Hi there! I have had thyroid problems for ages, and have been on tapazole. I am planning to get off tapazole, and I am prepared for the hard work. However, I would like to hear at least one personal experience or words of advice before I do so. All replies are more than welcome!!!!
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Hello! I may have some info for you. I would suggest that you start slowly, and taper gradually to keep your thyroid from rebounding. It takes about a week for changed dosage to influence the thyroid activity. Eventually, the thyroid levels will regulate themselves on the certain dosage. The problem can be changing your diet, as you don’t know how the thyroid will react to this. If your levels start to drop toward the lower end of the scale, you'll be able to taper the dose down a bit - to 20 mg a day. But don’t tapper too much and too fast. You may feel the hyper symptoms, and could still be in the "normal range" yet toward the higher end of it. I am very close to getting off. I'm currently taking 1 mg - three times a day. It’s hard to break a 5 mg but it is possible and all for a better cause.
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Hi there!
It's really encouraging to read your story of how you are almost off Tapazole.
I'm presently weaning myself off it too!
I was on methimazole/Tapazole at 20 mg/day from Dec. 2008 until March 2009, and was able to function, then told to stop cold turkey in order to do a test (which did confirm Graves' disease diagnosis). But from then I got really sick and was unable to work for a year: exhaustion, rapid heart rate, raciing thoughts - I mean extremely, that would go on for a couple days after a mildly stressful event, anxiety, irritability, the biggest part was only being able to stay up for an hour with 3 hours rest in between, for months on end, gradually gradually, thank God, I was able to stay up longer, and after 13 months off work I was able to return just afternoons, in May! :-D Yay! I can still feel that I am getting better and better as time goes on.
During that time, my medicine was reduced (mostly me reducing it :-)) to 2.5 mg, twice a day, so 5 mg/day. I have been stable on that dose for many months. According to the blood tests! And according to my symptoms, probably since April, 2010.
My naturopath said I had adrenal fatigue also, and treated me for it with a diet and Adrenasense herbal support which you can buy at a health food store. Please don't underestimate the importance of the adrenal health. With our stressful lifestyle, many of us have the fight or flight response every day, which is hard on the adrenals, and people can easily burn out. Furthermore, adrenal health affects thyroid health and vice versa, and they both affect the health of the entire endocrine system and indeed of the whole body, mind, emotions....! She thinks my thyroid problems may have begun with adrenal fatigue.
So, the last few days I have begun to wean myself off methimazole (tapazole). I took two half pills a day, then one half pill, then two then two quarter pills, then back to two half pills. Today is the last day I 'm going to take 2 half pills of Tapazole. Tomorrow I will start taking just a quarter pill twice a day, to get down to 2.5 mg/day, and eventually, soon, get to no pills a day! Then around Feb. 20, I take a blood test, and see my specialist at the end of February. I have some pain in my thyroid and a bit of that desperate feeling where you have to say certain things, or do them. I'm very tired. When I forgot to take it before, I had some symptoms, but my naturopath said it could be just the reaction to it suddenly being free! Rather than it going up. So she said to wean off it very slowly, like I explained, and even doing like 2,1, 2,2, 1, 2, 2,1 2,1 2 1 2 112 11 211 2 1112 111111111 to get off it very slowly very very slowly!!!! This works for me, because it was when I went off it suddenly two Marches ago, that I became unable to function normally for over a year. So I definitely advocate the slow approach.
I also have avoided the RAI "treatment" because I love my thyroid, it is very important to my wellbeing and if you zap it with radioactive iodine, you have to take drugs for the rest of your life. I heard from a friend who was so depressed after that he wanted to just curl up and die. On the other hand, for others it works very well!!!
But, this way, using medicine and herbal and alternative therapy, our thyroids can get better. If you keep a fresh diet, take supplements like fish oils, vitamin D, B complex, adrenasense for your adrenals, and get good sleep and exercise and a good outlook on life, you can get well from this!!! :-) People have done it!
Also, I was told not to get the RAI if you are pregnant or would like to become pregnant! After 3 doctors tried to convince me to get the RAI, one doctor told me that it's not good for young women who want to get pregnant. So I was thankful I had made that choice to not get it, and that he had told me!
As for Methimazole or Tapazole, it has really helped me a lot! I am very thankful for it! However, I have been on it long over a year, and although my Endocrinologist says it's safe to stay on it at low doses, I understand that it can cause you to go hypothyroid if you stay on it too long. So that is why I'm trying to get off it now. I told that to my doctor and he said I could try coming off it and see what happens. So that's what I'm doing.
What else? I have a question: Have you weaned yourself off it successfully, by now, and what kind of symptoms did you see in the process, and did it bother you, or were they just the sort of pendulum swing symptoms that you can expect initially and that just go away? I am working and I want to stay well.
Have a great day! Peace, Rachel
It's really encouraging to read your story of how you are almost off Tapazole.
I'm presently weaning myself off it too!
I was on methimazole/Tapazole at 20 mg/day from Dec. 2008 until March 2009, and was able to function, then told to stop cold turkey in order to do a test (which did confirm Graves' disease diagnosis). But from then I got really sick and was unable to work for a year: exhaustion, rapid heart rate, raciing thoughts - I mean extremely, that would go on for a couple days after a mildly stressful event, anxiety, irritability, the biggest part was only being able to stay up for an hour with 3 hours rest in between, for months on end, gradually gradually, thank God, I was able to stay up longer, and after 13 months off work I was able to return just afternoons, in May! :-D Yay! I can still feel that I am getting better and better as time goes on.
During that time, my medicine was reduced (mostly me reducing it :-)) to 2.5 mg, twice a day, so 5 mg/day. I have been stable on that dose for many months. According to the blood tests! And according to my symptoms, probably since April, 2010.
My naturopath said I had adrenal fatigue also, and treated me for it with a diet and Adrenasense herbal support which you can buy at a health food store. Please don't underestimate the importance of the adrenal health. With our stressful lifestyle, many of us have the fight or flight response every day, which is hard on the adrenals, and people can easily burn out. Furthermore, adrenal health affects thyroid health and vice versa, and they both affect the health of the entire endocrine system and indeed of the whole body, mind, emotions....! She thinks my thyroid problems may have begun with adrenal fatigue.
So, the last few days I have begun to wean myself off methimazole (tapazole). I took two half pills a day, then one half pill, then two then two quarter pills, then back to two half pills. Today is the last day I 'm going to take 2 half pills of Tapazole. Tomorrow I will start taking just a quarter pill twice a day, to get down to 2.5 mg/day, and eventually, soon, get to no pills a day! Then around Feb. 20, I take a blood test, and see my specialist at the end of February. I have some pain in my thyroid and a bit of that desperate feeling where you have to say certain things, or do them. I'm very tired. When I forgot to take it before, I had some symptoms, but my naturopath said it could be just the reaction to it suddenly being free! Rather than it going up. So she said to wean off it very slowly, like I explained, and even doing like 2,1, 2,2, 1, 2, 2,1 2,1 2 1 2 112 11 211 2 1112 111111111 to get off it very slowly very very slowly!!!! This works for me, because it was when I went off it suddenly two Marches ago, that I became unable to function normally for over a year. So I definitely advocate the slow approach.
I also have avoided the RAI "treatment" because I love my thyroid, it is very important to my wellbeing and if you zap it with radioactive iodine, you have to take drugs for the rest of your life. I heard from a friend who was so depressed after that he wanted to just curl up and die. On the other hand, for others it works very well!!!
But, this way, using medicine and herbal and alternative therapy, our thyroids can get better. If you keep a fresh diet, take supplements like fish oils, vitamin D, B complex, adrenasense for your adrenals, and get good sleep and exercise and a good outlook on life, you can get well from this!!! :-) People have done it!
Also, I was told not to get the RAI if you are pregnant or would like to become pregnant! After 3 doctors tried to convince me to get the RAI, one doctor told me that it's not good for young women who want to get pregnant. So I was thankful I had made that choice to not get it, and that he had told me!
As for Methimazole or Tapazole, it has really helped me a lot! I am very thankful for it! However, I have been on it long over a year, and although my Endocrinologist says it's safe to stay on it at low doses, I understand that it can cause you to go hypothyroid if you stay on it too long. So that is why I'm trying to get off it now. I told that to my doctor and he said I could try coming off it and see what happens. So that's what I'm doing.
What else? I have a question: Have you weaned yourself off it successfully, by now, and what kind of symptoms did you see in the process, and did it bother you, or were they just the sort of pendulum swing symptoms that you can expect initially and that just go away? I am working and I want to stay well.
Have a great day! Peace, Rachel
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Been on Tapazole for 13 months after being diagnosed with graves disease. Got dosage down to 5mgs. 2 days on, one day off and this past week my endocrinologist gave me the choice of either going right off Tapazole or going off it slowly. I'm very upset because I figure he's the doctor and shouldn't have left that choice up to me. However I choice to go off the med and now I'm wondering what the side effects may be because of my choice. If someone else had been through this I'd certainly like to know their opinion.
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It is not really safe to stop it suddenly. They told me to do that when I was taking 4 pills a day (20 mg) to get a test. This was very irresponsible of them and I was not able to be well enough to work for a year after that. You should go off it slowly. When did you start going off it? You should not shock your body that way. Levels of hormone can swing up quickly. I agree, doctor should have told you this. Doctor did not tell me this , it was my naturopath, but I am glad I listened to her. Best, Rachel.
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I take 5 mg at night and 2.5 in the morning. This is perfect for me. Please adjust and get your doctor to test - YOU have the right to tell your doctor/ask politely lol, because you are the one they are working for. Maybe paid for by government or yourself or medical plan, but still you are the one who has the right to say. Sounds like your doctor wants to work with you though if he gave you that choice.
oh but if it is only 5 mg/day maybe that is ok, but you could try taking half every day and then see how that goes, then get off completely. Slowly is the key with tapazole, I was told.
oh but if it is only 5 mg/day maybe that is ok, but you could try taking half every day and then see how that goes, then get off completely. Slowly is the key with tapazole, I was told.
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when you say you have weaned yourself off are you doing this without your drs ok? I was taking supplements for a time and was feeling so much better during that time and thought I would stop my tapazole without telling my specialist and so for three weeks I was off tapazole and never told anyone what I had done but was very proud of myself for thinking that I was healed all on my own. I went for blood work every 8 weeks and my last blood test was so alarming I got a call that very day and went from 3 pills a day to six for four months. I still havent ever told my specialst what I did but I stopped taking chances with my health and now listen to my specialist who is awesome at what she does. I was down from six pills a day to four to three to one and as of today on my birthday Jan 6 2015 I was given the best bday present when I was told I;m in remission and dont have to take any meds and will have to go for blood work every 4 weeks to keep an eye on it. I hung up the phone and cried and thanked God for answered prayer. My prayer after reading all your posts is that I don't end up with these old symptoms again. let me tell you I was actually told when first diagnosed that I was a fingers length away from having a heart attack. I had every symptom and a goiter four times bigger then normal. I had lost so much weight (and I have never been able to lose weight my whole life) shaking so bad and because I didn't know what was wrong with me took my camera back to the store because the pictures all turned out blurry due to my horrible shaking I realized much later.I had brain fog and my mom always tells me how hyper I was.I started looking like a dead fish by the sea shore. I looked in the mirror one day and thought my face looked like someone let the air out of my face. I fell to the ground crying and whaling and begging God to help me feel NORMAL again.For all of you suffering with hyperthyroidism Know that you ARE NOT ALONE.. we who have it know your pain and feel with you but also know that there are many stories of victory. I have had it for almost three years and its been a very lonely sad scary defeated feeling but IT DOES GET BETTER. My prayers are with you all
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thanks for letting us know what you have gone through. I have had this for 2 years and I just got off the tapazole for at lease 6 weeks until the check my blood again. I am feeling ok just scared that I will be back to where I was 2 years ago, but with Gods help and my awesome doctor I hope that it will be all good.
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Hi All, so...getting off methimazole.
I'm going to guess I got lucky after searching around and finding out what happens to others cold turkey.
I also got lucky that I only had to do 5mg (once)/day/4 days a week to keep it in check.
Anyway, must have been hyper for many many years, 4 years before diag. Primary wanted to try anti-anxiety and Prosac. ?????????????
Took methimazole for 5 yrs, dropping it once after to to see on doc's orders.
Nope, few short weeks and old tremors, anxiety, depression and "why can't I rip your head off?" returned.
Had oral surgery coming up and bruising/healing problems from methimazole so had to stop. Stopped in Dec for oral surgery now (July). Didn't tell doc. He has since'd
retired anyway.
I have been very lucky with no ill effects. Trembling gone, I don't HAVE to rip your head off :), mild tiredness I can mostly deal with.
Now need official clearance before surgery (boo).
But while I know someday it may return I am enjoying this for now.
Peace to you all and best of luck on your own personal journey.
From one who knows.
I'm going to guess I got lucky after searching around and finding out what happens to others cold turkey.
I also got lucky that I only had to do 5mg (once)/day/4 days a week to keep it in check.
Anyway, must have been hyper for many many years, 4 years before diag. Primary wanted to try anti-anxiety and Prosac. ?????????????
Took methimazole for 5 yrs, dropping it once after to to see on doc's orders.
Nope, few short weeks and old tremors, anxiety, depression and "why can't I rip your head off?" returned.
Had oral surgery coming up and bruising/healing problems from methimazole so had to stop. Stopped in Dec for oral surgery now (July). Didn't tell doc. He has since'd
retired anyway.
I have been very lucky with no ill effects. Trembling gone, I don't HAVE to rip your head off :), mild tiredness I can mostly deal with.
Now need official clearance before surgery (boo).
But while I know someday it may return I am enjoying this for now.
Peace to you all and best of luck on your own personal journey.
From one who knows.
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Hello I'm glad I found this. I got diagnosed with graves approx 1 year ago I responded good to tapazole however I was sick with a cold and forgot to take my meds for like a week? I'm on 2.5mg sun, we'd, Friday I was stressed about some things before. But I was stressing about some dumb things before. But it started about Monday its about five days and the whole week my anxiety is through the roof! It got to the point where I could barely eat. Having irrational thoughts worries. And I am still could thins be a side affect of relapse or not taking my meds? It flared up my GERD do now taking Prevacid and going to go to the counselor.. But I'm wondering now if it could be missing dosses?
Please get back to me..
Thank you so much!
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Hi Rachel, are you finally off the methimazole? I am also trying to wean off and am having really really really bad anxiety is this normal???? my dr. didnt warn me about any of this I am having a hard time working without panicking and having to leave. why does this happen? i have been taking 2.5 mg of methimazole every other day for the past 3 years which is 4x a week and now she told me to just take 2.5mg once a week for 6 weeks and then just stop. any responses appreciated thx Lauren
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yes. I found out the hard way. I got pulled over for speeding on Christmas eve last year. The state patrol who should be serving and protecting, was searching to destroy based on my appearance bulging eyes, unable to hold head back and count due to goiter,and the yellowing eyes and tremors crawling skin causes jerking movements. He naturally handcuffed me and searched my car in which I had marijuwana and had already told him. I was taken to jail where I was geld for two weeks without my medicine and let me tell you I got sick with peripheral edema, vasculitis. i teally feel I have late stage chronic lime. no one will listen. don't know how much more I can take of feeling this way. manic bipolar unable to get along with others. brain fog, loss memeory, Phantom touch Help me please, unemployed, GA medicaid. unable to get any financial help*SSI/DISABILITY DENIED X4
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If you go off tapazole cold turkey you can go into a thryoid storm and possibly die it happened to me I had dry heaves bad thank god I made it through the night
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HI, I was diagnosed with Graves Disease last fall (2016). I was on 10mg daily of Tapazole, went to 7.5 in the early winter but also returned to work at same time (bad idea). Went back to 10mg, after 2 consecutive blood tests were good (12 weeks) and then went to 7.5, just did a another 12 week stint, all is good so went to 5 mg this week (very happy). When I say all is good, my TSH level is still less than .01 but that takes longer to bounce back. My T3 and T4 are at mid to lower end of the range. I did this (decided to lessen the dose) all by myself with a naturopath's advice (my "specialist" seems to have forgotten about me and never did the follow up in mid-March, and I am not disappointed =;) The biggest help has been to deal with my stress. I now what bugs me, I try to avoid situations, when I can't, I do deep belly breathing (sound weird but I only ever did shallow from mouth to lung breathing, and that is NOT good -check it out, really worth it)...I have tried a diet change (gluten free, dairy free) but I do not think it was necessary for me BUT it did make me focus on me and my health ( I am exercising regularly now) which WAS beneficial. I just wanted to tell everyone DON'T GIVE UP and DON'T TAKE THE RADIATED IODINE or have your thyroid removed (unless there is a growth of course...). If your regular doctor can't explain why you have this problem, it can be fixed...check out naturopathic ways to treat symptoms, you are worth it. Good luck!!!
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Your story is exactly like mine. I STOPPED TAKING mathemizol on may 11, 2017 after 3 years of being sick. I retired in 2015 because I was unable to work. My blood pressure was constantly high until I was off of medications. I refused to take blood pressure the whole time. I just watched my diet, no red meat, no sugar, no wheat or dairy, and room temp water. I feel wonderful now. Thank God for my good health again.
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