Really hoping for Carbimizole advice before dr's this eve! Please :)

Quick bit of background. I have had graves from 14 yrs old. 95%thyroidectomy 15yrs ago an in remission for 14yrs. Had a baby 8months ago and relapsed hyperactive. 10mg carb 60mg propranolol daily for 6 weeks. Felt fine before diagnosis apart from weight loss. 4 weeks of treatment felt amazing. The last 3 days I have felt unbelievable ill. I honestly feel like I should be in hospital. I can barely get out of bed I'm exhausted and feel like I'm going to collapse. Sick and just feel terrible. Dr checked blood count and it's fine. I see endo next thurs. I'm considering asking tonight to come off and have ptu or I think I'm going to stop carb anyway. I can't cope with feeling this ill and somehow need to look after my baby! Any advice please xx

7 Replies

  • Sounds like so many poor people - on carbimazole (or PTU), and are allowed to drop into hypothyroidism.

    I suspect that your doctor did a TSH which was in range - which they say means you are OK.

    Please get the actual numbers from your recent tests. And remember that if your doctor relied on TSH, it can take weeks for TSH to reflect the fact that your thyroid hormone levels have dropped too far.


  • Sorry I was rushing and I didn't explain the test I had properly. The dr ordered an urgent blood count to check white cells yesterday and that was normal. I've waited 6 weeks for first endo app and no thyroid levels have been checked since my original overactive test. My first endo appointment is Thursday.

    Based on the symptoms. I have also gained a stone after losing 3stone in 6 months. Should I ask to drop Carb dose again? Thank you for such a fast response

  • Glad that was checked - and quite right for that to be done as well.

    I know little about the details of treatment - and have no personal experience. But we keep on seeing hypers who have been dragged under by carbimazole and/or beta blockers.

    If it were me, I'd be wanting to check with doctor and, almost certainly, I think I'd want to drop dose(s).


  • Perhaps you are now overmedicated? I was on 20mg then they whacked me down to 5mg as my levels had gone to within range so quickly. I've managed to avoid beta blockers.

  • Seems that might be it. Only on 10mg which the dr said wouldn't even work but because I'm bf'ing he couldn't give me more.

    I had to take beta blockers because my hr was 140bpm at rest and that was a good day lol

  • Have you been advised to come off the beta blockers? What is your pulse on them? If too low you will feel exhausted etc.

  • Yes I'm slowly stopping them. Halved the dose today. Blood pressure/HR perfect but my results show one level hypo and the other hasn't changed. Sorry not very good with results xx

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