Coming off 125mcg levothyroxine conpletley

Hi everyone.

A year ago after giving birth I had to go on levothyroxine 125mcg. My thyroid was so low they couldn't get a reading and my tsh was 100.

I just started to feel better and endo has took me completely off meds as I have a suppressed tag of 0.03.

I'm now on day 6 and feel very weak and tired again. My endo recon and it was just an inflamed thyroid due to childbirth but I'm not convinced.

My question is is there side affects of stopping completely? And has anyone recovered completely due to postpartum thyroiditis? How long would it take for hypo symptoms to come back after coming of meds? Endo said 4 weeks. I see him again on the 27th march.

Thanks in advance

28 Replies

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  • I think it's barbaric that your endo has taken you off levo completely, that can't be right, if they were not happy with suppressed Tsh they should have just decreased dose by 25mcg and see how you are on that. They should be testing t4/t3 not just tsh, some of us need suppressed Tsh before we feel well, if it was me I would go back on levo and ask for second opinion, coming off levo all at once could make you very unwell. I'm sure others more knowledgeable than me will be along to advise shortly.

  • Endo said my thyroid was sitting "normal" but suppressed tsh of 0.03. Of course my thyroid would Ben sitting normal when I'm medicated though, that's what I didn't understand. He sent this via letter so never got to ask questions.

    I have another blood test on the 21st and see endo 27th. I just hope I don't go back to how I was before I went on meds. Having 3 kids I can't afford to be that unwell again, at the same time I hope I don't need meds and it has just been due to pregnancy.

    Since stopping, day 2,3 &4 I was very dizzy and sick. Now I'm tired, weak and have aches. Don't know if it's side affects of coming off or if it's hypo returning. Suppose time will tell and maybe that's why he's done it but like you say surely he'd be better to wean me off just in case.

    Thank you for replying xx

  • 1123ayoung Raventhorpe is spot on. What a very stupid and cruel endo you have. If he didn't like your suppressed TSH he should have done F4 and FT3 tests and only if they were over range should he have reduced your dose by 25mcg not stopped your Levo altogether. He should have then retested 6 weeks later to see where your levels lie and make another adjustment if necessary.

    If I were you (and I'm saying this as someone who was diagnosed and started treatment 43 years ago and has been messed about by doctors who didn't know what they were doing, I've learnt it all myself and now do it my way) I would get your own tests done, a full thyroid panel plus vitamins and minerals which are always useful. If you order one today it should arrive Monday or Tuesday, do the test Wednesday and you may have the result by Friday. Then post the results in a new thread and members will comment.

    Medichecks UltraVit is £99 and you can get 15% off at the moment - details here thyroiduk.org.uk/medichecks

    You will learn soon enough that doctors (GP and Endos) in general like to dose by TSH alone. They don't take into account where our FT4 and FT3 lie, and it's those that are important, particularly FT3. And they certainly don't take into account our symptoms or how they affect our lives.

  • Hi, thanks for your advice.

    Do you think feeling dizzy and sick has been side affect to coming off tablets suddenly? Now I'm tired, weak and got aches. I don't know if it's hypo returning or side affects.

    I'm just really scared of going back to how I was.

    I do hope it has been inflamed thyroiditis due to pregnancy but he could have weaned me off slowly. It's all time and money with NHS though.

    He said in letter that my thyroid is normal but of course it will be normal if I'm medicated. His concern was tsh being suppressed 0.03. Do you know what normal range should be?

    I'll look into that link. Thank you x

  • 1123ayoung Ranges differ from lab to lab but a TSH range would be somewhere around 0.2-4.2 or maybe the top end could be a bit higher. Whatever the range, 0.03 would definitely be suppressed.

    It never ceases to amaze me that these so called thyroid experts, the ones who have medical training (!) don't realise that when you give synthetic thyroid hormone for a failing thyroid then your pituitary is satisfied that it can detect thyroid hormone so it doesn't need to send a signal to the thyroid to produce any - which is TSH (Thyroid Stimulating Hormone) so the TSH test will generally show low or even suppressed when on enough Levo.

    What is important, far more important than TSH, are the FT4 and FT3 tests. T4 is a pro hormone, a storage hormone, which converts to T3, the active hormone which every cell in our body needs. So we need to know that there is plenty of both and if the FT4 and FT3 are in the upper part of their ranges, without going over, then we are not over medicated despite what the TSH says. This is what doctors should be measuring and be guided by.

    Your dizziness and nausea could be due to coming off Levo suddenly, but I can't confirm that, we are all different and react differently. I've never come off mine suddenly so have no experience to share.

    Your tiredness, weakness and aches probably are due to no Levo though. Levo has a half life of 6-7 days, so what was in your body a week ago has now halved and undoubtedly you will feel some effects of that. In another week what is left in your body today will have halved again, and so on until there is none left.

    I am not medically trained and I can't tell you what to do. But if it was me, I would do the Medichecks test ASAP, see what the results are, and post for comment. If you TSH has increased and your FT4 and FT3 are low then I would be putting myself back on Levo and then I would gather enough evidence to argue it out with my endo at the next visit.

  • Thank you very much for your knowledge and advice. I really appreciate it.

    Originally I was told my thyroid had packed in as they couldn't get a reading on it at all and I'd be on Medication for the rest of my life and now this.

    I'll definitely speak up at next visit. I'm not well educated on this so I didn't feel confident enough to ask questions and disagree.

    My mum and her mum both have hypothyroidism. Endo knows this too. I see someone different every time I go though and feel I have to tell the same things that they should really already know if they were to take time to read my notes. I go to the royal infirmary in Edinburgh x

  • Does Dr Antony Toft still practise there? He used to work at the Royal Infirmary. He is/was a leading endocrinologist and past president of the British Thyroid Association.

  • No he has his retired. I nevertheless got to see him. I think the clinic has been upside down since he left though or so I'm told. Typical of my luck lol x

  • That never made sense lol. He just retired last year. I never got to see him x

  • It's professor Brian walker now but don't get to see him either. Last person I seen was a dr Scott mackenzie, consultant physician- ??

  • It's OK, I followed :)

    Shame about Dr Toft retiring, he was one of the better endos.

  • When medicated, TSH doesn't matter (as long as it isn't high) as long FT3 and FT4 are in the top quarters of their ranges but not over.

  • I'm on Meds and with a very low Tsh and "normal t3t4"I have symptoms of thyrotoxosis ideal Tsh is around 1 ? I feel it is an important value to read.😎😎😎

  • My TSH never got as high as 1 even when un-medicated with low FT3 and FT4, and full on hypo symptoms, so going by TSH can be very misleading. Really, the old-fashioned "How do you feel?" is probably the best test.

  • I was starting to feel myself again but it's out of my hands until my next bloods. X

  • You need to view 'The thyroid secret' on line. There are lots of free documentaries streaming this week for free. There is lots of information about diet controlling with removal of Gluten etc. I am not a doctor but have suffered for 8years with an underactive thyroid and the help is limited out there. The documentaries are long but full of information. Good Luck

  • I have read it is possible that the thyroid can recover after pregnancy but it seems drastic to stop levo in one go rather than reduce and re test.

  • Yes 80% of woman with propartum thyroiditis recover but I feel I should have been weaned off. It also runs in the family so I'm not convinced I'll be one of the 80% though I hope I am x

  • Could you not wean yourself and cancel the appointment for the end of March and make another one?

    If i'm wrong suggesting this then I'm sorry.

    Jo xx

  • Hi jo.

    I probably should have but I'm now on day 8. I can't see me lasting until the end of march as hypo symptoms slowly returning.

    Xxx

  • Once you are on meds you are on them for life!

  • The endo is saying mines was inflammation of the thyroid gland or so he thinks. So he's took me completely off meds and will see what my results are at the end of this month x

  • I would love to be able to pay for bloods but just can't afford it at this time and moment. Everything you said is spot on and it's made me clearer on what to say at next appointment xx

  • Glynisrose so do you recon that if you've needed meds in the first place then you'll always need them? Wonder why he's took me off? 125 is quite a high dose too.

    Feeling yuk still and praying it's just coming off and not me getting sick again as I was really ill this time last year. Only just started to feel almost "me" again and then this :(

  • I was told the same but the thyroid secret on line says different. I have started the thyroid secret and after eight years on thyroxine I am starting to see my levels drop and my requirements on the meds reduce. Really worth trying to get a copy. Honestly I believed my doctor too. I now know different.

  • I stand by what I said!

  • I would get your antibodies checked as well and make sure you don't have Hashimotos,as far as I know if you do THEN you would be on meds for life. I was diagnosed with hashimotos postpartum and will never be able to not take meds

  • He said he was testing antibodies at last appointment and I'm gathering they were ok as he's now took me of meds. Suppose time will tell. Xx

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