[cathycnm]

#1072435

Lin – When I thought I was having symptoms of eye disease, I asked for a referral to an opthamologist. I knew I was already color blind (from birth) and so one sign of early vision loss was not going to be accurate to me. I made sure he knew the purpose of my visit was that I had Graves and wanted to be sure my eyes were staying healthy. It was on my referral and I wrote it again on the history I filled out. I still remember the doc coming in and starting down the routine history. He was maybe on question #2 when the Graves caught his eye. He stopped immediately, made eye contact and said "oh, you have Graves disease." It was like we connected on the purpose of my visit. I go every 6 months now to keep an eye on things – he is doing exams specific to Graves to make sure I am not developing anything abnormal. So – I would suggest calling your opthamalogist and setting up an apt that is all about Graves. If we don’t red flag it, I think we get put through routine exams but no one puts together the thyroid issues. Good luck – let us know!

[Marpo]

#1072436

I agree. When ever I would go in for an eye exam I would tell the person giving the exam that I had Graves’ Disease. Depending where you go you may have a different person examining your eyes. I know they read your chart but it does not hurt to also mention it. The person that did my exam the day they told me I had Thyroid Eye Disease said she was glad I mentioned it because then she started asking me questions she might not have asked even though she saw I had Graves’. She said that it is a good thing to mention your Graves’ and if your eyes are watery or itchy at an exam. Not everybody that has Graves’ Disease gets the Thyroid Eye Disease.

[lin]

#1019553

I was diagnosed with Graves 7 years ago, but never had any eye issues until a year ago. I woke up one morning and it seemed the whites of my eyes (I guess it’s just the conjunctiva though?) were sagging into the lower, outer corners of my eyes. It was as though I had lots of extra eye-white just bundling up in the outer corner. It was very uncomfortable. It would get much better during the day, though, and look normal again. The next morning — sagging again! This has come and gone for a year now. I also seem to have a bit of sandy grit in the inside corners of my eyes and a more sticky discharge on the outer corners when I wake up. However, it has not gotten worse in the year, and some days there is very little sagging. I have seen an optometrist and an ophthalmologist and neither thought it was thyroid related, but I wonder if they just didn’t know. One thought it was an infection (but antiobiotic drops did nothing). The other thought my eyes were just irritated due to some UV damage and told me to use lubricating drops (which don’t make a difference either). Does this sound to anyone like it could be TED related? Is there some special kind of eye doctor who deals with thyroid eye problems?

[DianneW]

#1072437

Lin,

If the lining of the whites of your eyes become filled with fluid and sag into the outer part of your eye, that is known as "chemosis", and is a sign of active TED. Grittiness can also be. You might be better off seeing an ophthalmologist who sees Graves’ patients regularly.

If you’re having some TED 7 years after treatment then it’s a good idea to meet with your endocrinologist and make certain that your thyroid levels really are where they should be. If you’re a little hypo or a little hyper, either way, it could contribute to the problem. Hypo would be more likely to be the culprit.

YOu say using lubricating eye drops haven’t helped the grittiness. You may not be using them often enough or long enough. Try being more persistent and see if that helps. If you wait until you’re feeling the grittiness to start using the drops, it will take several days of consistent use to get rid of that feeling. Dry corneas will feel gritty whenever the eyelids pass over them, which means whenever you blink or turn your eyes. Once you get the corneas healed with lubricating drops, keep using the drops so they don’t dry out again.

Hope that helps.

[Author]

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