OT - Anyone know about Thyroid Eye Disease?

Towanda2
Towanda2 Member Posts: 94
edited June 2014 in Life After Breast Cancer

I have been on Synthroid for Hashimoto's thyroiditis (hypothyroid) for about 8 years.  Never had any symptoms, just high TSH levels.  A couple of months ago my left eye started to bulge and I can't move it upward, causing double vision at certain distances.  I was diagnosed with Thyroid Eye Disease, which is much more common in those with Graves (hyperthyroid).  Right around the same time I developed a persistent ringing in my ears, which I believe is somehow related, although none of the docs (ophthalmologist, ENT, endocrinologist) agree.

I saw an eye specialist who put me on a 8 week course of Prednisone, which I'm just completing.  To my disappointment, my eye has barely improved and I'm afraid when I stop the steroids it's going to get worse.  I see the doc in two weeks and I believe he's going to suggest radiation as a next step as he's mentioned it before.  I'm not keen on having my eyeball fried, thanks anyhow, especially since from what I've read the outcome is about the same for those who've had radiation as those who haven't.

In any case, I'm just looking for support and/or advice from anyone who may have had this disease.  I have an excellent book called "Thyroid Eye Disease" which has lots of info but was written in 2003 so might not have the most current info.  I just started taking Omega-3 fish oil supplements and doing eye movement exercises as recommended in the book.  Plant sterols were also recommended, as was zinc, but I don't want to try too many things at once, and I'm waiting to see my onc next month to make sure I don't add anything that would be harmful to me re: estrogen positive bc (flax oil, for example).

I know the women on this board are great researchers and not afraid to try alternatives, so I'm looking for suggestions.  Has anyone else had this problem? 

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Comments

  • iodine
    iodine Member Posts: 4,289
    edited March 2009

    My brother has/had Graves and my heart goes out to you with your eye problems.  I have nothing to offer for info, so sorry.

    I have tinnitus, and it's made worse by some medications.  My ENT said it is because of minor hearing loss which just allows me to hear the rushing sound all the time.  Headphones turned up too loud, I guess.

    I do hope someone will be along to offer better info.

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  • Towanda2
    Towanda2 Member Posts: 94
    edited March 2009

     My ENT said the same thing, age-related minor hearing loss.  But it seems more than coincidental to me that it started the same time as the eye problem.  Also, I've read that tinnitus is common in people with thyroid problems, so maybe there is a connection and science just hasn't found it yet.

    Thanks, Dotti. 

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  • iodine
    iodine Member Posts: 4,289
    edited March 2009

    BTW, I'm also hypothyroid.

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  • sal80
    sal80 Member Posts: 1
    edited April 2009

    I was diagnosed hypothyroid Dec 07 following the birth of my child, eye problems started June 08 & have got progressivly worse since then. I now have severe Thyroid Eye Disease (TED), with constant double vision, protruding eyes & swollen eye lids. 

    My heart goes out to anyone who suffers with TED! I have tried several remedies, none of which particularly help, my only advice would be to KEEP STRONG!!!! I have now learnt to live with it cos god knows how long I will have it or what I will end up with. Been offered steroids but really trying to stay away from them until the doc says I have to have them.

     Feel free to get in touch, I think talking about it helps alot especially when it is someone who knows what you are going through.

    Best wishes x

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  • Towanda2
    Towanda2 Member Posts: 94
    edited April 2009

    Sal,

    Thanks for you response.  I'm very sorry to hear you're dealing with TED, and your condition sounds more severe than mine.  It does help to find someone who understands.  The steroids didn't help me at all and it's so frustrating that there don't seem to be any other medical options.  I've started working with a naturopath to try to balance my immune system and reduce the inflammation, but frankly, I'm not optimistic.  The scary part, as you said, is how long we will have it or how it will end up.  

    I hope your situation resolves soon. 

    Take good care,  Towanda

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