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Anyone have or had thyroid eye disease (TED)?

Posted by yesibeleive @yesibeleive, Dec 8, 2023

I'm a young senior citizen now, but I was diagnosed with Graves Disease about 25 yrs ago. Followed by 2 eye surgeries.
Now I'm diagnosed with thyroid eye Disease and have completed 8 infusion @every 2 weeks.
Technically there has been some improvement, but not enough. I was told that smoking effected the Disease greatly so I have quit.
Has anyone experienced similar problems?

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yesibeleive | @yesibeleive | Apr 6 5:20pm
In reply to @donnahanford933 "To “YesIBelieve”, I have a very recent diagnosis of TED though I was diagnosed with Graves..." + (show)
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To “YesIBelieve”,
I have a very recent diagnosis of TED though I was diagnosed with Graves Disease in 1998 when I had a Thyroidectomy due to the debilitating condition caused by taking the medication to reverse the Hyperthyroidism it caused.
I assumed that the surgery removed the Graves Disease process and prognosis - silly now that I think of it. Because I never emphasized this disease with my physicians, I believe that my complaints of vision problems were never connected with Graves.
An opthamologist diagnosed me last fall when I went to see him for blurred and double vision. I thought it was caused by the Cervical Dystonia that I have because the symptoms were most apparent when I was unable to view things correctly due to being unable to look at things in an upright position.
I’m supposed to have been referred to Stanford for further diagnosis and treatment but I have not heard from them since the referral was made over 4 months ago. I am disabled, in a great deal of pain and live alone so I have not made the necessary follow-up call to Stanford's Eye Clinic.
I am very interested in the
symptoms you experienced, your treatments and your prognosis. I am new to this system of communication of the Mayo Clinic. Is there a way to contact you more directly?
I am very concerned about how the progression of this disease will affect my life I.e. will I lose the ability to drive? It is already very difficult to shop in grocery stores etc. In my kitchen, I locate items by touch rather than vision. I can see the general area where an item is - it’s somewhere between the overlapping images I see lol 😝
If you have any suggestions for this newly, I’d be most grateful to hear them 💐
TIA - Thank you in advance ❤️. Donna H. 6/21/24 CA USA

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@donnahanford933
Today is 4/6/26 and year post just got to me. ???
Checking to see how you are doing with TED

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againisay | @againisay | Jun 4 1:24pm

I had bilateral orbital decompression surgery about 6 months ago at Mayo in Rochester. The surgery itself and recovery went well, No concerns there. I have a follow up appointment soon so looking for others experiences and yes I'll speak to Dr. as well.
I feel like I have significant horizontal double vision and it's effecting my daily life. They gave me temporary prisms and while they do help I feel like it is difficult for my eyes to move from close to far and bright light and night driving are challenging too. I guess I'm deciding between permanent Prism and Strabimus. Any suggestions?

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yesibeleive | @yesibeleive | Jun 5 12:18am
In reply to @againisay "I had bilateral orbital decompression surgery about 6 months ago at Mayo in Rochester. The surgery..." + (show)
Profile picture for againisay @againisay

I had bilateral orbital decompression surgery about 6 months ago at Mayo in Rochester. The surgery itself and recovery went well, No concerns there. I have a follow up appointment soon so looking for others experiences and yes I'll speak to Dr. as well.
I feel like I have significant horizontal double vision and it's effecting my daily life. They gave me temporary prisms and while they do help I feel like it is difficult for my eyes to move from close to far and bright light and night driving are challenging too. I guess I'm deciding between permanent Prism and Strabimus. Any suggestions?

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@againisay sounds just like my story. What a nightmare that Graves disease is! After a long while, when it went into remission so to speak, I had prisms for a long time in my glasses because I saw double. After a while, as an outpatient, the doctor realigned my eyes. I don't know how but, I was conscious and as she moved my eyes, I would tell her when they were in alignment. No problems with that since then. Eventually, I used gel for dryness. Sunglasses for driving and night driving glasses for night time. After I was diagnosed with TED, a few years back, I had to have back surgery so my eyes took a backseat. Recently, I had my glasses tinted (not transitions). I really did it to disguise or hide my eyes. But, what a difference it has made. I never realized how bright the world was.
I'm 71 and yrs old now and not likely to have another eye surgery.
If I was younger and still out working, I would definitely have another surgery as the right is a bit protruding and I hate it!!
.

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