Havnt been on here for a short while but have been keeping up with people’s experiences. So… I’ve been on carb 20mg for just over 6 weeks and had the blood tests. Here are the results:
Tsh - 0.05 m/Ul - range 0.35 - 5.5 ( unchanged)
Ft4 - 22 pmol - range 9-23 (down from 54)
Ft3 - 7.2 pmol range - 3.5-6.5 (no previous)
I am feeling a lot calmer, and the terrible emotional state, restless legs/arms and nervous stomach in a morning is less but not gone. Was very worried about my mental state as was my family - I pray I never have that again.
However the GP who asked for liver tests said the consultant may take me off carb as my liver enzymes are mildly raised. He said they are raised as if I have a cold. So now I am worried sick again, that I may be taken off meds as at this moment I don’t want the other treatments rai or surgery. My mind can’t cope with this thought at the moment.
Anyone else have experienced this, or any thoughts. My consultant appointment (first) is next Monday.
Thank you xx
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SamB22
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Hello there, I am currently on 40mg carbimazole per day to treat graves disease.I have been on it in various doses since I was diagnosed in 2018.The only problem I've ever had is low white blood count a couple of times and all the endo did was retest a couple of weeks later and it had gone back up.There are a few on here who had problems with carbimazole and they were put on the alternative PTU I think is the name.Try not to worry too much , though I know what it's like being hyper and the last thing you are able to do is not worry.Best wishes to you.
Thank you for replying. That’s good to know about the white blood cell count and them retesting - so still on carb. I always go the worst scenario even before my diagnoses. Hope all goes well for you x
Graves needs to be medicated and if the Carbimazole is upsetting your liver, there is an alternative anti thyroid drug - Propylthiouracil - PTU for short -
as I can't pronounce or spell it easily either :
You will not have to come off the AT drug, but maybe swop to the alternative.
You can't come off the anti thyroid medication and generally speaking the NHS allocate around a 15-18 month period of time on an AT drug before you need to think about anything further and many people will stay on the AT drug longer term as we have discussed before.
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