Those on antenance dose of carbimazole - question

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I am meant to be on 5mg of carbimazole a day now since my levels are all within normal range (but very close to hypo). I am due for more blood tests on 13th October. I decided to cut my dose to 2.5mg off my own back as was starting to feel more hypo and since doing that 3 weeks ago I have felt back to my old self apart from having lost the fitness I once had, but I'm getting there. So 2.5mg of carbimazole a day really suits me. However, I have a question for those of you on a low maintenance dose of carb. Do you feel it the next day if you forget to take your dose? I have forgotten twice and each time the following day I feel nauseous and my limbs feel fatigued. Surely it can't be because I missed one day of 2.5mg? I only noticed I'd forgotten when I started to feel like this and then checked my pill box to see I'd forgotten my dose yesterday. Then I remembered the same thing happened a couple of weeks ago. But surely I can't be that sensitive to missing such a small dose.

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  • Posted

    Sorry, my browser seems to be dropping letters again. The title should read 'Those on maintenance dose of carbimazole - question'.

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  • Posted

    Yes.  I was on 2.5 mg every other day and felt return of symptoms.  So I now make it 2.5 mg 4 days a week and I am fine.  My levels were all good, even Free T3 and Free T4 rose to middle of range, better than hypo.
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    • Posted

      Definitely. I had horrible symptoms when I was borderline hypo and even when in the low but normal range. My teeth all really hurt and my tongue swelled up. Cutting to 2.5mg has stopped all that so I can't wait to find out what my levels are now. I will also let my doctor know that I have cut my dose and feel so much better. I just found it hard to believe that missing just one day could bring on my nausea and fatigue. My endo did tell me I was very sensitive to carbimazole as my levels started at 47 and came crashing down so fast.

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  • Posted

    I'm going to follow this thread closely, as I'm about to do the same. My last blood test results showed a significant rise in TSH but FT4 nearly within range and FT3 normal. My GP recommended stopping Carbimazole entirely and taking Thyroid replacement instead. After a relapse in 2015 after being in remission for 9 months, I think tapering might be more successful for me than stopping. Small oses can be very effective (so I've read) in keeping levels stable.

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    • Posted

      I think it's important for patients to take control of their own treatment, and agree that you should taper rather than just stop. My doctor and endo were both happy for me to listen to what my body was telling me and adjust my dose accordingly so long as it wasn't radically different to what they prescribed. Everyone is different and so patient input is so important. They expect us to go weeks and then months between blood tests and so self monitoring plays a big part in keeping us well.

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  • Posted

    Yes I feel different when missing one dose.  Im was on 5mg every other day.  then now im hypo... ask endo to taper it down. 2.5mg every other day.  but dr wanted decrease slower.  past: 5x4=20mgperweek, wanted 10mg per week, now endo wanted 15mgper week... and get lab in a month
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    • Posted

      I hope the taper suits you. It's no fun being hypo, but the docs don't seem bothered. I think they prefer to keep you a little bit hypo than risk you going hyper. I hate the waiting between blood results.

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  • Posted

    I'm on a smaller dose, but I do notice some leg weakness as well. I think it's only fair to say that I'm overdue for blood work so who knows what will come of that. Maybe one of those daily pill holders that last for a week would help. I certainly couldn't do without mine.

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    • Posted

      I have a pill organiser with daily compartments but I still manage to miss doses if I have a very busy day. I felt the nausea and the leg weakness and then checked, and sure enough I hadn't taken yesterday's pill. I did it last Wednesday too. I must try harder!

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