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    Old 09-06-2007, 12:57 PM   #1
    MAD MAZ
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    Thyroid Eye Disease

    Heya all, haven't been on here for a while but this is for our old friend Daisy - who's not on the net atm.

    She has asked me to post a thread regarding this.

    Daisy has just been diagnosed with Thyroid Eye Disease, are there any others on here with this? As you know she has helped many others on this bored and I feel it is time that we share our love with her, and help her out in this tough time in her life.

    What sideffects are threre - are there any cures, can we help her in anyway?

    Any advice or tips...

    Thanks

    Hope all of you good.

    Mandy. xxx

     
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    Old 09-07-2007, 06:39 AM   #2
    mkgb
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    Re: Thyroid Eye Disease

    I have not been diagnosed officially yet. But I fear I may have this as well. I have been getting my treatment from my neuro-ophthalmologist for hormonal migraines and vision impairment and my allergist and my dermatologist. By definition TED has the following symptoms:
    1. Pain in the eyes, pain when looking up, down or sideways
    2. Dryness, itching, dry eyes, difficulty wearing contact lenses
    3. Inflammation and swelling of the eye, and its surrounding tissues
    4 Swelling in the orbital tissues which causes the eye to be pushed forward -- referred to as exophthalmos -- which can make Thyroid Eye Disease sufferers appear to have a wide-eyed or bulging stare.
    5. Bloodshot appearance to eyes
    6. Double vision (doctors call it diplopia)
    7. Impaired vision

    I suffer from all but #4. However, my vision changed drastically during pregnancy and each year since my stigmatism(sp) has been doubling. I went from 20:17/20:17 vision to 20:25 L / 20:40 R. My right is where my issues always begin. Go figure. I feel mine is a minor case. I only loose my ability to function due to vision loss 2-4 days a month. This is an improvement for me it was worse two years ago. But on those days it is scary and you sit and have to wait and see if it will go away. What has changed to improve things? I had additional allergy testing done by a dermatologist and found I was using some additional contact allergens on a daily basis. The dermatologist also gave me some creams and antibiotics to take during skin flare phases.

    My regime is as follows.. avoid all contact allergens present in lotions and my environment in general (smoke is a biggie for my skin and vasomotor rhinitis). I use Patenol eye drops, keep 10 mg prednisone tablets on hand for when swelling causes my eyes to swell shut and the itching becomes irritation is unbearable, elidel cream (sometimes 4x a day) and metrogel cream every evening(dermatologist prescribed), zrytec, singular, decongestant (allergist) upon onset.. helps relieve some eye pressure from the sinuses, and inderal LA(neuro-ophthalmologist).

    Yeah sucks huh.. but since learning I am allergic to propylene glycol, iodine, cobalt, nickel, formaldehyde, urea formaldehyde decomposers.. etc and eliminating them from my diet and contact exposures.. minimizing my time out of doors.. and exercising rigidly. Things have improved.

    This week I question it. Today my vision impaired in my right eye.. and my left is going blurry. This is the second time this week, I had to call my husband and get him to get me and our son on Tuesday, because my vision went down the tubes.::sigh:: I can not wait to see my endo. I am hoping if we can treat my Hashi's things will improve. 10 days and counting down.

    What my neuro-ophthalmologist recommended when I told him my theory about the hormonal migraines and my familial thyroid history:
    It has been noted that the eye disease develops more frequently and is more severe among women who smoke. So smoking is the first thing a TED sufferer must stop. Non-smoker there.. so I had no issues with this.

    In milder cases of Thyroid Eye Disease, often all that is needed is lubricating eye drops or ointments for moisture, wraparound sunglasses to avoid glare, bedroom humidifiers to reduce dry eye problems[I do this]. When double vision occurs, some patients respond to the addition or prism lenses in their eyeglasses[Haven't done this]. For pain, swelling and redness, short courses of the steroid prednisone are sometimes prescribed[I do this]. Symptoms often return after the course of prednisone therapy, however[This is true, but if the hormonal flare has lessoned it doesn't come back as bad. I use one pill a day for 3-5 days this tends to get me through the worst of it].

    My neuro-opthamologist offers these surgical services for severe cases of TED.
    Surgery for double vision works with the muscles that control eye movement. In a very small percentage of patients, the swelling in the orbital area impairs vision by pressing on the optic nerve. In these cases, a surgery called orbital decompression is needed in order to prevent severe complications.

    I do not know if this will help much, but maybe something will. If not my sympathies and best wishes are with you.

    Sincerely,
    MG
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    Last edited by mkgb; 09-07-2007 at 06:41 AM.

     
    Old 09-08-2007, 03:13 PM   #3
    MAD MAZ
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    Re: Thyroid Eye Disease

    Thank you both for your replies yes it is Daisy01 we are talking about MidWest nice to see you are still here posting.

    And thank-you too MG it has been noticed that you help many people out on the allergy forum.

    Daisy is very greatful, and I will keep you posted with her news.

    Thank-you.

    Mad Maz the oldie.

     
    Old 09-08-2007, 08:18 PM   #4
    compcoll
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    Re: Thyroid Eye Disease

    I have been suffering for 7 years with headaches, eye pain, light sensitivity. I am at my wits end. It feels like an inflammation that comes over me and it is painful. My eyes feel like they have pain inside them. It all started one week 7 years ago. This happened every month, then every week, then every other day. I don't know what it is. I have been to so many doctors. And they have found nothing. They all tell me it's migraines. I don't believe them cuz the migraine meds don't work. All that ever works is advil which you can't live on long term. So I don't know what to do.

     
    Old 09-08-2007, 08:57 PM   #5
    mkgb
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    Re: Thyroid Eye Disease

    compcoll,

    Have you had your thyroid tested completely.. including antibodies? Also are you going to a nuero-opthamologist? You should do both.

    Beta blockers and the stuff I listed above will help but not allieve the sypmtoms completely if it is TED and your thyroid is not stabalized.

    If you have not had the thyroid tests other than TSH.. then you need to get the following run:
    TSH, FT3, FT4, T3 uptake, TPOAb, TGAb, TSI, TRAb. This will allow you to determine if it is the thyroid or something else.

    Best wishes. I sympathize. Day 3 this week of eye vision impairment and now I am doing the facial puffy eye inflammation and puffing with the nice eye pain. I am fighting it.. but come morn I may have to resort to the steriods again.

    MG
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