# Methimazole no longer effective for me?



## evak (Jun 4, 2013)

I was recently diagnosed with Graves. Units of T hormone measurements different here in Canada, but I was appox. 3X the maximum of the normal range. Started 15 mg. Methimazole 1X per day about 8 wk. ago. After 10 d., increased to 10 mg. 2X per day for a total of 20 mg. per day. In my first 3 wk. on Methimazole, my FT4 went down by about 40%, but still is more than double what it should be. For the last four weeks, my FT4 stayed level at that rate, and is now gradually going up. I've not changed anything about how much I take, or how I take it. Anyone else here had this type of experience? Anyone know what's going on? Thanks.


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## HotGrandma (Sep 21, 2012)

evak

I had the same problem. Methimozole has a short life and really needs to be taken 3 times per day. Once I started taking it 3 times per day instead of 2 times per day, there was a fast improvement in the labs. Although my body didn't realize what my labs said. Took months to feel better. Could you post your labs with ranges. Also have you had any antibodies tested?


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## evak (Jun 4, 2013)

Thank you for your prompt response Grandma. It is reassuring. Here is my information...

Normal Free T4 range is 7 to 21. I am 56 year old female.

When diagnosing me, on Apr. 10 my FT4 was *58.7*, and TSH *<0.03*. Test showed no Hashimodo's antibodies. I was never tested for Graves' antibodies (is there such a thing?) Ultrasound showed ~20% diffusely enlarged thyroid. Radioactive Iodine uptake was 55% in 4 hr.

Apr. 13 - started 15 mg. Methimazole 1X per day
Apr. 18 - Free T4 ... 60.7
Apr. 23 - started 20 mg. Methimazole (10 mg. twice a day)
Apr. 25 - FT4 ... 45.2
May 9 - FT4 ... 38.8
May 23 - FT4 ... 37.9
June - FT4 ... 41.1

Does it seem strictly like a frequency of dose issue? Thanks again for your help. Having anything at all wrong is new to me; I've been very lucky.


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## HotGrandma (Sep 21, 2012)

Geez, your levels are high. How are you feeling? Are you having any trouble with your eyes? If memory serves me in Canada they test Trab AKA TSH receptor antibodies. In the USA we use both Trab and TSI as antiboby tests( for graves). It would be a good idea to know what your antibodies are and compare through out your treatment. Did you doctor discusses a plan for treating "graves"? My personal experience 2 months of Methimozole dosing 2 times per day made my levels worse. Dosing 3 times per day for one month took my levels extremely hypo. So please make sure to get your labs done every 4 weeks never longer to avoid going hypo. Are you also having menopausal symptoms? I kept going to the Dr. with hyper symptoms to be told it was menopause. Mix all these hormonal things up in the same pot and its awful. Like you I was on no medication until I was diagnosed with graves.


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## evak (Jun 4, 2013)

Thanks, Grandma. Your reaction is interesting. Now I know why I was in an Endo's office within 3 days of my initial test results! Also, why did you use quotes around "graves"? Do you have your doubts?

I had noticed my heart fluttered at times, and occasionally gave a big 'pound', and that physiologically, I was tense most of the time, even though emotionally, I felt calm and happy. I never put those symptoms together with frequent BMs and feeling the heat and sweating more than I used to, as well as elevated BP. Chalked it up to a combination of getting older, having gained 25 lb. from when I was in my prime, and menopause. The reason I saw the doc was a slight swelling in my neck, and then it all came together. It's a classic case of not realizing that you feel kinda' bad until you feel a little better!

No real problems with my eyes, although my one eyelid was getting very puffy and red more frequently in the past. Moisturizer morning and evening seems to look after that thus far.

The endo's recommendation is using Methimazole to get me in the manageable range followed by Radioactive Iodine ablation or thryoidectomy (my choice). He said that no one would touch me for either of those treatments with the T levels I have at the moment.

The endo has me getting blood tests every two weeks, but he's given me a standing order for blood work, so that if I feel I need to go more often, I can. Any possible hypo should get nipped in the bud, therefore, if I ever get to that stage! Thanks for the idea of getting the antibody test. I will ask him to order that. Socialized medicine can be a wonderful thing!

Thanks again, and please don't hesitate to share any other thoughts you may have on this. It's all new to me.


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## HotGrandma (Sep 21, 2012)

The " " is because I feel I am labeled and this disease is evil. No doubt it is horrible feeling like something's wrong and won't go away quickly. Other's on this forum are for ablation. I have no choice but to try to achieve remission through methimozole. I would caution you with regards to the antibodies. Studies have shown that if your antibodies are active ablation could cause or worsen TED (thyroid eye disease). The antibodies attack the thyroid, it the thyroid is not there to attack they can turn and attack the eyes.


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## evak (Jun 4, 2013)

Thanks so much, HotGrandma, for all of the information and ideas. I will definitely do a lot more research on the antibody aspect. My endo is also not opposed to long-term control using Methimazole. He cited a number of patients in his practice for whom radioactive iodine and surgery are not options.

I'll definitely be doing a lot more reading on this site. You and others here have a wealth of experience. Thanks again.


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## HotGrandma (Sep 21, 2012)

evak
The reason you were in your Endo's office within 3 days I suspect was because of the possibility of a "thyroid storm" which could be life threatening. That's also why they cannot do RAI or surgery until your levels come into range.

Also important that you do not exercise right now especially with the heart palp's. Sounds like the decision is yours as far as your endo is concerned. RAI and Surgery is forever, and you will be on replacement thyroid medication forever. That said, "graves" is forever too. You will always need to monitor your levels.

There are triggers that aggravate "graves" aspartame, alcohol, over the counter medication to include advil are to be avoided.


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## Andros (Aug 26, 2009)

evak said:


> Thank you for your prompt response Grandma. It is reassuring. Here is my information...
> 
> Normal Free T4 range is 7 to 21. I am 56 year old female.
> 
> ...


HotGrandma knows her stuff. Methimazole has a very short half-life of 3 to 4 hours.

I am sorry for this on your behalf. Hyper/Graves' is a beast. We are here for you!


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## evak (Jun 4, 2013)

Thanks HotGrandma and Andros! The funny thing is, if you spent a few days with me, you'd never know I have any kind of issue. I ride my bike, play golf and garden without any problems, and I rarely have a sick day from work. I really don't feel all that bad. Heart rate is a bit high, but never more than 95. It just 'flutters' at times, and sometimes feels like it missed a beat. My family Dr. was really surprised to discover this whole situation. That's not to say I'm not taking it seriously; the numbers don't lie. I'm due for another blood test tomorrow, and I usually hear from the endo on Friday. Endo is very, very good, I think, so we'll likely have a good chat about where I am now.

Thanks so much to both of you for your support! It, and your experience, are both invaluable to me.


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## evak (Jun 4, 2013)

...and thanks for the warm welcome to the group! )


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