How have you all found Carbimazole?

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Hi everyone, after a very strange year of feeling unwell and having blood tests i have finally been diagnosed with overactive thyroid! Friday doctor started me on 10mg of Carbimazole i also take 40mg of propranalol as my pulse was over a hundred! I have just felt so ill it seems for so long, when they finally discovered i had an overactive thyroid in October they wanted to wait and do another bloodtest a month later, then my bloods apparently had gone back to normal! So i wasn't treated and got on with my life, i think i felt ok, anyway a few weeks ago started to feel rough again had another bloodtest and i had gone overactive again! I keep forgetting to ask for levels but will get a printout next time!

 So now i am being treated, it seems a very low level but I'm thinking maybe they start you low? Doctor did talk to me about the radio active treatment but i explained not keen on that ( after reading people's stories on here) and would rather start with the Carbimazole apparantly you take it for 18 months then you stop and they see how things are?

  I just wondered what people's experience of this drug were, be grateful for any feedback?

 In advance thank you!

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  • Posted

    I started on 10 mg of Methimazole (same as Carbimazole) in 2007 when I was diagnosed.  Stayed on that dose for 2 years but though my Free's were at a normal value, my TSH would not rise.  So I then took Regular L-Carnitine 3,000 mg daily (after seeing a research article about the benefits of this) as well as 1,000 vitamin D3 and it began to climb a little.  I then experimented with Acetyl-L-Carnitine as well which really helped to raise my TSH into the normal range.  Currently I am on 2.5 mg of Methimazole every other day and take 500 mg of Regular L-carnitine in the off days.  Levels are all normal and in a good place.  That's bull that you have to stop taking Carbimazole after 18 months but if you take the meds with supplements it works better.  The Acetyl-L-Carnitine though is very sensitive and can  send  you hypo very quickly so I don't recommend it unless people have an extremely low TSH for a long period of time.  The regular L-Carnitine is better.
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  • Posted

    Hi thats actually very interesting that your levels spike and even out. I am really hopefull that I may be able to come off or decrease meds at some point. Is Carbimazole comparable to Methimazole. I am still trying to learn all the differences in these medications. When I was in the hospital they had me on what they said was Tapazole, they said it's the generic for Methimazole, but then I read that Tapazole may be better over the Methimazole, when considering liver damange and side effects.

    When I started them I was very itchy maybe 2-3 times a day for 45 min for a bout a week. Very thirsty, awful dry mouth, that has started to subside as well, now that I decreased my dose from 20mg mg 3x a day to 2x a day. My liver & kidney levels are high, so hoping that resolves when decrease meds. The dr has suggested the radio active idodine treatment but very hesitant to even go that route. 

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    • Posted

      Tapazole is a brand name.  Methimazole and Carbimazole are generic meds of Tapazole but it is the same medication.You are on an extremely high dose.  That is why you are itchy.  Usually that is not necessary and lower doses work just as well.  The liver and kidney damage occurs at higher doses.  Others on other thyroid boards have found that lower doses work as well or better.  Also lower doses combined with supplements work extremely well.  A lot of docs are treating by TSH level which they should not.  Most of us have found that docs, even Endocrinologists do not know what they should about this disease and its treatment and that is evidence by the extremely high doses they put people on.  Slow and steady wins this race.
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  • Posted

    Hi, I have the same problem, just found out last month.  I felt breathless, trouble to sleep at night and my hands are shakeing.   I am on carbimzole 60mg a day.  The specialist told me to have blood test every month, see th GP every month and specialist every 3 months.     I had irrigular heart rate last month but it dissppeared after taking Carbimzole.  With Carbimzole, i have itcing skins, still have trouble to sleep, muscle pains.. but at least it controls the overactive Thyroid!

    I am 43, I have high blood pressure for more than 15 years now.   I need to add blockers and extra medicine to thin my blood to prevent stroke/clot. 

    I think the best way is to talk to the specalist to check on your conditions and prepare your list of medicine. 

    Good luck, wish you all the best!  

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    • Posted

      Taking Regular L-Carnitine 3,000 to 4,000 mg a day, vitamin D3 1,000 to 5,000 IU per day and Magnesium 200 mg a day in addition to the methimazole will help a lot with the muscle pain.  When you are running hyper, you lose all these vitamins, minerals and amino acids from your muscles.   You are on an extremely high dose and you will be able to lower it faster if you add the supplements which the docs know nothing about.
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  • Posted

    hi once the drug result comes out and you condition gets better they will reduce your carbimazole ,
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