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Anyone have or had thyroid eye disease (TED)?
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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Yes, many years ago. The first time I heard about it was when the late Barbara Bush was diagnosed with something like that.
Can someone please tell me how to get rid of bags after catarac surgery? I have never had this before and it has been over three months.
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
Hello Donna, I am treated for TED at the Mayo Clinic, Rochester, MN which has a dept. dedicated to Thyroid Eye Disease. After two hometown opthamologists misdiagnosed me with an eye allergy, I went to see an ocular specialist at Mayo who correctly diagnosed me with TED. I have a normal functioning thyroid, and I do not have Graves disease. My symptoms were an inability to keep right eye closed while sleeping, retracted eyelid, double vision, dry eyes, lights are extremely too bright, slight protruding right eye, undereye bags(inflammation). Discovered my blurred vision was being caused by a cataract. Due to having IBD, I am unable to take Teppezza. Doctor's recommendations: I take 200mcg of Selenium, eye drops, eye gel at night, sleep on back on raised pillows, wear dry eye goggles or tape eye closed while sleeping, cold pack eye mask for inflammation. I was not a candidate for prisms on my eyeglasses to take away the double vision but instead they put a type of tape on one of the lenses which helps. Prognosis is 6-24 months in the active phase of TED. If the eyelid does not protract, my doctor will do eyelid surgery. Though I can drive in town, my son drives me if freeway driving is involved. I hope you find a specialist to assist you.
yes, i’ve had thyroid eye disease and been advised it’s linked to my thyroid autoimmune disease, specifically graves’ disease
have you seen a neuro-opthamologist? My neuro-opthamologist has diagnosed numerous other unusual conditions—1. my eyes are not asymmetrical , 2. my eyes turn inward, and i have autoimmune reactions/allergic conjunctivitis. I use cyclosporine twice daily—-the strongest one on the market—cequa, .09 cyclosporine. i accept that my vision is too uneducable to safely drive
May i ask why you are not a candidate for prisms? I am fitted for prisms by one of the most specialized people in the country —a neuro-optometrist who works closely works with my neuro-opthamolojgist
I see several eye specialists when I go in for my 3-month checkups. The TED specialist, the double vision specialist (I forgot what that type of specialist is called), and the cataract specialist. The double vision specialist tried numerous prisms tests but none of them counteracted the double vision. I also take cyclosporine for my dry eyes.