Graves Disease - Eyes

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Could anyone who has experienced protruding eyes with Graves Disease tell whether of not their eyes have returned to normal?

After two thyroid storms 10 mos. ago, I was diagnosed with Graves Disease 8 mos. ago. and prescribed Methimazole 10 mg. and Propranolol. That same month, one of my eyes began orotruding/eyelids retracting. I had upper and lower eyelid surgeries 2 mos. ago, which improved my appearance but my eyes are still asymmetrical.  😢

Since my diagnosis, I have been doing everything in my power to try and get it under control: Riding bike 15 mi./day, cutting out gluten and dairy from my diet, taking all meds, and reducing stress. However, my Graves Disease has remained out of control since the first thyroid storm. Blood levels are "approaching" normal range but I have not yet attained them. My hair has been falling out by the handsful for 10 mos. as well. Besides my eyes, my Graves Disease is accompanied by a blistering rash on my face which occurs nearly every other week: Prednisone and Benadryl knock it out pretty effectively. Many mornings I wake up drenched in sweat. Some days I lose hope that this disease will go into remission.

My surgeon brought up orbital decompression but the thought of that terrifies me, and I have no confidence that the symmetry of my eyes will be restored. I've put off further surgery for 6 mos. to see if my eyes further change.

Is there any chance that my eye will stop protruding? Thank you for your input.

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  • Posted

    It seems to me if you can get your thyroid disease under control including lowering antibodies, that it will help your eyes.  What worked for me was to add supplements to my medical treatment.  If you have experienced thyroid storm, you will be deficient in a lot of vitamins, minerals and amino acids and replacing these will help your recovery.  I started by taking 3,000 mg of Regular L-Carnitine.  (I was deficient in Carnitine)  Then I added vitamin D and Magnesium which I was deficient in both.  Also added Omega 3 1,000 mg to decrease inflammation.  Then I added Acetyl-L-Carnitine instead of the Regular or in addition to it and it really helped my TSH rise which helped to normalize the antibodies.  However, a caution, Acetyl-L-Carnitine is extremely sensitive and requires frequent monitoring and adjusting meds and/or supplements dosage in order to avoid going hypo.  Also for the eyes, 2 brazil nuts a day helps or Selenium 200 mg.  As well some people get relief by putting cotton pads soaked in Witch Hazel over closed eyelids.  Please keep us posted on your progress.
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    • Posted

      In addition to the Methimazole, Propranolol and Cetirizine, I've been taking the supplements Selenium and Acetyl L-Carnitine. It takes so long to detect what effect, if any, these are having. I try to read all I can but am unsure of what vitamins, minerals and amino acids I should take, and in what quantity? Do you know of anything published that might provide guidance on that? Thank you for your assistance.

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    • Posted

      I have discontinued L Carnitine after reading about a research suggesting it could have carcinogenic effects. SInce I don t seem to notice any difference in my value s or well being, I d rather not take chances , we all know the results of one survey will disprove another- But,  as the saying goes, better safe..

      I am also on Selenium (100mcg a day - can go up to 200 - one /two Brazil nuts a day ) and vit D (2000 mg a day, except in the summer months ) 

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    • Posted

      The only documented Medical Research Studies I came across were the articles by Dr. Salvatore Benvenga et al, an Italian Endocrinologist and that was on Regular L-Carnitine.  They suggested a dosage of 3,000 to 4,000 mg of Regular L-Carnitine for hyperthyroid patients.  I did start on this and it improved my TSH a tiny bit from less than 0.001 to 0.12.  I also came across articles on the importance of vitamin D and thyroid functioning.  I took a minimum of 1,000 IU of Vitamin D and a maximum of 5,000 IU.  The Acetyl-L-Carnitine was what really affected my labs, especially TSH tremendously and very quickly.  I first added it to my regular L-Carnitine but then after a while when I saw what it did, I took it without the Regular L-Carnitine.  1,000 mg of Acetyl along with my Methimazole was the maximum dose I took of it and the minimum dose I took was 225 mg.  I did not stay on 1,000 mg for very long as it worked so fast and I had to adjust dosage downward frequently.  I have never seen articles publsihed on the use of Acetyl-L-Carnitine and hyperthyroidism however but it was what worked for me and other hyperthyroid patients I know who tried it.  I always issue a warning about it though, it is so powerful and sensitive that it needs to be monitored very carefully with frequent blood work and adjustments.of both Acetyl and prescribed drug dosages.  I usually let the doc adjust the dosage of meds and I adjust supplement dosages.  I would always get and keep a copy of my lab work and I always suggest to patients that they do this.  It helps when posting to this Board, it helps you learn more about your disease and how best to see your progress.  Also if I were you, I would also want to know my antibody levels and have them done at least once a year or after any major changes in your lab tests.  Were you ever given steroids to take for your eye disease?  I see some patients on the Board who are given this.
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    • Posted

      I will comment with links I must find when I have some time, sadly this is not the right moment in my life with major changes occurring and little if no time left to scroll through the extensive literature I have read on the subjectof L Carnitine.

      I tend to be cautious with any supplements , and that includes Vit D , where dosage suggested has varied with each different endo or GP I consulted. It appears to be beneficial in protecting against cardiovascular diseases , so I stick to an average dosage, when I forget to take my daily one, I will add some to the next day s. VIt D dosage also has to be adapted to the area of the world where you live, in Northern countries the dosage can be double in comparison to say Spain or a Mediterranean country.

      the same app'ies to the season of the year, in the summer months we all tend to build up enough Vit D if exposed to sunlight over 30 mins a day.

      Steroids are usually given for eye bulging only during the inflammatory stages of the disease. However  once Graves disease has  " settled " - in my case I have  perfectly normal values since a couple of years-  steroids have no impact anymore. And the consequences of  thyroid storm that may have caused eye bulging can only be corrected through surgery at that point. 

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  • Posted

    Hello, I meant to ask you what type of surgery you have had for your eyelids, if not orbital decompression? I hope your endo  will find the right dosage to regulate your values, maybe the Methimazol you re on is dosed too low?  

    Hope you find an answer to your problem soon.

     

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    • Posted

      The surgery was to correct eyelid retraction: the upper was to loosen the lavatory and Mueller's muscle and left a scar across my eyelid, while a spacer material was inserted into the lower lid. It is an improvement over the retracted eyelids and eliminated the constant pain, so I am grateful for that that. But that eye continues to bulge; it just isn't as noticeable. And my eyes are asymmetrical. I wish I knew whether or not that eye will EVER stop bulging. My surgeon thinks that it will not and that, in fact, the other eye may begin to bulge and/or the retracted eyelids may retract again. I know the eye on which surgery was performed will have to be revised but I'm putting off additional surgery for 6 mos. at least, until then, I have to look less attractive. 😔

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    • Posted

      Would you PM the name of the surgeon that performed that surgery? . The only option I was ever offered was periorbital decompression, Since it is an invasive type of surgery and my problem is not that major, only slightly visible, I wonder if a lighter version, so to speak, might be more suitable in my case.

      thank you

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  • Posted

    Having slight exhophtalmia too  , and having tried several  topical remedies such as witch hazel, I am aware it can only provide a temporary relief but they have no impact on the issue itself. Once the lid has retracted only surgery, orbital decompression, can solve the problem. It is a very aggressive type of surgery, and there s no guarantee that in the event of another thyroid storm it would not trigger the same issue. As my surgeon explained .
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