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Thyroid Eye Disease does it clear?

Posted , 20 users are following.

De8890
De8890

Hi I got diagnosed with graves disease sept 14 and in Dec I noticed a change in my eye. They were always big to start with it wasn't till people at work started making comments that I realised that they had become bulging. I struggled with the endo-crinologist to get seen and ended up going private. My eye Dr says that it's a long treatment but I can't find out if it's a life long problem or just a few years that I'll suffer. Any help and advice would be great.

Thanks in advance.

2 likes, 50 replies

50 Replies

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  • emmaj43
    emmaj43 De8890

    Posted

    Hi I was diagnosed in Apr 12 and had medication for 18 months - I have now had 8 months feeling well, I do have blood tests to keep a check. It is more likely to come back in the first year.  If it comes back again I will have surgery or RAI.   If you have eye problems they can go back down after treatment or sometimes you will need surgery.  Stay positive - it is not a nice disease but is very treatable with time.  I am sure others have lots more advice for you soon. it is a very good forum. Xx

     

    • De8890
      De8890 emmaj43

      Posted

      Thanks emma! My eye dr said that due to my age and being at 25 I should avoid the RAI treatment I am currently on the block and replace which is working well recent blood test showed that I am currently underactive and now increasing my levothyroxine. My endo says that my treatment course is looking to be around 2 years and that I wont come off the medication until my eyes are more normal level in a sense. xx
    • susan96961
      susan96961 emmaj43

      Posted

      I was reading what u wrote. And my left eye is out a little bit I see a lot of people sai they doctors gave them many names in medicinen but my eye doctor only gave me selenim 100 I have been taken it for 3 weeks. Do u think that would help? My indocrin docto r said my the blood level is normal I don't understand am confused .
    • fern12
      fern12 susan96961

      Posted

      I understand that selenium is good for the thyroid also.  One Brazil nut per day is supposed to have enough selenium to sustain normal levels of that nutrient.

      Endocrinologists typically look at the TSH numbers first as the best indicator of whether a patient is hypo or hyper - thyroid.  Some patients think it is better if their TSH is near zero and can simply take pills for their low T4 or T3. [The endos don't usually even test T3 levels unless the TSH is too low to indicate how high the T3 might be.]  For me, it seems like wanting to keep your natural thyroid functioning well, it is also necessary to have sufficient stimulation from TSH which is Thyrotropin or Thyroid Stimulating Hormone.  Without that, the thyroid will atrophy and become as disfunctional as if destroyed by RAI.

  • linda187
    linda187 De8890

    Posted

    Thyroid eye disease may occur in patients who already know they have thyroid disease, or sometimes it's the first problem that brings the person to the doctor's office. The symptoms that occur in thyroid eye disease include dry eyes, watery eyes, red eyes, bulging eyes, a "stare," double vision, difficulty closing the eyes, and problems with vision. Treatment with Radioactive iodine can worsen the condition or cause it to occur even if it wasn't present upon diagnosis of Graves disease because the treatment does not get rid of the autoimmune antibodies causing this disease.  An endocrinologist will provide treatment for the Graves part but the eye disease part is best treated by an Ophthalmologist or specific Oculo-plastic surgeon. The first treatment for eye disease besides the treatment for Graves is steroid injections to reduce inflammation.  Some docs will treat with Prednisone pills but injections are more effective.  If the eye problems are not resolved with this treatment, or are too severe, then ocular surgery to reduce the pressure behind the eyes is often done.  The Graves disease is treated separately with usually one of three methods:  1) antithyroid drugs to reduce excessive thyroid hormones, 2) Radioactive iodine to ablate the thyroid or 3) surgery to remove the thyroid.  Though this disease affects the thyroid and eyes, it is an autoimmune disease that attacks the thyroid and/or eyes.  It is often precipitated by stress in those who are predisposed to this condition.  I was very fortunate to be diagnosed before my lab results were too high out of range so I got treated with Methimazole, 10 mg promptly (In UK Carbimazole is the same drug).  This normalized my FT3 and FT4 but did not raise my TSH which remained at less than 0.01 for two years.  During this time, my eyes were extremely dry, irritated and red but not bulging.  I often use lubricating drops.  At the two year mark, I read a medical research paper on the benefits of adding L-Carnitine, an amino acid normally present in the body, to the treatment regimen of hyperthyroid patients.  Before adding it, my doctor measured my L-carnitine levels and I was deficient.  I was also deficient in vitamin D so added that as well.  I believe hyperthyroid patients are deficient in a lot of vitamins and minerals because of the disease and I hope to be able to get all of mine tested this year through my Naturopath.   I tried the regular L-Carnitine and my TSH rose for the first time in 2 years to 0.05.  Then I added a different type of Carnitine, namely Acetyl-L-Carnitine and this really brought my levels into the normal range quickly, especially my TSH and improved my eye problems.  Currently my TSH is within the normal range and my FT3 and FT4 are in the middle to upper level of the normal range where Graves patients feel the most comfortable.  I am currently taking 2.5 mg of Methimazole and my antibodies have normalized.  My Endocrinologist has given me the choice to remain on this dosage or stop it. I fear stopping it might result in a relapse so I am waiting on making that decision just now.  I am happy with my progress to date.  I have always been an empowered patient and always ask for a paper copy of my lab reports and keep my own file.  I think all Graves patients should do this.
    • De8890
      De8890 linda187

      Posted

      Hi Linda, I am currently taking 40mg of carbimazole and my thyroxine has been increased from 50mg to 75mg. I have taken steriod tablets a high dose and a short treatement, which helped reduce the swelling my eyes look more level that was about a month ago but recently I feel that I have a build up of pressure again and more sensitive to the light, im trying to get in touch my the eye dr but no luck at present. My endo is now getting in contact with him for me and has suggested that I wear sunglasses when I am out and about to help protect my eyes. I suppose that is better if it is going to help! My endo normal sends me a copy of the test results which I also find is a good help. Do you think I should ask my dr about getting my vitiamin and minerals level tested? 

       

    • linda187
      linda187 De8890

      Posted

      Here in Canada, the testing would not be covered by medical insurance unless there is a specific diagnosis that warrants it.  I had to pay extra for the carnitine and vitamin D testing and the full range of vitamin testing would cost me $300 thru my Naturopath so aside from the odd one, docs do not usually order these tests.
    • De8890
      De8890 linda187

      Posted

      Ah, I live in the UK but Im not 100% that they do the testing Ill have to ask them about it. But thank you for you help very intersting to hear about others. 
    • zizinb
      zizinb linda187

      Posted

      Hi again Linda

      Can I just ask - you are in the States, is that right?? Because for some reason you seem to have a doctor who is happy to cooperate with you on your natural protocol.

      It is nigh on impossible to get any endo in the UK to care enough or to have any sort of training on natural treatments.

      They check your bloods, adjust your meds and that is as far as it goes.

      Mind you, that is on the NHS. Perhaps you get what you pay for!!

    • linda187
      linda187 zizinb

      Posted

      I live in Canada.  I have an excellent GP and I like my Endo but to say they are cooperative with me on my natural treatment choices is not exactly correct.  They take responsibility to make choices and adjust what they are trained in which is the medication.  I first saw a medical research paper on the use of L-Carnitine in hyperthyroid patients and asked my boss, a Genetic Metabolic specialist what he thought about it and he said, "Well it won't hurt you".  So I tried the regular L-Carnitine and had some positivity but not enough so I decided to experiment with different types of Carnitine and tried the Acetyl-L-Carnitine.  I had to make adjustments in dosages of supplements based on how I was feeling and on my lab results (which my GP is very good about giving me a paper copy of if I ask for them) and my Endo made the adjustments in my Methimazole dosage.  I don't think he likes me but I like him and think he is a good doc as far as his training does.  I just think that the combination of medical knowledge combined with diet and supplements is a better solution to this disease.  As far as the other supplements, I found out I was vitamin D deficient when I volunteered for a research project and that was one of the tests they did so I supplemented with that.  I had read about patients with thyroid eye disease benefitting from the use of Selenium and that's how I learned about that.  Though doctors have written scientific papers on the use of Selenium, most doctors know nothing about supplements so the patient has to find this information another way.  I did show my Endo my supplement bottle so he knew why my lab results were changing so much and he knew I took it but he took no responsibility for that aspect of my care because he knows nothing about it.  Hence why these Boards are beneficial.
    • jackie87522
      jackie87522 linda187

      Posted

      Hi Linda. Just read you response and I have to say, of all of the replies, yours is the one that is the easiest to understand. I'll be following your advice as I seem currently to be at the same stage as you. Thank you for that.

  • emily28486
    emily28486 De8890

    Posted

    Sorry forgot to mention he suggested taking a steroid after the RAI for about a month to prevent eye disease. I am very confused about what to do as I am back in the normal range now by taking carbomiazole and feel good so have the same questions as you about eyes, I have really noticed it when I see a picture of myself. Yikes sad 
    • fern12
      fern12 emily28486

      Posted

      Steroids have their own effects, and you can't take them for long periods of time.

      Also, once your thyroid is destroyed you can never change your mind and get it back.

      The doctors think it is sweet when all they have to do is prescribe Levothyroxine and have your blood tested once a year.  They don't even have to deal with your symptoms.  They just look at your blood test and if it looks good, they say your symptoms are not due to the thyroid.

    • De8890
      De8890 emily28486

      Posted

      I have never really been a person who loves pics but I really try to avoid them at the moment espically over the xmas period when my eyes were at the their worst. One eye looked like it was ready to pop (in a sense) and the other looked very lazy. They look a liitle more normal and level but I still worry that they might get worse. I try not to get stressed out and try to keep my health good, as been told that if poorly they will flare up. However I suffer from coldsores alot and find that my eyes tend to hurt more when I have tthem. 

      I would maybe ask about seeing an opthamolagist about your eyes if you feel that they are bulging, its good to catch it before it gets worse. At least that way if it is TED you can hopefully prevent the symptoms from getting worse.

       

    • linda187
      linda187 fern12

      Posted

      Absolutely agree with everything Fern has said.

       

    • De8890
      De8890 fern12

      Posted

      At the moment I have my blood tests done regularly, every 2-4months 
    • linda187
      linda187 De8890

      Posted

      That's good.  It is very necessary to do that.  You might want to ask your doc to check your carnitine levels and vitamin D.  You can tell him you know other Graves patients who were deficient in this.  If they come back deficient, add these supplements.
    • De8890
      De8890 linda187

      Posted

      Thats Great Ill definitely be getting them done. Thanks Ill let you know what happens x

       

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