40mg of cabimazole

Posted , 4 users are following.

Hi, i was diagnosed with an over-active thyroid 4 months ago when i was 21 (I'm now 22) and my levels were so off the charts that i got an immediate appointment with the specialist where I live in Portsmouth so i was being treated within a few weeks. I was put on 30mg of cabimazole and 140mg of propranolol per day. I had an xray on my neck for the bulge thing and also an ECG (think thats the right one) which said my heart was beating at 128 bmp. I also lost 3 stone in just under 2 1/2 weeks.

I have had specialist appointments for the last 4 months (complete with blood tests) but in my last appointment (last friday) my T4 (i think) was at 22 which apparently is still apparently too high and so the doctor took me off propranolol and upped my carbimazole to 40mg. He's saying that in the new year, I'm definately looking at radio-iodine or surgery because he doesn't believe it will go away by itself. They still don't know the exact cause but they're leading with Graves Disease.

I was just wondering if anyone else had been on this sort of high dose and if anyone had had surgery or radio-iodine treatment so soon after being diagnosed?

At my first appointment, i was told i wouldn't need any further treatment for 2 years or longer. I'm just kinda worried about it and wanted to hear from anyone who is in the same kinda boat.

Btw, coming off the propranolol was not a wise decision cos all the symptons have come back so I'm going to talk to my doctor about that.

Thanks

xx

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9 Replies

  • Posted

    hi, i too had a very high t4 rading 83 ( normal range 11 - 24) was put on 40mg carbimazole then went under. for the last 10 months since this began i have been over & under & they have now said that my thyroid is hard to control so have been advised to have rai. I am still undecided on this at the moment cos like you i was told it would be at least 18 24 months before they decided whether this was the route to take. elaine.
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  • Posted

    I also have graves disease but i have been lucky enough to have a good endocrinologist who would rather me try ATD'S than the rai or surgery, do not believe this cannot go away with proper treatment ! rai and surgery is a big step to take and no going back after it !

    don't know if i am allowed to post links on here to other sites but im taking the risk as these people know what they are talking about and give great support . i would have been lost without them they are a lovely helpful bunch of people who can help you and make a difference.

    Lorraine

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  • Posted

    hi i too have been on other forums & found them imformative but, a lot seem to be against rai & prefer to stay on medication. This is a personal choice & as you know everyone reacts differently to graves. I for one am not happy about rai but, my thyroid cannot be controlled & being up & down is not a nice experience.I might be lucky & find that when the time comes my thyroid will have sorted itself out but, i doubt it!!!! hope you find the right solution for you take care. Elaine.
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  • Posted

    Hi, I have not long been diagnosed and I'm curious to find out peoples experiences with carbimazol! I too are on 40mg per day and its been 15 days with no real change in symptoms. I was offered beta blockers but didn't want them but may need to go on them. Not very many males like myself get hyperthyroidism and I'm struggling to find many with it. The fatigue, tachcardia, shortness of breath and weight loss (36lb) are big problems for me as I'm used to being active and work long shifts. I'm in my mid thirty's and I feel much older due to this. I was told after 4 weeks they are going to reduce the dose but if its not working at 40mg what chance will I have on a lower dose. Like many others I'm reluctant to go with the radioiodine and thyroidectomy as I don't want to be on thyroid drugs for the rest of my life. Its not an enviable dilemma! Hope you all feel better soon.
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  • Posted

    hi, 15 days is not long enough for carbimazole to kick in. It usually takes around 6 weeks for this to happen as, your body has to get rid of all excess hormones. Iwas on 40mg carbimazole & 80 propanolol at the beginning but, this then sent me under active so thats why they are probarbly going to reduce your meds but insist on blood test first. my hyperthyroidism due to graves unfortunatly cannot be cured with carbimazole i have been on 40mg gradually going down to 5mg but, it wont behave so, i am going to have rai. Iam not 100% happy about this as in around 60% of cases you go under but, all this yo-yoing up & down is not doing my body nor me any good . Also most docs & endos dont reccommend you stay on carbimazole long term due to the side effects.Soon you will notice that your symptoms will start to subside i lost 2 stone in 3 weeks but, have now put the weight back on i no longer have sweats, tremors etc. Everyone is different with graves my main problem was aches & pains but, since i am now slightly under they have gone for now. I know a lot of people are against rai but, if your thyroid cannot be controlled then you have to decide for yourself whether you have it or not.Hope you start to feel better soon. Elaine.
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  • Posted

    hi again, forgot to add that a lot of people say they dont want rai as you go under & then need to take thyroxine for life but, if your thyroid cannot if stay hyper you have to take meds for life anyway!!!!
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  • Posted

    Hey Timbo,

    I am male and 56. A little older than you but have gone through all the same symtoms since May this year. I was very active and strong before the thyroid started going crazy. Get yourself on the beta blockers quick. They will slow down your heart and stop all that anxiety. My 'migraine' type headaches also went away and all in all with the carbimazole I now feel about 90 percent of how I was before the Graves. Not perfect but a real improvement and it enables you to do almost everything you used to. My main complaint is lack of my previous strength. All my muscle disappeared overnight. The beta blockers will also stop you worrying about it all the time as I know it is hard to ignore your heart beating like a drum all the time. Good luck mate.

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  • Posted

    My name is vina am 26yrs waz losing weight so much dat I went from a size 14 to a size 10 and was having papitation so I went to hospital and was dignosed hyperthyroidism april 2011 and was place on cabimazole for 12months now, I have had great changing like regain my weight & feeling stronger but lately I just noticed am adding weight everyday dat I have gone back to size 14 and almost size 16 nw ,I also feel am losing strength again, have gone back for anoda test and the found out my T3 is normal my T4 is lower than the normal range and my TSH is very high, am so confuse, don't know what is happening, plz can someone help me and explain what am in to now or what am going to do, thanks
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  • Posted

    Hiya,

    I had an overactive thyroid for a long time firstly being diagnosed at 14years old...and was kept in 20mg of carbmiozole, it sorted itself out and they stopped medication...but now am 19 and got rediagnosed and now on 40mg a day but due to extreme anxiety and symptoms am being dropped down to 20mg, seeing hospital FINALLY on thursday to talk about it all but i will ask them if they think it will keep reoccuring through my lfie because if that is the case i will ask for other methods like surgery x

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