Anyone have or had thyroid eye disease (TED)?

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