High TSH

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My TSH was down to 0.01 and given Carbimazole 20mg initially and 5 mg. Later I went through 1/2 dose of Idodine treatment. Even then my TSH level not settled and again dropped up to 0.04 then  I was given 20 mg carbimazole per day. After 2 months my level came up to 62.Now I have stopped taking Carbimazole. Is it ok for me to stop and check after another 30 days and start with 5 mg. Pleas advise me. Cyril de silva

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  • Posted

    Hi Cyril, I believe the meds may work differently on everyone. That's why it's good to consult a good doctor or thyroid specialist. From my own experience, I started on 10 mg and slowly dropped to 5 mg over the past year. Currently I'm taking even less e.g. alternate days etc but I have never stopped completely before but more of a gradual decrease in dosage. To me, it's to allow my body to adapt and recover more easily...

    Then again, I did not go through any iodine treatment so my situation may be different from yours. I hope you've met a good doctor or specialist who can help you get through this difficult time. All the best! 

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    • Posted

      HI truecolors ????

      I have been recently diagnosed with Graves' disease. I have a script for carbimazole 10mg (and also metoprolol 25 mg) . I'm honestly looking into herbal remedies as I have looked through the ones of forums and everyone is saying they'd gained weight. (I'd much rather take something herbal anyway)

      So When you say the low dosage you have/had, has allowed your body to adapt and recover, what exactly do you mean? Was there weight gain?

      I've lost About 8 kilosshe and am frankly terrified I'll put it back on and be unhappy. I know ts not huge but I was very unhappy beforehand.

      ANY TIPS/recommendations would be greatly appreciated. TIA

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    • Posted

      Hi Salo1,

      I was also diagnosed with Graves, but instead of weight gain I lost a lot of weight (which I thought was the more accurate symptom for Graves) and was stick thin and unhealthy. My metabolic rate was messed up due to the disease and had went up dramatically. I was hungry all the time, ate twice the portion and yet lost everything even my muscles. 

      What I meant by adapting and recovering, is that the body can't go back to normal immediately upon medication as it doesn't work with a snap of the fingers. To be honest, this is based on a friend who studies Medicine (since my doctor didn't share much) - the thyroid needs time to get better so by starting with a high dosage, you might just fix the thyroid temporarily (due to the shock / change in levels) and then it comes back again. The thyroid needs time to adjust and get back its balance.

      Thus from the 10 mg (along with some propranolol to reduce some of the other symptoms), I slowly gained back the weight, and gave my thyroid time to adjust and get back to normal. Of course, I went through blood tests every month and then in a few months  as my condition got better, the dosage was reduced to 5 mg.. (there was once when the result was negative and the doctor recommended back to 10 mg but soon it was down to 5 mg again). After a year of monthly checks and reviews, I was down to 2.5 mg (no longer using propranolol) and now I'm just a few months away from my 1.5 years of medication, it's currently 2.5 mg (half a pill) on alternate days. 

      I did not take any herbal remedies even though I did notice some of the comments in the forum mentioning this. I did however exercise a lot more, of course starting from a slow pace as the heart is very weak (brisk walk but regularly like three times a week) to slow jog, and then I included leisure rock climbing and swimming etc. Now I still exercise about three to four times a week. (Also, I lost a lot of hair during the period but now I can tell the hair fall has decreased a lot and I'm slowly getting back to my normal self)

      This is based on my experience alone, so it would still be good to consult a specialist on your case. But I hope this information help and wish you all the best! Take care. 

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