need help making sense of why i am off carbimazole

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two and a half years ago i started carbimazole for high free t4. first bloods had tsh at 1.2 and free t4 at 27. on 5mg of carbimazole for two and a half years, it pretty much pushed free t4 to within range (upper end of).

last month my bloods were tsh 3.9 free t4 20 so doctor took me off carbimazole. blood test two weeks later and free t4 is now 25 and tsh 1.8. despite this he says not to go back on it i have large supply). why? i feel dreadful, loads of palpations, feel hot and nervy, why cant i start carbimazole again? i feel helpless and scared of letting my numbers run amok..........please help

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  • Posted

    Hi Stuart,

    Most of us, including myself, routinely have TSH, Free T3 and Free T4 checked for lab results with antibodies checked for at least once.  In addition, I also have liver function tests and Complete Blood Count checked every 3 months.  I think you need more definitive tests to know what is happening with you and why it is happening.  While our values are important, we also go by how we feel as well.  From what you posted, it is not clear whether you actually have hyperthyroidism, and if so whether it is due to an autoimmune cause or is due to an infection.  Need more information.

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    • Posted

      that is were i am stumped..in two and a half years my doc and my endo (who only goes by tsh) have only ever done bloods for tsh and free t4. my point today is should i go by how i feel and restart a small dose of carbimazole to keep free t4 in check or weather the storm so to speak...would it be normal after stopping carbimazole to see such a boomarang in numbers untill the thyroid settles?
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  • Posted

    The problem is you do not have a diagnosis.  While taking a small dose of Carbimazole might resolve your symptoms, your lab values will not be where they all should be if you take even a small dose.  You may have an adrenal problem or some other problem.  With myself, my TSH was less than 0.01 and T3 and T4 were both elevated when I was diagnosed.  Methimazole (the equivalent in Canada of Carbimazole) normalized the T3 and T4 and helped get rid of symptoms but did nothing to raise my TSH.  My TSH raised when I added L-Carnitine and Acetyl-L-Carnitine to my treatment.  In your case, your TSH is not abnormal though your T4 was.  You also need Free T3 and antibodies to know what is happening with your body.  I would ask my doc to do them and to give you a definitive diagnosis.  You might try taking the herbal supplements Bugleweed and Melissa to treat the symptoms without affecting your blood tests so drastically.  Yours is not a usual pattern that I have seen with hyperthyroid patients or Graves patients.  My lab results were similar to  yours only the first month I was tested, by the second month of testing, my TSH had dramatically dropped and both my T3 and T4 were elevated even more.
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    • Posted

      did you start treatment after your first labs? if so what dosage? my endo basically dismissed me as not having an issue because she said tsh was fine and that was that....frustrating to say the least. so your advice would be to avoid restarting carbimazole?
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    • Posted

      After my first labs, I was referred to an Endocrinologist.  It took about 3 months to complete all the testing for a diagnosis and I was given Propranolol during that time to slow down a fast heart rate.  I did not start on methimazole until all the tests were in and then I was started on a dose of 10 mg.  I am not telling you to take it or not take it.  All I am saying is if you take it, you might feel better but your labs are going to be off because it is going to block your thyroid hormones.  If you are feeling this way due to a cardiac problem or adrenal problem rather than a thyroid problem, you won't fix the cause of the problem.  You can start by telling your doc you are having symptoms, do not have a diagnosis and need something to control your symptoms, what do they suggest? 
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