Graves Disease

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Hi I'm depressed... my hair is falling out in droves, one eye is larger than the other, I am on methimazole and Propranolol and my doctor is out for childbirth and I'm very depressed. I'm am upbeat person but this disease is ruining me. I have gone gluten-free I joined the gym I am yet to work out probably tomorrow, I have only gluten free food, vegetables and fruit.

Does anyone know what to do about the hair falling out and the thyroid eye disease? I'm very scared. I did see an opthamologist he said I have eyelid retraction and has referred me to a surgeon. My insurance company won't cover the surgeon because I think it's plastic surgery. We are working on an authorization.

Any advice or assistance would be greatly appreciated. Thank you

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  • Posted

    I would not exercise unless your lab values are well under control.  What dosage of Methimazole are you on?  What worked for me was adding supplements to my Methimazole dose.  When I did that, my lab tests normalized faster.  I added 3,000 mg a day of Regular L-Carnitine, 1,000 IU daily of vitamin D and 200 mg of Magnesium along with Omega 3 and Curcumin to lower inflammation.  Selenium 200 mcg a day is supposed to help eye disease or eating 2 brazil nuts a day.  I would say normalizing your labs will also help the hair.  You should be able to convince your insurance company that surgery is necessary to preserve your vision.  

    Please keep us posted on your progress.

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    • Posted

      Thank you, Linda. I'm on 30mg of propranolol from 60mg and 5mg of methimazole now. My endo upped me to 20mg of methamazole in April, from 7.5 which was awful. I gained 8lbs in a week or two, and my throat felt weird, thick. I lowered it myself to 10mg 2 weeks before my next office visit. My labs came out bad I guess because she told me to stop taking the methimazole completely and lowered the propranolol in half. Then I felt anxiety, nervousness, heart palpitations so I started talking 5mg and called their office. The nurse called me back and said I did the right thing by taking the 5mg but that the dr said if I keep treating myself she won't treat me anymore. I understood. Then the doc referred me to a surgeon and left for maternity leave. I called to have my blood tested again but the nurse said no, there are no orders and they won't do it for me. The only thing the doc left in my file was that I was referred to a surgeon.

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  • Posted

    I'm sorry you are going through such a rough time . The meds should have helped. Mine was falling out bad too but got better with meds. The exercise thing stinks because I was doing Zumba and had to quit per Dr orders . You could maybe do low impact ? Is there someone taking her call or care of her patients while she is out ? Maybe your meds need to be adjusted ? Don't have an answer for your eye issue. Try to stay positive, it's hard I know but you just need to get on the right track with treatment . Sending positive vibes your way smile

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    • Posted

      Thank you, Rebecca! The nurse said the dr taking over was on vacation. The doctor, in my opinion, gave up on me. She stated once that I had the weirdest case of Graves she'd ever experienced. And they won't test my blood and they won't help me. I'm seeing my primary care dr Friday I'll ask her to do the TSH labs. I'm not sure where I am now on these meds and where I should be. I am gluten free now. I'll do low impact. No dr told me that I couldn't exercise.

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    • Posted

      You could have both Graves and Hashimoto's together.  When you see your new doctor, ask him/her about that possibility and ask to have all your antibodies tested for it.

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  • Posted

    Oh dear Sandi you are not alone..once you are established on your medication your symptoms will subside. The propanolol should help greatly with cardiac symptoms. Listen to your body in terms of exercise. This horrid disorder messes with your head too, your depression and other unwanted emotions are part and parcel of the disorder. I had a big eye as the first symptom of Graves, followed by what you describe including loss of hair. I was diagnosed in 1992 and had a very long and happy remission for many years following a couple of years treatment with PTU. It's very hard to stay positive but things will get better. Good luck and keep chatting on here for support.

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    • Posted

      Hi Veronica. Thank you very much. I'm hearing that PTU is better than methimazole for symptoms but worse for your liver. Is this true?

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  • Posted

    What are your levels? My hair got really dry and brittle and was falling out by the Handful. Then when my levels started getting more normal my hair stopped falling out and started feeling back in. My doctor is also gone on vacation and basically left me guessing on my meds. I'm on methimazole and atenolol. I'm about 6 weeks out from starting meds and I have my ups and downs and bouts of depression but I am SO much better than when I was first was diagnosed . Hang in there it does get better!

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    • Posted

      My hair is awful. Brittle, dry, not shiny, and falling out in droves. I haven't a clue about my levels because my doctor left for 2.5 months to have her baby. She wrote in my file that I've been referred to a surgeon. Not very professional but in Florida I find Healthcare a battle.

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    • Posted

      Oh and when she stopped the methimazole and decreased the beta blocker that's when my hair strated this awful change! I told her about my hair and she said the medicine is doing it. I begged to differ so she gave up on me. Sad.

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    • Posted

      I read that after I left a comment. I ended up going to my family doctor because my Speacialist has been gone for weeks now and won't be back for two more weeks. My family doctor was mad and put me back on my atenolol because my hr was going too high.

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    • Posted

      I'm so sorry. The beta blocker is safer than the alternative.

      I had AFIB so bad that's how the hospital detected the hyperthyroidism. I was sent to the ER by my family doctor (pcp) in April 2015. I'm going to see her Friday and going she'll give me blood lab orders. I want to get better! I haven't tried yoga yet. I've tried acupuncture. I'm not sure that will help me.

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  • Posted

    I was allergic to Carbimazole which is same as Methimazole so had no choice but to swap to PTU so couldn't really say. They both aim to regulate thyroid hormones. It took some trial and error but eventually I did enjoy an 18 year remission. I had anothe relapse last year and this February after lots of research I had RAI, so far so good. I feel great with no weight gain and all levels bang on normal!. So there is lots of alternatives to consider when tackling this horrid disorder, as others on here have said, hang in there, it can be a slow process. Good luck.

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