I have been taking Levothyroxine for many years and my dose has been 125 for a very long time. A recent blood test showed my TSH as 0.26 (0.27- 4.5) my GP’s receptionist told me that my results were normal. They don’t test T3 or T4 That’s a lot lower than my last blood test (1,1) which incidentally was 18 months ago!
I don’t go to the surgery very often and don’t find it easy talking to the doctor. It would be good if I know what I should be asking for and I was wondering if I should ask if my dose should be increased or decreased as I don’t think the results ought to be classed as normal. I have started to have a slight fluttering feeling occasionally and wondered if it’s anything to do with the Levo I’m taking.
I am b12 deficient and after lots of pleading I’m able to have an injection every 8 weeks, I have arthritis and my neck and shoulders are very tight. I also suffer from reflux I am 77 years old and part of the generation who don’t feel comfortable disagreeing with doctors, I wish there was somewhere you could go to talk about all these niggly things that start to happen at my age. But nobody has time to listen.
Thank you, you have been very helpful in the past.
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RoniB
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To make a proper assessment of your thyroid levels you need 3 tests - TSH, FT4 & FT3 to see if you are converting Levo to the active hormone T3. Unfortunately the NHS does not realise the importance of this and so many members here pay for private blood tests to see these results which in turn can point to what will help them feel well.
Do you take any other vitamin supplements?
When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins. Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/help-and-supp...
There is also a new company offering walk in & mail order blood tests in Crawley, Hove and Reigate areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...
It's ideal if you can always get the same brand of levo at every prescription. You can do this by getting GP to write the brand you prefer in the first line of the prescription. Many people find that different brands are not interchangeable.
Recommended blood test protocol: Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the blood draw & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process)? Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day. Taking Levo just prior to blood draw can show a falsly elevated result and your GP/Endo might change your dose incorrectly as a result.
thank you Jaydee 1507. That’s a lot of information. I will try to follow up on those points. My blood test was in the afternoon but I did know that I shouldn’t take the Levi for 24 hours before.
I should know this but if my TSH is low does that indicate that I need more or less Levothyroxine? My doctor rang me a few weeks ago to discuss my prescription and randomly asked me if I wanted him to increase my Levo but that was before i had my blood test and I just said I don’t think so thank you. It was a bit strange, I’d just like to have a bit more info before I talk to him.
See if you can get your GP to do the vitamin blood tests. If you have a helpful GP they sometimes will which would save you money.
Your TSH is just under the lower end of the range and many GP's would want you to lower your dose because of this. Depending on how you feel you could do that but just a 12.5mcgs reduction may make all the difference. It's hard to tell what to do exactly though without the full picture of TSH, FT4 and FT3.
As we get older our absorption of vitamins is reduced. That coupled with the low stomach acid from being hypo can give many symptoms, so testing vitamin levels is really important. Then we can supplement to raise levels to optimal.
if my TSH is low does that indicate that I need more or less Levothyroxine?
It doesn't indicate anything at all. It isn't even a thyroid hormone. It's a message from the pituitary to the thyroid to make more or less thyroid hormone. But, when you are on thyroid hormone replacement, that feed-back loop - as it's called - doesn't work very well any more, so the TSH is a very poor indicator of thyroid status. You should never alter your dose - nor allow your doctor to do so - soley on the basis of a TSH. Especially as you had your blood taken in the afternoon, when the TSH will be lower than early morning.
I'm 78, and I'll argue with any doctor that I don't agree with. They are ignorant about thyroid and should not have so much power over our health and lives when they don't know what they're doing. Stand up for yourself, it's the only way to get well!
thank you Greygoose. I will talk to my doctor. The trouble is I don’t have much faith in him. I did have a huge ‘discussion’ with him some time ago when he refused to continue B12 injections despite me being called in initially for loading doses, saying tablets would do. I actually quoted NICE guidelines to him about needing to continue them and he said “oh that was said by one very silly man “. I’m afraid he lost all credibility for me after that. However I did persist and and I’m now allowed to have a B12 jab every 8 weeks. I mention this to show how difficult it is to deal with my GP
I’m seriously considering moving to another practice but I live in a village and it’s not easy.
Very few doctors have any real knowledge of thyroid or nutrition. They just don't learn about them in med school. When I had low B12 a doctor told me 'it's only a vitamin, it's not important'. Sigh.
I love how feisty you are @greygoose. You are so right. We have to stand up for ourselves. We have to learn and we have to be forceful and, if we can afford to, we have to pay money to get what we need in many cases.
I wish my mum was more like you. At 88 she's always been a total push-over for GPs. They can tell her anything and she'll believe them. I can tell her things that I've researched for years and she won't believe me because "they are the doctor and they know best". Needless to say, I'm not very like my mum!
There are so many people like that, believing any rubbish the doctor comes out with. I've had the time to study them at close hand - I could easily get a doctorate in doctoral behaviour! 🤣 Sometimes, if you look at their eyes, you can tell they're making it up as they go along because they have no idea of what they're talking about. Ask them the same question on two separate occasions and the odds are you'll get two entirely different replies. They are rarely able to say they just don't know.
It breaks my heart when I read about people being wrongly treated because they believe doctor always knows best. Happened to me this weekend and it really made me depressed. They are not gods!
At the risk of boring you, I'll repeat that wonderful old joke: what's the difference between God and an endocrinologist? God doesn't think he's an endo. 🤣🤣🤣
I’m certain my doc makes it up as he goes along. The absolute rubbish he’s told me over the years is truly unbelievable. I think he looks at me and sees a little old white haired lady who’s a pushover and he becomes really irate if I dare to disagree with anything he says.
I would believe it - I've experienced it! But even when I was young, and strong and - to all appearances - healthy, and I took my children to the doctors. The main 'diagnoses' with them was that they were: being naughty/attention seeking/trying to get out of school, and that I was a neurotic mother! You can't win whatever your age.
your TSH level is not irrelevant and it continues to have important functions and implications when we are being treated for thyroid issues and since the NHS puts so much store by it we should engage with that at face value even if we know they are negligent to exclude t3 and t4 from the blood monitoring.
Your TSH is probably too low. It shows that you may be over medicated on t4 and this is hijacking the body’s normal emphasis on t3 levels in TSH feedback. Too much T4 particularly in single daily dosing is known to suppress cellular T3 conversion. Normal healthy TSH is around 1 and may fluctuate between 0.5 and 2.5 with normal 24 hr circadian rhythm. Individuals may be outside that range but 80-90 % of people without thyroid pathology fall into that range. TSH does several other things around the body and even on levothyroxine it responds to T4 and T3 levels so has some indicative value albeit requiring more expert interpretation. For example excess t4 can both suppress TSH and t3 so one could use that information to actually reduce t4 dose to get TSH around 1 whatever time of day you test it! Yes this may drop your T3 slightly but it may not and this is why it should be tested at the same time. If you can’t get normal levels of t3 with TSH about 1 then you likely need t4 plus T3 replacement. At the very least you may need to split your levothyroxine dose into two, at bedtime and waking, which will reduce the risks of excess t4 2-3 hours after the dose limiting t3 conversion.
And as most others say here you absolutely need to test TSH t4 and t3 at the same time every time!
rather than get it third hand from me please try searching ‘extra thyroidal TSH receptors’ or similar phrasing and other related TSH functionality links on the internet. Some publications are not fully public but the abstracts are.
Easy way out. But, there's also plenty of evidence on here that TSH doesn't have any important functions apart from stimulating the thyroid and initiating conversion. The hormone expert I saw told me the same thing.
it’s not an easy way out it’s the straightforward absence of interpretative bias way forward.
Often the more complete picture needs a significant amount of self directed investigation online or wherever because individual opinions, which may even be based on the same literature and data, often vary.
One thing for sure, the NHS operates on a TSH led analytical basis and so it is useful to be able to engage with that to secure normal TSH levels modulating t4 and t3 by replacement hormone prescription of both t3 and t4 where necessary.
Consequently TSH has absolutely vital function in thyroid management if only because that’s what every clinician and researcher everywhere has regard to.
But we all know that the TSH can be low - even suppressed - but the FT3 too low for good health. So, are people really supposed to sacrifice their health and well-being just to satisfy the unfounded beliefs of their doctors? Or are they supposed to fight these myths and regain their health? Many of us live very well without any TSH, so it can't be that important.
We don’t know the consequences of suppressed TSH, albeit possibly only sub clinical or non critical. For sure it’s not optimal.
And my point is not to be a slave to TSH but to use it to guide and inform and make the case for supplemental exogenous T3. I am saying it’s not irrelevant and probably essential to consider in context of all other parameters.
I'm really not sure what you're saying anymore. But, I maintain my opinion that once you're on thyroid hormone replacement - and sometimes when you're not - TSH is irrelevant. After all, it does depend on the good health and efficacy of the pituitary, and that is not a given.
but for most people it’s vitally important, as a biological marker if nothing else. There’s absolutely no clinical ruling anywhere that states TSH is irrelevant. So perhaps it’s irresponsible to suggest otherwise. Yes it has different perspectives under certain very specific pathologies or conditions or individuals but for most people it’s very relevant. The devil is in the detail.
Thank you so much. I’m definitely going to ask for a complete test next time. On the phlebotomist form it simply said thyroid function. I’m going to get a print out of my result just in case the receptionist at the surgery didn’t give me the full information, even though I did ask. There were no other tests done this time, the thyroid function was missed from my blood test in November and the doc noticed that when he phoned me for my annual meds review. At least he did that !!
……and if your health trust/gp is anything like mine they seldom do more than test TSH sometimes T4 and almost never TSH. I use the fingerprick blood test at home service provided by my local hospital in Exeter. It’s a postal service so anyone can get it and it’s done by an NHS lab so no rubbishing the results by sniffy GPs! The thyroid function tests are reasonably priced and quick to report. But you do have to get blood out of a stone (finger or fingers) but you do get a few stabs at it and can do it any time of the day that seems best for a good result and your convenience.
You can't assume her TSH is too low without FT4 and FT3 results from the same test. My TSH does not behave as it should. It is not a reliable indictor of anything. It doesn't seem to be able to "see" hormone in my blood very well. No idea why. I can only go off the Free Ts results. Yes TSH can help with conversion, but it can't be taken as gospel that this lady needs to reduce her dose without seeing the other results.
why ever not? TSH is an absolute value. The interpretation comes from regarding it among all the other relevant parameters. Of and in itself it’s abnormally low. That is useful information because alongside other blood markers and symptoms it has diagnostic potential, which could be anything from excessive T4 to a pituitary issue and many points in between. Making a diagnosis from that alone is foolish. Saying it’s irrelevant is also foolish because for most people most of the time it’s highly relevant; or the entire global medical profession and research teams would be saying so and ignoring it.
I certainly wasn’t drawing an absolute conclusion from the posted results because as you say and as I said, they are incomplete. I was however postulating what the result could mean, alongside the other critical indicators.
Hi RoniB, I went to A&E last year with what I thought was my normal palpitations but they said it was AFib, I was on large dose of steroids at the time which could have caused it but when they looked at a recent blood test where my TSH was 0.21 they immediately dropped my dose thinking that was the issue, right or wrong they do not like anyone with a low TSH if only on T4 . Do not worry too much but mention your fluttering to your GP as ectopic heartbeats are a classic sign of palpitations which are mostly harmless.
Think of Thyroid Hormone(T4/T3) and TSH (Thyroid Stimulating Hormone) as sitting on opposite ends of a See-Saw .
When T4/T3 go Lower .. TSH goes Up .... so Dose of Levo (T4) is then Increased.
When T4/T3 go Higher ... TSH goes Down.... so Dose of Levo (T4) is then Decreased.
Sounds like your Doctor has seen results and has said they are ok to continue prescribing 125mcg because the TSH is only very slightly below range ......if it was much lower than that they would ask you to reduce your dose.
( it's odd they asked if you wanted more , but as that was before the blood test they won't have known your TSH was so low when they said that )
but.... If you go and ask them now (especially if you mention feeling fluttery) they will almost certainly suggest reducing your dose .
As others have said, TSH alone does not give you all the information, and we know it was tested at the time of day when it was lowest anyway ..... but it is a useful clue . and if it's all you've got to go on , then it does have it's uses.
Did you feel better 18mths ago when your TSH was 1 ? .. has your TSH usually closer to 1 when you've felt well ? ..if so, it's possible your lower TSH is indicating your needs have changed and that you don't need quite so much levo anymore.
You don't actually need to see the Doctor to try a small dose reduction.. you can just try it yourself for 6-8 weeks to see if it improves how you feel .
if you decide to try it , then only make a very small reduction , eg. to 112.5 mcg .
To get 112.5mcg you can either take 100mcg one day/ 125mcg the next (alternate days) , or you can cut a 25mcg in half and take 112.5 mcg every day . whichever you prefer.
They don't usually prescribe the 12.5mcg tablets anyway , (they are very expensive and are only made by Teva , a brand which some patients don't get on with anyway) so if GP's want to prescribe 112.5mcg they usually prescribe '100/ 125 alternate' .
(i take 112.5mcg, and i prefer to take the same every day as it's easier to remember , and i can feel the difference in doses if i alternate , which is a bit unsettling)
The problem with letting the Doc lower the dose is that if you feel worse on lower dose , you may have a bit of a fight on your hands to get them to put it back up (they don't like allowing low TSH in 'older' people) , so personally , i'd just try it myself , that way if you feel less good on a lower dose , you can just put it back up, to 125mcg without any hassle.
Also, Doctor may adjust dose by too large an amount, some of them are a bit heavy handed .... they will often reduce by 25mcg at a time just because that is what size the tablets are , but very often a 12.5mcg adjustment is all that is needed. , if you end up undermedicated on 100mcg and then have to go back up to 112.5mcg it just wastes time.
If you do try a lower dose , give it at least 6 weeks before you decide how it feels .. in my experience , you can expect to feel a bit undermedicated for the first 3/4 weeks until the body adjusts .. so give it time .
you can always tell the GP later if you want to ...and after 6 weeks you can ask them for a repeat blood test on lower dose.. (they won't object to you having lowered it yourself because it's what they would have done anyway if you'd gone to see them)
Thank you very much. I’m going to reduce my dose. It feels instinctively that it will help me. I will cut out the 25 tablet every other day to start with - I can always cut the 25s in half if that’s easier. I don’t get on with Teva at all. I’ll give it six weeks and see how things are then.
I just looked back 18 months in my diary and judging by all the things I was doing I was feeling pretty good. I’m really into crafts including glass fusion and I was really busy making and selling at crafts fairs at that time. So that was a really good question tattybogle 😆. I haven’t felt like doing much for a while!!
Thank you everyone SO much. It’s so much more complicated that I thought and I have so much to read and absorb. I hope I’m right in assuming that if I reduce my dose just a little I won’t be doing any harm . The NHS isn’t helping us in lots of ways so we do need to take charge of our own health to a certain extent.
All of your remarks do point to the inescapable view that it’s our body and we have to fight to get what we need.
I will reply to each of you - you are an amazing group of people and it’s so good that we have this forum to ask for help. I feel so much more positive and determined to get the support I need.
I feel guilty not adding that I am indebted to the NHS for the care and expertise I received 10 years ago when I had my right kidney with a 15.8 cm cancerous tumour removed. My surgeon was a miracle worker and I guess we have to conclude that the G in GP does mean GENERAL - but we should still expect a proper standard of care.
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They are not gods! 
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