Advice given on TSH levels... Please - we are ALL different :0)

I'm a little concerned about some of the advice being given here. We're ALL different and for me, my TSH level of around 2.11 is optimal. This is where I am at present. I know this is optimal for me as I track my symptoms and watch out for them like a woman possessed! If my TSH went any lower I would become hyper. So when I see a response where advice is to go lower, below 1, irrespective of symptoms I wonder if this advice and attitude, although well intentioned, is becoming as narrow as GPs who think a TSH level above 5 is also ok irrespective of symptoms... Remember that the TSH test is not a perfect science!

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  • Of course it depends on the patient but many are undermedicated when they are kept 'within the reference range'.

    This advice is from Dr Toft who was President of the British Thyroid Association and The Royal College of Physicians:-

    6 What is the correct dose of thyroxine and is there any rationale for adding in tri-iodothyronine?

    The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range – 0.2-0.5mU/l.

    In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.

    But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

  • Hi Shaws

    I'm aware of this, however some (me) would be overmedicated if we go that low and surely this is just as dangerous as keeping our TSH levels too high. I'm seeing the 'go below 1' advise being given, irrespective of symptoms or reminders about symptoms, and sometimes it looks as though the 'below 1' is becoming the standard for all to aim for, and this is not the case.

  • I have been told by someone who prescribes that anyone who took too much levo would be at the doctor's very quickly with unpleasant symptoms of overstimulation.

    Everyone's dose is personal to themselves. Levothyroxine is not dangerous unless you take excessive amounts or you are extremely frail and the GP's would take care. That's why we always say up your doses gradually.

    If one took too much by mistake they would soon know about it and they thus miss out the next day's dose and reduce it the following day.

    Regardless of the TSH the best question, I believe (not medically qualified) would be for the GP ask 'how do you feel' and if overstimulated the dose would be reduced. If 'I feel well' the dose would remain. If 'I feel absolutely awful' an increase would be due or a change to an alternative if levo was making you feel worse. That's what they did before the blood tests became the norm.

    P.S I was on a lowish dose of levothyroxine and had more heart palpitations and ECG's and 4 day heart monitor. Nothing wrong with my heart but it was the levothyroxine. Once I stopped it my heart calmed and palps ceased but on presenting to the GP or the A&E it would have appeared I was on too much.

    Unfortunately, too, many GP's prescribe according to the TSH leaving many unwell

  • I must be very sensitive to levo as I can tell if I've had more than my optimal, and I don't like the feeling... aiming for a TSH below 1 is also not always right for everyone.

  • It does rather depend on if you still have a thyroid gland. If yours has some function then 'within range'is appropriate. If you don't have any thyroid function or had it removed the only hormones you get are what you take so if your petuitry (spelling?.?) Is still trying to stimulate it you are usually undermedicated.

    Hope that makes sense.

  • It does make sense although the point I'm making is that we are all different and for me to aim for a TSH under 1 is inappropriate, as it may be for others where I've seen this advise given.

  • Being hyperthyroid is a matter of the level of T3, the active hormone, in the blood being over its range, not where the TSH happens to be. Yes, TSH does function at different levels for different people, your 2.11 will reflect, for you, appropriate levels of T4 and T3 keeping you functioning well: T4 and T3 testing would probably show you are "in balance". Others among us would be half-dead with a TSH of 2.11 - I would be! TSH is a pituitary hormone and reliance on it in alone for assessing essential correct hormonal balance is not good treatment: it is both T4 and T3 which should be tracked, but regrettably are not, so missing conversion issues. The point about the fallability of treating by the TSH is frequently made. You are particularly observant and seem to have found what TSH level indicates, for you, appropriate T4 and T3 levels, but you demonstrate at the same time the fallacy of using the TSH as the final, definitive guide compared to the more accurate assessment T4 and T3 give.

    Also from Dr Toft. P 88 "Understanding thyroid disorders":

    ".TSH low or undetectable. In this circumstance, it is essential that the T3 level in the blood is unequivocally normal in order to avoid hyperthyroidism."

  • I was not suggesting that 2.11 is appropriate for anyone else. In fact the opposite - I was making the point that one specific level is not appropriate for everyone and unless we are an enlightened endo ;) I think we should all be very careful about telling others they should aim for this or that level...

    :)

  • I thought I was agreeing with you....

  • Thank you - so you were! I'm sorry for my misunderstanding but I was begining to feel very shot down by the simple fact that no-one had actually agreed that advice given about aiming for specific levels needs to be given very carefully as one size does not fit all.

  • Liza I agreed with you and I think " some people " is better than "most" as well.

    Another niggle is the constant quote that" blood tests mean nothing" " TSH test is useless" I will say no more !

  • I agree. TSH test follows my hypo status really well. Statements are becoming far too flippant. This involves the health and well-being of others and statements made should be much more mindful and especially when made by those wearing the ADMIN badge where a level of authority and knowledge is implied. At present, I'm rather unimpressed by some of what's been written.

  • Not to worry!

  • i would like to say that I have read through a lot of posts on this forum and, for me, the advice is only given if the symptoms suggest that the person is still not well enough. I'm sure if they were well they would not be posting for advice... Just what I have gleaned from the forum. I don't see anybody saying if a person feels well they should reduce their TSH. I'm still trying to get to grips with things but the general feeling I get is that you are medicated until you feel well....not just what your TSH says. If somebody is in the upper range of TSH and is unwell then it needs to be reduced until the person is well...and that often means medicating. It's great that you are well at that level...but not everybody is or will be....and the advice is always relating to symptoms in the posts I have read..... I am hoping to get medicated until I feel well...not until my TSH levels are a certain range... I think that's what everybody wants and of course everybody will be different...what is good for one...may not work for another.

  • Some of the responses I've seen state 'aim for under 1' even though there may be other health issues going on so the problem may not be more T4 is needed...

  • I have not seen any comments about go below 1 if the person is not suffering any symptoms. I think that it is great that the TSH test works really well for you and you are happy with your TSH being 2.11 but so many people the TSH test is not that sensitive a measurement for them.

    I couldn't tell you what my TSH is at currently, I haven't had a test for over a year. I will have to have one soon as my Dr insists on one every year (probably gets money for hitting a certain target of TSH tests) but I do not feel I need one as I feel well.

    From my experience before I found this forum my GP and then stupid endo, kept my TSH way too high and I was very ill for a very long time and ignored the fact that I felt so unwell because my TSH was 'in range'. I wish I had had the information to have challenged that thinking at the time.

  • Some of the responses I've seen state 'aim for under 1' even though there may be other health issues going on so the problem may not be more T4 is needed...

  • Agree.... Even if someone has symptoms of what may be unresolved thyroid problems - those symptoms could easily be down to something unrelated to thyroid,TSH and such like.

  • Yes it may not be the answer but it is something that would need to be ruled out too. All to often the attitude of Drs that it is something else because the TSH is in range but never sort out that something else.

  • LizaSahara

    I totally agree with you, the forums do imply that one size fits all, advising levels that may be fine for some but for people like you and me and probably many others they are not.

  • I suspect that many times the person is saying they are still symptomatic and their TSH is (such-and-such).

    The person replying almost invariably will ask for actual figures and ranges, and also say that the T3 is needed in order to know what is really going on., and then quote Dr Toft.

    If an individual has a TSH of 2.11 and feels fine, they are probably not asking for advice.

    On the other hand, if a person has a TSH of 2.11 and feels ill - I most certainly would - then it is reasonable to suggest that they may need more thyroxine, conditional on the T3 level and vitamins and minerals being checked.

    After all, suggestions are not being given unless asked for.

  • Yes in an ideal response, this is what should be happening - I totally agree, and most times this is what I see... BUT My point is that this is not what I saw today and I'm asking that everyone be mindful of the responses/advice they are giving...

  • Could you please message me, or another admin, the link to the particular response so we can see exactly what you mean. Thanks :)

  • If I can find it in the super new set-up ;)

  • Lol. Thanks :D

  • Thank you hypohen.

  • Personally I think I suggest that "most" people feel better with a TSH of under one....

    But TSH is useless for me. In order to feel well my TSH has to be <0.02, so we go by my fT3 and fT4 levels which are well in range, but I am lucky ad I have an enlightened endo :)

  • Like me :)

  • HAHAHAHA Clarebear, TSH or any other bloods are totally useless for me :D also multi dosing is totally useless for me too ;) my endo is lost and only myself and my private doctor seem to know where we are heading :D

  • LOL - Yes it's true for some people that the blood tests are meaningless :D xx

  • 'most people...' is better than 'aim for'... but I couldn't write 'most' without knowing of statistics which show this - do you know if there is any? A survey of admin isn't enough! ;) (Even a survey of HU users isn't enough, because as others have previously pointed out, it's assumed here that many 'roidies are so well they're busy getting on with their lives.) Without evidence which shows 'most' people feel better with a TSH of under 1, perhaps a statement that 'some people...' is more accurate? Certainly 'most' people I personally know feel better with a TSH over 1 although I'm aware this is not the case for everyone - we are all so different.

  • I was quoting from Dr Toft's book "Understanding thyroid disorders" where he talks about judging the correct dose of thyroxine - please see Shaws' first reply to you, especially the third, fourth, fifth and sixth paragraphs "most people will feel well in these circumstances" :)

  • Yes - but is this 'most' supported by evidence? Or is it based on opinion? I'm not saying Dr Toft is not right - I'm asking 'where are the figures to support this - where are the statistics, where is the evidence?' If there isn't any 'some' is in my opinion, more accurate. Neither do I read Dr Toft stating 'most people feel better with a TSH under 1' - have I missed it?

  • He actually says 0.2 to 0.5 rather than under 1.

    This is the advice given to GPs too in the article written by him for their Pulse magazine - it's available from Louise if you want it.

  • I'd be interested to read it and also see the data which is used to come to the conclusion that 'most' are in this range. Or is it a statement made without data in which case, with all due respect to Dr Toft, a more correct statement is still in my opinion 'some'. For me the terminology used is important because 'most' implies an expectation which suggests 'below 1' is the new standard. If we are trying to raise awareness and challenge established attitudes to thyroid conditions, we must not start creating a new set of myths. If I can find holes in certain points, even in something as seemingly trivial as basic terminology, and these points are presented as fact, established medical attitudes may not take seriously any desire for change.

  • The article that Clarebear is referring to is 'Key questions

    on thyroid disease. Endocrinologist Dr Anthony Toft answers GP Dr Pam Brown’s questions on thyroiditis, thyroid eye disease and thyroxine dosing'.

    Below is the relevant text:

    6 What is the correct dose of thyroxine and is there any rationale for adding in tri-iodothyronine?

    The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part

    of the reference range – 0.2-0.5mU/l.

    In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated –

    18-22pmol/l. Most patients will feel well in that circumstance.

    But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4

    concentration will be elevated at around 24-28pmol/l.

    This ‘exogenous subclinical hyperthyroidism’ is not dangerous as long as serum T3 is unequivocally normal

    – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l).

  • So he is clearly advising that if the TSH IS suppressed, then the T3 must be checked, and must be 'unequivocally normal'. No ifs or buts there, because if the T3 were to be found above normal, Thyroxine would have to be reduced.

    Isn't it good we have had the chance to review all this information. Now all I need to do is find some information about what happens to the T4 if you can't use it. Apart from Dr Peatfield I am not sure where to look.

  • Thank you. A review would be good.

  • So... I don't think it's helpful when this entire piece becomes the advice to 'aim for a TSH level below 1'... and again, where is the data that supports the theory that TSH levels in the lower part of the range are appropriate? For some they are but this level is not appropriate for me. I have been sent a private message from someone who assumed they needed to aim for a TSH below 1 and this may not be right for them. All I have asked is simply a recognition that not everyone is the same and that advice should be written with this in mind.

  • You have had this recognition several times over in this thread alone. There really is no more that can be added. But, just to clarify: You should aim for a dose of thyroxine which restores euthyroidism and makes you feel well. For some this may mean a TSH of 2 or more. If, however, your TSH is above 1 and you are still unwell, according to Dr Toft CBE, who is Consultant Physician at Edinburgh Royal Infirmary, specialist in "Endocrinology within which major interest is thyroid disease", you could safely reduce the TSH to 0.2 to 0.5 as long as the T3 level in the blood is unequivocally normal.

  • Yes, recognition by some of PART of what I was asking. And others (non-admin) agreeing that advice needs to be more mindful. But some of admin seemed determined to keep referring to the same text which states 'most' and this is potentialy damaging ie to the lady who contacted me who believed that we should ALL be aiming for... The clarification you have written above is acceptable. I'm puzzled as to why it has been so difficult for some to take this on board.

  • Lizasahara, why don't you contact Dr Toft and ask for his stats and how he came to the figures he states? He must have consulted with hundreds of people to come to that conclusion. Maybe there is a study that Admin are unaware of. :-)

  • Hi - yes this would be interesting. Although I have to add that this was not the main purpose of this post which was to ask that advice given should be thought about with a lot more care... the focus on the part you refer to came about as different admin kept referring me to this (several times) and it wasn't until yesterday pm that AT LAST there was a suggestion to review and FINALLY recognition of a need to review from admin. :)

  • I agree with you 100%.

    I left this site, because there were too many people playing doctor and giving advice on exactly this type of thing without being medically qualified, just because thats what a particular doctor has told them. Thats all well and good but any doctor is only giving advice to the patient in front of them and the same is not necessarily the same for anybody else.

    Some of the comments I have seen in the past are bordering on dangerous and just stating you are not medically qualified on any post does not detract from the fact that you are still taking it upon yourself to give unqualified medical advice!

    I felt, when I deleted my previous account that someone was going to end up being killed by some of the advice on here and I wasn't willing to be a part of that.

    I was still having a look every now and again, because there are some people on here who do post very useful links to medical papers and other interesting factual stuff, most of which I could see without being a member, but I really felt I had to re-join to add my support to this post.

    It is my opinion that while offering support to people with a common illness can be very useful and helpful, I really feel that the unqualified medical advice should be stopped.

  • Hi Susimac.

    Thank you so much for your support.

    I have had a very difficult, stressful few days over this post. Like everyone including admin, I also have a lot of other committments and I dislike being thought of as difficult. There was a time a few hours after I had posted when I was considering deleting the entire post. It's not me who is going to be held to account for any outcomes from advice after all. Then I received some private messages which made me realise that the post and ensuing discussion was very important to others too. I decided I had to see it through, however difficult it was. And it has not been easy or pleasant.

    You are right about the disclaimer. I think it's a useful reminder, along with the guidelines however the disclaimer, guidelines and attitude that 'it's only advice, it's up to them...' and 'they were asking...' does not absolve anyone from a duty of care. I'm a dance teacher in the community. No-one monitors my classes, events or workshops. Sometimes I have used a disclaimer. My legal expert told me that in my class, if I tell someone to do something which results in injury, my disclaimer is meaningless.

    This site has enabled me to learn so much about my thyroid condition. I would not have been able to manage it without the support I have had from the best of what this site does. It has helped me to think about things I need to find out about and maybe ask my GP to look into. It has helped me to expect and achieve much better support from my GP and this has been a big part of my recovery.

    Earlier this year I sent my medical centre a 'letter of concern' regarding how I and my thyroid condition had been treated and managed in 2012. I very quickly received a reply from the centre manager thanking me for my letter and telling me that my concerns would be discussed at their next centre meeting. I felt I had been listened to, given respect and that and my concerns were being taken on board. Since my letter, I have had several visits to my GPs and now I cannot fault their attitude or my treatment.

    Admin quite rightly ask for respect. It works both ways. One of the posts from admin in this thread left me feeling belittled, patronised and I felt I was being told to shut up. I find this completely unacceptable.

    Anyway, thank you for your support - it really has been appreciated and helps make the challenges of the past few days worthwhile.

    Best wishes

    Liza

  • I agree with you 100%.

    I left this site, because there were too many people playing doctor and giving advice on exactly this type of thing without being medically qualified, just because thats what a particular doctor has told them. Thats all well and good but any doctor is only giving advice to the patient in front of them and the same is not necessarily the same for anybody else.

    Some of the comments I have seen in the past are bordering on dangerous and just stating you are not medically qualified on any post does not detract from the fact that you are still taking it upon yourself to give unqualified medical advice!

    I felt, when I deleted my previous account that someone was going to end up being killed by some of the advice on here and I wasn't willing to be a part of that.

    I was still having a look every now and again, because there are some people on here who do post very useful links to medical papers and other interesting factual stuff, most of which I could see without being a member, but I really felt I had to re-join to add my support to this post.

    It is my opinion that while offering support to people with a common illness can be very useful and helpful, I really feel that the unqualified medical advice should be stopped.

    No idea why the site has put my reply here either, it was a response to the original post

  • LizaSahara I can see what your saying, although I've not been on here for a long time, due to my health and family problems, I have read a lot of the posts and i haven't seen any advising everyone to have a tsh of 1or less, but only to some who are still unwell and struggling, and having to try and treat themselves. It is only advise, no one needs to follow it. I hope this makes sense i have bad brain fog just now.

  • Hi Sue - thinking back to when I was first on here if I had seen the question and the replies that I saw earlier, I may well have assumed that a TSH level of less than 1 was the level we should all be aiming for.

  • If you are concerned about advice that anyone is giving please do let us know. It might be a case of someone poorly wording their advice (brain fog perhaps) or they may be misunderstanding something in which case we do need to point them in the right direction :)

  • To add a bit more to the mix, please don't shoot me down !

    Many times people say they are having hypo symptoms and their TSH is below range and the advice is take yet more T4 because it's fine to have a suppressed TSH or change to T3 because of conversion issues. How about you could be plain old overmedicated ! The symptoms of overmedication can be and are identical to hypo symptoms.

  • Wouldn't dream of shooting you down, hypohen! we want as many members to survive as possible!! lol!

    The buzzword (is it a word?) is BMR. Temperature and pulse, plus Blood pressure. This will tell you in a few moments if you are under- or over- medicated. If your temperature and pulse are low in the morning, you are likely hypo, rather than hyper.

    There certainly are some crossover symptoms, but some are unique to each. That is why symptoms and signs are both important, symptoms being subjective and signs being visible and/or measurable.

  • I think this is why a free T3 test can be helpful, but try telling that to the NHS! You are quite right though, it can be very difficult to tell if one is over or undermedicated purely by symptoms and we can't assume that an increase is the aswer.

  • Sorry Marram but I don't fit into that box either, my temp is always low even when hyper and pulse and bp are within normal ranges. I was hyper with TSH of 0.09 only symptoms were fatigue, balance probs and dizziness so would have indicated I was hypo but a reduction in meds has cured the lot.

  • Sounds as if the T4 was pooling and causing toxicity - it has happened to me. Dr Peatfield gave me a good check and said that the thyroxine was not getting to my tissues, but was pooling in my blood. Do you check your T3 at all?

  • Marram, I'd like to know more about this - why does pooling happen? And if this is an issue, isn't it even more important that we do not keep taking more and more T4? Surely, if the T4 isn't being used up, other issues need looking at and taking higher levels of T4 are not useful - in fact could be dangerous?

  • Definitely! Pooling is often to do with lower than optimal iron levels or adrenal issues. The T4 can't be converted very well or the T3 can't be used in the cells very well so pooling in the blood occurs.

    I don't know if high T4 levels would be dangerous or not. I haven't seen any sensible research on this but certainly taking more and more wouldn't help and it is possible it is dangerous if it is too high. The question would be, what is too high?

  • Thank you - so it's important to look at the full picture, if still unwell; iron, adrenal, vitamins... which is usually the advice I see on here.

  • T4 and 3 were fine, I can't have my T4 too high, it has to be mid range and T3 no higher than midway. I had Graves twice, surgery and RAI so have no working thyroid, don't know if that makes a difference. And I only need 100mcg of Levo.

  • What is so important is that we become educated about it all and find what is right for us. Like me - you seem to know exactly where your levels need to be. We are all so individual.

  • Yes, there is quite a crossover of symptoms between hypo and hyper. This is part of the reason it is so difficult to judge whether a higher dose or lower dose is needed. I'm pleased you found the solution to your symptoms :)

  • Yes it is easy to confuse hypo and hyper feelings. I am feeling much better since reducing my dose of NDT. The tell take signs for me were fine tremor, feeling hot and palpitations. Xx

  • Yes, Clarebear, the fine tremor is a definite. It comes on very quickly if you are overdosed. When I first tried to take T3 I got the tremor almost immediately. Stopped the T3 and the trmor and feeling hot went straight away. I am taking it fine now, no problems. Even one person's reactions can change!

  • You are quite right! MOST people feel best with a TSH below 1 but certainly not all and it shouldn't be assumed that 'one size fits all'. If people are still exhibiting hypo symptoms then an increase in medication is likely however if you are fine with TSH where it is then that must be right for you. I feel best with my TSH pretty much unmeasurable but one of our other admins has a TSH above 1 to feel best.

    I think this is a prime example of why the TSH test should not be used on its own and should be used in conjunction with T4, T3, antibodies and symptoms :)

    I'm glad you've found the right level for you :)

    Carolyn x

  • Thank you. And I have to say that I'm now able to manage and control my hypo symptoms (which are not stable) because of the support I've had here which is usually very helpful.

  • Yes, Carolyn, absolutely agree, it is very important that the TSH should not be used alone to assess treatment with a "one size fits all" mindset. LizaSahara is surely a case in point: TSH in range works for her, she is also very observant and pro-active. At her TSH level you and I would be half-dead. My TSH is suppressed, I feel fine, but nevertheless have had to beat off attempts by GPs to decrease my medication in order to raise my TSH to what they deem to be suitable levels DESPITE my T3/T4 (synthetics) medication having been guided by Dr Toft, whose "Understanding thyroid disorders" has stood me in good stead.

    The value of combined TSH, T4 and T3 as a diagnostic tool is realised by reading Colin Dayan's paper entitled: Interpretation of thyroid function tests. Easiest access including free printing is by typing in any search engine; Interpretation of thyroid function tests by Colin Dayan, then choosing the link to the Keck School of Medicine.

  • In fact on thyroxine I felt dreadful with a TSH of 0.04 - my fT4 was over range but I felt awful. I feel well with mid range fT4 and top third of the range fT3 but unfortunately i need a TSH of <0.02 on NDT to achieve this. I couldn't achieve these results on T4 only. Xx

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