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    Old 04-15-2009, 09:14 AM   #1
    AlexaIn2006
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    Question Thyroid Eye Disease

    My thyroid problems began suddenly, overnight about 2 months ago. Within a week, I developed eye pain.

    To describe it to you, this is what happened...The first 2-3 days of eye pain came and my eyes turned glassy looking, bloodshot, and puffy or swollen. After a few days the swelling, bloodshot, and glassy went away but the eye pain has continued for nearly two months. I have a period of one week where the eye pain nearly went away. There was almost no pain, but I could still "feel it" in there.

    On a scale of 1-10, the everyday pain I feel is a 6-7. I have experienced times of 10, and I honestly wanted to die because the pain was so intense and I couldn't function, it was very overwhelming, but that only happened a couple of times. During the week when it almost went away, it was a 1. But here I am after that week at a 6-7 range of pain.

    I deal with this okay, but I am trying to understand the TED. I only met my endo once. I saw her the week my eyes were better, she looked at them and said they looked fine. She mentioned no further appointments or suggested I see someone for my eyes.

    I am getting a bit frusterated. From what I understand, MOST TED is associated with Graves. It is more rare or uncommon to have TED and have Hashimotos, but it is possible, right?
    What is frusterating me, is that not everyone gets bulging eyes. Anyone I mention this people make a comment that my eyes don't bulge.....but not everyone gets that severe, and it can develop over time.

    I just wanted to start a topic about TED. I know I have this, although my eyes do not bulge. I have elevated TSI results which from what I understand indicates an eye disorder associated with Graves.

    I am not sure of my point, forgive me, but I am overloaded with information as I am trying to sort everything out.

    Is there anyone here that has TED and Hashimotos or something other than Graves? Does anyone has TED without the bulging eyes like me? Thanks.

     
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    Old 04-15-2009, 11:26 AM   #2
    mkgb
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    Re: Thyroid Eye Disease

    Your Endo is not the one to help here. You need a neuro-opthamologist (NO). Look one up near you. I have TED. My NO diagnosed it. By his information and definition: thyroid orbitopathy or thyroid eye disease is an autoimmune condition where your body's immune system and effec the muscles about the eye. Now this can manifest in many ways the most common associated way is when the AI is producing factors that stimulate enlargement of the muscles that move the eye causing bulging of the eyes and retraction of the lids. However in other cases the optic nerve and other parts of the eye are effected causing double vision, decreased vision, and ocular irritation.

    Now this is often associated with AUTOIMMUNE abnormalities in thyroid gland function. My NO MD stressed that either too much thyroid (Graves' disease) or too little (Hashimoto's thyroiditis)) hormone can be at FAULT. There are even rarer cases where thyroid orbitopathy may be independent of a thyroid disorder. TED needs independent treatment and monitoring it may not resolve in spite of the fact that the thyroid is now "controlled" in cases of GD or HT. In my MDs case he expects me to visit every six months or when I have a flair that results in vision loss.

    My eyes do not bulge. My TED has and is attacking my optic nerve. Only during myexodema(sp) flares do my swell/bulge. Treatment varies. What worked in my case was steroid therapy. The steroids made my eyes much more comfortable. I was placed on a proactive oral and topical steroid treatment plan. Steroid therapy may be effective in halting the inflammatory phase of thyroid orbitopathy and partially shrinking the muscle swelling. Steroid side effects are very common with continued treatment. So treatment was limited when I would lose my ability to see and limited to 5-7 days of prednisone orally at a time with daily topical application of Elidel. If there are still problems with eye movements (double vision), exposure problems (irritation and foreign body sensation), or decreased vision after a steriod regime is implemented and optimized then surgery should be considered . Surgery is not a consideration unless you have issues with the bulging protruding eyes and muscle effects.

    The one reason I say get to a neuro-opthamologist is your chronic pain complaints. This is not common in TED. According to the NIH, neuro-opthomolagist organization information: "Pain is normally not a big factor. Pain is not usually a major finding in thyroid patients, although patients will be aware of fullness within the orbit and sometimes a mild irritation, light sensitivity, or ache." I can say I never had pain, but I did have irritiation, severe dry eyes and burning and a constant ache. Pain in the eyes may be the sign of something more and you should see a specialist about it.

    MG
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    Last edited by mkgb; 04-15-2009 at 11:27 AM.

     
    Old 04-15-2009, 02:31 PM   #3
    AlexaIn2006
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    Re: Thyroid Eye Disease

    Thanks, I has no idea that pain is not associated with this. The pain is related to whatever is going on with my thyroid. I didn't know if my endo would refer me to see someone or if this is something I have to do on my own. Now, I am really curious....

     
    Old 04-15-2009, 02:34 PM   #4
    juner50
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    Re: Thyroid Eye Disease

    Alexa,
    I see you are in San Diego. I have TED/Graves Eye with Hypo/hashi's. I had one bulgy eye but pain in both eyes. I also had a ptosis in the other eye. I saw Dr Bob Goldberg at the Jules Stein Eye Inst at UCLA. He's known for treating TED/Graves eye. I met a woman in his office who flew in from Australia to see him. I was bi-coastal at the time so it worked out well for me. I had the surgery and it helped. I still have a bit of a bulge occasionally--it comes and goes, which is the nature of Graves. I need to be followed by someone now that I'm back on the east coast and haven't done so (my fault). My regular Optho keeps telling me they look OK but????

    He's very quiet and unassuming but he's good. There are so few oculoplastic surgeons that specialize in TED or know how to treat TED. I would talk to him and see what he says. He may be able to recommend someone for you if he feels you don't need his service. Danica is is assistant and is also very nice.

     
    Old 04-15-2009, 02:40 PM   #5
    AlexaIn2006
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    Re: Thyroid Eye Disease

    Thanks for the information. We actually have the Shiley Eye Center here in San Diego which is the only dedicated thyroid eye center in the nation, you can look it up on the internet, there is a lot of information about it. I am not sure if I will go there or find someone close who is qualified. I am located in Point Loma in San Diego, so I don't want to drive too far.

     
    Old 04-15-2009, 02:51 PM   #6
    juner50
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    Re: Thyroid Eye Disease

    I just did look it up....sounds good...sign me up LOL

    Make sure you make an appt!

     
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