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Thyroid Eye Disease - Graves Disease

Posted , 8 users are following.

Katelyn423
Katelyn423

Hey! So, I have some questions and concerns about this. I'm a 22 year old female and have been hyperthyroid since I was 18. They have been wanting to remove my thyroid for a long time and I have been putting it off. I'm getting the thyroidectomy this summer. But never mind this.

I have Graves disease. They told me about 2 years or so ago. I'm getting very scared that I'm starting to get the eye disease. I feel like I'm starting to see in double vision, my eyes feel dry, stuff like that.

Yesterday, I felt a very strange pain in my right eye. Maybe like in the lower middle area. It felt like my eye twitched but also felt like it was stung. It actually hurt so badly that I jumped and almost fell to my knees. About 20 minutes or so, it happened again. Not nearly as bad, but enough for it to hurt.

I don't know what to think . I don't like this. Lol help

1 like, 12 replies

12 Replies

  • linda187
    linda187 Katelyn423

    Posted

    There are ophthalmologists who specialize in treating Graves eye disease either with steroid medication or special surgery.  I would get a referral to one as soon as possible.
    • Katelyn423
      Katelyn423 linda187

      Posted

      Okay, thank you, Linda. I have a specialist for my thyroid problems all together. We have talked about the eye disease becoming a problem, and I feel like yesterday just really got me worried about it.
    • linda187
      linda187 Katelyn423

      Posted

      Your worry is understandable Katelyn.  Your thyroid specialist will not have the expertise of treating your eye disease though so ask for a referral to an eye specialist who treats this.
    • Deia
      Deia Katelyn423

      Posted

      Hi!

      I have facing hyperthyroid for 18 months and I had my eyes affected. First, i notice my eyes puffy, then I felt pain like you are describing, then I had double vision, dry eyes and suddenly I saw my eyes bulgy. It made me feel depressed every time I looked at the mirror. I didn't take picture at night because the flash made my eyes look more bulgy. I didn't take close pictures too cause it showed that one eye was bigger and more bulgy.

      I looked for an ophthalmologist and octoplastic especialized in graves eye decease and he told me the fat around my eyes were very ba. It was pulling my eyes out and the only way to fix it was having a fat orbital decompression surgery. I had it 4 weeks ago and I already regretted for that. Now one eye is still bigger than the other one and my right up lid is very different from my left up lid and also I have two big scars in my up lid sad My doctor told he can fix these differences and he wants make another surgery next month. I don't know if I will do it again. I am afraid that it can be worsen but also it is very ugly the way it is now. No pictures yet...My self esteem is very low since I was a beautiful waman before this desease and now I can't see myself on the mirror. I avoid it all the time. I don't recommend this surgery. It didn't make my eyes be beautiful the way it was before the desease.

      Now I am feeling that my levels are bad again. I think it is because I got very stressed about this surgery. My doctor had lowered my dosage of Tapazole from 20 to 10 mg 9 months ago and my lab tests were good. I have an appointment with my doctor next week and I hope we can fix it since if my levels are bad again it will make my eyes even worse.

      I saw in this forum about Take Acetyl-L-Carnitine with Tapazole. It seems that help raise the TSH. I started it today. Let's see what happen.

      Go to a specialist in eye desease soon. There are some treatments that can avoid your eye become worsen.

      I hope you feel better.

    • linda187
      linda187 Deia

      Posted

      Selenium 200 mg or 2 Brazil nuts will help the eyes.  So will putting cotton pads dipped in witch hazel over closed eyelids.  You have to be very cautious with Acetyl-L-Carnitine when taken with Tapazole.  You always need to get a copy of your lab tests and learn what they mean.  Also you need to get tested more frequently when you are on Acetyl.  Regular L-Carnitine is not as sensitive and you can take up to 3,000 mg of the Regular L-Carnitine a day.  What dose of Acetyl are you taking? Depending where your levels are at, I would start on the lowest dose of 500 mg daily until you see how it affects your results.  If your levels improve, allow your doctor to adjust the Tapazole dosage.   Also Vitamin D3 gelcaps is essential to take as well and get your Magnesium level checked and if low or deficient, supplement with Magnesium Citrate.
    • Deia
      Deia linda187

      Posted

      Hi Linda!

      I have read some posts you have wrote about L-Carnitine and Acetyl-LCarnitine. I started with Acetyl-L-Cartnitine yesterday. I took only 500 mg. Should I have blood test every month to see my levels? I have had my lab test every 2-3 months since my levels were goods I already had a blood test 4 days ago but I didn't see the results yet. The lab sent the result for my doctor office and I have an appointment this Tuesday.

      Thank you so much for your help

  • hypnocool
    hypnocool Katelyn423

    Posted

    When I was diagnosed the first time in 2014.  I had severe hyperthyroid and Grave's disease(thyroid eye problem).  Prior getting diagnosed, I was running towards our garage then all of a sudden I fell on my knees.  I didn't understand at first, I thought I had a joint problem or something.... Glad I found this forum and found out about my Vit D deficiency.

    My endo explained to me that I have to get my thyroid in control in order for my eye disease to get in control.  And that RAI is the worst for my Grave's it will make my eyes worst.    

    Last year I did felt what you're experiencing with your eye I didn't understand it at first until now I thought it's just me. 

    So what I did was I took care of my thyroid and get it stable.  And now my eyes are stable too my doctor told me that my bulging has gotten better.  "It's just probably from fats".  I get the usual eye pressure check and photo scan and everything.  My prescription from my optometrist is on stable and haven't gone up to worst.  If I experience any eye twitching or headaches or eye ache.  That's when I suspect my hyper is causing it and had to go get blood test right away to get my methimazole dosage in check...

    Long story short get your thyroid in check with the right dosage on your methimazole or carbimazole or tapazole or whatever ...zole meds you're in

     

  • jane95340
    jane95340 Katelyn423

    Posted

    Hi

    Best thing is to get your eye checked over. This happened to me so I know how scary it is. I would advise going to the casualty dept of an eye hospital asap and being examined. It could be due to a migraine or floaters.

    Ophthalmologists are very experienced in all manner of things because they see a lot of people with c morbidities.

    I had this but it was due to dry eyes. My eye felt like gravel or grit was in them mainly the right eye. Hope this helps.

    Try not to worry but get it checked out asap, no point in suffering in ssilence so to speak.

     

  • michelle60449
    michelle60449 Katelyn423

    Posted

    I've had Graves eye disease for the past two years. It sounds like all your symptoms point to the same thing. I started with blurry, double vision. Dry watery, gritty eyes. You should see your doctor ASAP because of the dry eyes I developed an ulcer in my left eye. After two years it's getting better but I still suffer with the blurring.
    • linda187
      linda187 michelle60449

      Posted

      I too had dry, gritty and red eyes.  My ophthalmologist put collagen plugs into the tear ducts to keep more moisture in them.  This year she said the moisture in my eyes improved as my thyroid disease improved with normal thyroid test levels, normal antibody levels, currently on a dose of Methimazole, 2.5 mg every other day.
  • jane95340
    jane95340 Katelyn423

    Posted

    Hi Katelyn

    Try not to worry.

    Easier said than done I know.

    Have you ever had a migraine?

    It is a good idea to get an examination of your eye(s) by an optometrist or at the eye hospital if you have one close by for reassurance.

    Dry eyes cause unpleasant signs and symptoms as the lack of fluid can cause the eye to feel gritty.However it is a simple procedure just to get an examination by an ophthalmologist or poptometrist as it is a Bank Holida. your local hospital may have a list of who is on call for such appointments during the holiday period. 

    Take care.

     

  • vicky81955
    vicky81955 Katelyn423

    Posted

    Hi Katelyn

    you must get your eyes checked out as soon as you can. Go to a specialist who deals with thyroid eye disease. I had an opthalmologist and occuloplastic consultant who has treated me for the last three years. the double vision, dry starey eyes do need checking up on.

    I have had treatments for three years including steroids and surgery and am now turning the corner. It needs a diagnosis and treatment. The endocrinologist I see didn't have enough specialist knowledge hence the other consultants.

    there is a lot to be done to help the condition these days, but no one treatment for a 'cure'. 

    I still take selenium and/or brazil nuts and use eye drops and eye gel to lubricate my eyes. These were advised by my consulant.

     

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