Levo not working?

I've been taking Levo for 6 weeks now (25mcg for 1 wk, 50 for 3 and now on 75) and feel no different. I know it can take up to a year to get the level right but surely something should be happening? My last blood test showed TSH 4.15 and T4 16.1 which was hardly any different to my last test in March. I took my temperature this morning before getting up and it was at an all time low of 33.6 so I am really wondering what is going on!

I've learned loads from this forum and am wondering if I am not converting the T4 properly? My GP would not only not test my T3, but said it could not be tested and would not be prescribed on the NHS, but either way it didn't matter because Levo is all anyone needs!!

I know I'm still on a fairly low dose and it's early days so am I expecting too much too soon? I would really be grateful for some input from you lovely, knowledgeable people :-)

53 Replies

  • Change of GP is the first thing that springs to mind........

    Just checking the usual - taking levo with water only, at least an hour before food and well away from iron or calcium supplements..? Have you been chopping and changing between makes of levo..?

    You seem to have been increasing quite rapidly.... I would have thought you should really have noticed something by now....

    hmmm, I would suggest that you definitely need a T3 test to see what is happening..

    Looks like it might have to be private testing though.....




  • Fortunately I'm moving house soon so will have to change GPs...hope the new one is better! I have been increasing rapidly (as per Dr Skinner's instructions) but other than a couple of wobbly episodes at first with coffee and alcohol I can see no difference at all. That said I am not particularly "poorly" as I am not shattered all the time and rather than being cold I am always roasting, but the symptoms I do have don't seem to be changing. I take my Levo at night well away from food and supplements, so can't blame them!

    I really feel aggrieved that I should have to pay for my own testing...it's just not right!! Is it definitely not available on the NHS at all? x

  • The first possible explanation that comes to mind is poor T4 to T3 convertion. You should deffinitely find a way to check that and post your results with th lab's referense. I've read on this forum a lot of complains about doctors refusing to test free T3, but people manage to find a way out - change doctors or do the tests privately. Maybe you'll find a doc in your area (that you're moving to) faster if you ask that particular question in a separate post? Good luck!

  • Ooh good idea-never thought of that!! I was going to ask our vendors if their GP was any good but then again I doubt they have dodgy thyroids!

    I've always felt, although I am apparently a borderline case (and maybe even because of that) that I am not the typical thyroid patient and that I maybe needed something other than Levo, and it's looking like I was right. It's awful that GPs make us feel like hypochondriacs just for knowing our own bodies isn't it?

  • Sorry youre not feeling better...l had the most wonderful sleep last night...must be the pure air up in the hills of Chianti with windows open all night and the wine. But who knows what will happen tonight!!!! Im still patiently waiting to see proper results. l agree we could spend so much money trying to get things right...hope youre next GP is more agreeable...lm having blood tests when l get home but ofcourse not T3. Xx

  • It's all right for some folk...Chianti indeed! Hope you have another great night tonight :-) XX

  • Hi

    My daughter is also not feeling any better and she has been taking levo for 10 weeks. She started on 50mcg increased to 75mcg then 100mcg which she has been on for 4 weeks now as per Dr.S instructions. In fact she is feeling worse then before the levo in some respects, she feels more depressed and other symptoms are pretty much the same as before, she was hoping she would have seen some improvement by now.

    Best Wishes browny

  • Is she going to go back to see Dr S, Browny? I have an appointment next month but to be honest can't see the point at this stage x

  • Hi

    Yes she also has an appointment next month and she is keeping it as she really needs to speak to him regarding her symptoms, I have told her to ring him now as she is not very good at all, like you she is not sure if the levo is suiting her or if its a case as many say on here you sometimes feel worse before you feel better.

    What do you plan to do?

    Regards browny

  • I've just drafted a letter to post to him but as I've said it's pointless keeping my appointment next month, I am betting I'll get no reply :-(

    Carole x

  • Hi

    Let me know if you get a reply.

    What will you do now,

    go back to your G.P. and ask to see an Endo or see someone else privately.


  • Not sure really. I will wait and see if I get a reply and I'll just have to take it from there. I'm moving house next month so fingers crossed I'll get a super duper GP (ever the optimist!)

  • The reason you have not noticed a lot of difference may be because, from what you say about your results, it appears to me you did not have biochemical confirmation of hypothyroidism before you started thyroxine (assuming the ranges are the same as mine).

  • Sorry, I hate to sound thick but I don't really know what you mean by "biochemical confirmation"??

  • sorry, it means your blood test did not show your thyroid hormone production was low

  • So are you saying I shouldn't have gone on Levo?

  • Please don't stop taking your levo. Your TSH was above what is considered in other countries to be high. You also have symptoms. Your doctor would have weighed up all the evidence before starting you on levo.

    There is also the possibility that you caught it early, before it had advanced much. Since you started on levo, your condition may have naturally worsened leaving you needing a higher dose.

    It can also take a while for the levo to build up in your system and change your results noticeably.

    There is also the possibility that your body is using as much of the levo as it can meaning that not much is remaining in the blood, meaning that your blood results won't have changed much.

    Whatever you do, please don't change your medication dose without speaking to your doctor.

    Can I just ask if you felt better at all at any point while taking the levo?

    I suspect that you just aren't on a high enough dose yet. Your TSH is still too high for someone on levo and I suspect that you won't feel better until it is lower.

    I read something interesting the other day. If you sit on a pin, it really hurts. When you remove the pin you feel better. If you sit on two pins it really hurts but if you only remove one pin it still really hurts. You have to remove both pins to stop the hurt. Treating the thyroid can be similar in that you have to treat completely before feeling better. Replacing only half of the thyroid hormones your body needs won't help. You need to replace ALL the missing thyroid hormone, i.e remove BOTH pins :) Basically, you won't feel better until you are taking as much levo as your body needs.

    I'm sorry if I have confused the issue. I didn't mean to ;)

    Carolyn x

  • Don't apologise Carolyn-the pin theory works for me! I really didn't want to have to take medication but now I'm on it I guess I'm in for the long haul. Luckily, though I have quite a lot of symptoms I feel OK most of the time (which I am grateful for!) but I really want to get this thing sorted. Louise has suggested I keep tabs on my symptoms by giving them a mark out of ten so that might help. A lot of what you've said makes sense so thank you - I promise I'll hang in there :-) xx

  • You haven't put the ranges for your blood test result, but assuming they are similar to the ranges I am familiar with, and you said the results before you started levothyroxine were similar, then yes you did not need treatment. But if your TSH was above 10 in March then you did need the tablets. However if you did not really need them then its not surprising you don't feel any different now.

  • spring13, can you please clarify something for me? when you say 'Above 10', do you mean if it is below that I should not be treated with Levothyroxine? My TSH has never been above 10 in my entire life. (or at least since I was 13 - I'm 68 now)

    The highest it has ever been is 4.7.

    So, does this mean that because my TSH has never been above 10 I have never needed to take Thyroxine? Is that why I did not get better on Thyroxine?

  • If you had hypothyroid symptoms, your TSH was above the normal range and you had positive antibodies then you might just qualify for thyroxine.To be truly hypothyroid your T4/ T3 is below the normal range and the TSH is above 10.


  • spring13 are you replying to me? You say I am not truly hypothyroid?

  • Spring seems to be saying neither of us are hypo Marram? If only it were true!!

  • I have a VERY good reason for asking specifically if spring13 is saying I am NOT hypothyroid. I really, really need to know if it means me! Please. spring13, can you confirm your opinion that I am not truly hypothyroid because my TSH is not over 10 and never has been? This is very important to me.

  • this is my opinion: if your T4/ T3 were below the normal range then you needed thyroxine. If your TSH was above the normal range (but below 10) and you had positive antibodies then thyroxine could be justified. If T4 /T3 is normal but TSH above 10 then you need thyroxine. So you may fit one of those scenarios?

  • What scientific basis is there in this figure of 10? Perhaps you can show this.

    How will a GP know what your T4 and T3 are if they never, ever test it because your TSH is coming up 'normal? also, your whole 'scenario' is completely nonsense. Because why would a person with normal T4 and T3 need thyroxine, even if their TSH is above 10? It would make them hyper, surely!

    Anyway, for your information and possibly to demonstrate the absurdity of your hard-and-fast rules, I fit none of those scenarios.

    I have NO thyroid yet you are suggesting that because my TSH is not high, I am borderline. This proves conclusively that without using clinical judgement, relying on 'biochemical confirmation' can lead you seriously astray.

    OR, could it just possibly be that the TSH is actually irrelevant? That everyone has an optimal level and that level could be hugely different from the so-called 'normal'? I am a case in point. No thyroid, yet without treatment I would lapse into a coma well before my TSH reached 5, let alone 10. Another person could feel perfectly well with a TSH of over 10.

    The TSH can only be helpful if it changes - a pattern of rising or falling TSH could indicate some sort of dysfunction, which could be helpful in diagnosis.

    There was a report of a woman who had a high TSH and the doctors wanted to treat her with thryoxine, but she felt perfectly well, and asked that they leave her alone:


    We should all remember that we are individuals and deserve to be treated as such.

  • This document seems to have caused extreme stress on this site. Of course people should be treated as individuals and I have not suggested otherwise. If you have no thyroid you obviously need thyroxine but that's not what you led me to understand from your original question. I will sign off now as my opinions appear to have caused a stir and I don't want to keep replying to criticism. best wishes

  • If you're referring to the RCP document, then with a little research you'll learn that the document has been causing major distress to thyroid patients ever since it was published. The diagnosis and management of hypothyroidism is a very controversial subject amongst both patients and doctors.

  • Definitely! Since completely ignoring these guidelines, I am finally feeling that I might fully recover. I am feeling very much better on my 100mcg t3. I'm half an NBD, lol! :D

  • I was not being intentionally misleading, but I was trying to see if your opinion was as rigid as it appeared, because sadly if all GPs were to have that view, I suspect there would be a number of individuals who could die while waiting for a diagnosis. I am, in a way, blessed because I do not have to convince a GP that I have a thyroid problem. Although, in fact, my GP still insisted on seeking an alternative diagnosis when I was not well on thryoxine, rather than addressing the glaringly obvious 'elephant in the room', which caused me to be extremely ill and in fact I had several mini-strokes when my thyroxine was reduced by a third on the basis of the TSH. This was directly attributable to the TSH 'guidelines'.

    The document per se is not the source of the stress on this occasion, but the suggestion that it should be followed slavishly, and the fact is that telling someone 'you did not have a biochemical confirmation of hypothyroidism before you started thyroxine' is another way of saying 'you are not hypothyroid' but with a little window-dressing to make it more palatable.

    When a set level of so-called normality is established and this is accepted as a guideline, especially when no-one is prepared to go outside that guideline for fear of professional sanctions, then people are NOT being treated as individuals, and this is exactly what is happening.

    Such a shame that you do not wish to enter into a discussion regarding the extremely sweeping statements you have made, such as the fact that 'most people' have primary hypothyroidism.

    I am writing this, not to prove a point, but to help those who might have been reading this thread and started to doubt if they need to get a diagnosis or thyroid treatment, because their TSH is not above 10.

    If these guidelines were valid, then this website would not need to exist.

  • Well said Marram, thank you very much. As I probably said last night (somewhere on this thread!) I wish I wasn't hypothyroid but unfortunately I am. Spring's opinion will not make a dent in my day, but I feel for the poor people on here who can barely function and are desperate for a diagnosis. It's bad enough GPs denying people the right to medication never might someone on a forum intended to give support!

  • This is rubbish. Other countries don't use 10 as the cut-off. Everyone is different and these guidelines are not helpful for many. Granted, some might fall into this category but many do not. In some countries, as TSH of 3 is seen as hypothyroid if symptoms are present. What on earth happened to treating the patient? It's all done on measuring a hormone that isn't even a thyroid hormone. If you read recent research you will see that TSH is not truly representative of thyroid function once you have hypothyroidism and that hypothyroidism should be treated as a different entity. Basically TSH is all well and good if you are hyperthyroid or euthyroid but not hypothyroid.

    Also TSH is affected by many other things, including cortisol levels and pituitary issues. It should not be used alone and not with an arbitary limit which was decided on without any evidence to suggest it should be set at this level.

  • Thank you for helping me out Carolyn :-) I don't have sufficient knowledge to be able to prove I am hypo but if I'm not I would love to know what's causing my dry thinning hair, constipation, horrendous mood swings and depression, splitting nails, loss of libido, brain fog, dry skin...need I go on ?!

  • Sounds like hypothyroidism to me... I hope you start to feel well soon. It can be a long road to recovery but hopefully we will all get there in the end. I certainly am and I hope you do too :)

  • Spring, Could you direct me to the scientific studies that back up this statement from the rcp, please. Jane x

  • No sorry I cannot, but I trust the source and the bodies who support the document. I expect they could be found if I spent longer looking. Remember this is my opinion and belief, just as others have their own opinions and beliefs.

  • Thank you. The reason I asked was because of guideline13. "If possible, show a clear distinction between personal experience or opinion and evidence-based information". The way you had worded your earlier responses suggested your information was definitive, but if it is your personal experience then it would be helpful if you stated as much. Thank you for clarifying.

    Unfortunately the document you referred to does not have any scientific references to back it up.

    Jane x

  • Your comments come across as someone who speaks from theory rather than personal experience. Do you have any thyroid dysfunction yourself?

  • yes, 14 years, thyroid cancer, total thyroidectomy, radioiodine ablation.

  • Everyone is entitled to their opinion Spring, but in this instance when you must be aware that many people on this forum have had a real struggle to get diagnosed in the first place, telling them they are not hypo is not helpful I'm afraid.

  • I think you will find I did not tell individuals they were not hypo, I said this document gives guidance, of course I don't know each persons individual circumstances.

  • In an ideal world, of course we trust our doctors but, unfortunately, the guidelines for thyroid gland conditions do not guide the GP's into knowing how to diagnose patients who have clear clinical symptoms of hypothyroidism and the suffering goes on. This is only because they have no idea of clinical symptoms in the first place, of which there are quite a few, and their reliance on the TSH only which varies throughout the day.


    Dr. Lowe: The intended purpose of the new ThyroTest, as with other TSH tests, is two fold: (1) to decide whether a patient needs thyroid hormone therapy, and (2) if she does, what dosage works best for her. For these purposes, the ThyroTest provides the same largely useless information that’s provided by TSH tests run in medical labs.


    Thankfully there are still a few doctors who were trained around the 60's for whom clinical symptoms were at the forefront of diagnosing patients. Many of us (I am one) for whom my clinical symptoms were completely ignored who went through a completely unnecessary procedure and was finally diagnosed (one week after being discharged from the A&E Cardiac Dept as 'probably viral'). It was a first aider who suggested a problem with my thyroid gland and he was right - it was 100 - not one of the ten Specialists/GPs/hospitals did a TSH whatsover - and did not know any clinical symptoms obviously.

    It was truly a hard lesson learned by me as well as others on this site. I would never, ever, have imagined having to search the internet for the information that has made me well and that's thanks to Thyroiduk.org. Levothyroxine made me feel more unwell and there is no alternative on offer in the UK.

    I do hope you get better soon as levo does work for many people.

  • Did you look at the title of that paper?

    The diagnosis and management of primary hypothyroidism

    Without any certainty that the person has not got some form of secondary (or tertiary) hypothyroidism, this document might not be applicable at all.

    Further, more recently published papers have thrown the whole question of treatment of modestly elevated TSH up for discussion again. In particular:



  • agree it is primary, which most people have

  • Sorry to ask, but I do not fully understand your reply.

    What do you mean by "it is"?


  • yes the document is about primary hypothyroidism

  • Spring, I was diagnosed by both my GP and Dr Skinner as being hypothyroid, and I also have high thyroid antibodies. If I thought I didn't need to take these flippin' tablets I can assure I wouldn't!! Surely though if I didn't need them and was therefore pumping unnecessary hormone into my body, then I WOULD expect some sort of reaction?

  • Hi

    You CAN get T3 testing on the NHS - but it's not easy and your current GP seems resistant to the idea!

    I would ask again though - before spending any money on private tests...

    Are you keeping a track of your symptoms..? We advise people to mark each symptom out of 10 and then reassess after a few weeks to see if anything has changed.

    The changes may be quite subtle, so it helps to keep a record.

    Everyone is different and people are rarely tested when they are 'healthy', so who really knows what their normal, natural thyroid state is....

    For example - Before you started having symptoms, your TSH level may have been 2 or even lower....so reason would suggest that your body needs to have that level again for you to feel 'well'.

    Having said that, the TSH test is not a great test and should only be used in conjunction with FT4, FT3, antibody testing and SYMPTOMS! ;) xxx



  • Thanks Louise, marking symptoms out of 10 is a good idea-I will definitely do that. I took my temp this morning and it was up to 36.2 which is unheard of for me so maybe things are starting to get moving at last! I'm feeling in a positive mood today so I think the fact that I am no better but more importantly, no worse, that is a good thing too :-) xx

  • agree, you might cause overactive thyroid levels and symptoms, however your dose is small at the moment so it may be too soon for that to happen.

  • Hello infomaniac,

    Let's look at the big picture. If you are still experiencing symptoms then there is still something not right in your system. For some people the TSH and T4 tests will NEVER give them a clear picture. In talking to my daughter the other day she told me adamantly that if her thyroid replacement had been guided by her tests alone she would now be dead. She is now on T3 only and she believes firmly that this has kept her alive for 11 years. It boosted her metabolism so that her pulse eventually reached 60 on some rare occasions but her temperature has NEVER reached 37.

    If diagnosis and treatment were as straightforward as the current guidelines suggest then sites like this, Thyroid UK and other forums like Mary Shomon's would not be needed. They are needed because we are all different and need different health protocols.

    We now know why my daughter's endocrine system was failing, causing her thyroid function to be so bad. This has taken us 21 years however. Hopefully through this forum others will not have such a long wait to have their health put back on track.

    Pay attention to your symptoms primarily and if these do not start to reduce then you need to keep looking for the reasons why. I feel that if thyroxine was going to work for you then it would have started to do so by now. It may simply be a matter of changing your thyroid replacement. Check this page on the Thyroid UK website for other options: thyroiduk.org.uk/tuk/treatm...

    It may be that you need other supplements. Look at this page. thyroiduk.org.uk/tuk/diagno...

    You may need to change doctors to get the tests you need. If you don't get any cooperation get back to us for more suggestions, but remember that first and foremost you are looking to get rid of your symptoms and be well again, not reach that arbitrary TSH of 10 for which there is no scientific evidence.

    Jane x x

  • Thanks Jane, that's very encouraging. I am going to stick to the Levo and pay really close attention to my symptoms (marking them out of 10 which should show up any small changes hopefully) and see how it goes. I am supposed to increase to 100 soon (if my doc agrees) so we'll see how it goes. Thanks for your help and advice xx

  • My endo didn't diagnose me with hypothyroidism in spite of a a TSH of 18.0, because my fT3 and fT4 just scraped into the bottom of the normal range. Sadly even when TSH is elevated above 10 it can still be a fight to be believed. I am now well on 2.5 grains of NDT :)

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