Hyperthyroidism - Carbimazole

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I was diagnosed with an overactive thyroid after a routine blood test although my mom and her mom both suffer(ed) with the condition.

Treatment has changed since my mom was diagnosed as she went down the radioiodine route but I have been put on 5mg Carbimazole daily.

I have been taking this for 3 weeks now and have felt no difference with my symptoms (heart rate, breathlessness, etc)

I was just wondering if anyone else was put on a low dose at first and why the reason would be for this? And what dose did you eventually end up on permanently?

I know everyone if different but people seem to have been put on a much higher dose than 5mg and I am starting to wonder if I am ever going to get rid of the symptoms of this condition!

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10 Replies

  • Posted

    Hi

    I was put on a very low dose to start with I think it depends on your blood results, health and other medication.

    at one point they gave me too much and that is as bad as not having enough.

    When you go back to see the GP you will have to tell him you still got symptoms he will probably want more bloods as well.

    It would seem we all respond differently to medication. Take your time it will get sorted.

    Lizzy

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  • Posted

    Thanks for the reply.

    Yeah I had to have another blood test a couple of days ago & I have to take the results to the hospital next week to the specialist so I guess they will up my medication if my levels are still too high.

    Also, just wondered how long did it take for your symptoms to go away?

    I just seem to have gained a couple of side effects from the carbimazole, the main one being really itchy skin on my legs!!!

    Hollie

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  • Posted

    Hi,

    I was diagnosed 8 weeks ago with overactive thyroid. (Read my story under Hyperthyroidism forum). I was allergic to carbimazole and had red itchy wheals all over my body! egs were the worse though. Have today been taken off PCU (diff thyroid tablet) because allergic to this too! Have got really itchy legs, feet and arms! Am going mad with scratching but just read an article on one of the forums about washing with Head and Shoulders - so have just had a bath and used that. Will try anything! Was referred to a Dermatologist who confirmed I had a drug allergy but initially thought it was the beta blockers. So am off those too.

    Am seeing consultant again on 21st. I think he might suggest iodine treatment.

    Take care. But it's not fun is it?!

    Kay

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  • Posted

    I have just been diagnosed 3 weeks ago and was given propranalol immeadiatley to stop me shaking and slow my heart down. I have been given 40mg of carbimazole to take when I saw the consultant on Tuesday this week. I think they said my levels were very high. After readimg a lot of the posts on this site I am dreading to see what is going to happen! I thought that the medication would stop all the symptoms. I have been really itching since before Christmas, shaking like I had Parkinsons disease, been really hot, legs feel like lead and I can only just get up the stairs. I work with children and often squat down to talk to them but now can't get up again. I am covered in a rash on my face and chest mainly. When out walkinh my legs are like jelly and I fear I am going to fall. Does the tablet not help with any of this?
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    • Posted

      Hi i had the same like you very high results Gp said he has never seen levels as high and staight on 40 mg carbomisole. Had itching at first than developed extreame joint pain and even the ribs cage heart, but stack to treatment- all this sides lasted 4 months. Exoustion shaking and some other symptoms stayed with me for longer. heart rate went down quiet quickly about 5 weeks. my treatment was sucessful but even when it finished i still had tightnes in my throut often and my fitness was far from before illnes.

      I would keep chin up stick with treatment make sure you get regular blod tests and hope for happy ending. The statistics rate of sucess with this treatment are quiet high -about 80%.

      In first few months your body is in shock from carbomisole, so will need time to adjust.

      Also as much as its tempting a grass of wine when you feel like this i would advice not to have any alcohol at all- the joint pain was results of this, and i only had 1grass of wine twice or three time a week.

      Good luck

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  • Posted

    Hello HollieAmber89,

    I have also recently been diagnosed with Hyperthyroid and prescribed Carbimazole 5mg only. Like you it has been 3 weeks and I have not noticed any difference. I had lost 5 kgs before I started treatment and instead of starting to gain my weight back I have lost another 1 kg. My next specialist appointment is 2 months away. I am interested to know how you progressed with your treatment. Was your dosage increased or did you eventually start to see progress with the low dose of 5mg?

    thank you

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  • Posted

    Yeah it has to do with your levels! I'm on 40mg daily and though the side effects suck, I'm not experiencing any Hyper symptoms.
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  • Posted

    I have now had over active thyroid twice (diagnosed with Graves) and both times I am given 20mg to 'attack' the problem (I have horrendous symptoms initially - very extreme) then am slowly brought down to 5mg even when symptoms are gone (blood tests every 6 weeks) and I feel well again. Then I continue the Carbimozole for the remainder of the 2 years and then have a blood test every 6 months or if symptoms re-appear. I cannot have radio-active iodine as I have young children and removal is not really an option for me as I use my voice for my job. I hate taking carbimozole, and am desperate to treat this naturally, and with diet/stress control etc, but the 2nd attack (2 years after being discharged) was horrendous and really scary. If your symptoms are still there I would say your dosage is too low. Definitely see a thyroid (endocrine) specialist, not just a GP/doctor about this. I really hope you're feeling better HollieAmber89 - i believe I got Graves after a really rough pregnancy & bad aftercare - I was so ill and stressed & had untreated anaemia. Before pregnancy I was super fit and healthy!

    Good luck

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    • Posted

      Hi Hollieamber89

      I had Graves after my son was bourn and just a question: have you got pregnant after your treatment? And if yes how did the pregnancy go if you dont mind me asking, please?

      I got pregnant twice after mine first wasnt sucessful due to brousing around baby, i am pregnant now had same beguining to pregnancy but so far i am 26 weeks amd clot is gone. Reason im asking becouse they did some more indepth tests for antybodies and it show high, but all my T3and T4 are fine. I have to have baby heart monitored every 2 weeks. I am realy intreede whats in for me in this aspect.

      TIA

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  • Posted

    Hi i also was recently diagnosed with the condition  6 weeks ago and was put on 5mg Carbimazole daily, at first i thought i was feeling better, but recently i feel I have gone back to square one.

    My endo did suggest that I up my dosage to 10mg but he said my two blood test showed that my levels are going down ( was not told what they are) so i can keep  on the  5mg  until my next blood test.

     I do wonder if i had 10mg daily i would have starting to feel better, like you i wonder when i will feel like my old self again.

    i so hope you feel better very soon. x

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