WEIGHT GAIN AFTER STARTING METHMZOLE AND STEROIDS

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I was diagnosed with Graves disease in November 2014. I also have TED which drastically affecting my vision. My doctor has me go thorugh a series of steroid treatments to help with the inflammation around my eyes. SInce starting steroid treatment and taking methimazole Ive gained 35lbs that I cant seem to get off no matter what I do. Any sugggestions on how to lose weight while taking these medications. Please Help!

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  • Posted

    Dear Michelle

    I was diagnosed with SEVERE Graves and mild TED in 2012 and my endo put me on a block and replace regime of  thyroxine and carbimazole plus propranolol.

    My weight crept up and i eventually put on about 2 stone!

    As far as I can tell from other patients on carbimazole it is almost impossible to lose any wight gained.

    A low calorie diet plus lots of excercise may help but it is very likely that until the medications are stopped, the weight will not shift.

    Good luck though and I will check your other responses in case anyone else has had better luck!

     

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  • Posted

    Steroids especially cause weight gain as do high doses of antithyroid drugs. However, they are necessary in your treatment.  I read an article on the beneficial use of L-carnitine in hyperthyroid patients and adding this supplement might help you along with a healthy diet in protein, fruits and vegetables, avoiding aspartame, sugar and gluten.  Many patients with TED have said that the supplement Selenium 200 mg or 2 brazil nuts a day is helpful to their eyes.  Others have also said that cotton pads soaked in witchhazel and placed over closed eyelids help also with the symptoms. 
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  • Posted

    I know steroids can cause weight gain, and methimazole certainly can.  My second Endocrinologist started me slowly with the methimazole to help prevent weight gain, but by then I was not in a critical condition anymore with my heart rate being in the low to normal range.

    The eyes are not affected by the thyroid hormones, but by the same autoimmune anibodies that affect the thyroid, therefore the anti thyroid drugs don't help the TED.

    To me, it is the sense of well-being that comes when your body is treated right, that helps calm the autoimmune attack.  Officially, however, the doctors do not know how to make the autoimmune attack subside.  

    Also, it is a very fine line between having symptoms of hyper and hypo thyroid.  The doctors base their treatment almost entirely on the TSH test and to a small degree on the other blood tests, hardly ever on symptoms, unless they are life-threatening like having a fast heart rate.

    Since I have been in remission, using Acetyl-l-Carnitine seems to have helped me stay in remission.

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    • Posted

      I think the Acetyl-L-carnitine use also lowered my antibodies Fern.  I am off of both of the Carnitines now as my results were headed toward hypo at the bottom of the range and I was getting palpitations on them which disappeared when I stopped it.  My results now are right where I want them and my antibodies TSI is not detectable now and my TRab is less than 2, which indicates both are normal.  I still remain on 2.5 mg of methimazole which my Endo has given me the choice to either continue or discontinue.  I am going to continue it for another 6 months to ensure my lab results stay stable before I try going off of it.

       

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    • Posted

      I don't seem to have any problems associated with the ALC use, but I may find out otherwise in July when I get my next blood test.

      How often do you get your labs done?

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    • Posted

      When I was on Acetyl I was getting labs every 4 to 6 weeks, sometimes more often if I used my Endo's lab slip and then my GP's as well.  I usually find the problem is not with Acetyl taken alone but when combined with Methimazole.  Also if a patient's labs are extremely out of range, it does take a little time for them to change but honestly other patients have posted dramatic changes in lab results so quickly that they were rendered hypo before they knew it and didn't feel good. 

       

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    • Posted

      I suppose that could happen with the antithyroid drug as well as far as the quick changes though usually doesn't happen with Graves patients.
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  • Posted

    Hi michelle, I am going through the same thing and I put on so much weight with the steroids even with eating well and going to gym. My gp said you can starve yourself and still put on weight I'm sorry to say. So I don't think there's anything that can help with the weight gain. Just ensure if your taking steroids it's beneficial for your eyes or there's no point. I come off steroids after 2 months and still struggling to lose the weight. I have constant double vision and is affecting my life in so many ways. I was really scared but now just extremely frustrated. I'm on a study with Moorfields eye hospital in london taking part in an infusion drug trial with slight improvement but from what I understand the TED will last approx 2 years and will burn itself out eventually. Hopefully your thyroid can be stable and you/ we can lose weight in the future. As it is s massive issue for me also. Good luck and hope your eyrs get better soon. You are not alone.

    matt

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    • Posted

      It's so depressing. I hate looking at myself in the mirror. I pray I dont gain anymore than the 30lbs I already gained. It's reassuring to know that someone understands what I'm going thorugh and I'm not alone.

      Thank You for responding

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    • Posted

      I really do understand, because I have diplopia and TED, I too, never look at myself in the mirror. But honestly it won't always be this way and you must know it will improve and somehow keep positive. The steroids can help with the gym believe it or not. Smoking is really bad for TED patients, but don't get too depressed because you can always lose the weight after everything has calmed down. Eat brazil nuts or take celenium for your eyes. You will be ok. You live in London, if so def get yourself to Moorfields eye hospital. Keep in touch anytime. Cause I spent months with sleepness nights through worry. Does get better
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    • Posted

      Thanks for the encouraging words. As the weather is gets colder and he wind picks up my eyes are also getting worse. They are very watery at night and I have to continously keep wiping them. They basically hurt all the time. I'm still gaining weight and very depressed. I find that I'm isolating myself from the world because of this disease. I ventured out to my sons football game this past weekend, As i was standing cheering on the team with a friend that had a horn. This stranger felt the need to come tell us that everytime my friend blows the horn my eyes gets big. She said it was very comical to watch. I was devastated and embarrassed. I cant control nor do I know when my eyes get as large as golf balls. I'm tired of people commenting on the size of my eyes. Depressed is a understatement for the way I feel right now.

       

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