Taking methimazole for 10+ years

ResearchBlogging.org

In the US, most Graves’ Disease patients get herded into either radioactive iodine treatment (RAI treatment) or surgical thyroid removal.  These are seen as “definitive” treatments, meaning permanent fixes.  There is some truth to this as it is impossible to be hyperthyroid if you don’t have a thyroid.  Taking anti-thyroid drugs, on the other hand, is seen as a temporary solution, usually for less than two years, before getting one of the “definitive” treatments.

Anti-thyroid drugs are, indeed, not definitive.  20-70% of Graves’ patients relapse after stopping medication.  In that sense, these drugs don’t “cure” the disease, while the “definitive” treatments do.
However, after surgery or RAI, people usually become hyp-O-thyroid (too little thyroid hormone) and have to take supplementary hormone.  The choice,  from the patient’s perspective, is then either a lifetime of taking an anti-thyroid drug (such as methimazole, tapazole, or polythiouracil), or a lifetime of taking a “pro”-thyroid drug, such as Synthroid, Levothyroxine, or Armour.

If you have to take a pill every day no matter what, what’s the difference?

The antithyroid drugs have some minor side effects (rashes, headaches) as well as some rare, but very scary ones, such as agranulocytosis (loss of your white blood cells), problems with blood clotting, and death of liver cells.  The “pro”-thyroid drugs have fewer serious side effects (possibly a slightly increased chance of osteoporosis, some digestive upsets).  However, the risks of the “definitive” treatments themselves are worth considering.  RAI is thought to strongly increase your risk of developing Graves’ Opthlamopathy, an eye disorder.  Surgery and anesthesia have numerous inherent risks.

One solution that is common in Europe, but less so in the US is just staying on the anti-thyroid drugs permanently.  This eliminates the risks of surgery or RAI, has the same impact on the daily life of patients (one or two pills a day), and, as long as you tolerate the drugs and don’t develop the nasty side effects from them can, presumably, be taken indefinitely.

The study I’m discussing today tests that last assumption – is taking methimazole as a long-term treatment safe and effective?

The authors started with 504 patients who were treated with methimazole for 18 months, after which treatment stopped but the patients were monitored.  104 patients’ hyperthyroidism returned within a year.  Of these, the authors randomly treated half with RAI and half with more methimazole.  They then followed these patients for 10 years and measured many indicators of their health, including liver enzymes, cholesterol, bone density, thyroid hormones, and cardiac tests (among others).

After 10 years, they found that the groups had similar thyroid levels, similar cost of treatment (from the perspective of the health care system) and many similar blood values. The RAI group had slightly higher LDL (“bad cholesterol”) levels, slightly lower bone densities, and similar cardiac tests.  However, the methimazole group had more goiter and higher anti-thyroid antibody levels.  The authors concluded that long-term use of methimazole was a good alternative to surgery or RAI.  They say:

“Except for mild side effects, serious reactions are rare, and the risks of occurrence of cardiac and bone complications are equal to or less than those of radioiodine therapy…[A] possible approach to the therapy of hyperthyroidism may be to control the disease, for a lifetime, with antithyroid drugs. The remarkable lack of MMI side effects and the apparent high treatment compliance in this study prompt the adoption of an alternative approach such as this.”

End result?  As long as you tolerate it (and most people do), long-term use of methimazole is a decent alternative to RAI or surgery.

Abstract

Objective: To investigate the long-term effects of continuous methimazole (MMI) therapy. Design and methods: Five hundred and four patients over 40 years of age with diffuse toxic goiter were treated with MMI for 18 months. Within one year after discontinuation of MMI, hyperthyroidism recurred in 104 patients. They were randomized into 2 groups for continuous antithyroid and radioiodine treatment. Numbers of occurrences of thyroid dysfunction and total costs of management were assessed during 10 years of follow-up. At the end of the study, 26 patients were still on continu- ous MMI (group 1), and of 41 radioiodine-treated patients (group 2), 16 were euthyroid and 25 became hypothyroid. Serum thyroid and lipid profiles, bone mineral density, and echocardiography data were obtained. Results: There was no significant difference in age, sex, duration of symptoms and thyroid function between the two groups. No serious complications occurred in any of the patients. The cost of treat- ment was lower in group 1 than in group 2. At the end of 10 years, goiter rate was greater and antithyroperoxidase antibody concentration was higher in group 1 than in group 2. Serum cholesterol and low density lipoprotein-cholesterol concentrations were increased in group 2 as compared with group 1; relative risks were 1.8 (1.12–2.95, P,0.02) and 1.6 (1.09–2.34, P , 0.02) respectively. Bone mineral density and echocardiographic measurements were not different between the two groups. Conclusion: Long-term continuous treatment of hyperthyroidism with MMI is safe. The complications and the expense of the treatment do not exceed those of radioactive iodine therapy.


Download File (PDF)

Azizi, F. (2005). Effect of long-term continuous methimazole treatment of hyperthyroidism: comparison with radioiodine European Journal of Endocrinology, 152 (5), 695-701 DOI: 10.1530/eje.1.01904

This entry was posted in Anti-thyroid drugs, Radioactive iodine. Bookmark the permalink.

137 Responses to Taking methimazole for 10+ years

  1. janet casebier says:

    This is exactly what I was wanting to find out. I have been on MMI treatment for 6 months and my doctor is talking RAI or surgery. I just don’t know what to do. There is alot of talk about treatment, but not about how it affects people’s lives after treatment. Any info would be great.

    • gravity says:

      Janet,
      Have you checked out the forums on Daily Strength? It’s an active group of really nice people who can help (the link is under “Resources”). Sorry I don’t have any definitive answers for you. If you aren’t having problems with the MMI, then you do have the time to research the various options and make the best decision for yourself. All three treatment options have their pluses and minuses so it’s a tough one, I agree! Hopefully some of the papers I’ve posted here will be helpful to you as well.

    • Barb says:

      Check out the National Graves’ Disease and Thyroid Foundation. They have a good website and lots of patients use the website. There are people who actively monitor the website and can answer questions for you.

      • Debbie Turner says:

        My daughter will turn 18 in may, she was diagnosed with graves 2 years ago. Her dr. Is really pusing ria but I really dont want to make such a permanent decision at her age. I would like to get a second opinion. Thanks for sharing your thoughts, the meds to control the symptons dont seem so bad after all. Hers seem to be keeping things under control.

        • Dawn says:

          I found out I have Grave’s in Feb 12. The first Endo I went to told me RAI was the only option. I just felt like there had to be another option. After a lot of research I found a doc in Houston that will treat with Methizmaole and believed I could go into remission.

          He started me on a very high dose and now I take 12mg / week and he believes I will get off of the medication.

          Additionally, I recently found out, a friend of my daughter’s was diagnosed with Grave’s as a preteen and was treated with Methizmaole. She has been in remission and without medication for almost 10 years.

          I found my doc by searching for someone that would prescribe Armour thyroid medication. Since this is a more ‘natural’ treatment, I thought they might be open to something other then RAI. I would post the actual doc’s name, but I am not sure if that is allowed. If you want to know, write back and I can send it to you. He has patients all over the country.

          Good luck to you and your daughter.

          • gravity says:

            Dawn,

            I believe about 40% of folks go into remission, although many relapse.

            This is a private (1 person – me!) site, so there are no rules (other than that I moderate the comments for spam). You are welcome and encouraged to post information of use to others in the comments. Probably it will get seen more if you post it on one of the larger doctor review sites, though.

            I’m glad you found a physician you are comfortable with. I too was getting railroaded into RAI, but thankfully my doctor was willing to try other options. RAI is great for some folks who have found great relief through it, but it is not the best for everyone in every situation.

            Cheers,
            Gravity

          • Holly says:

            Hi. Could u email the doctors name to holly77 AT me DOT com

            Thanks so much!

          • cristina calabria says:

            Can you please email me doctors name please,roycalabria1969@comcast.net. THANK-YOU!, Cristina.

          • candy says:

            Hi Dawn, Thank you for posting. Yes, please let me know the dr’s name. That would be very helpful.

            Candy

          • Denise says:

            I would love to know the doctors name Dawn that you went to, so I could see him also !!! I live in California and would travel anywhere for a good Dr. for Graves Disease Thank you

          • William Alexander says:

            Hello Dawn

            Could you email me that Dr’s name. Ive been looking for a more natural treatment.

            Will

          • TRP says:

            Hi!! I am new to this!! I have been doing alot of reading lately as I have recently been diagnosed with Graves Disease. I have some concerns that have really been weighing on my mind!! My endocrinologist has recently given me a couple of options for treatment such as RAI or Methimazole. My predicament is that my husband and I had hopes of more children. With that being said the endo suggested nipping it with RAI and being done with it. I’m not a big fan of radiation and have 3 children at home already that I don’t want to expose. Has anyone kept up with the Methimazole and had children? Really important decisions need to be made and I’m just really uncertain what the best thing to do is.

          • TRP says:

            Dawn, I would really appreciate that Dr. Info!! I need to see a great specialist, and my husband and I are thinking of a second opinion!

          • lisa says:

            Hello
            I have graves and have had it for 2 and a half years now.Can you please email me the Dr Name that you wrote about.hope your doing well.
            Thank you
            Lisa

          • Judy says:

            I read your comments on the methimazole treatment. I am currently dealing with Graves disease and would appreciate the doctors name in Houston that was willing to keep you on this. I am on this but my doctor is pushing for the radioactive treatment to kill the thyroid. My hyperthyroidism responded in just a couple of weeks to the Methimazole

          • maria rodelie po says:

            Hi dawn I am very interested to know regarding taking methemazole on treating grave disease with its effectiveness. Please lend me some fact information especially that Doctor you are telling everyone. Thanks much. . Eagerly waiting for ur kind response.

          • im on tapozale 2 a day but I wont to get off it I don’t like the side effects thank you

          • Holly says:

            Hi. My daughter was diagnosed with Graves. Would you please send the email address of the doctor to Holly77@me.com. I’d like your doctors name bc I’m interested in the natural meds you mention. Thanks so much!

        • William Alexander says:

          Dawn

          Can you email me that Dr’s information at Markaas@hotmail.com

          Will

        • jill says:

          My daughter, age 15, has had Graves disease since she was 10. She took methimazole for 4 years which controlled the symptoms. She went in to remission for a year and now the disease is back and she is taking the methimazole again. Putting off RAI treatment for as long as possible. My question is: Do most people with graves and taking meds still have issues with memory, retention, and organization? I am really stressed out about this as I don’t know if it is just my kid or the disease. I ask my daughter to do something. She says ok and then forgets to do it? She studies for exams, knows the info, an then does poorly on the tests. She still is constantly moving around and cant sit completely still even on the meds. (her blood levels are “normal” according to the doc) but her brain is not!!! Do anyone else have these issues? help!!!!

          • Toni says:

            Jill, My daughter was dx’d with hyperthyroid at age 5, and now her antibodies are high enough that she is experiencing eye involvement. We haven’t started meds yet. But I wanted to let you know, that yes, the forgetfulness and scattered-ness is the thyroid. My daughter was placed on propranolol, and it has helped.

    • Ms. D says:

      I have been on methimazole for 14 years now…..I notice my graves kicks in more when I am under stress and during the winter months here in the South. When I am outside walking a lot and in the garden and swimming my levels seem to normalize and meds cut back in the Spring and Summer months. During menopause however it was a double whammy as symptoms are similar and hard to tell where they were coming from. However, I agree that I have rarely read a story about RAI treatment that ended well and more often folks rue that decision. I had a pain in the butt relative that talked me out of destroying my thyroid. I have gone from only averaging 2.5 up to 15 every other day and it was 10 twice a day when I first discovered it after the birth of my only kid. I think the gestational diabetes may have triggered it and also I took diet aids, thermochrome, in order to drop baby weight and it came off rapidly and I think perhaps this too brought about the graves disease. Anyway, there are worse things to live with and for me personally every time I take my meds in the morning I am reminded of the miracle of medicine and the Grace of God :)

      • JUDI ALLEN says:

        INTERESTING LETTER ,I AM 77 ON METHIMAZOLE 2 years now, some eye problems my ENDO Doc is overly concerned about OSTEO with me … but I cannot take those expensive drugs .. I take vitimin D a day. I FEEL GREAT , ONLYONE EXCEPTION, I CANNOT FIND AN ANSWER ; if someone has answer for me… for two months now i cannot have any type of ALCOHOL, never been a heavy drinker, glass of wine a day, .it gives me an odd sensation in both arms like a heaviness, lasts only a few minutes, but, odd enough to cause me to stop drinking any alcohol. In all i’ve read about Graves …have read nothing about interaction between alcohol and MEMTHIZOLE AND ALCOHOL … THANKS FOR HAVING THIS SITE..

        • Jo says:

          Judi, I was searching online to see if I could find any info about a connection between Graves/Graves medication and alcohol-induced pain, when I found your post. I don’t take methimazole, as that gave me severe itching, but I have been on PTU now for about 3 months.

          I’ve never been a big drinker…maybe one glass of wine 3-4 nights a week, which has never given me any troubles. All of a sudden, a few weeks ago, I had a glass of wine and I almost instantly had a horrible reaction. Pain in the right side of my stomach, which radiated out to my right shoulder and arm. My entire body felt achy, almost how you feel when you have the flu, and my skin got really clammy and I was sweating. This lasted maybe 20 min until I had a bottle of water, and then it went away, almost as suddenly as it began.

          I didn’t realize it was the alcohol at this point, so a couple days later, I had another glass of wine, and the same exact thing happened. This time, I realized it was the alcohol and haven’t had another glass since for fear of it happening again.

          I’ve read a lot of info today about PTU having the risk of liver damage, and since our liver processes alcohol, I’m very worried that something like this may be going on with me. But you say you take Methimazole, so now I’m wondering if maybe it’s not the PTU, but the Graves.

          Have you checked with you doctor about it? I plan to at my next visit (next month). Have you had any more of these episodes or are you avoiding alcohol completely now like me?

          Jo

    • Kris Dahlin says:

      Yes Janet my doctor is talking the same, but I have been on methimazole for 4 years now, but she is the first to even talk about other treatments and the possible problems from taking methimazole for a long period of time. I was just put on it and the other doctor never said anything about possible problems. So at least now we can keep doing blood work to be sure we are staying in normal range and be sure to have the liver enzymes tested as well. Seems the MMI is the best way unless you have a problem. Happy to have seen this.

  2. Shelley says:

    I have just started on 10mg of methamazole for my hyperthyroid and am responding well so am happy to know it will be an acceptable treatment instead of RAI or surgery.

    • gravity says:

      That’s wonderful that you are responding well. I also had a quick return to normal levels after starting on MMT. After 3 years of 10 mg/day, I’ve been slowly reducing my dose lower and lower, down to 1/2 a pill a day (2.5 mg) and finally just stopped altogether a week or so ago. Of course, I’ll have to monitor things, but so far, it looks like I am in “remission”!

      I’m very glad I never had the more permanent thyroid removal with surgery or radioiodine. I know they’ve helped a lot of people, and I’m not against them in principle, but I think taking your meds regularly works for some of us at least and is definitely worth a shot. If I’d had the more drastic treatment right up front (as my doctors strongly encouraged me to do), I would never have been “normal” again.

      Cheers,
      Gravity

      Best wishes,
      Gravity

    • sharon says:

      Iv had hyperthyroid / graves desease for 15y it took one good Dr. to tell me what was wrong .I reaaly thought it was some kind of allergy I devloped, back than. I was sent to many specialist, most of them wanted me to have surgery, biop or cocktail to disssolve the thyroid(radioine) I chose not to follow there advise. I just wanted to take the pill form. So I found a Dr. that would monitor me. I bet I went to 10-12 Dr. I was determined not to have any thing to do with the above choices. I am very happy with my choice. havr been on this mmi for 12y. In the first years Iwas on the tapazole. I would say go with your belief. Ido not mind taking the pill every day. A lot of side effects the other way more than taking the mmi.

    • Lynn says:

      I too was diagnosed with Graves about six months ago. I started on methimazole and now I am beginning to taper. So far…..so good.

  3. Susan says:

    I have been on MMI for about 10 years. I have had two remissions but, I have relapsed. I have managed to stay on a very low dose. I’ve not really had any real problems with it.

  4. Dianne says:

    This is a very encouraging study for grave’s patients who rejected RAI as a first line of defense against their hyperthyroid! I was diagnosed in Feb. 2011 and MMI started working for me within days, lowering my heartrate and blood pressure, which were the scariest symptoms for me. The hand and leg tremors were gone within a month. After 3 months I went completely hypo, my TSH reading was 54.22! But my doctor and I have adjusted my meds and I am currently on a maintenance dose of 7.5 mg/day and instead of being tested every 3 months, I insisted on being tested every month so that I don’t go hypo again….in all honesty, being hypo was way worse than being hypo, and if you chose RAI, you will have a 100% chance of going hypo! I’ve been stressing over my long-term prognosis and treatment, but will rest easier knowing that long-term ATD (methimazole) is a safer alternative to RAI!

    • Honesty says:

      I have successfully had RAI and I am NOT hypo. Mainly because I take my medication everyday. I have energy, work-out, can keep a full time job and do not have to constantly worry about liver failure or bone marrow suppression from being on Methimazole. Yes it can be managed with methimazole but if it has shown to have failed why not treat it appropriately after 3 years. It is not like your endo just woke up one day and said “hey I think I will do this” and then started handing out advice to people. They went through 15 years of education and then years of patient practice to get where they are. They know what they are doing.

  5. Sharon says:

    I have been on methamazole for 5 years. I found that splitting my does into morning and bedtime made a huge difference in terms of how much I was able reduce my dose and have very slowly reduced my dose to 5 mg per day. I also went to an chinese acupuncturist for the first year or so who supported my choice not to take RAI. I am essentially in remission according to my doc as I have been on 5mg for 18 mons plus. Next step is to try 2.5 in the AM.

    • Dot says:

      Hello Sharon! I’ve been on Methimazole now since 2007 – down to 5 mg/day. and I’m just wondering if you were able to wean off of it using the Chinese medicine or another healing modality. I’ve become vegan which has helped my health a lot, and ready to give another round of trying to wean off the meds. I have found in the past that when I did, my stomach went crazy one me! Not sure how they’re connected. Would love to hear how you’re doing.

  6. sarah says:

    I was diagnosed with hyerthyroidism about a month ago and then with Graves Disease at the begining of the week, methimazole and RAI were my options, my thyroid level was so high that I didnt have a choice but to be put on mehimazole first (which is fine because RAI wasn’t an option for me.) I was just wondering if any of the side effects were bad for anyone? my white blood cell count is already pretty low and I know that these can lower even more as a side effect. I have also been put on 40mg once a day which seems a little higher of a dose

    • gravity says:

      Personally, I’ve never had any side effects from MMI, but they exist and some people have them. The lowered white blood cell count side effect is very rare, and it is very acute (i.e., a crash, not a monitorable gradual thing). See the warning signs mentioned here and in the info your doctor and pharmacist gave you. It is normal to start with a high dose and then decrease it as your levels get down to normal. The chances of side effects are highest when the dose is highest, but the risk of NOT treating your hyperthyroidism is higher still. Take your meds and feel better. Chances are good that nothing will happen. If you do get signs of WBC loss (sore throat), stop taking the MMI and get to a doctor ASAP! Good luck!

    • Laura says:

      I am in a similar situation to yours except for I have a goiter and have been on methimazole for about 4 months. I have gained about a pound a week since being on the medicine, which is a good thing for me because I was very underweight. I didn’t have hardly any side affects at all . When I didn’t take it at exactly the same time every day I ould be extremely hungry and tired, but I started getting more consistent and now if I take it at a different time than usual, I just feel drowsy until the next dose. I’m not sure if my white blood cell count went down, because I have a very strong immune system. Strange because I do have an autoimmmune disease too. Hope this helps.

    • sharon says:

      I was on 40mg twice a day for at least 6m maybe longer , now 5mg once a day. Feel got most of the time

  7. Nancy lindsay says:

    Help I have been diagnosed with Graves disease and have been put on Methiazole. I have gained 7lbs in 6 weeks, I excerise a lot and eat very healthy I have even decreases my caloric intake. I need suggestions.

    • gravity says:

      That is not a side effect of the drug I have ever heard of. On the other hand, it is common to gain weight after your thyroid levels come down to normal because your brain got “used to” eating large portions when you were hyper and it takes a lot of mental work and re-training to switch to the smaller portion sizes and fewer snacks when you get back to normal.

      I had the opposite problem – I was so hungry all the time when I was hyper that I gained weight while I was hyper, and then I lost weight once I became normal! But, most people seem to go the other way – they lose weight when hyper and gain weight as they get back to normal.

      If you are concerned about your weight gain, you should definitely speak to your doctor about this. Are you having regular blood checks? There’s a possibility you might have even gone hypO and this does lead to weight gain. Good luck!

      • Laura says:

        The same thing is happening for me ! My doctor seems pleased that I have gotten to a healthy weight, which i have hooray !! :) I am hoping I dod not turn Hypo though and I am seeing a specialist within the next couple of weeks.

      • Ellie says:

        I had the same problem. I gain weight whenever I go back into hyper mode.I exercise daily, and eat low calory and healthy, but can’t keep the weight off when my thyroid is hyper. Weird!! I am on 5mg daily of Methimazole. I had been on 2.5 maintenance for almost a year and then “relapsed” into hyper thyroidism again. My Dr is suggesting RAI but I am resisting. I think from what I am reading that if I stay on 5mg for a year or more, and then slowly reduce to 2.5 for longer, and then off, I might just make it into remission. I believe I was taken off too soon.

        It seems like all of the endochrinologists are stating 2 years max for safe use of methimazole, but all of the written research says 10 yrs to life is ok on low doses. Interesting!

    • sharon says:

      maybe mmi its to high , I tend to go up and down with my weight

    • Kathy says:

      I have had Graves for about 10 years and have been off and on Tapazole as I have taken myself off the meds to see if I can manage without and currently am off for the last few months. so far so good, however my issue is this: I used to be a thin woman. 5’8″ and around 117 to 130 pounds for many years. Since I have been on Tapazole I now weigh 160 pounds, feel and look awful and eat less then before but cannot lose a pound. I even went up from 150 to 160 this year after juice fasts, etc. I just cannot lose weight and because I have Graves cannot take diet supplements as may tigger the Graves/my metabolism. I am very depressed about this weight gain, not looking good anymore and have been tired and weary for the last 10 years since I got this. I am at a loss for ways to lose weight through the right foods. Can someone help mr with suggestions, especially if you gained weight due to tapazole and how you stay thin? I would be grateful for your suggestions?

      • Ali says:

        Kathy,
        Try lymph drainage…it will help remove metabolic waste build up. Your weight gain may be excess fluid accumulation from all thats going on with the graves disease.

  8. Rosa says:

    HI, I’ve been hyperthyroid for over 22 years. I have taken 5 mg of Tapazole (Methamazole) at night for about 22 years. At first my symptoms were being extremely cold all the time, sleeping 14-18 hours a day, weight gain, fast pulse and frequent bowel movements. I also developed Osteoporosis at the same time, I have had my blood checked for T3 and T4 every 3 months. And recently the doctor says it’s “Normal” whatever that means. Present doctor says to go for testing every 6 months. One doctor suggested splitting the pills or taking one 5 mg for 6 days and then skipping one day. Present doctor says just take one pill a day. No one has ever suggested the possibility of a remission, or cutting back on the pills or stopping. After about 20 years, one doctor suggested the RAI but I couldn’t see any advantage since I seem to be doing ok, except that my pulse is still fast and I still have ostorporosis. I have been diagnosed as “Celiac” by taking a blood test, although my only symptom is having hyperthyroidism. Also 10% of patients test as “False positive” I heard. This summer I was working outdoors a lot, spending 2-3 times the energy I usually do, doing lots of walking, and cutting back nearly half on my calories. Then after 2 months, I was able to lose, (Tah-dah!) One whole pound. I was keeping a food diary too. I’ve already regained my one lost pound. If anyone has any insights into my case, I would appreciate it. I am reading up on “Natural Remedies” on the internet, in case it gives me any insight.

    • Ellie says:

      I also gain weight easily on MMI and when I am hyper. I have not been diagnosed as Celiac, but i did go 95% gluten free, and when I am eating gluten free and avoiding any alcohol ( wine or beer with dinner or even 1 cocktail) I do feel significantly better.

    • Dot says:

      Try avoiding meat and dairy. It’s helped me alot. You will have more energy and feel better.

  9. gravity says:

    Rosa – I’m not a doctor.

    Your symptoms sound very much unlike the symptoms I’ve heard of for hyperthyroidism (except the racing pulse). Most folks are hot all the time, can’t sleep, lose weight (although personally I did gain weight because I was hungry all the time, but that’s rare). Are you sure you weren’t hypOthyroid (too low thyroid)? The symptoms you list match that pretty well. Of course, if you had been, they wouldn’t have put you on MMI…

    If your thyroid levels are normal, congrats, you are probably in remission. You can read around this site for more info, but studies have found that ~10-50% of folks go into remission for at least a while after being on drugs for a while. If you haven’t, you might be in that other 50% that doesn’t. Sorry :(

    You can read around on this blog about the effects of changing the timing of your dose. Basically, for MMI/Tapezole, it doesn’t make any difference if you take it once or more than once a day because it stays in your body for more than 24 hours. However, some folks swear they feel better taking it in smaller, more frequent doses. Who knows! It won’t hurt anything to give it a shot to see if that does anything for you.

    One other thing is to check which hormones your doctor is measuring. “Old school” doctors check TSH, which is not the current recommendation. Nowadays, folks check T3 and T4 as well as Free T3 and Free T4. You might consider seeing an endocrinologist if you want to talk to someone more familiar with the thyroid gland and what might be going on with yours. Your general doctor may not have that much experience with Graves.

    Celiac disease has nothing to do with the thyroid (although Graves and celiac are both auto-immune disorders, and folks who have one are more likely to have another..joy…joy). Osteoporosis is not related either, but is common as people, especially women, especially white women, age.

    Trouble losing weight is associated with being hypothyroid as well as living in the US (sad, but true) with our diet and lifestyles. Personally, my attitude towards weight control is that you can be active and healthy at any weight. It sounds like you are on your way to being active and healthy. Take pride in that!

    Good luck!

  10. laurie says:

    i have some questions tooo…….. i have been taking methimazole for 6 weeks. twice a day. i went for my bloodwork and my liver enzymes are elevated. my husband just wants me to do the RAI and get it over with. has anyone else had their liver enzymes high?? and i have headaches, heartburn, and a cough that seems to come from my throat :(

    • gravity says:

      Laurie,

      I’m just one person and not a doctor. I don’t know if there is enough of a discussion going on this site yet to answer your question about liver enzymes from experience. I have never had liver issues. You might try asking over on the Daily Strength (http://www.dailystrength.org/c/Graves-Disease/forum) forums for other folks’ experiences. I don’t know that your symptoms match up with any that I’ve heard as side effects of methimazole or of hyper- or hypo- thyroidism. Perhaps there is another problem going on. Does your doctor think that the liver enzymes are methimazole- or graves-related? RAI is permanent. It can be very helpful, but my personal inclination is to go other routes first if possible and only use such drastic, irreversible measures if the other options (drugs) don’t work. You might also seek a second opinion from another doctor. Good luck!

      • laurie says:

        well, she said if the next bloodwork shows they are increasing then i have to stop the meds. i read online that headache, heartburn, and cough are side effects of the methimazole. other thatn those issues i dont have any problems with it. i just worry about my liver. it says the meds can cause liver damage in some pt’s. maybe i am the rare few :( my ast in nov was 18 and now it is 45 my alt was 12 now it is 65…..

  11. Kristin says:

    Ive had a hyperthyroid for over 2 years now and take .5 of my methimazole. Starting in July I started having trouble sleeping and starting last week I just can’t fall asleep at all. I spoke to my endocrinologist who told me its unrelated to my being hyper but after searching the web at all hours of the night it seems that it could indeed be related. Any comments or advice for this? She prescribed Ativan which worked for a little while but doesn’t work anymore. Then, last night she prescribed generic ambien which also didn’t work (not to mention the side effects are scary). I’ve read about melatonin and was considering taking that although I see it’s not a quick fix.

    • gravity says:

      Kristin,

      The best way to know if you are hyperthyroid is to have your levels checked by your doctor. Many things can cause insomnia, not only hyperthyroidism. Just a few weeks ago I got a new job, was moving, etc. I didn’t think I was that stressed out about it all, but I was having a lot of trouble sleeping, and it felt just like when I was hyperthyroid. I told my doctor, and she checked my bloodwork. My levels were normal so she suggested that perhaps I was underestimating the amount of stress everything was having on me. I think she was right. Now that I’m more settled in, I’m sleeping much better. Insomnia can also feed on itself. If you are anxious about being able to fall asleep, it can prevent you from falling asleep (oh, the irony).

      It doesn’t matter what time of day you take your methimazole, but do try taking it regularly at a different time for a while and see if that has any effect.

      Good luck!

      • barb says:

        I too noticed the sleeping thing was not good – I was diagnosed 4 months ago. The month that I was 5 years free of a horrible disease called Cushings. For some reason I dug out a hair analysis I had done. It measures minerals in the body. I had very low Magnesium. I started taking it twice a day..a liquid form with calcium & Vit D..OMG..sleeping is fantastic. I am looking more into “WHY”..why did I get the disease..lacking vitamins?, minerals.
        I will glady take the pills & work on the little things that might make a difference..If the pills work..why not. This mind set may change…but to go through surgery or the RAI..scares the hell out of me.

    • Liz says:

      I had the same symptoms as soon as I started Methimazole, I couldn’t fall asleep. I’ve had Graves for two years now, went off medications 4 months ago and have as yet just slightly relapsed. Doc told me to do rai, ignoring that and just getting back on 2.5 mg a day and seeing if I can perhaps dose down to 2.5mg every other day. Anyway to cut a long story short two years ago I had very high FT3 and Ft4, I was hospitalized because wasn’t eating wasn’t sleeping etc etc I was completely losing my mind because I wasn’t sleeping, they got me to see a neurologist in hospital and she prescribed one tablet of zoloft a day. Previously i had been taking the dangerous benzodiazepines that only made things worse. PS I HATE medications. Initially I refused Zoloft adamantly, I fought with the neurologist because I didn’t want to go on anti-depressants. Eventually, however I had to succome (I was also having panick attacks at the time and crying continuosly even though I did not feel sad), anyway within two weeks it did the job, started sleeping again, appetite came back etc etc. I stayed on the medication for 1 year. Now I am off it and feeling normal.

  12. Kristin says:

    Sorry – correction I take half of a 5mg tablet so 2.5mg once at night every night. Does it matter what time of day you take the methimazole?

  13. Amber says:

    I am soo glad I found this site. I REALLY NEED SOME HELP!

    I am 28, and my thyroid has been over-active for a little over a year (for sure, suspected to be over since about 19), but anyhow, this is my first time having insurance to really get care…but now, I’m lost and confused.

    so- Last year I had all the tests done, to try and track down this ongoing thing that’s been bothering me for years. I thought I had Lupus my body felt so bad-
    Last year I went to a PCP (first time in 15 years) gave her a layout of my problems, and then was referred to a Rheumatologist, for an elevated rheumatiod factor, and an endocrinologist for my TSH level. But- they were ALL in the same building… easy communication for them, but my thyroid doc is “reproductive endocrinologist” Is this bad for a simple thyroid?

    Now- The REALLY TRICKY PART!! I have been told I have an over active thyroid, (after blood, uptake, and ultrasound—) a hot nodule, a goiter.. and 3 cysts. sorry ya’ll- didn’t mean to be gross, but that’s the facts…So, then I had a biopsy (last year) no cancer- And my Rheumatiod doc, says, “oh, you’ve just got Fibromyalgia” Then I let the Rheumatiod stuff rest…..

    So for the past 13 months, I have been on methimazole I’m at 5mg now, and was15mg for the first few months, and some IBS meds, and Cymbalta 60mg (for fibro). Oh- I also have 20mg “as needed” propranolol.

    So- I was never told if I had maybe Graves diseasae, or anything about my high rheumatiod thing… my Thyroid doc and I have reached the magic one year mark, and he wants me to consider other options… he gave me 2 more months on my prescriptions, and he wants me to come back med free in 3 months…. to see what happens med free.

    I went in this month,on my meds, and My TSH was only at .8 (that’s point eight) sooo- doesn’t sound bad, but doc says, we need to remove/kill it… why? I also had another ultra sound, and the lumps and gunk is still in there- but no biopsy this time… even though my paper I took back to my doc said I should- is this why he wants to kill it off? He think there’s cancer? My doc didn’t really tel me anything at this one year mark..

    I don’t feel awful, but I don’t think they got it right, or maybe I am worried. I am gaining weight too! I have always gone up and down, by a LOT. I go from 135-165 all through the year, why is that? No diet, no over eating (I don’t think)…

    I don’t know, anything will help. I just want to know my options, and if there’s anyway someone got it wrong, or if I can just stay on the Methimazole since I’d be on some meds anyway right?

    Sorry so long all, I am just frightened, and worried, and clueless.

    • gravity says:

      Amber,
      I’m not a doctor, and it sounds like you have a fairly complicated set of symptoms and issues. It sounds as though you need to sit down with your doctor(s) and have them give you a clear description of what they feel is going on. A repro doctor may not be the best choice, but you can ask them about their experience and training with Graves. My doctor sees 95% diabetes patients, but has been great with my Graves, so being in the “wrong specialty” is not necessarily a problem. Ask your doctor how often they see Graves patients or how much experience they’ve had with thyroid issues. If the answer makes you unhappy, ask if they can refer you to a thyroid specialist. A good doctor should understand that you need specialized care, especially for a complex case like yours.

      As for your question about whether you have Graves or not, there are many causes of hyperthyroidism, but Graves is by far the most common. There is an antibody test for Graves, but the treatment is the same no matter what, so it doesn’t really help anything to get the test. Actually, they tested me and never found any antibodies, but they called it Graves just the same. Clearly the test isn’t everything. Ask your doctor.

      Your options, as far as the Graves are concerned (I have no idea about the other issues such as fibro, etc.) are (a) drugs (b) surgery (c) RAI. Options B and C are permanent and will leave you forever with a weakened or nonexistent thyroid. This may be a good thing if you’ve been suffering from excessive thyroid. On the other hand, this means you’ll have to take drugs the rest of your life. If you go through a “no insurance” patch again, you could run into some serious trouble if you can’t get drugs (on the bright side, they are fairly inexpensive).

      Option A is not typically recommended in the USA, but if you read around on this site, you’ll see that it is often used in other places, and is a fairly safe option, particularly for low doses. It has been the option I chose, and barring any other complications, I will continue to do so for my uncomplicated Graves disease. Ask your doctor about staying on drugs. Mine initially didn’t want me to stay on drugs because they thought patients wouldn’t take it consistently, it wasn’t “permanent”, there were side effects, etc. After showing them that I took it every day, and working to get on the lowest dose possible, they agreed with me that I had made the right choice.

      Your next step should be to gather more information about YOUR condition from your doctor. You have other issues that complicate things – cysts, fibro, etc. I don’t know how those affect Graves. If you JUST had Graves and the drugs were working for you, I might think you could talk to your doctor about staying on the drugs. But the cysts may (or may not – I have no idea) be a problem, and I don’t know how Graves affects fibromyalgia or vice versa. I do know that people with one autoimmune disorder often have others. Both GD and Fibro (and most rheumetological problems) are autoimmune disorders where your body bizarrely attacks itself.

      It sounds as though you haven’t gotten all the information about Graves disease in general, or about YOUR issues in particular, from your doctors. I’ve found it very helpful to take a friend along to doctors appointments to make sure all the right questions get asked and to have two people to remember what the doctor said. Make a list of questions, write down the answers. Ask the doctor what they would recommend if their daughter had the same issues. Don’t let them railroad you into making a permanent choice for no reason, but do heed their advice if they have good reasons for their suggestions.

      Good luck. Let us know how it goes!

      • Amber says:

        Thank you, I guess all I really wanted was some peace of mind. I have been looking for answers, and frightful of the doctors recommendations.

        • Liz says:

          Amber I’d seek a second opinion. You need a doctor who talks to you and has the courtesy to explain things to you in a simple form, some one who gives you the time of day and doesn’t rush you through an appointment. Don’t be intimidated by them, remember you are paying them.

    • candi says:

      Hi, Its a shame to hear of yet another dr forcing a patient to hurry up and make up their mind. It is your body. I have had graves since I was 19 and am now 30. I take methimazole every day. Have gone from 40 down to 2.5. You can slowly go into remission at any time….. they just use statistics and rush patients…IMO. please think about this more.

  14. Debbie says:

    I win! I have been on varying doses of methimazole since 1999 for Graves. I was also diagnosed with Hashimoto’s which is the autoimmune HYPOthyroid. UCSF’s head Endo is from England and he says he has seen nurses, etc on methimazole for 20+ years…. The study you included from 2005 is ALOT less ominous than if you do research on ablation via radioactive iodine…we could not be around people, especially children for several days! All the while they are saying it is only hurting this one little gland because the iodine is pulling the radioactive material into our thyroids….we are excreting the rest via bladder/bowel/skin, correct? As a 10 year breast cancer survivor/thriver, I choose to minimize my exposure to toxic radiation as much as possible…eventually Graves causes the thyroid to burn out as I understand, IF we don’t go into and stay in remission. We will end up on thyroid med anyway….and really, in the big picture of health challenges, this is manageable, rarely life threatening, and doable from a patient perspective. Good luck to all…good choices…stay informed.

    • Fae says:

      I have had hyperthyroidism since 1999, also. Most of these years I have been on methimazole. I have had no problems with it. Seemed like Tapazole was a little better, but my insurance won’t let me do that. I find that the expiration date of the meds are important as the older it is, the less effective it is for me. About 6 months ago I began to have hypothyroid symptoms (cold, sleepy, etc.) and was in a new location so didn’t have a doctor to check my blood levels. I decreased my dose from 5 mg to 2.5 daily about 3 months ago. I am not as cold at night now but am beginning to have sleep problems again. So far my heart is not having irregular heartbeats though. I am slowly gaining weight (not good!) . Does anyone know of a good doctor in Lubbock, Texas?

  15. Karina says:

    I’m 28 going on 29 and I’ve had Graves disease since I was 15. I’ve also been taking Tapazole since then! I’ve gone into remission 3 times and experienced Thyroid Storm once! My life is so depressing at times because of this disease! I’ve been trying to get pregnant for quite some time off and on to only find out bad news either I wasn’t successful or had miscarriages. Of course I was given the option of either surgery or Radioactive iodine but who wants to walk around everyday with a cut on your throat or having to take pills the rest of your life! Even though i might have to take tapazole for the rest of my life at least I can go into remission or hopefully a cure will be discovered *fingers crossed* I’m just really sick and tired of being sick and tired! My life right now consists of taking many meds a day and always seeing the doctor! Sad considering I’ve been like this since the age of 15.

    • gravity says:

      Sorry Karina, that I am just now getting back to you – I didn’t see your post until just now. I’m sorry you are struggling so much with Graves. I hear you about being sick and tired of being sick and tired! I had about 10 different mis-diagnoses before they finally figured out I had Graves, and I feel I just lost about 5 years of my life before that because I felt so awful all the time. Fortunately, treatment for me really made me feel much better. I wonder if you perhaps are on the wrong dose or are having other non-Graves-related problems. It seems strange that your Graves would be causing you so many problems if you are receiving treatment. You say you are taking many meds a day, so I assume you have several issues going on at once. That sounds rough. You might work with your doctor(s) to look over the complete set of drugs and determine whether they are all necessary or whether there might be interactions that could cause problems.

      Don’t be afraid of getting a 2nd opinion. Sometimes another perspective can be very helpful and enlightening. Good luck!

      • Karina says:

        Thank you for replying it means a lot…. I’m on Tapozole 3 times a day and Atenolol twice a day and Clarinex once a day! It seems when my doctor takes me off Tapazole I have these terrible allergic reactions and break out with hives so the clarinex helps! I have irregular heart beats so atenolol helps with that. I also have irregular periods to which I’ve been prescribed with provera….. Because graves disease runs strongly in my family I believe the fact of the matter is this is what I have and everything else that’s occurs is from an effect of the graves disease. Also because I’m always having so many problems I have to visit my doctor and do blood work every 1-3 months! I’ve been to the ER 3 times this year :( I recently resigned from my job because I was so depressed and of course to keep from my graves disease from getting worse it’s highly recommended from my doctor ‘not to get stressed because it can worsen my disease’ BTW I have gotten 5 different doctors opinions and all blood work comes back stating I’m hyperthyroid!

        • Delsen says:

          Dear karina,

          I understand how frustrated and angry you feel. I’ve been sick for a year so maybe I do not have experience, but I can’t tell you that want thing that can help me is going in a vegan diet and not salt ,a lot of water and drink radish juice specially at night with carrots and avoid all process food as much as you can. Take your medicine and relax and sleep a lot . Tried to find a good doctor . Today I am go with an internist, better than endo because if I have other issues it care a little more and tried to help me. Best of luck and praid if you believe in something or not. Be happy and laugh that helps.

  16. Mary says:

    In June of 2011 my 88 years old mother, who was 87 at the time was diagnosed with Dementia. They eventually put my mother on the Exlon Patch. Later, my mom ended up in the hospital because of a fall. While in the hospital,a Doctor whom she had never seen before, came in and ask us some questions. He said he thought her problem was her thyroid, and said he wanted to check her for Graves Disease, because of the bulging eyes, and the symptoms he observed. He said the thyroid could cause the same symptoms of memory loss and confusion. The test came back and she definitely had Graves. The doctor at the hospital started her on methimazole, 15mg 3x day. Over a period of weeks she got better, did a 180 degree turn around. She got where she was remembering EVERYTHING… Recalling names of all those she once could not remember before, etc. Even laughing and more like her ole self. Everyone was just astonished of how wonderful she seemed. It was like she never had any Dementia at all! We got her a new doctor because her family doctor of 3 years never checked to see if she had a thyroid disorder, it took another doctor to find this problem. But he was not strickly a Endocrinologist , but suggested we find one for our mom. We got her a new doctor, who is a endocrynologist. She took my mom off of the methimazole because she was doing to do RAI and needed to have nothing in her system in order to do the treatment.. This doctor waited almost two months before she did the RAI treatment, after taking her off of methimazole. About 4 weeks after the RAI treatment, they finally did some tests to check her blood and see where her levels were at. They said they were fine but never offered to start her on any medication. After another month, and mom still going back to not remembering things, forgetting those who she had earlier remember. We kept calling the doctors office to get some answers, to have the Doctor get her back in and see what was going on. Maybe the test were done wrong. The nurse called and said the doctor said to start her back on the methimazole, 5 mg a day and give it to her at bedtime. They said if they upped her dose it could KILL her…. Is this correct? She seems even more confused now than before.! Remember, she is only taking 5 mg. once a day. We question why she is not starting her on synthroid, Levothyroxine, or Armor. My understanding methimazole is a “pro”-thyroid drug. The doctor even says she may not need to be on any type of medication. Is this correct. We don’t understand and would like some advice on this situation please. Could you please explain? We don’t even have a office appointment until June 20th. Up to now, all the infomation has been given over the phone by her nurse…. Any infomation would be helpful…

    • gravity says:

      Hi Mary,

      I’ve never heard of Graves’ causing dementia. That’s wonderful that she recovered her memory, but I wonder if it was related to the thyroid treatment or just the ups and downs of dementia (which do come and go). At any rate, they are correct to NOT treat her with drugs if her thyroid levels were normal after the RAI. You said they were normal, so it sounds like they are doing the right thing. I am not a doctor and I don’t know all the details of how Methimazole (MMI) works. As with any drug, MMI can have side effects, some potentially very serious. You can see elsewhere on this site the various studies that have been done that indicate how rare these side effets are, especially at low doses (and 5 mg is the lowest dose you can get). I am not a doctor, and I don’t know how age affects your responsiveness to drugs, nor whether your mom is on other drugs or has other conditions that would interact badly with MMI. It seems strange to say that a higher dose WOULD kill her, but perhaps her health indicates that MMI would be more risky for her than for other people.

      After RAI, usually thyroid levels stabilize or decline slowly over time. If you mom has Graves’, it is likely that at some point, she’ll need to take thyroid replacement therapy (synthroid, Levothyroxine, Armor).

      To check her levels, her doctors should be checking TSH (it will be low if she is HYPER (too much)-thyroid, and high if she is HYPO (too little)-thyroid), Free T3 and Free T4 (these will be the opposite – high if she is HYPER, low if she is HYPO). If she is hyper or hypo, it isn’t good, and she should get the appropriate medications.

      If she is HYPERthyroid, they will prescribe MMI (which lowers thyroid hormone – it is an ANTI-thyroid drug).
      If she is HYPOthyroid, they will prescribe thyroid replacement therapy (which raises thyroid hormones).

      Dementia comes and goes, and it may just be a coincidence that she responded when the MMI was started. You might consider a second opinion from another doctor. I’m NOT a doctor – just a fellow Graves patient.

      Best wishes to your mother and to you – dealing with dementia is one of the toughest things a family can go through.

      Gravity

    • Delsen says:

      Go to another doctor an internist, you need copy of all the lab test in order to know where are the levels of her thyroid and look for another opinion ASAP

  17. deb traxinger says:

    My daughter is 18 she was diagnosised with hyperthyroid almost 2 weeks ago. She was put on tapazol 5 mg. Her tsh is .14. She is a soccer player has a scholarship to college. This all started about 2-3 months ago. She felt like her legs where like concrete, exstremely tired, lethargic, very hungry etc. Yesterday was really bad her doctor told her she could work out every other day. She went on a 2mile run timed and she said she could bearly make it. When she got home she was really upset. Then se weighted herself and she is 4 pounds heavier since the tapazole. Not sure what to do? She is more tired and very emotional. We need help

    • gravity says:

      Hi Deb,

      Ugh – I know exactly how your daughter feels. The legs like concrete and the tiredness and huger were all things I had when I was suffering from undiagnosed Graves. I’m so glad she is getting treated now! It will take her a while to feel better. I think it took me 6-8 weeks before I really started feeling like myself again. My doctor gave me Atenolol, a beta-blocker, to help me “feel better” before I actually “got better”. Perhaps you could talk to your doctor about a similar thing for your daughter.

      I wouldn’t worry too much about weight gain at this point. Body weight fluctuates a few pounds every day just from eating/drinking/peeing/pooping. The tiredness and muscle weakness is part of the Graves that will hopefully get better soon. I think it took me 6-8 weeks before I really started feeling normal again.

      You might speak with your doctor to see what sorts of symptoms s/he feels are normal at this point and get a time frame for when they will do new bloodwork and reassess the medication your daughter is on. I think I had a follow up appointment 8 or 12 weeks later to reassess and get on a regular program.

      Good luck!

  18. ammu says:

    was diagnosed with hyper thyroid graves diseases. The endocrinologist prescribed methmiazole. always i m feeling tired n was gaining weight . My hands were shaky n heart was beating crazy. when i take this medication., will this symptoms go away .i m starting this med tommororw.

    • gravity says:

      Hi Maya(?),

      Methimazole is the drug used to treat Graves’ Disease. It reduces the symptoms of Graves’ disease, but it takes a while for it to start working (maybe 4-8 weeks depending on how bad your thyroid is and the dose of methimazole you were prescribed). Often, doctors will prescribe a beta-blocker such as atenolol to make you feel better until the methimazole starts working. You could ask your doctor about this to see if you can speed up the feeling better part. Most people start out at a higher dose of methimazole and work their way down to a lower dose. Your doctor should reevaluate you in a 2-3 months and adjust your dose accordingly.

      Good luck! I hope you will feel better soon!
      Gravity

  19. Jennifer says:

    Hi,
    I have been on Tapazole for 2 months now and one week ago I lost the taste in my mouth. I can’t taste anything! Also my tongue feels funny.
    Will this go away will time?

    • gravity says:

      I’ve never heard of this side effect. This definitely sounds like it warrants a call to your doctor and maybe pharmacist too! Please let us know what you find out and best wishes for a speedy recovery!

  20. Jasmine Fernandez says:

    I first discovered I was hyperthyroid when I was pregnant with my 2nd child. (I went through the Storm which put me in the ER for a week). I have been taking Tapazole for nearly 3 years and my doctor is now considering other options: Surgery or RI. I really want to have more kids and my doctor is telling me that Tapazole will caused deformities and my only option is the RI if I wish to have more kids. Is this true? HELP!

    • gravity says:

      Jasmine,

      What a difficult choice. It is really hard to weigh these risks – the risk of complications from surgery (anesthesia always carries risks), the difficulties of receiving RAI while having a family (you have to isolate yourself for a number of days and you can’t go to a hotel in many states to avoid contaminating the staff), and the very small, but quite scary risks carried by the drugs. You can read a little bit more about evaluating these risks as described by a different paper here on this site. It talks about taking the PTU and MMI drugs during pregnancy. Tapazole and MMI are the same thing. Specifically, it says:

      Considering the intricacies of care and risks involved for a woman with active [Graves' disease] during pregnancy, treatment with radioactive iodine or surgery before pregnancy should be strongly considered for those who desire future pregnancy. Doing so can avoid the dilemma of choosing between a drug associated with a small risk of fetal birth defects [MMI] and another drug associated with a similarly small but finite risk of serious liver injury in the mother [PTU].

      For women who choose not to take the risks of surgery (anesthesia, mistakes) or radioactive iodine (radioactivity, hypothyroidism), the authors’ recommendation is to take:

      • PTU for the first trimester (to prevent birth defects)
      • MMI (if needed) for the second two trimesters

      So, there are safe choices no matter what you choose.

      There is a big difference between saying “Tapazole WILL cause deformities”, which is not true, and letting you know that yes, there is a slight rate of problems with Tapazole (and the other common Graves drug, PTU) during pregnancy. The paper I linked to above is talking mostly about PTU, and how there really isn’t enough data to talk about the risks during pregnancy, but in children, about 1 in 1000 will have problems with PTU. I can’t find similar numbers for MMI/Tapazole. Just to compare, though, 1 in 700 children will have Down’s Syndrome. Nothing will guarantee you a healthy baby, unfortunately.

      I did find another paper which I haven’t blogged about yet that shows that both PTU and MMI/Tapazole are safe during breastfeeding. The infants’ thyroid levels and IQ’s were just fine compared to controls:

      Azizi, F., Khoshniat, M., Bahrainian, M., & Hedayati, M. (2000). Thyroid Function and Intellectual Development of Infants Nursed by Mothers Taking Methimazole. J Clin Endocrinol Metab, 85(9), 3233-3238.

      You might share the two papers here with your doctor so you both have more information about this difficult choice.

      Best wishes!

      Gravity

  21. Evelina says:

    Hello
    I have been recently diagnosed as having an over active thyroid
    ( I have hyperthyroidism ). I was put on a beta blocker, Ativan as well
    as Methimazole 10mg twice a day.
    After discussing all the options with my doctor, my doctor
    thinks the best option for me is to have the radioactive iodine because
    I am planning on becoming pregnant in the near future
    and would like to start a family since I am already 34 years old.
    I spoke with my doctor and couple of pharmacists and they all told me
    that there are some risks like going hypo afterwards and that I would
    have to be taking hypo drugs like synthroid for the rest of my life after the
    radiation iodine treatment.
    I am just very worried and scared as to go ahead and have the radioactive
    iodine therapy and get rid of it for good and deal with the risk of going hypo afterwards.
    My doctor said that many people after the radioactive iodine return to a normal thyroid and some go hypo and take meds for the rest of their lives and live their lives.
    But she said if I want to have kids in the near future and start a family, the best option
    for me is to get the radioactive iodine treatment to get rid of it.
    And even if I would end up hypo after the radiation treatment and would have to take
    synthroid, it’s more safe and there is no health risk to the pregnancy by taking it.
    I would like some information and opinions from anyone and some suggestions please!
    Do you know or think that if I plan to get pregnant after my radioactive iodine
    treatment, and if I turn hypo in worst case scenario, can I go through pregnancy with no problems taking synthroid for example. My doctor said it is safe. But taking Methimazole instead and having pregnancy causes too many problems and birth defects and it’s not recommended.
    What do you think its best for me to do if I want to have children in the near future?
    Thanks
    Evelina

    • gravity says:

      Evelina,

      Take a look at this article: http://graves.pandapoop.net/2011/03/01/the-risks-of-ptu/. There’s a quote at the end about pregnancy that talks about what the current thinking is. The risks of damage to the child while taking anti-thyroid drugs is small, but exists. Certainly, many people choose this path, and the paper describes how it is done. However, as I understand it (and I am NOT a medical doctor), the least-risk option for the baby (but the slightly riskier option for you) is to have the radioactive iodine treatment. Read the paper for more details, and perhaps bring it to your doctor. Many people (including doctors) just hear that “drug X causes birth defects” and want to not use it. They don’t consider the tradeoffs in the way that you are – a slightly increased risk to the baby, but a lifetime of effects for you. The good news is, is that every option you have is a acceptable one. You can have a happy, healthy baby if you continue on the drugs, or if you choose the radio-iodine treatment. The risks are small either way, and it is up to you and your doctor to weigh the pros and cons of each. Good luck!

      Gravity

  22. T. says:

    I was just diagnosed with hyperthyroidism and possible Graves disease by my PCP after my T4 free test showed elevated levels (1.98). He prescribed 10mg iof tapazole 1x a day and wants me to see an endicrinologist. My concern is that I do not understand my hyper diagnosis beyond the high levels. I do not notice heart palpitations, I am cold ALL the time (I run my space heater on high at work all day even in the summer). I have a hard time sleeping but this is more related to my 4 year old not sleeping through the night (she almost never has). I have lost weight (30 lbs) in the past year, but I attribute it to a change in diet (less carbs, smaller meals). I am really concerned about taking meds or getting treatment for something where the only symptom I am seeing is the elevated levels. Can I have elevated levels without any of the other symptoms that are typical of hyperthyroidism? I have not stared my meds (just received the RX today), but the side effects make me very nervous. I know that these are probably questions for my doctor, but should I just wait to take the medicine until I see the endicrinologist? I guess my concern is that I feel great… I have not had any issues and the only reason I was tested was b/c of family concerns about my weight loss (I like to eat, I just eat what I like in moderation!). Otherwise, I would have never been tested. Any thoughts or similar experiences would be greatly appreciated!

    • gravity says:

      T,

      Sorry for the delay in my reply – I somehow didn’t see your post. You’ve probably made your decision by now, but I’d wait to see your endocrinologist and talk about your concerns with them. The dangers of untreated Graves are pretty big, so if I were you, I’d start treatment. Given how minor your symptoms are, you could probably get by with low doses of medications (or rapidly work down to low doses), and this would greatly minimize the risks of any problems from that. I hope you’ve had good luck speaking with your doctors!

      Gravity

  23. drummer says:

    I was diagnosed with hyperthyroidism about two weeks ago, and today I found out I have Graves’ disease. My grandfather also had the disease and had to get his thyroid removed and took Synthroid. I will probably start taking methimazole sometime next week. This is all so new to me and everything is happening so fast and i am scared for how this will effect my health and overall well being. I have learned that an overactive thyroid can have a negative effect on my mental and psychological stability, and this probably explains why I have had so many problems maintaining close interpersonal relationships. I hope once I start taking medication that I will see a big difference in my moods and that I will be able to feel normal. Does any one have advice for me?

    • gravity says:

      Drummer,

      I definitely felt a lot better after I started taking the methimazole, and I hope you will too. Feeling irritable and jumpy and tired all the time definitely can take a toll on relationships, but in my experience, relationships take time and effort no matter what your state of health. If these have been a problem for you, perhaps you might consider counseling. My only advice would be to take your time making a decision. Many doctors will rush you into the radioiodine or the surgery options, and I would just say that you have time now to read about the alternatives and make the decision that is right for you. Good luck!

  24. Rhonda Carter says:

    I am 50 years old and got my graves disease dx 3 years ago. I got put on tapazole and got to keep getting a lower dose. I also have nodules on my thyroid and goiter. I had to have a fine needle biopsy but had no cancer. So,now I’ve just been monitoring my thryroid with ultrasound. Had to change dr’s but finally covinced them to let me stop my medication. Was in remission for almost a year. But, not I’m hyper again. Have gained about 25 pounds in the last three years and still gaining even though I’m hyper again. The Dr. says I might consider removel of my thyroid since I have the graves and the nodules. They are two separate issues and the nodules have not grown more or he was going to do another fine needle biopsy. I’m tired of getting fatter. He says in the US they don’t recommend staying on Tapazole. But, I’m thinking maybe I’d go in to remission again? I don’t want to kill my thyroid or have it removed. I don’t want to gain more weight. Don’t know what to do.

    • gravity says:

      I gained weight when I was hyper too because I was hungry all the time! Are your thyroid levels normal and you are still gaining weight? If you are sure it isn’t a change in your diet or exercise, it might just be a consequence of aging and not needing as many calories as you did earlier. I hope you can have a productive conversation with your doctor – perhaps bring him/her some of the research articles on this site (there’s a PDF at the bottom of every post) and present your case. Good luck!

      Gravity

    • Janine says:

      I also am gaining a lot of weight since they upped my methimazole dosage from 5 to 20 mg daily (to get my levels down). I’ve gained a total of 32 lbs in very little time and it doesn’t seem to be stopping. I am starting full menopause this month and I quit smoking two months ago, so some of the weight gain could be due to the two other things going on right now. It’s so debilitating going from a size 2 most of my life to quickly reaching size 10. I’m heavier now Than I ever was in any of my pregnancies. When will the weight gain stop? I’m blowing up daily.

  25. Candi says:

    Hi everyone! My name is Candi and I am 30 y/o. I was diagnosed with Graves disease when I was 19 y/o after having increased heart rate (120 bpm laying down and close to 200 bpm with activity), Anxiety and panic attacks out the wahoo and protruding eyes, (I looked like a busted up bumble bee – no offense to those TED sufferers). I was immediately put on Methimazole, which I got a rash for a few weeks, but took Benadryl for and was fine. I was also informed to do RAI. I IMMEDIATELY left that Dr. and never went back. As a human being, I felt I had a right to decide what happens with my body. This Dr. felt, as he told me, that is was easier to control once you use RAI. He was right… it would be easier for him to control, nor for me! Once a person has TED, getting RAI is usually contraindicated because it can cause the TED to worsen. Mine went away immediately with treatment on methimazole, which doesn’t always happen. I found a new Dr. who agreed I should get RAI or Surgery, but did not go against how I felt and monitored me for 10 years. I finally found a new Dr. who I felt was a better one to see. She first said I had been on methimazole for a very long time and remission was unlikely at this point. She had me on the verge of getting surgery as I went and did the consult. I eventually declined and am glad I did. I have since lowered my dose, per the Dr.’s order, from 10 mg, to 2.5 over a matter of a year and am being told my thyroid may be going into remission after all this time. Here’s the kicker…. I have been told by other members on thyroid boards that the thyroid antibodies attack the thyroid, eventually causing it to die off, so to speak. I also have Hashi antibodies, so the other end of the spectrum for me may happen without surgery anyways. If my thyroid poops out, I will have the Hashi’s and be hypo and take a medicine for the rest of my life anyways. I do still have a nodule and a large goiter, but have to trust my gut feeling in this one. I just believe that no one should ever be rushed into making a LIFE long decision so quickly. I am glad I waited this long…. as I do not know what may have happened had I taken the RAI or surgery… I will never know I guess… unless I am told my biopsy is positive for cancer. Either way… it can happen in hyper or hypo.

    God Bless!

    • gravity says:

      Hi Candi,

      Thanks for sharing your story. These are tough decisions to make, and I’m so glad everything went well for you.

      Gravity

  26. Ann says:

    My 14 yr old daughter developed full body, chronic hives at the end of March 2012.She also had an elevated heart rate. Went to our primary care doctor, then an allergist. After testing it was found she has no allergies, but she was prescribed singulair, zyrtec, benadryl, doxepin, zantac to stop the hives. She takes all these pills each day. In June she was diagnosed with Graves Disease by an endocrinologist. She was put on methimazole and propanolol in addition to the other medicines. She ended up taking 17 pills a day. We were told the hives may be a symptom of the Graves disease, but then again they may be a different autoimmune disease. The hives are controlled, but they come out when she takes a hot shower or stands in the sun. The good news is that she was recently weaned from the propanolol and is doing well. Even better, we found out yesterday that her thyroid levels are low and she is going down to 5 mg of methimazole a day. Should we be hopeful that she is heading for remission? Does anyone have experience with hives/Graves Disease? Also, we had one doctor suggest staying on medicine as long as possible. Another doctor strongly suggested killing the thyroid. My daughter has been a straight A student and is now struggling academically. I believe it is due to all the medications. The doctor who wants to kill the thyroid says my daughter will feel better if she is not on all the medicine, but can’t guarantee it will cure the hives. If she still has hives, she will still have the medicine & have gone through radiation or surgery. There are no definite answers regarding treatment. It is so hard to know what to do. I don’t want to make a decision that will impact my daughters life negatively. Any advice you can offer would be greatly appreciated. Thank you very much!

    • gravity says:

      Yikes! That’s the first I’ve heard of hives being related to Graves, other than some people have a reaction to the methimazole itself, but it sounds like her hives happened earlier. Actually, the hives sound like what happens when people come into contact with some phototoxic plants, like wild parsnip. Google “Phototoxic Plants” and you’ll fine lots more info about those. Those hives get worse in sun and hot water, although they would hopefully go away after a bit. Some herbal remedies cause this too. It sounds like she’s had them for a while, though, so maybe that isn’t it.

      I’m sorry she’s struggling with her issues right now. You can read more on this site about the pros and cons of staying on the drugs vs. getting the thyroid “killed”, as you say. It’s not an easy decision, but all of your options are good ones. Given her age and the fact that it isn’t abundantly clear how all her symptoms are related, I’d probably lean towards the drugs since they aren’t as drastic, and see if some things cleared up on their own. Again, I’m not a doctor, just a fellow patient. You should run these ideas by your doctor to see if they make sense for your daughter.

      Those antihistamine drugs, especially benadryl, can make you really tired and dopey feeling. Perhaps adjusting the timing of when she takes them could help her out in school. Take the non drowsy ones in the morning, and the drowsy ones at night. Obviously, check with your doctor about that.

      Good luck!
      Gravity

      • JenS says:

        Interesting. I was recently diagnosed with Graves at 52, but looking back I think I’ve had symptoms for several years. I, too, suffered from hives from childhood to college with no determined cause or pattern of environmental exposure.

    • Candi says:

      Hi, Ann!

      I am going through this exact same thing. I went into a flare after a sinus infection and my meds were increased. I have been getting hives after hot showers or if I am in the sun. Has the hives gone away for your daughter. I would hate to hear that this is another autoimmune disorder.
      skimordiegirl@gmail.com

      • Kathy says:

        I started breaking out in hives about 15 years ago. Whenever I got a little too warm. Pretty much daily, I lived in Texas. But funny thing was, once it happened and faded (lasted about a half hour) it rarely happened again the same day. Was told some people have hives and never discover the reason for it. I started treatment for hyperthyroid about 5 years ago, 5 mg of methimazole daily. Gradually as my thyroid tests got more “normal” my hives stopped. I do not get hives anymore. I have thought for years that the hives were part of hyperthyroid problem but this is the first time I have found mention of others having same issues. btw, I also refused to kill my thyroid, although my doc recommended it. I figured I might need it someday. LOL
        I take 5 mg of methamazole a day. Am about to start using lemon balm tea, and maybe motherwort and bugleweed to see if that will control my thyroid. I will continue to have my bloodwork done, and get my yearly ultrasounds to keep track if nodule has changed. But I hope to be able to wean off methamazole.

  27. janet says:

    I have been diagnosed with subclinical hypothyroid based on tsh levels……my doctor recommended tapazole,2 years ago………I am afraid of the side effects, and have not started treatment……I have checkups every six months,tsh levels of .0009 , doctor its very frustrated with me, but I have no symptoms other than the blood levels……which Carries the greatest risk, continued hyper or the med? What would you do?????

    • gravity says:

      Janet,

      I’m not a doctor, just a fellow patient. Very few people have side effects from the drugs. Since your symptoms are minor, I imagine you could take a very small dose, and there would be even smaller risks of any side effects. The greatest risk is if your thyroid gets worse. Thyrotoxic storm is the worst risk (and it can kill you), but the sleeplessness, rapid heart rate, and other symptoms can make your life pretty miserable and increase your risks of other problems. This can even be inadvertent – you get exhausted more easily, so you don’t exercise as much, so you become less healthy, etc. Plus, if you develop the Grave’s Opthalmopathy (eye disorder) that can be very traumatic, painful, etc.

      Personally, and again, not a doctor here, I would go for the treatment and rapidly (with your doctor) work yourself down to the lowest possible dose that keeps your blood levels in check. This would be the lowest risk scenario in my opinion. You may even find yourself going into remission and not needing the drugs anymore. About 40% of people go into remission within a few years.

      Good luck with your decision!
      Gravity

    • Sandy says:

      Hi Janet, I’m now 64 years old. I, too, started with subclinical hyperthyroidism, actually it was idiopathic hyperthyroidism, that was 12 years ago; then another doc said I had Graves disease. No eye popping, no tremors, no palpitations. Did have sleeping problems, and a patch of hair loss though, mind racing, feeling hot, just feeling different. I went into menopause at age 45. I didn’t want to go on methimazole so waited to see a doctor like 2-3 years later, and my TSH was 0.0001, just like it was when first diagnosed. So started around 9-10 years ago on methimazole, and TSH to this date goes up to normal, then they reduce the dose, and then TSH plummets; so up I go again on the dose. Still, no real symptoms, but can’t go under 5 mg of methimazole once a day, and my TSH is still too low on that dose. My liver is fine after all these years, my white blood cells are always normal, my free T4 is normal, T3 is normal, but that other thyroid test is always too high. I get concerned about taking this drug, doc is readying me for RAI, but I’m still hesitant. And, of yes, I have gained 40 or so pounds since my first diagnosis and can’t lose it; always hungry. The weight stays the same, 40 pounds overweight. But then I don’t exercise and I work at a computer. I think my methimazole dose should be 10 mg a day, but the doc keeps reducing the dose every 4 months, and I wind up with next to nothing of a TSH level. I am now on 7.5 mg hoping to get the level up again. Just saying, start the medication, because hyperthyroidism is nothing to play with.

  28. Teri says:

    Hello:

    I am having a major surgery next week – left Knee revision (knee replacement replace) – and I was just told yesterday that I am hyper and was put on 1/2 table 5mg ic methimazole once a day. I know it is a low dose but one of the side effects is blood disorders and I don’t want that to cause problems in surgery. Also, I have gained 20+ pounds and I am worried about more weight gain with the medicine. Would there be a significant weight gain with that low dose? Thanks!

    • gravity says:

      Teri,

      If you have just been diagnosed, that is a surprisingly low dose to be on! Methimazole doesn’t make you lose or gain weight directly, but sometimes after you’ve been hyper for a while and got better, you can have a distorted sense of what portion sizes are appropriate for you. I know that I was one of the rare folks who gained weight while hyper (because I was hungry all the time). I lost weight after treatment because I was feeling less frantically hungry so much. Of course, most people do the opposite – they lose weight when hyper because they are spending so much more energy being “ramped up”, and then may gain some after treatment when things calm down. In my non-expert opinion, I think it is very hard to mentally adjust your idea of what an appropriate portion size is. After years of eating football-linebacker-sized meals, I had a really rough time not eating so much once I was feeling better. I really had to get over the idea that 5 slices of pizza is actually a lot, and that 1 or maybe 2 slices was plenty for someone my size. I’d fear (heck, I’d be nearly panicky) that I’d be hungry before the next meal, but I wasn’t.

      That’s my experience with weight gain/loss and Graves. I would think any changes you would see would be minimal at that dose, and I’d work on your weight from all the other logical perspectives – exercise and eat healthy and not worry so much about the drugs or the disease. Obviously, this is just my own personal experience, and I’m not a doctor. Please ask your doctor for details as they relate to your case. Best of luck with your knee surgery!

  29. Eric Schweinzer says:

    I was diagnosed with graves earlier this summer , was feeling sick for a while but always told by doctors it was viral or something that would work itself out.
    It was a really hot summer, heart problems, dizziness and was down to 105 lbs. Finally a doctor realized it was graves disease. I finally have a endocronogist and family doctor. I was taking 30mg tapazole a day, nothing really explained about levels except they were to low or too high and this should help.Feeling great , gained some weight 125 now , not complaining. Doing my monthly bloodtest , and the endocronogist calls me back says the levels went to far the other way and to drop to 20 mg of tapozole. Now 3 weeks later tired, angry can’t think, tired all the time, I would rather be hyper and loosing weight than this. Will it even out or should I push to have dose changed. Waiting for next blood test which now they switched for every two months, but forced Dr to order one for me , results taking for ever. Sorry so long post…..Just so tired and used to having so much energy it sucks

    • gravity says:

      Eric,

      Sounds awful :( I’m so sorry things aren’t getting “fixed” faster. It sounds like you did the right thing in asking for another blood test, and I hope the results come back soon. Ask your doctors for the actual lab values so you can chart how you feel at different levels. Doctors like to target the center of the acceptable range, but some people feel better at the upper or lower end of that range, so it will help if you can match blood values to your feelings and talk with your doctor about the target value where you feel the best.

      In the meantime, I’d recommend doing things that make you feel better emotionally – hang out with friends or family, get some sunshine, take a walk. Exercise, sunshine and social interactions are great mood-boosters, even for introverts. It may not be a 100% fix, but it will help a little until you get dosages straightened out. Keep us posted!

      Gravity

  30. Eric Schweinzer says:

    Hey quick update , Dr called three days took me off both meds all together , it’s pretty rough but told it would even itself out soon.I was told my levels were way to far the one way.

  31. carolyn says:

    Why is Gravity answering everyone’s questions. Is this all she does?

  32. candy says:

    Saw my endocrinologist today and was advised to do the RAI but not sure I want to. If I end up doing it and become hypo, I would have to take medication – since I already take tapezole, why would my doctor suggest I do the RAI? Is being hypo better than being hyper? If I already take medication and am feeling fine, why change?

    • gravity says:

      The article I cited above is the best answer to that question I’ve seen. Neither hypo nor hyper is good. It’s a lot easier for doctors to manage hypo, though, so they push that direction. If you have no thyroid at all, then you just find the right dose of your meds and stay on it. If you have some thyroid left, though, it can go up and down in activity, meaning you have to readjust your dosage every once in a while. As a patient, though, I think about the risks of surgery or radioactivity versus the lack of any real benefit to me (still a pill a day either way), and I myself opted for the methimazole/tapazole route. I also disliked the idea of permanently damaging my body. You also have to figure in your individual needs. In my case, I spend a lot of time in 3rd world countries, and I regularly lose access to medications and doctors for months at a time. I’d rather keep my own body’s reserves in place rather than kill them off. Obviously, speak with your doctor(s) about your individual situation and what would be best for you. All of your options (surgery, RAI, drugs) are well-tested, reliable, and safe, but they each have some small risk associated with them. You can’t make a bad or wrong choice, but don’t get pressured into something permanent and drastic just because your doctor favors it. Good luck!

  33. sany says:

    I’ve got grave’s, been on methimazole for 8yrs. now i’m hypothyroid. what now?

  34. Jackie says:

    I have had Graves now for 4 plus years. Suppose to make a decision tomorrow about RAI.
    When first diagnosed, I told them that I don’t want to be stuck taking meds for the rest of my life. I had a goiter, under went a nuclear test, got really sick from that, not to mention they found something. Had to under go a scan of my thyroid, they could not find what the nuclear test found. Started on 100mg of Methimazole a day knocked me out for 3 days. I am now on 5mg a day, which has me under control. The Dr took me off the meds 3 months ago and tomorrow I am suppose to decide which way to go if my thyroid is not playing well. Well, you know as well as I do that you can tell when your thyroid is playing well with others or not, so I have to decide, RAI or Methimazole… either way I feel screwed.. RAI will not allow you to turn back where Methimazole will.
    This caused me to put on weight, if I go with RAI, I will no doubt end up putting on more weight as soon as I go HYPO..
    Thanks to your website, I think I have decided NOT to go RAI but to stay on Methimazole and hope that one day I or someone will come across a better way to handle this.
    Thank You Gravity, your input and those who commented have helped me to make up my mind

  35. Charleen says:

    Hi. I just started, very reluctantly, taking methimazole (10 mg) today. I have been dealing with subclinical hyperthyroidism for 6 years now. I have a hot nodule (which is causing the hyper), multiple other nodules, and 2 large (3 cm) nodules that showed Hurthle cell changes upon a biopsy. My T3, T4, Ft3, Ft4 are always within normal limits however, for 6 years my TSH has been around .01-.03. My endo convinced me to try the methimazole to see how much better I will feel, hoping it will encourage me to have surgery (her ideal treatment for me would be to have a complete thyroidectomy). Of course, I do not want surgery. But I do worry about all those nodules and the hot nodule.

    I have some of the hyper symptoms that you folks have and they just started to get worse, which is why I started the MMI today.

    Is there anyone else out there that has a whole bunch of other problems with their thyroid like I do? Anyone out there dealing with Hurthle cell changes? Anyone taking MMI for a hot nodule??????

    Thank you all for your posts and thank you Gravity for the encouraging words about the MMI…..I have been terribly paranoid about taking it due to the side effects, but feel so much better today about it since discovering this blog.

    Thanks!

  36. mia says:

    I’m 41 and was recently diagnosed with graves disease. My endo has highly suggested I do RAI! I’m currently only on beta blockers because they wanted me to do an iodine uptake scan. I’m considering methimazole but Iam really concerned because I take coumadin for a hyper coagulant condition. please help!!!
    is amyone on both coumandin and methimazole??? does anyone know of
    side effects of using both long term?

  37. Linda Corallo says:

    Hello. I was just today diagnosed with Graves. I am hyperthyroid right now, and the endocrinologist called in 10 mg of Tapazole daily, testing my blood again in 2 weeks. Is this a good course of action? She did not offer other options. Thank you.

    Linda

  38. sparkles says:

    I also have to make the choice between RAI and continuing on methimazole. Im 18 and was diagnosed three years ago this month. At first my TSH was .005 and I was experiencing a high resting heart rate 90-120. They put me on Atenalol at first and then when they started the methemazole the stoped the atetalol because they said the methimazole would calm down my heart rate. They found it when I went to the doctor because I was having asthma like symptoms when exerting myself. It turns out it wasnt asthma and some type of vocal cord disfunction. I havent had that in over two years (related? I dont know). At the doctor they felt my neck and noticed that I had an enlarged thyroid and thats when I got my blood tested with and found out that I had hyperthyroidism and then found I had graves disease. Ive been to a few different doctors but now I am at children’s hospital (as I am 18). I started on methimazole and my dosage was put up and down as my levels were monitered and then was but on levothyroxine as well for a short time and I went into remission and went off the medicaiton with normal levels for about the last year and a half with no medicaiton. I just got my blood drawn and my TSH is .04 and my T4 is 1.3 (t4 not too far off)I was surprised because I feel totally fine (Bear in mind though that the only time I had symptoms of graves was in the very beginning when I first was diagnosed). I went to the doctor today and she said my options were the methimazole or RAI. She said that it is likely that if I go on to the methimazole again and did go into remission again for a year or so that it would likely come back again and I would be back faced with this same decision I have now. Im like many on this blog the thoughts of most likely having to rely on a medication for the rest of my life does not sound appealing if I go the RAI route. But the side effects, though rare of the methimazole like liver damage and depleated white blood cell count are pretty bad.The possibility of these effects increase the longer you are on methimazole, is how I understand it. (P.S. a few months after I started the methimazole I had severe pain in my wrist a lot of pain to wear if my body twitched or my hand touched something it caused extreme pain, I had a very hard time sleeping and the pain would wake me up at night. I think that this was a side effect of the methimazole as I had not hurt my hand. I lasted a couple of weeks and went away. It was a painful but not a good enough reason to not take the medication at all if you need to I think its very uncommon. ) I have also learned from your blog that Methimazole has the possibility of causing birth defects in children. While the RAI ablation with synthroyid has no effects on a child in the womb. I pray some day to have children and I wish to take no chances on one of them possibly having a birth defect of any kind. That will play a reasonable part in my decision. I just wanted to share my story here.

    • mema says:

      Hi
      Sparkles I am in the same position my doctor wants to put me on Methimazole and PTU in the 1st trimester but I am scared of the birth defects and side effect I am considering the radio therapy because the hypothyroidism is easier to manege and synthyroxin wan’t affect the baby did you made any decision yet ?? advise me

  39. sandra says:

    I was diagnosed with a goiter and hyperthyroid. I’m on 10 mg. of Tapazole a day. I have gained weight like crazy and have no energy !! And also have severe muscle cramps unless I take two Calcium, Magnesium and Zinc supplements a day. Anyone else have these severe muscle cramps?

  40. Diane says:

    Has anyone been on methimazole, on and off as needed and been successful in maintaing wellness more than 10 or more years?

    Thank you.
    Diane

    • Rebecca says:

      Diane, I would be interested in hearing if you had any replies to your post.

      I too am hyperthyroid but no Graves. I was on tapazole for several months and then my labs stabalized and I am starting once again to get symptoms, especially an almost non-existent TSH although the T4 is 22.7 (Canadian).

      I do not want any RAI treatment and hope that an “as needed” is the answer.

      Please let us know what you found out.

      R

  41. Ashley says:

    Hello everyone!
    I was just diagnosed with subclinical hyperthyroidism. I am 19 years old. My doctor has prescribed methimazole. Unlike the usual symptoms of hyperthyroidism I have been gaining weight even though I exercise and eat healthy. I was wondering for the folks who gained weight did taking this medication bring your appetite back to normal?

    • Jeff says:

      I would ask your doctor for a bloodtest, as too much medication can push you into HYPOthyroidism, where weight gain is common. I had the same issue initially, because my doctor wasn’t very bright. My appetite most definitely went back to normal after medication, but I’ve had an issue with weight gaining. It takes roughly 3600 calories per day to maintain 180 pounds while taking 5mg of Methimazole every day.

  42. Candi says:

    I posted earlier last year on how I had had graves for many years and was fine on methimazole. Well I got a sinus infection last month and my graves flared up… I had only been on 2.5 mg’s of MMI then. I am not on 2.5 twice a day and have started getting a rash that comes every single day. I switched to PTU but felt awful so went back on MMI. The rash starts on my legs to my feet then goes away after a few hours. It goes on my arms too at time. Has anyone experienced this. Is this from too much MMI? I am getting tests done on Friday to see what my levels are like. I am hoping I can drop off the high dose and go back to 2.5. I was so close to remission.

  43. Rebecca Lucanski says:

    I was diagnosed with Graves in 2007. I started taking 30 mgs. of Tapazole per day. I experienced some hives in the beginning, which is one of the side effects, but I took a some Benedryl and it cleared them right up! I responded to the 30mg dosage very quickly and was able to cut it back to 10 mgs. Next, I went down to 5mgs. per day, and now I take 2.5 mgs. every third day. I will be getting my blood checked again soon, and as long as it is ok, I will be able to try to stop my meds alltogether. I am nervous, but also very excited to be in remission and sustain it. It has been a long time coming! I have been feeling the most “normal” (whatever that is) in the past 2-3 years. The early years were a nightmare! I experienced palpatations and severe anxiety attacks. I still struggle with an irregular heartbeat here and there. I wish I could completely get rid of that. I had the flu this past January and my heartrate went up to 195, but it didn’t last long and only happend when I was vomiting. I am very optimistic that we will all achieve peace with this disease. I empathize with every one of you. God bless.

    • mae says:

      Try magnesium for your anxiety. It is a natural beta blocker. I take it – 250mg once to twice a day a few days a week. Take at night first because it does tend to relax you a bit. I used to have anxiety attacks a lot and come to find out, I was just low in magnesium. Haven’t had them since I’ve been taking it.

      Hope that helps.

  44. Pingback: Pregnancy with Graves’ Disease – risk of birth defects for mothers taking anti-thyroid drugs | Graves' Disease Research

  45. Jeff says:

    I’m 19, turning 20 in September this year. I was diagnosed with Graves Disease / Hyperthyroidism in April of 2010 (sophomore in high-school). My initial doctor was a fool, didn’t seem to care much about how I was doing, etc etc. I was taking 10mg of Methimazole per day, 5mg in the morning, 5mg in the afternoon. Eventually I got fed up with the long waits to see this doctor for 2minute talks, so I switched to an endocrinology center where I’ve been going since early 2012.

    I’m an athlete, so the weight loss, muscle wasting, and struggle with symptoms really ruined my athletic career in high-school. Oh well, it’s in the past I suppose. I was given a choice by my doctor to either do the RAI or stick to my 5mg of Tapazole a day in August of 2012. I opted for RAI, and had the initial iodine (so that they can see the thyroid and measure size) done. However, after 5 days of no medication, I had no symptoms. Quick call to the doctor and she told me to wait another few days. Still no symptoms! Bloodtest a week later and I was in remission :)

    Unfortunately, I relapsed in February of 2013. I caught it in March, after my weight fell from a healthy 178 to a somewhat anorexic 157 (lost all my muscle mass…. again.. I’m 6’2″). Back on 5mg of Tapazole since. I opted for RAI again, but I’m seriously second guessing this decision after reading this. I have my appointment to get the iodine done on Saturday, but of course I can change that decision. I’m considering sticking with Tapazole.

    I’ve had a hard time finding studies on longterm Tapazole usage, which is why I previously swayed towards RAI. This was really helpful – Thanks so much!

    I’ll keep an eye on this comment, I’d really like to hear from people who have done longterm Tapazole usage.

  46. Stacey says:

    Help I’ve been on methimazole for 1 month. 20mg a day divided in 2 doses. I have these crazy body pains! I thought I pulled a muscle or something in my leg. But the. In 2 days the pains went away and went to my other leg. Now the pain is in my shoulder and fingers on my right hand???!! Do you think I’m on to much medication? Should I decrease the dose? I felt great on the medicine until this started happening. It’s an unbearable pain.

    • gravity says:

      Stacey – please call your doctor. We can’t offer you medical advice here. I hope you feel better soon. Good luck with everything!

  47. victorious13 says:

    I have been taking methimazole since November 1999. By the grace of God, I’ve been stable, down to just 5mg daily. Many doctors have pressed me to go for RAI or surgery. I was off the med in twice, years ago, but got very sick. My thyroid is very dynamic. The truth is that I as long as I don’t develop any adverse reactions to the med, I will take methimazole. I hope and pray that you do extensive research and seek a second opinion before making a drastic decision that will affect you for the rest of your life. Don’t trust doctors, but rather, educate yourself, pray and make the right decision without fear.

  48. Dani says:

    Hello everyone and thank you for this forum. I have been diagnosed with Graves for about 5 years now. I have refused to get RAI… I have fired well over 5-7 doctors in that time span. They just don’t listen…they forget that they work for us not us for the. I am the boss of my health they just give me some guidance. I initially started back than with 60mg of tapzole and a beta blocker because of my heart-rate resting was 130-160bpm at times and those fun palpitations. I think I stayed on that for a few months and my levels we going down. I found a herbalist (lemon balm, lycopus aka bungleweed, holy basil), acupuncture, yoga and eating whole food organic local diet. Completely staying away from GMOs came a couple of years later it is kind of hard to do but NOT impossible. I have been on and off Methimazole (10mg down to 5mg) when my levels start to raise and I know when that is happening so I start taking it again. It is extremely important to listen to your body get all the information you can before ever making any drastic decision like RAI or surgery. I finally found these two doctors that think outside the small box most of the other ones are in becasue insurance companies and the AMA control their every move.Oh besides money as well. My doctors names are Dr. Burt Berkson and his son Dr. Arthur Berkson in Las Cruces, New Mexico. I am on 5mg of Methimazole still as well as 3mg of Naltrexone also known as (LDN- low-dose Naltrexone therapy) Alpha Lipoic Acid 300mg and Selenium, Turmeric, Prenatal vitamin, B-Complex ( a must if taking ALA) the herb tincture at night. I have also heard of Colostrum being beneficial as well. Nevertheless, I feel great!!! I have been working out and losing the extra 15lbs I have gained since I have been going to college (sitting and studying all the time doesn’t burn calories) I could blame the thyroid but I think it has more to do with me being 38 years old. :) Furthermore, my levels are within the normal range and I am finally starting to see a slight elevation in my TSH. RAI will always be a option but NOT the first EVER!!! I am so glad I did my own research and that I have enough balls to tell doctors how I feel and how I find new ones when I don’t think they are listening to me. Svetla Bankova as been an inspiration to me… look her up. http://drlwilson.com/Articles/GRAVES-INTERVIEW.HTM
    and here is my integrative doctors info as well. http://drberkson.com/
    “Stop the Thyroid Madness” is a great website too. Good luck to all of you and be strong and fight for your health.

  49. Pat says:

    I have been taking MMI for 30 years….I only need the smallest dose to keep my TSH (1/4 of a 5 mg pill twice a week) in the range of 1.5 to 2.5…twice I have tried to stop and after a year my TSH drops to undectable levels….so since this is the second time I tried to stop and after a year my TSH drop (no symptoms of hyper though) I decided just to remain on MMI for the rest of my life, since there is too much risk in having no TSH.

  50. yvieA says:

    So I was diagnosed with graves about a year ago, lost a lot of weight. Hyperthyroid, so my Endo, said “no surgery”,, I’d have to take a pill everyday and would be hypo. She said, if I wanted to do the Rad pill I could, it was up to me, but she wanted to start with Methimazole 10mg. She said, I could like most go into remission, then when you start getting symptoms take the pill again. Anything beats surgery, seems graves and thyroid disorders are very common. So now I’m on 5mg, I did gain weight, but not too bad. I lost so much muscle, I was in really good shape, but? Now, I feel a lot better, but skip a day or two between pills still on 5mg, I’m hoping to get it reduced more. After 3 months my levels went down about 60%, very good. Although, my doctor had me stay away from fish, and no working out at all, until my levels were better. Now I can eat fish. I do know there are a lot of foods you can eat that help. Look up blood type diet as well, it’s good for thyroid disorders. Grapefruit is good for hyperT. My biggest thing is trying to get back into shape, I’ve been doing a lot of training etc. Seems it is working a little. I know electrolyte pills (vit) also helps if you ever get leg/muscle cramps. I use too, but not in a while. Also with Graves my Endo said, the eyes, not to worry unless your a smoker. So I hate taking pills, and I know I’m not the best eater, but I’m working on me. So far, so good. If I can ever help anyone out let me know. Stay away from Surgery, so many people that have had the surgery really regret it. I work with 5 people that had the surgery. I would have never known, until I got sick. Also, stay proactive on check ups. If anyone has advise for me building up my legs again, let me know. I’m also a trainer, all I know to do, is working, but super slow, my legs are so small, compared to what they were :(

  51. Shannon says:

    I have been recently diagnosed with Graves and Hashimoto Disease. The doctor is pushing for me to have the RAI or surgery. I don’t feel like that is the right decision right now. So he has given me 5mg MMI twice a day which doesn’t sound like a lot. I want to do more research before I do something permanent. Is it normal for people to have Graves and Hashimoto?

    • gravity says:

      Hashimoto’s Thyroiditis is a different, but related, thyroid disease. According to Wikipedia (for what that’s worth), folks with Hashimoto’s swing from hypo to hyper and back. I suspect, but don’t know, that given the small, but serious, risks of MMI, your doctor is being conservative with the MMI dose while you are hyper, which may be a valid assessment. Also, if your values are swinging around all over the place, I can see why s/he might be reluctant to keep you on medication, since your disease would be much harder to control. I’m not familiar with the recommended treatments for Hashimoto’s. According to the Mayo Clinic and WebMD (good sources, but not the final word), neither RAI nor surgery is listed as a treatment for Hashimoto’s. Your disease may have different features than the norm. It sounds like it is time to get a second opinion from an/another endocrinologist who can explain to you about YOUR disease, what they feel the best treatment for YOU is, and give you the information you need to make your decision. Good luck! Let us know how things work out, and hope you are feeling better soon!

  52. Jen says:

    Hi, I’ve been on Methimazole for 15 months, after having untreated Graves for years, on and off. (First time diagnosed with hyper was after first pregnancy.)

    It has been a fine med for me. My levels gradually went down and have been normal. Yay!
    Well, this week, I had my tri-monthly blood test, and my levels are elevated!!?
    Is the medicine not working anymore? Am I resistant to it now? Have I turned into thyroid cancer? What is going on?
    The doctor’s office is making me come in a week early from my 2 week appt.
    All I ever read on this medicine is that people go into remission.
    NOT get worse!!!!
    :-(

    Anyone ever have this happen??
    I thought I’d just live happily forever on this med.
    I refuse to get RAI or surgery if possible to avoid it.

    I take 5mg, 3 times a day. (And remember to take it MOST of the time! Lol.)

    Anyone? I’m sooo sad and confused!

    • colette says:

      Note from blog owner: the following comment veers very far out into unverified territory about Graves. Please use caution when interpreting this comment.

      To sad and confused, I am winning the battle in that I waited ten years to become hypothyroid after getting Graves in 2005. My California doctor stated she wanted me to get hypothyroid so she could wean me off PTU. I moved out of state and two women doctors in 2008 fired me as their patient for refusing RAI. I found an internist understanding enough to let me continue PTU. I had been on it five years without being able to raise it up though T3 and T4 went normal. Then came the exciting revelation. Many Graves patients get it in the winter and I was starting to get close to osteoporosis by 2009 so I saw a connection between the sun or lack of it and Graves. Sure stress and all the other conjectures like toxicity, genes, lack of antioxidants are causal factors but to help yourself please get Vitamin D checked. You need 50,000 units to start with doctor prescription. Then 5000 units a day until you get optimum levels of D not the minimum levels which is only 30. My Vitamin D was 16 when I took my first D test in 2010? and it is now 40 and it took a few years. But I did not take 5000 units a day only 2000. I should have taken 5000 units a day looking back and I would have gotten to the level I am now at much sooner. The moral of the story is get your Vitamin D levels checked and use the sun without sunscreen before 10:00 AM and after 4:00 PM. Or get your feet in the sun. Get a lot of antioxidants in your food and supplements. I am weaning off Methimazole starting tomorrow because my TSH is 5.56. I just got my labs back. Getting off white flour and sugar (not completely) isn’t such a bad idea either. But if nothing else get your Vitamin D3 levels checked and get to optimal levels which is above 60. Doctors are cautious and usually recommend 1000 or 2000. I want everyone who reads this site to understand that this Vitamin D therapy is the single most effective aide in helping the overactive thyroid. I also figured out early on that hormones had something to do with it as I got Graves after menopause. Well, Vitamin D is a hormone of sorts. There are studies on mice that became hyperthyroid when they didn’t get enough Vitamin D. I have been on Methimazole a year and a half and it is possible that PTU wasn’t the drug for me. Had I been on Methimazole that too could have helped to resolve things faster. My Graves low levels didn’t budge until I took D and my doctor realizes it too. He stuck with me. Hooray for this understanding man.

      I am a happy camper and I hope you will be too soon.

  53. Karisa isle says:

    I am a 22 year old female I have had hyperthyroidism/graves disease for 7 years now. I recently had a baby in march of 2013 I didn’t need any medication while pregnant because my levels were leved out because of the baby raking some of the hormones. after I had her it all went down hill again. I am on methamizole one tab a day but I’ve been having crazy side effects like I work 5 days a week cleaning houses and it seriously takes a toll on my body. but recently ive been getting lots of stress knots in my neck and shoulders which is causing headaches not too bad but scary cause its been going in for two weeks bow there not bad but just bothers me I’m just wondering if Anyone has had this side effect. and I’ve had a lot of stress and depression and mood swings I’m just curious if it’s a normal thing. hopefully everything straightens out I think its cause I stopped taking my meds for a week just started taking them again and I feel like crap. please suggestions

Leave a Reply

Your email address will not be published. Required fields are marked *

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>