From overactive to slightly underactive

Hello again,

This is my 2nd post!

I was diagnosed with graves and hyperthyroid earlier this year. since then i have been on carbimazole mostly and a short period on PTU.

I had severe joint pain and itching with the initial does of carbi and was put on ptu but that made it even worse so switched back to carbi at a reduced dose. of 20mg per day which i have been on since about June. For the last 4 weeks i have put on weight and alot of my hair has fallen out all of a sudden and the past two weeks i have been feeling abnormally cold.... which I've not been used to at all since being hyper and having graves!

Two blood tests (hospital lost the first one!) later I am at the lower end of normal and advised that I should reduce the carbi to 10mg a day.

Does this sound ok? I have never actually seen the figures from the blood tests and tbh I don't think I'd know what to make of them?

Since reducing my dose (on 20mg pill every other day as had just bought a whole new pot) will I be ok doing this until I need new lot of pills?

sorry for the random post! just had a few questions!

5 Replies

  • When i was on carbimazole i stopped losing weight but didn`t gain any for a while, then went from overactive to underactive and piled on loads of weight and felt really bad, never had hair loss though. when i next went to see my specialist he told me i had been on them far to long as they are a temporary bridge and an alternative treatment should have been offered to me sooner, i agreed to radioiodine treatment which would put me on thyroxine for life but i really didn`t care i just wanted to feel better than i did at that time, after treatment it balanced my fluctuating weight problem eventually but the tiredness and fatigue is still with me some days are more difficult than others and doctors are pretty useless when you try to get them to understand the day to day struggles. so i would say to you don`t linger on them for to long, in the short term carbimazole was a help but will bite you in the backside if left on them to long, get to see your specialist and tell them you want options. I got to the point i said i feel like an 80 year old (i was 38 at the time) and begged him to give me a life back . I was sleeping all the time and never had any energy all i could manage was fight the world for an hour and then sleep the other 23!! sounds like you have gone underactive with the weight gain.

  • I strted on 20mcg for four weeks, nothing much happened so my endo wrote and said to double the dose. I took 40mcg a day for the next two months and ended up pretty hypo. It was time to add in the thyroxine ad part of the block and replace treatment - I was told to stop the carb fir 'a few days' - I stopped it for about four or five.

    My hair fell out like mad and next time I saw an endo she said it was because my body had lurched from hyper TSH <0.003 to nearly 7 in such a short time. Eventually once my levels were sorted out it stopped falling out but it was something that really upset me, it was like the straw that broke the came.'s back for me.

    You need to ask for your test results at every visit. I always took a notebook with me. I had headings for each test I had or was wanting to have done and their ranges so that I could just jot them down quickly while I was with the endo. I also got print outs from my GP.

    I also used my notebook to write down any questions I wanted to ask and also a quick note on how I had been feeling throughout my treatment especially when my drugs were changed.

    They didn't seem to mind me and my notebook and were always ok about telling me my results. I suppose it would be difficult to refuse to tell me my results when I was sitting there notebook and pen in hand. It also shows you mean business and aren't going to be fobbed off.

  • It is preferable if you get hold of 5 mg tablets and take 2 x 5 mg per day. Your thyroid levels would fluctuate less then.

  • I am intolerant to maize and so refused the carbimazole tablets.

  • I used to cut mine in half, they cut easily

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