have been trying to research this online and trying to find out as much as I can . I have blurried vision and double vision . my eyes are bulged , even after the lids were lowered . Please email me at novelcookie@hotmail.com please put in the subject box graves disease as it will go to my junk mail and I just delete everything out of there . Thank you so much for all your help .Deb

[Bobbi]

#1061250

Since they are sending you to an orbital surgeon, and with some of your other symptoms, it sounds like the doctors are now treating you for thyroid eye disease (TED). TED is an autoimmune disease associated with Graves. When it occurs, our eye muscles are attacked (for want of a better word) by the antibodies, and they get bigger, and stiff and swollen. This pushes our eyes out (bulging eyes) and can also cause double vision. Pressure can develop on the optic nerve which sits back in among those muscles and can also limit our field of vision. Orbital surgery can remove some of the bone in the eye socket to make more room for the bigger, stiffer eye muscles, and can improve those vision issues, and save the optic nerve from pressure. Sometimes after the orbital surgery, if that is what they are planning, we develop double vision, which can be fixed by a much simpler surgery. Anyway, if you research thyroid eye disease — or thyroid associated opthamopathy (it’s more formal name) — you might get more information about what is going on.

[Deb1128]

#1061251

Thanks for the post bobbi, I already have the double and blurry vision there is alot of nerve damage its like 75% in the left eye and 50 % in the right thats damaged , the presure is still good .Thats what the field test have shown still waiting for the cat scan . I have that done on July 25/11.Then back to the specialist in Aug. see what there going to do. But your talking about two surgerys one for the eye and one for the vision ?? Once again I am learning something new . You would think dealing with this for 28 yrs I would know as much as the doctors when in fact I know very little .

[sportnut2]

#1061252

I am also new to this board and am hoping for the best for you Debi. I was wondering if Debi had her thyroid removed many years ago, is it common for TED to show up this many years later? I am trying to help my daughter understand Graves as she was recently diagnosed and I was not aware that the eye issues could crop up even many years after the thyroid is removed. Is this common?
Thanks!
Suzanne

[snelsen]

#1061253

Hi Suzanne, I am not sure how common it is, but it seems common to me now! I have Graves’ when I was 21-22 years old, and got TED (which I had never HEARD OF!) when I was 74 years old. And I got (and still have ) TED with a lot of eye issues. I have had five eye surgeries in the past year(counting each eye as a separate surgery.)
Hope you never get TED.
shirley

[Author]

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