Changing from NDT back to Levo

Hi, I have been taking NDT (bought online) for the past few months. I swapped out of desperation as my GP was telling to reduce my Levo dose based on blood results, yet I was more and more clinically hypothyroid! Since the swap I have felt much better and despite my TSH still being too low, my T4 levels are bang in the middle of the range. However, I asked my GP to refer me to a different endo (my local one was rubbish), and this endo has said that she won't see me if I want to stay on NDT, but she is happy to prescribe other meds alongside Levo. I am happy to try this, but I now need to either buy more NDT (I will run out before I see the endo), or swap back to Levo now. Has anyone else done this? How did you do it? How did you feel? Any advice/comments would be very welcome. Thanks

20 Replies

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  • TSH does not matter when taking any form of T3 - including NDT - except if it goes high. It is FT3 you need to monitor, not FT4. How do you feel on the NDT? If you feel well, then why would you change back to levo just to please an endo? Do you really need an endo - what do you think they are doing for you?

    At the end of the day it is your body and your health and you need to do what is right for you, not what path the medical profession try to put you on,

    Gillian xx

  • Hi Gillian

    Thanks for your reply. I do understand what you are saying about swapping back to Levo if I am 'well' on NDT. However, I do want a thorough assessment by an endo - I was diagnosed 33 years ago, I do not know if it is Hashi's or another issue causing my hypothyroidism. I also have fibromyalgia which can be linked with hypothyroidism. Now I have turned 50 I feel that I need to take control of my health rather than it control me! I very recently had my non-functioning and problematic gastric band removed and I now want some answers with regards to my hypothyroidism - hence the request to see an endo. I have never been happy buying my NDT online from Thailand. So would rather take prescribed meds that are regulated. But having said all of this, I would take NDT again if I find that I am better suited to it.

    I'm hoping that someone can advise me on swapping from NDT back to Levo.

    Steph x

  • Hi Steph,

    I hope you get what you are seeking from an endo - however the experience of many people in this forum says that you should be prepared that they may not live up to your expectations and that you may be quite disappointed. As for the cause of your hypo, the NHS doesn't seem to test very often for that as it doesn't change their treatment. SO good luck with your quest.

    Gillian xx

  • Hi Steph. I was diagnosed 25 years ago with HypoT, though I did see a specialist 10 years before that, and was told was something/wasn't anything. Never knew if it was Hashi's? I was stuck on various doses for T4 for 20+ years, kept saying it was not doing anything, kept getting fobbed off with 'life' excuses, 'working full time', 'kids', 'working with kids' etc...etc, till eventually they tried to tell me, in my late 40's that it was my age! I did point out that theses symptoms had been there all along and it was not my age 30 years ago... Cutting an even longer story shorter, I pushed to see a specialist. Following further side stepping, did get to an Endo. GP had just done Cortisol test - told me 'normal' Endo said was 'borderline' and retested, came back ok. Put me on mix of T4/T3 - helped, felt better than had done for years. But not 'Optimal'. Then 18mths later (following swine flu) things dived again. Through out the whole of this 30yrs I had developed migraines, increasingly more frequent, and sever fibromyalgia. Lost faith in the Endo when stared treating me from the 'paper'. He sent me to psychoanalyst. Who (TG) agreed with me - condition medical. But I did not go back to Endo - trust had gone. At that point I made an appointment to see Dr P. (I had had to give up my job (teaching) at this point as so wiped out, panic attacks and other signs of adrenals struggling) Saw osteopath, who told me she thought it was my 'secondary nervous system' i.e. my adrenals. Saw Dr P who confirmed this. If adrenals not working properly will struggle to get thyroid working - adrenals, I believe, impact on conversion and uptake of hormones/meds. Dr P did say, re adrenal tests, that if they were low at some point, will be low at others. Hence should not be ignored. If you are seeing an Endo you might want to make sure you get adrenals checked out too. But as others say, don't pin all your hopes on them. Yes it may be useful to get the levels, make sure you get copies. GP's and Endo's probably won't acknowledge adrenal deficiency unless you are actually at deaths door. But it does have massive impact on thyroid function, and optimal use of medications/supplements.

  • Thank you. Some helpful advice. I am planning on asking about getting my adrenal function checked too, want to be sure that all is ok.

  • It is worth pushing for it, but official practice not always helpful for those of us in a lesser state of deficiency, no matter how debilitating it is for us.

  • Maybe unrelated, but I switched back from NDT to levo about eight years ago, after a doctor told me that NDT should be avoided by people with Hashimoto's disease as NDT tends to trigger the autoimmune response...I went back on NDT in late 2011, and have been on it since. I feel much better on NDT than on levo or even synthetic combination drug Novothyral which I tried for a short period of time...my energy levels seem more steady on NDT, compared to synthetic drugs, especially synthetic T3.

    I am seeing a so called Hertoghe doctor in Belgium who could not care less about my TSH, but both my family doctor and OB-Gyn are both freaking out about my suppressed TSH (both ask for a thyroid panel to be included in annual check-up), and want me back on levo asap. As others have pointed out, TSH is useless when on T3/NDT; you need to monitor your FT3 levels, and even FT4 levels are less relevant if your FT3 levels are good.

  • Hi, thanks for your reply. Can you remember how you switched back to the Levo?

    X

  • Frustratedmum,

    If you want to switch back to Levothyroxine just resume the dose you were previously taking tomorrow. There's no need to wean or taper off NDT.

  • Hi Clutter,

    if someone changed back to levo. the day after stopping NDT. would they have a return of hypo. symptoms as if would take 4 - 6 weeks for the levo. to build up.

  • Lucylocks,

    Not necessarily but they may well do so if they are poor T4 to T3 converters. NDT has T4 in it so Frustratedmum isn't building up T4 from scratch.

  • I see thank you.

  • Yes, I just stopped NDT one day and went back to my previous dose of levo (200 mcg daily) the next. Maybe not recommended, but it worked for me...I think it's more difficult going in the other direction; that is, going from levo to NDT or synthetic T3...in which case you are supposed to add T3 slowly and allow your body to get used to it as it's approximately four times more potent than T4.

    But, then again, I never had any symptoms of being overmedicated, I made the switch for one reason and one reason only, and that was because my doctor at the time insisted NDT was not good for me (because I have Hashimoto's).

    I should add, for the sake of clarity, that once I went off NDT and back on levo only, my health started slowly to decline...until I had practically all symptoms of hypothyroidism, while having "optimal TSH and FT4 levels" (according to doctor).

  • Since the swap I have felt much better and despite my TSH still being too low, my T4 levels are bang in the middle of the range.

    TSH and Free T4 levels are not terribly important once we are medicated. The thing which correlates best with symptoms is Free T3. Do you have any test results for Free T3?

    If you go back on Levo you will get back all the symptoms you had that persuaded you to try NDT in the first place. Endos don't like low TSH so you will probably end up under-medicated.

    What will this new endo do then? Prescribe meds for pain? Inflammation? High blood pressure? Depression? Beta blockers for fast heart rate and/or anxiety? PPIs for low stomach acid and heartburn?

    I can't understand why you would even contemplate it, to be honest.

  • Thanks for all the comments. I hear what you are all saying, but I do want an endo to do a thorough screen. The endo that I am seeing is one of the Drs on the British Thyroid Foundation committee - so I do have high expectations!! Having said that I would resume NDT if I felt it to be necessary.

  • What do you call a 'thorough screen', FM? She'll probably only do TSH and FT4, like your GP. She won't know any better than that. And the fact that she's on the BTF committee, makes it even more unlikely that she will do anything else. Just the fact that she is insisting you go back onto levo only, speaks volumes. That's all she knows.

    I'm guessing, of course, but going by experience, and all I've read on here, that will more than likely be the out-come. I hope I'm wrong, for your sake! But...

  • Wow! Quite a lot of negativity in some of the replies to my post. I only wanted to know how I should swap back to Levo from NDT. I certainly wasn't expecting to receive a lecture about the medical profession (of which I am one) and criticism of endos in general.

    We all have our own experiences of health and medical treatment and should respect that we are all different in our needs, and beliefs. I have never been happy purchasing NDT online from Thailand - my GP won't prescribe it, and although I feel well, it is not certain what is in this medication!

    If a member is asking for advice, maybe that is all they should receive?

  • Here, I can agree with you. I have been doing well on Thai NDT, and it's a lot cheaper than prescription NDT in Belgium where I get mine. But even though many seem happy on Thai NDT (I have seen very few negative reviews online so far), I also feel a bit hesitant when it comes to all the inactive ingredients, as manufacturers in Thailand do not have a legal obligation to make that kind of information available to the public. Since this is a life-long condition requiring life-long medication (at least in my case), I'd prefer to take a legally prescribed NDT drug that I can get from a local pharmacy, rather than ordering it online and keeping my fingers crossed customs won't confiscate the shipment...which is why I am going to give Erfa Thyroid a try, hoping that the problems reported a year or so ago were only temporary...

  • Has it not occurred to you that, in a way, you should be grateful for the negative comments? People don't make them because they enjoy making them, but because they care about your welfare, and don't want you to make the same mistakes they did, fall into the same traps they did. They weren't lectures, they were warnings.

    As for everyone being different, I think you'll find that stated on just about every thread. We are well aware that everyone is different, and we shout it - loud and clear - from the housetops. I don't think you've done much reading on here, have you. :)

    Maybe you're right, and if someone asks for advice, that is all they should receive. But, that rather goes against the grain. And, believe it or not, many people have been grateful for the extra advice/warnings/criticisms they've received. Remember, as a patient, we're on your side. :)

  • I hope you get on well with the Erfa Thyroid. I really do share you concerns about what is in some of these meds purchased from countries such as Thailand - its such a gamble!

    Keep us updated!

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