How long does it take for symptoms of hypo to go away when stopping Carbi?

Hello,

I'm on Carbi with symptoms of hypo since early March - 7 months of treatment at that time.

My endo cut my dose to 2.5mg - 1 tablet every 2 days - at the end of March and my symptoms improved in April. Then, no improvement anymore: fatigue, dry skin and mouth, muscle pain, water retention, weight gain.

So my endo cut again to 1 tablet every 3 days, no improvement at all after 3 weeks of this regime.

I had a blood test done in the evening last Monday which doesn't show I'm in hypo:

TSH: 1.5

T4: 14 (9-19)

Nevertheless, based on my symptoms, he cut to 1 carbi per week last week. Then again, no improvement.

How long does it take to get rid of hypo symptoms with Graves when Carbi is decrease to such a low dose?

Thanks! Take care.

5 Replies

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  • I was treated with block and replace so I don't know much about being hypo and being treated with carb only.

    I ended up massively hypo after three months on 40mcg carb - that was just before I was started on the thyroxine part of the treatment. After that I found that every time I needed an increase in Levo I got symptoms again.

    I did find that even once I was back to normal and stopped the block and replace treatment it took quite a while before my body felt 'normal'. I came to the conclusion it was because my body had been 'abnormal' for so long it didn't know what normal was. I've been in remission for three years now and (touch wood) I feel fine.

    Your results are very similar to what mine were when I was discharged (TSH. 1.5 (0.35-5.5) FT4 15.4. (10.00-19.8) )

    I have to say I felt better with a TSH below 1 but my medical team were all more than happy if I was 'within the range' - how I hate that expression. I have gradually realised that there is no place for 'fine tuning' in the NHS - if you are within the lab ranges then you are well, doesn't matter if you feel better at one end of the range than you do at the other - you're well, go away.

    Good luck, hopefully someone who has been treated with carbimazole only will come along and advise.

  • When I was titrating Carbimazole, I got down to 2.5mg every other day and my Endo told me it wouldn't be doing anything and I may as well stop the Carbimazole at that point.

    Your T4 looks quite low, I was quite well when mine was around 16, my TSH was also lower than yours.

  • Thanks for your answers. My TSH was at 1.2 with Carbimazole every 2 days and I was feeling fine. But then I developed hypo symptoms again. So we cut at 1 tablet every 3 days. After 3 weeks, I did this blood test late in the evening. And the endo told me to cut to 1 Carbimazole per week as my antibodies have been in range for a while.

    My normal TSH is around 1 and my normal T4 are usually a little higher.

    I have gained 7 pounds since my antibodies are in range when only 2 during the first 7 months of treatment.

    It's a relapse. I always react very well to Carbimazole but this time the hypo symptoms are a nightmare. I haven't been able to work or live normally for 4 months.

    I'm not with the NHS anymore. I went private in March as my endo had planned to leave me hypo with 5mg early March with a new blood test and appointment early June. The NHS in Kent is very poor, they don't even test antibodies or kidney and liver function. Just TSH, T4 and T3 every 3 months.

    I had to have most of my blood test private as my TSH reappeared after 2 months of treatment and they missed it. I left it reappeared as it's a relapse and had a private blood test to confirm.

  • Your blood test should really have been done in the morning, as TSH is at its highest then.

    Personally, I would come off the Carb altogether and have an early morning test done in 6 weeks.

  • I agree Silver. I'm on sick leave but when I work, I sleep in the morning as I work very late, until 2-3am. All my blood tests have always been done late afternoon since 2012. The endo suggested to keep the same pattern.

    The plan of my endo is to keep me on infrequent dose of Carbi to avoid a relapse.

    I'm a strange case since my first lapse: in September 2013, I was declared cured after 10 months of Carbi, including from my Graves as my antibodies were negative.

    My relapse was very strange: at the end of April 2015, my results were normal including the antibodies, 6 weeks later, I was hyper with positive antibodies and symptoms.

    I guess everybody is different but my endo is very surprised to see me with hypo symptoms on less than 2.5mg.

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