[connypie]

#1060520

hi everybodyi have a question.is poor eye muscle control a part of graves eye disease?diagnosed with graves at 28,had RAI 6 month later.had bulging of the eyes before and again after the RAI, lived with one bulging eye for years.had double vision for years,but was corrected with glasses as long as i looked straight ahead.the eye finally went back in almost all the way by itself.my son died and i popped it back out from the stress and emotional trauma.it took years to go back in.now in the last 4 years i had very traumatic events one right after the other.death,cancer ect ect.almost a year ago i started getting very upset,lack of focus unable to function,ect ect.basically all the mental symptoms of being very hyper.but hardly any physical symptoms.no tremor,high heartrate,weightloss.by the time i saw my pcp i couldnt even explain what was going on,he sent me for a head ct,wich was ok.he then lowered my levo,my t4 was high 12.8.i very slowly started feeling better,am still not all the way back.3 weeks ago i started having double vision straight ahead with my glasses on,made an appt with eye dr.she said i have poor muscle control and lidlag and have to have orthoptic therapy,wich my insurance doesnt pay for.my glasses are also off a little.my eyes never bulged out this time though.she then seemed surprised when she read that i have graves.asked me twice.this is my eye specialist i have had for over 10 years.havent seen her in 3 years though.now im totally confused,is it from the graves or not?anybody have any info or advice? thanks

[snelsen]

#1183091

Probably is TED, and probably you are in the active phase, your eyes are changing. I am speaking from my own experience.
You should see a neuro -ophthalmologist, if you can, and/or go to the eye doc familiar with graves. Yes, this is puzzling, since it is the eye doc you have seen all this time, so she knows your history. Is she AN OPTOMETRIST, or an ophthalmologist??? Optometrists should not treat or do any TED surgery. I imagine if an ophthalmologist, oculofacial surgeon, and/or pediatric ophthalmologist, propose surgery for medical reasons, (when you are ready for surgery) your insurance will most likely cover it. Just thinking this is likely.
I would like to be wrong.
Specifically, yes, “poor eye muscle control” IS thyroid eye disease. Unless strabismus in a little kid.
But, remember, I’m just another one of us!
Shirley

[connypie]

#1183092

hi snelsen, i thought so too,thats why i thought it was weird,that she asked me if i had graves.she has been my eye dr for 10 years.i specifically asked for somebody with experience with graves back then.she has an md behind her name.unless she had a total brainfart that day.has anybody ever been prescribed vision therapy for this?does it even help?she indicated i would have to do that for a long long time(rest of my life,if i recall).since i have to pay for this out of my pocket i would like to know that i will actually get some benefit from this.i havent looked at my labs yet.but im probably a little low,since my hair is falling out again and im putting weight on.

[Kimberly]

#1183093

snelsen wrote:

You should see a neuro -ophthalmologist, if you can, and/or go to the eye doc familiar with graves.

Hi conniepie – Agree with Shirley here on seeing another doc. Obviously, we are all patients here, but in my opinion, *any* time you have a history of Graves’ and are experiencing double vision, you should rule out TED before trying any other options.

So sorry that you have had all these issues to deal with on *top* of a Graves’ diagnosis. Stress is definitely believed to have an impact on autoimmune conditions, including Graves’ and TED.

[Author]

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