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  3. Hyperthyroidism and Grave's Disease

RAI or Carbimazole?

  1. Hi everyone!

    I can't believe my luck in stumbling on this conversation. I've read it all (going back one year) and I'm encouraged at the reecovery everyone seems to have made.

    I was diagnosed hyperthyroid in June after an agonising six month ordeal. Placed on carbimazole 40mg and propanolol 40mg o/d right away. Four months later I still feel weak, agitated and nervous although I have put on half a stone and my energy levels are somewhat higher. The doctors at endo say I may need to continue this medication (which I hate) for another year at least. My recent bloods came back yesterday with FT4 66 and T3 33. I'm likely to have a choice og RAI in a month or so.

    I know you are not doctors but from the benefit of your experience, is it worth going through the RAI therapy? Shouldnt I just stick to the year long carbimazole instead... (BTW I'm 37/M/London)

  2. Hi Frank, I was diagnosed with graves nearly 2 years ago. I had rai feb this year as my thyroid couldnt be controlled. Your t4 is still high ideally this should be around 11-24 depending which part of the country your from. This is a brilliant site i dont know what i would have done without everyones support & advice. Keep us informed. Elaine.

  3. Hello Frank. I am not trying to put you off having RAI because it is a very individual thing and down to personal choice / circumstances. I was diagnosed with Graves 2 and a bit years ago and had RAI in Nov 2008 once I had become euthyroid on carbimazole. My endo said there was next to no chance of me ever achieving remission so I went for it. Despite having a mega dose (same as Elaine who has already replied) it did not work for me. I am continuing on 5mg carbimazole and I am feeling well. Now, my Endo is happy to leave me on this dose of carbimazole for the rest of my days if I want although I have to say that his view on long term use of carbimazole is not a popoular one. (This guy saved my life way back when I was in thyroid storm so I trust him 100% ) Alternatively I can have a 2nd blast of RAI (50% chance of it working 2 time around) or surgery. Generally speaking RAI will work (ie: you will become euthyroid or hypo) for 90% of patients, I just happened to be one of the other 10%!

    Arm yourself with as much info as you can to enable you to make the choice. You are still very hyper so you will have a wee while to go yet before you need to commit to a decision. My endo at hospital gave me loads of very good leaflets and copies of medical journal articles to help me decide - maybe your medics have similar material?

    When you say you hate carbimazole is this because you are worried about the white blood cell situation and your immune system or is it because you are having adverse reactions to it?

    Let us know how it goes and take care of yourself.

    Lotte.

  4. Hi, I agree Lotte. I think a lot of endos push you into rai telling you all your problems will be over!!!!! Whilst im glad i had rai i wish i was given more advice, like you i was told that in 90% of cases you will go hypo.What i dont understand is that i was told by endo last week that rai had worked (for the time being)so why am i on such a low dose of thyroxine? I was on 50 mg now only 25 i thought you went up not down!!!!!!!!!!!!!! Maybe someone will be able to tell me. Im glad that you are well & have such a good endo most wouldnt let you be on carbs for life. Well have to get bloods done in a couple of weeks so, will find out then if the lower dose has worked. Apparantly my tsh is too low 0.013 & should be around 1? t4 is 18 so thats ok yippeeee lol. Well take care how is everyone else doing? Elaine.

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