Feeling Frustrated!

I was diagnosed with Graves Disease 2 months ago.

TSH <0.01

FT4 29 (12 - 22)

FT3 11(3.2 - 6.8)

Antibodies 181 (10 - 50)

I was put on 30mg of Carbimazole. After 6 weeks got re tested for FT4 only which has now gone down to 10! I knew something was wrong because I started not being able to get out of bed and was getting really emotional again (like I did at the start). My medication has now been reduced to 20 mg but nearly 2 weeks later I'm still having days when I can't get out of bed (like today). I'm not due to be tested for another 4 weeks. Just wondering how often everyone gets tested ? Is it not better to be tested sooner so that your body doesn't yo-yo so much?

4 Replies

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  • Hi, I'm a noob here, started carbi a couple of weeks ago. My understanding is that any dose changes will take at least a couple of weeks to make a difference to your levels due to the way it works. I'm sure someone on here with more experience/understanding will be able to confirm/deny this though.

  • I have been on Carbimazole for 2 years. I am tested every about every 8 weeks. But early on, I was tested after 5 weeks of starting on 40mg for one month and then down to 20mg. My initial bloods were:

    TSH <0.1

    T4 59.0

    T3 19.1

    I have been told that the normal range for T4 is (10-19), so you are borderline hypo. You could phone up your consultant or one of the endocrine nurses in the department and ask for guidance as to whether to drop your medication down further. I have discovered that dosing carbimazole it is all a bit of guess work and that the consultant/nurses are willing to listen your suggestions.

  • Thanks for your reply. I was feeling so awful 2 weeks later that I took another test (as I had a spare form) and my FT4 had gone down to 6! So I phoned my consultant but she was on holiday so another consultant phoned me back that night and told me to immediately come off carbimazole for 1 week and get re tested. I had my blood test yesterday so will get results tomorrow and go from there. I feel so much better now I'm off them!

  • Good to hear you are feeling better. Hopefully that hypo episode will have switched on your TSH, as mine took 15 months to switch on! Good luck with the bloods.

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