Viewing 7 posts - 1 through 7 (of 7 total)
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  • snelsen
    Participant
    Post count: 1909

    This is my own experience. Each time my antithyroid drug (I was taking PTU) was discontinued, I reverted to hyperthyroidism pretty darn fast. My heart rate increased, my tremor was back, my appetite increased, my weight decreased.
    I was intolerant to heat, always hot, irritable, and had boundless energy, but not the healthy kind of enrgy. So I am someone who the ATD helped as long as I took it, and I never did revert to being euthyroid without the drug. I subsequently had a thyroidectomy, after a round of ATD’s again to become euthyroid. I am not THAT familiar with how long ATD’s are given, but I think the other scenario is that you take them for a while, then stop them, and some people are lucky, remain euthyroid (within normal lab limits, and feeling really good again.)
    Maybe you are reverting to your previous hyperthyroid state. Keep track of your symptoms, their changes, and call your endo.
    You will probably receive better information than mine from the facilitators. I just told you about my experience.
    Good luck, you have a lot of friends here! WElcome.
    Shirley

    cmrspea
    Participant
    Post count: 1

    I was diagnosed with Graves’ Disease in November of 2009. I was put on propranolol and Methimazole 10 Mg 2X a day. As my levels changed, my doctor changed my dosage. She told me to stop taking the propranolol after only a few months. 4 weeks ago my doctor brought me down to 5 MG of Methimazole every other day. Just recently, my doctor informed me that my levels were fine and told me to stop taking Methimazole. My question is, has anyone experienced any side effects when coming off of the drug? For example: Heart Palpitations. If anyone has any information please let me know. Thanks

    Christine

    Harpy
    Participant
    Post count: 184

    Is your TSH in the right range?
    My partners Endo will not drop the ATD meds(ptu) all together until her TSH shows a significant move into its appropriate range, even though her hormone(T4,T3) levels are in the optimal range.
    This would be an indication that the pituatory gland has restarted normal monitoring functions of thyroid hormone levels.
    One of the consequences of Graves/Hyper is the high hormone levels sometimes disable the pituatory gland and it may take a significant time in the right hormone range before it resumes it’s job.
    This is one(there are others) reasons many people go hyper again after dropping the ATD meds.

    cynthia
    Participant
    Post count: 82

    I have been om methiamazole for about 5 weeks recentily taken off to go on PTU reason being muscle cramps and pain in legs also extreme muscle weakness am feeling much better off and have slept for the last 2 nights 8 hours ( not great sleep but better ) still have very active dreaming which is unusal for me???? anyway on PTU now some itching but better than it was am waiting for my apt with surgeon on the 3rd…. cb

    Bobbi
    Participant
    Post count: 1324

    Hi, Christine:

    I’ve not heard of any "rebound" effects from coming off the antithyroid drugs. (Rebound, meaning that the symptoms it’s designed to suppress come back full force if you stop it too soon. This can happen with steroids and can happen with the beta blockers.) Your doctor — or pharmacist — might be able to better answer that question. If you find out anything helpful along those lines, please pass it along to us.

    jlw
    Participant
    Post count: 22

    I was taken off Methimazole at the end of March. Within two months, I was experiencing rapid heart rate sporadically. Pulse at over 100 and just sitting. My levels have been creeping down since I was taken off. I am not good now, and I know that later this week my levels will be too low. I have not been sleeping. I slept five hours last night, and feel fine. I am typically a 8 -9 hour a night gal, at least I was until I acquired Graves. I am tired. I am not losing weight, but think I am gaining. I have decided that is about the lack of muscle factor.
    My tremors in my fingers is back, my nails are all separating from the cuticles and breaking. My hair is dry and breaking. I am irritable for no reason. My eyes are protruding and my vision has changed.
    I have found that my symptoms tend to sneak up on me when my levels are off.
    I hope that you are checking levels regularly. I hope that you are not rebounding. I was so hopeful when I was taken off my meds.

    Ski
    Participant
    Post count: 1569

    We know that the antibody levels can rise and fall rather randomly, and there is some evidence that patients who are removed from ATD medications when antibody levels are LOW have a better chance of attaining and maintaining remission afterward. If your levels do not remain normal after going off the medication this time, you can potentially go back on the medication and try again for remission later. That time you may want to check antibody levels prior to discontinuing medication. Otherwise, the only "side effect" of going off ATDs is that your hyperthyroidism can return. Be vigilant.

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