Coming off Meds

Hi all,

I'm sure I will have to ask more about this when the time comes!

I am due to come off my medicine in May this year. (Block and replace - 2 x 20mg Carb and 50mg thyroxine p/day), I have Hashi's antibodies.

Does there need to be a period preceding this where blood tests show I am ready to be titrated down? None of my TFT's reflect this. I am waiting on the results of another at the moment.

Thank you!

9 Replies

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  • When I stopped my block and replace in 2013 my bloods were TSH - 0.56 (0.35-5.5)

    FT4 - 17.4 (10 -19.8) I was taking 40mcg carbimazole a day and a

    Ternate get between 75/100mcg a day of levothyroxine.

    I wasn't tired down - I saw the endo one day and stopped everything the next. I have to say it felt quite strange - nothing happened though and I've been in remission ever since.

  • Fruitandnutcase, that's so amazing! Massive congrats and warm wishes to you on being in remission, something I have been dreaming of since the day I was diagnosed.

    I got the feeling that this is the way the endo wanted to do it, although I don't have appointment with him when I'm due to stop - until the following September, 4 months later! I'm not really sure what to expect in terms of coming off. I will be happy not to be medicating myself every day, but also a bit uncomfortable without the 'safety blanket'.

    I read somewhere that a thyroid storm can occur when abruptly stopping meds, would this be true?

  • Sorry fruitandnutcase, I just remembered I have already spoken to and congratulated you on your remission - thyroid brain 😏

  • So that sounds like he has just told you to 'stop in May' - without seeing you or seeing what your bloods are like first? I can see why you feel insecure and I'm not surprised you feel a bit funny about it.

    It felt really strange the day I stopped, after all to been held together for the best part of a year with carb and Levo, then waken up one morning and just not take it - I spent a lot of time waiting to see and wondering what would happen but in actual fact nothing happened.

    I probably said earlier that after a month I began to worry about relapsing and having to have rai so I spoke to my GP and once I had got that sorted out then just got on wth life. To be honest I forget now that I'm in remission.

    My TSH has gradually crept up from what it was when I stopped the meds - my last NHS blood test - in October 2014 - somehow or another I was missed off the final visit schedule and it was almost a year after stopping the B&R that I turned up to be discharged - it didn't half confuse the little registrar chap I saw, he was very young, oriental and I think new because he went off to speak to my consultant before he made his decision which I thought was a bit odd.

    I think the notes on the rai discussion I had wth my GP must have been on my case notes (they file share) because he didn't mention rai at all - maybe that was what he went to speak t the big chief about LOL. Anyway at that visit my results were TSH. 1.5 (0.35-5.5) FT4 15.4. (10.00-19.8) so it had risen quite a bit.

    I'm not sure about thyroid storm - you could always post a new question asking about that and see if anyone has had that problem - but if you do start to feel odd in any way you know what it is and can take action right away. :)

  • That's very true, Fruitandnutcase. Yes, I think he just wants me to stop one day and see how I feel. I will however be booking myself in for my bloods before I do that.

    I'm very glad that nothing happened as you went along. I can just imagine myself obsessing over it when the time comes, which has been something that has come about since being diagnosed (obsessing).

    Did you take any vitamin C while on Carb?

  • I took 1000mcg slow release with zinc. The pharmacist told me to take the vit c when I started the carb. The zinc just happened to be in wth it. I kept taking vit c until very recently - I wondered if that could be contributing to my high ferritin but it probably isn't.

    I decided that worry is bad for Graves people and if I was going to be worried about the possibility of relapsing and having to fight off rai then I would make my position clear right away and get on with life without the worry.

  • Sorry for another question ☺️ But did you find that did actually help to ward off bugs, viruses etc going around?

    I used to take Echinacea during virus season but with my Hashimoto's I can't tolerate it anymore.

    No one but the pharmacists have scared me witless re the possible serious complications of Carb. Every time I pick my prescription up he tells me to go to the emergency department immediately if I get a sore throat! I realise the scenario would be very serious but my endo is so relaxed about it.

  • I found I was incredibly healthy, funnily enough I realised I hadn't had colds, bugs or that sort of thing for years - the first bug I have had in years I picked up was just before Christmas after I stopped taking the vit C so I would say it definitely helped keep me healthy.

    When I started on carb the pharmacist made came out and told me what to look out for and made sure I had and understood the leaflet that came with it plus I got a new leaflet every time I got a repeat prescription.

    He wasn't scary though, the endos were probably worse with all the 'rai instead of continuing with carb should I relapse' I was quite happy and felt really healthy on it.

  • Right, definitely need to pick up some

    vit C. That's great you felt healthy on it.

    To be honest I felt a lot better on just Carb alone; it was with the introduction of Levo that I started to slowly feel terrible. Infact I don't even remember feeling this bad before I was diagnosed. Maybe that's just the progressive nature of it.

    Thanks so much for all your help, fruitandnutcase. I hope you continue to feel good 😊

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