Still Struggling

[DoubleVision]

This is my first time on the forum, but I am so tired of struggling to see. I have Graves and TED, which I know are from a different antibody, but still attacking. I had RAI in year 2000. About a year after, I developed severe pain in my eye (which I NEVER had trouble with my eyes before, didn't even wear glasses). I then had ringing in my ears and lost my hearing in left ear and had severe double vision, eyes floating all over the place. I went to several eye doctors and finally found one who could at least solve the problem with glasses. However, there was no stability and every 6 months to a year I was purchasing new glasses. I had been tested for so many things to rule out problems, like MG, MS, lupus, stroke, brain tumor, etc. Finally the doctors just came to the conclusion that I had TED. My eyes don't bulge at all or aren;t red, irritated or dry. I have a full range of motion and very little thickening of eye muscles (at least according to a MRI 5 years ago). Now, once again I am in a state of struggle. My glasses have 36 diopters or prisms in them and the eye doctor said he can go no further. It's so hard to see now even with the glasses. I struggle everyday. I finally went to a new eye doctor and he says that's just the way it will be for you - a daily struggle. I am a reading teacher and this is just awful. I can't read the small text anymore. I can't ask the students to write any bigger. I'm just so frustrated and am putting this out for comments. I am afraid of eye surgery muscle surgery, especially since both eyes are affected and it would be not just one surgery, but several and maybe not even work the first times. I can't afford (mentally) to go through the kinds of odds I 've read about on the outcomes of eye surgery! Isn't there anything else? From reading this forum, too, I have learned that I should have had a TSI test, which I never did to confirm the problem. Just give me your thoughts please...
Thanks

[DoubleVision]

Thanks for your comments. I am hoping you never have to experience what I am. It's like being drunk without the drink. Thank God I don't drink or I might just go insane! If your eye alignment changes that's when you begin to worry and hope it doesn't progress. Hopefully, all you need is the drops. Just keep up with your appointements and hope all is well. It's strange, too, and I don't know if this has anything to do with the problem, but I have reversals now in writing and reading of "b" and "d". Seems odd to me when I never had that problem before. I'll be praying for you, too, that you only have a case of dry eyes. On a positive note, double vision comes in real handy when counting my money. :-)  Take Care

[Applecore]

I am really sorry to hear about your problems.  I too am having eye problems.  The lids on my eyes go up and hurt.  I feel pressure in my eyes.  I went to an opthomologist and he said it was dry eyes and gave me restasis.  My eyes are red now which is a side effect but they are feeling better.  He told me to use eye drops inbetween the doses of restasis.  I cannot focus as good as I would like and if in a store my eyes tire very quickly.  I have also found that sunglasses (which I have always hated to wear) now help me greatly when outside.  I have been afraid that I could have TED but so far he has not said that.  I go back to the eye doctor next week to follow-up on the restasis.  I will be praying for you that you find out what to do and get relief.  I had no idea that all these things could happen from the thyroid gland.  Its not fun.   Linda lol and prayers (:

[Applecore]

I am really sorry to hear about your problems.  I too am having eye problems.  The lids on my eyes go up and hurt.  I feel pressure in my eyes.  I went to an opthomologist and he said it was dry eyes and gave me restasis.  My eyes are red now which is a side effect but they are feeling better.  He told me to use eye drops inbetween the doses of restasis.  I cannot focus as good as I would like and if in a store my eyes tire very quickly.  I have also found that sunglasses (which I have always hated to wear) now help me greatly when outside.  I have been afraid that I could have TED but so far he has not said that.  I go back to the eye doctor next week to follow-up on the restasis.  I will be praying for you that you find out what to do and get relief.  I had no idea that all these things could happen from the thyroid gland.  Its not fun.   Linda lol and prayers (:

[DoubleVision]

Yes, I'm talking .125 daily. It has been a roller coaster, though, since the day I had RAI. I have been up to .2, and down to .1. I go to the Doc at least two times a year with blood tests, etc. Finally, about a year ago the thyroid labels have stabalized. I have never been the same though since RAI. It took several years for the correct diagnosis of the Graves in the first place. I had doctors tell me it was all in my head for years! Until I got to the point of severe shaking and extreme tiredness. Then by that time, I just took the RAI. I never ever had a problem with my eyes before that. They have ruled out everything else. The new eye doctor I saw yesterday said you didn't have to have the bulging eyes, etc., to have TED. I'm just frustrated. The Lasic would not help because I have 20/30 vision. It's just that the amount of prism in the glasses decreases the sharpness of images - and also the doubling is increasing. The new eye DOC said he was going to talk with his "team" before he could even figure it out. My double vision is beyond where any of the eye machines measure, so basically they guess at the amount of prism beyond that point.

[AR-10]

I probably spelled lasic wrong, sorry.

Forgot to welcome you, sorry.

Welcome. :)

[AR-10]

Have you inquired about Lasic surgery?

I know it is surgery, and it does not have 100% success rate, but it is getting cheaper all the time and the success rate is pretty high.

Is something like that recommended for a TED patient? Also, I would be sceptical of a diagnosis of TED if you don't have ANY of the symptoms.

Has your doctor monitored your blood over the last seven years to see how your levels are and are you taking meds?