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Autoimmune disease

GP stopped my carbimazole

1 reply

Swanhilde · 02/05/2023 17:50

Hello - am after some reassurance I guess until I see my GP tomorrow.

I have Graves disease and have been on carbimazole for 2 years. I am/was on 5mg per day and Endo was hoping to stop in July.

Anyway, I've been feeling off for about 6 weeks. Had TSH and T4 checked and they were within range. GP then does a full blood count and my white blood cells are 3.49 (lowest range is 4). He tells me to stop carbimazole immediately and redoes my bloods. This was last Friday. No results through yet due to bank holiday.

I'm still feeling rubbish - exhaustion, tight chest, palpitations, weak, achy legs - and am now also anxious about what the lack of carbimazole is doing to my TSH levels ...

Can anyone share their experiences? I have another GP appointment tomorrow afternoon.


OP posts:
Swanhilde · 16/05/2023 13:34

For anyone coming across this thread I thought I would update it to say that I had a repeat blood test done 2 weeks after stopping the carbimazole. My white cell count had returned to normal but my TSH was 0.55 (bottom of the range).

My Endo reviewed all the test results and put me back on daily 5mg of carbimazole to be reviewed in Sept. Interestingly he told me that it's the neutrophil count that can be affected by the carbimazole and not the monocytes, as in my case. Monocytes are affected by infection.

Anyway I am still undergoing more tests with the GP but it seems that my Graves is not the root of my symptoms this time.

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