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    Old 12-01-2008, 02:48 AM   #1
    Join Date: Nov 2008
    Location: Castle Rock, Colorado
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    cathico HB User
    Methimazole for life

    I have Graves. Is there any reason a person cannot stay on methimazole (tapazole) to control hyperthyroidism the same way you can be on synthroid for hypo. My thyroid has been just outside of range (TSH) wise for the last 15 years. I did a year on methimazole (2.5 mg) and it was normal for that time. I got off in June and now the TSH is below .001 again although the t3 and t4 are normal. I am starting to feel somewhat symptomatic and took the methimazole two nights ago. Why can't I just stay on that as needed as long as it keeps my numbers in range and I feel better? Are there concerns that hypo people don't have with synthroid? I do not want to have my thyroid nuked or removed. Any advice. I'm new to this forum and hope I can get some answers.


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    Old 12-01-2008, 03:54 AM   #2
    Join Date: Nov 2008
    Location: Sydney NSW Australia
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    vh90453 HB User
    Re: Methimazole for life

    I also have graves, I was diagnosed 5 years ago and have been in remission for 4. I took neomercizole which I assume is the same as methimazole ( I'm in Australia). The meds fixed my levels and I went off them after 1 year. I then had blood tests 6 weeks later and my levels were still in the normal range so I was pronounced in remission. Had my bloods not been within the normal range I'd have had my thyroid zapped or removed. My Endo said he would not let anyone take the drugs for longer than a year as they can have serious side effects like affecting your white blood cells. I also didn't like the idea of being zapped or having my throat cut, however, I would have chosen that over the risk of the side affects. He also said about 50% of sufferers go into remission after a year, lucky me. I know how awful the symptoms are, everytime I get hot or have rapid heart beats or any of the other numerous symptoms I think oh no it's back. I have blood tests about every 6 months. I think you should see your Endo and get his advice. I hope that helps.

    Last edited by vh90453; 12-01-2008 at 03:55 AM.

    Old 12-01-2008, 05:23 AM   #3
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    accessn12 HB Useraccessn12 HB Useraccessn12 HB User
    Re: Methimazole for life

    Hi cathi,

    Some people do stay on tapazole for life. It pretty much depends on a person's individual situation and their doctor's beliefs. Now, there is a very, very small chance that it could affect your wbc's. That's the case with a lot of medications. One of the main concerns is that being hyper is more dangerous than being hypo and I've found that it scares most doctors. The minute you say "I'm hyperthyroid", it's like you've just put a curse on yourself and they don't wanna go near you. It's a lot rougher on the body and it's terribly important that you not allow it to get out of control.

    If you feel well on medications and you're staying in good control, nothing says you can't continue on medications. You'll find arguments for and against it. Even the experts can't seem to agree. The thing you've got to remember is it's your choice. A doctor cannot force you to do something you don't want to do. The worse they can do is fire you as a patient but mostly I've found they'll just go along with you as long as you are basing your choice on reasonable, well thought out research.

    Read up on it. There's a lot of information out there. Look at some of the studys and decide what's best for you.

    Take care and good luck.

    Old 12-01-2008, 04:04 PM   #4
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    GravesGirl73 HB UserGravesGirl73 HB User
    Re: Methimazole for life

    For the most part, the white blood cell thing is RARE and usually happens to people at the beginning of treatment. If you have a sore throat and fever (which can be a sign of the wbc thing) a simple blood test will show anything wrong. as long as you know this sign and get a blood test, you are okay. Anyway my doc says any thing that happens is reversible if you just stop taking the med. If you get cbc's done and liver panels done while on the drug, it's fine. My husband takes lipitor and bp meds and has to have these tests every 6 months or so, also my Mom, so there are other meds that carry certain risks and you have to be monitored. If you read the side effects of Cipro, an antibiotic,you'd never take it! I had a bad reaction to it as it messed with my heart rate, and made me very anxious. It got worse the more days I took it. Caffeine taken with this drug can make these side effects, it intensifies the effect of caffeine, I found this out after researching it, as soon as i stopped it I was it IS good to know the side effects of any meds you take. All in all I think Methimazole doesn't have dangerous effects, especially taken on the low dose of 2.5. If you can be controlled on that low a dose, I would say it's safe. I have taken that dose and 5 mgs. for over 2 years. My GP who is treating me for the time being, says he has other patients on a low dose for years. I have also heard the longer you're on it the more chance of remission.What accessn said is true, docs are afraid of hyper cause you can have a thyroid storm and sue them. It's a malpractice thing, they rather be safe than sorry.

    Old 12-02-2008, 09:24 AM   #5
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    mkgb HB Usermkgb HB Usermkgb HB Usermkgb HB Usermkgb HB Usermkgb HB Usermkgb HB Usermkgb HB Usermkgb HB Usermkgb HB Usermkgb HB User
    Re: Methimazole for life

    My Aunt has been on Tapazole for over 13 years.. I do not see any reason why you can not stay on it if you need it and it continues to work. The key is to go in for frequent TSH, Ft3 and Ft4 testing to make sure that your levels are alright and you are not being overly suppressed. I hate when the MD pushes for the RAI when a simple pill will keep you in one piece.

    If we learn by our mistakes, I am working on one hell of an education.

    Old 07-26-2011, 05:04 PM   #6
    Bonny Rozetta
    Join Date: Jul 2011
    Location: Miami, Florida
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    Bonny Rozetta HB User
    Re: Methimazole for life

    Hi Cathi! Recently, I was diagnosed with hyperthyroidism. My doctor is pushing me to get it nuked (RFA). Just to see the endocrinologist (initial visit) costs $200.00 and I can't afford it. I went into the hospital, via ambulance, because of atrial fibrillation with a rapid ventricular response. My heart beat was 198 beats per minute. He advised me to go on disability and the process has started. In reading others comments, I have seen where one person has been on methimazole for 13 years. One other person said that a doctor is afraid of a thyroid storm. Can anyone tell me what that is? Just my medications every month are hurting me a lot, and I don't have insurance. Thank you everyone for your help.

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