TSH>100 and still on methimazole

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Hi all, I was diagnosed with GD in May 2018 and my tsh levels were 0.001

After 5 months of gradually increasing methimazole (from 5 mg to 25 mg) my tsh went from 35 and now is over 100. My tsh number and symptoms say that I’m hypothyroid. My doc hasn’t changed my medication but told me to increase the methimazole dosage. My hair started falling out in clumps and I have no energy to do anything, depression and anxiety became my two best friends.

My GP said to go see a specialist and my appointment is not until 2 weeks. I wanna know if it’s ok that I’m still taking methimazole since my tsh over 100 and my T4 is low. Has anyone went from hyperthyroidism to hypothyroidism and what medication were you prescribed?

Thanks in advance!

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  • Posted

    In my opinion you should not be on Methimazole if your TSH is 5 or over. I have seen this pattern of hyper to hypo in patients who have Hashimoto's thyroiditis. Some patients who have Graves disease also have Hashimoto's as well and they do better treating their disease with about 3,000 mg of Regular L-Carnitine and adjusting the dosage downward as their labs improve.

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    • Posted

      so are you suggesting that I stop taking methimazole until I see an endo? if i stop taking it now will i have any side effects?

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    • Posted

      Sorry my last response hiccuped 5 times. You need to discuss this with your doc. But not only should you discontinue the Methimazole but you need to add thyroid hormone replacement if your labs are correct. I would ask him to repeat the tests and if the same results definitely ask him about stopping Methimazole and starting thyroid hormone replacement, If you find after doing this that you again go hyper, then I would check antibodies for Hashimoto's and if positive for that, if you go hyper again take 3,000 mg of Regular L-Carnitine instead of the Methimazole, I usually see your pattern in Hashimoto's. You may have Graves as well but if you have Hashi's, both the Methimazole and the thyroid hormone replacement will be too strong but the Carnitine will regulate it better. Discuss all this with your doctor. Most docs do not know this about Hashimoto's but I have seen this pattern in patients on this Board. They don't know about L-Carnitine either but I was fortunate to come across a research article on this. It was done in Italy around 2001.

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    • Posted

      Sorry my last response hiccuped 5 times. You need to discuss this with your doc. But not only should you discontinue the Methimazole but you need to add thyroid hormone replacement if your labs are correct. I would ask him to repeat the tests and if the same results definitely ask him about stopping Methimazole and starting thyroid hormone replacement, If you find after doing this that you again go hyper, then I would check antibodies for Hashimoto's and if positive for that, if you go hyper again take 3,000 mg of Regular L-Carnitine instead of the Methimazole, I usually see your pattern in Hashimoto's. You may have Graves as well but if you have Hashi's, both the Methimazole and the thyroid hormone replacement will be too strong but the Carnitine will regulate it better. Discuss all this with your doctor. Most docs do not know this about Hashimoto's but I have seen this pattern in patients on this Board. They don't know about L-Carnitine either but I was fortunate to come across a research article on this. It was done in Italy around 2001.

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    • Posted

      I went to see another doctor today to get a second opinion and she said to stop methimazole immediately and come back in a week for blood work to see where my tsh and t4 will be at. I’m still going to take propranolol for 1 more week, gradually lowering the dosage and then cutting it off completely as my heart rate is at 55 bpm constantly.

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  • Posted

    In my opinion you should not be on Methimazole if your TSH is 5 or over. I have seen this pattern of hyper to hypo in patients who have Hashimoto's thyroiditis. Some patients who have Graves disease also have Hashimoto's as well and they do better treating their disease with about 3,000 mg of Regular L-Carnitine and adjusting the dosage downward as their labs improve.

    Report Reply
  • Posted

    In my opinion you should not be on Methimazole if your TSH is 5 or over. I have seen this pattern of hyper to hypo in patients who have Hashimoto's thyroiditis. Some patients who have Graves disease also have Hashimoto's as well and they do better treating their disease with about 3,000 mg of Regular L-Carnitine and adjusting the dosage downward as their labs improve.

    Report Reply
  • Posted

    In my opinion you should not be on Methimazole if your TSH is 5 or over. I have seen this pattern of hyper to hypo in patients who have Hashimoto's thyroiditis. Some patients who have Graves disease also have Hashimoto's as well and they do better treating their disease with about 3,000 mg of Regular L-Carnitine and adjusting the dosage downward as their labs improve.

    Report Reply
  • Posted

    In my opinion you should not be on Methimazole if your TSH is 5 or over. I have seen this pattern of hyper to hypo in patients who have Hashimoto's thyroiditis. Some patients who have Graves disease also have Hashimoto's as well and they do better treating their disease with about 3,000 mg of Regular L-Carnitine and adjusting the dosage downward as their labs improve.

    Report Reply
  • Posted

    In m of hyper to hypo in patients who have Hashimoto's thyroiditis. Some patients who have Graves disease also have Hashimoto's as well and they do better treating their disease with about 3,000 mg of Regular L-Carnitine and adjusting the dosage downward as their labs improve.y opinion you should not be on Methimazole if your TSH is 5 or over. I have seen this pattern

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  • Posted

    In m of hyper to hypo in patients who have Hashimoto's thyroiditis. Some patients who have Graves disease also have Hashimoto's as well and they do better treating their disease with about 3,000 mg of Regular L-Carnitine and adjusting the dosage downward as their labs improve.y opinion you should not be on Methimazole if your TSH is 5 or over. I have seen this pattern

    Report Reply
  • Posted

    In my opinion you should not be on Methimazole if your TSH is 5 or over. I have seen this pattern of hyper to hypo in patients who have Hashimoto's thyroiditis. Some patients who have Graves disease also have Hashimoto's as well and they do better treating their disease with about 3,000 mg of Regular L-Carnitine and adjusting the dosage downward as their labs improve.

    Report Reply
    • Posted

      Hi Linda, so I stopped taking methimazole yesterday and last night and also tonight. I have been feeling very strange. My body feels weak, I can barely keep my eyes open. I also cut my propanolol dosage in half from 20mg/day to 10mg/day. I met with a different doctor yesterday and after seeing that mt TSH levels were so high, she told me to stop taking methimazole. I'm just wondering if how I am feeling is normal? It it ok if I just stopped with methimzole abruptly? My doc said it would be ok.

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  • Posted

    hey ,i'm on same medicine neomercazole 10 mg/day .I have started with 15 mg/day when my tsh was 0.001 .After a year ,my tsh reported at 5 and doc reduced dosage to 10 mg/day .Because tsh if more than 6 is categorized as hypothyroidism .I wonder why your doc is continuing and increasing dosage .You should see another doc immediately as disturbance in hormones is linked to critical body functions like heart rythm,fatigue,hair fall,appetite .

    In the long term i have asked my doc ,what to do further ,whether to continue medicine or not ,she said that i have been given radioactive iodine to cut this medicine .However i'm not considering this and just continuing medicine .

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    • Posted

      No .Still not .Doc just indicated future remedy .I have to visit Doc in next week after getting fresh reports of tsh and t4 .After getting my results ,doc will prescribe future course of treatement .

      However iodine treatement has one big con ,it can cause birth problems in babies born from iodine treated patients .

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    • Posted

      I don’t know why she increased it either, it made me miserable for quite sometime. I went to see another doctor and she said to stop methimazole and come back in a week for lab work. Rai and thyroid removal should be last resort imo, I hope you don’t have to go thru that. Good luck!

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