I’ve seen this on my nhs app after my doctor asked an endocrinologist about my TSH.
Endo reply. If her dose was reduced in May, then I would have expected the TSH to have responded by now.; Therefore results suggest she is still on too much thyroid hormone replacement. Her T4 and T3 can be in; the normal range but are higher than she needs, which is why the TSH is suppressed. The reference; ranges are for the general population, but individuals have their own much narrower range. The TSH is; the best guide of adequate thyroid hormone replacement.; Having a suppressed TSH increases the risk of osteoporosis, arrhythmia's and heart failure long term,; therefore I would recommend and encourage her to reduce the dose further with repeat TFTs 3/12 after; reducing.; (she needs to understand these risks, if not wanting to reduce).
Doctor is calling me Monday it says.
is this true what the endocrinologist is saying?
I’m going to be forced to reduce now.
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Tjqui00
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It's a load of rubbish! The TSH has nothing to do with bones or hearts. This endo needs to go back to med school! Bet s/he is a diabetes specialist who knows nothing about thyroid but think they know everything.
The TSH is most certainly not the best guide of adequate thyroid hormone replacement - especially not at that level. All it tells you is that the pituitary is happy with the amount of thyroid hormone in the blood. But the pituitary is somewhat biased because when there's thyroid hormone in the blood, the pituitary gets served first. So the pituitary can be satisfied but other parts of the body still very hypo. And it doesn't tell you how well you convert T4 to T3 because the pituitary does not distinguish between the two.
The TSH test was never designed to use for dosing. That's just lazy doctoring. It was designed as a diagnosis tool. But even then you need the FT4 and FT3 tested and be guided by them,, because the TSH can be affected by so many things - like the time of day! And doctors never, ever take that into account, so just goes to show you how much they know about TSH.
Also, they confuse the effects of a suppressed TSH due to hyperthyroidism, where the FT4/3 are very high (and it's the high FT3 that does the damage) and a TSH suppressed due to taking exogenous thyroid hormone, where the TSH can be suppressed very easily whilst the FT4/3 remain low.
I have always refused to lower my dose based solely on a low TSH. I do not give a fig about my TSH. It's been suppressed for well over ten years, and I'm still here to tell the tale.
Your TSH is suppressed, yes. But so what? It's suppressed because your pituitary considers that you do not need it anymore. That would no happen if your bone and heart health depended on the TSH. The body would not cut off something as important as that. But it's not important so why continue to make it?
The TSH has only two jobs:
a) it tells the thyroid when it needs to make more thyroid hormone because the pituitary thinks there's not enough in the blood. You don't need it for that because you're on thyroid hormone replacement and your thyroid is no-longer working.
b) it initiates conversion of T4 to T3. I can't tell you if you still need it for that because I don't know what you're taking, nor your FT4/3 levels. But your pituitary has decided you don't.
I don't really know what you can say to your GP, because I don't know your GP. But you could just refuse to reduce your dose. Tell her you're aware of the (imaginary) dangers of a a low TSH and you're willing to take the risk because you prefer a good quality of like now, rather than a possible - but not guaranteed - longer but more miserable life.
I take 100 mcg for 2 days and then 75 on the 3rd day. Ft3 5 (range 3.8-6) ft4 16 when top of range is 18.
I was taking 100 mcg every day up until May I think it was when my ft3 was over range at 6.6 and ft4 was over range. The small reduction seem to lower ft3 a lot and ft4 quite a bit but made no difference to my TSH.
Not really different, no. Plenty of people on T4 mono-therapy have a suppressed TSH. And it still doesn't matter, and still doesn't automatically mean you are over-replaced. And TSH still has nothing to do with hearts and bones.
As you have Hashi's your FT3 going up to 6.6 probably has more to do with your disease than your dose, due to the way it acts.
You were only taking a small-ish dose at 100 mcg but you never absorb 100 mcg. Absorption varies from person to person, but it is never absorbed 100%. And of what you absorb only 30% maximum will be converted to T3. So, highly unlikely that 100 mcg is going to produce an FT3 of 6.6. It's just not logical. Unfortunately, doctors seem to be singularly lacking in logic. Far more likely that you had a Hashi's 'hyper' swing.
But it's really, really not about the TSH. To know if you're over-replaced and need to reduce your dose, you need to look at the FT3 and the FT4. And until they agree to do that, just refuse to reduce your dose. Because it will make you very ill. And for nothing.
It’s my ft3 that was 6.6 not t3. Does that make a difference. I was on 100 mcg then. Now on 100, 100, then 75, my ft3 has come down to 5. Range (3.8-6).
Don’t worry! I’m starting to worry that I do need to worry about my undetectable TSH. It’s been like that over 10 years. The last few years my ft3 and ft4 have been less stable and going over range. They aren’t now though but TSH still the same. I’m so worried about reducing my dose and my ft3 going low range. It went from 6.6 to 5 after just reducing by 100 every day to 75 on third day, so probably only a reduction of 10 mcg or less a week.
No, you don't need to worry about your low TSH, as I explained to you. It's totally irrelevant.
Worrying about being forced to reduce your dose is quite another thing. You don't want to do that. For one thing, it won't raise your TSH so it would be for nothing. It never does. But these doctor damned doctors are so thick they keep trying the same thing over and over again, hoping for a different result. The definition of insanity.
I do not know what else to say to you to stop you worrying about the low TSH. Do not believe their stupid lies. TSH has nothing to do with bones or hearts. It does not cause osteoporosis nor cause heart attacks. And it certainly does not automatically mean that you are over-medicated. You are only over-medicated if you FT3 is over-range - and even then...
Thank you. Do you think my TSH will never come up no matter what dose I’m on? I’m just taking levothyroxine, not T3 medication. I can’t remember now when my TSH started being suppressed. It wasn’t at the beginning.
No, it wouldn't be at the beginning. It would be as your store of T4 started to build up.
It's impossible to say if your TSH would ever come up again. We cannot know these things in advance. But the odds are that it wouldn't after all this time.
However. in 2013, I was very ill - nothing to do with thyroid - and I stopped my T3 mono-therapy. I was off it for six months. After six months I realised I was putting on a bit of weight, so got a blood test. And my TSH was about 45 - it had been suppressed for many, many years - can't remember how many, but a long time. But, it did take six months for it to do that. And I wouldn't recommend that anybody stay of their thyroid hormone for six months!
But, the moral of that story is that you just never know. These things are unpredictable.
Patients with suppressed TSH (≤0.03 mU/L), but not those with low TSH (0.04–0.4 mU/L) had an increased risk of cardiovascular disease (HR 1.37 (1.17–1.60)), dysrhythmias (1.60 (1.10–2.33)) and osteoporosis (2.02 (1.55–2.62)) (34).
On thyroid uk, it said there isn’t a risk. I’m finding it all very confusing and starting to worry more about it.
Do you believe everything you read on internet? I'm sure you don't because you'd need to have multiple personalities to do that - as I once said to a doctor who asked me the same question!
There are a lot of doctors - probably most of them - that believe that because it suits them. They are all for their own convenience and a quiet life. And, once upon a time that might have been the currant general belief. But science and research moves on, and doctors don't keep up with it. We had our own researcher on here: the much regretted diogenes. And he was adamant that low TSH did not affect hearts or bones. And I would far rather take his word for it than that of some obscure sabre-rattler on internet.
My advice? Stop reading. Or, if you really want to do your own research, go onto diogenes page and read all his research. It will be far more rewarding and won't scare you to death!
I’ve just seen that the doctor I spoke to last night has referred me to an endocrinologist and I don’t want her to. She wrote on my notes that my TSH needs to be 2-3 and I need to be on 75 mcg.
Well, that's very wrong for a start. a) nobody has a TSH of 2-3, it's much too high, euthyroid is around 1 but hypos usually need it low because they need their Frees higher than euthyroid. b) she cannot possibly know what dose you should be on - unless she has a crystal ball - because that is unpredictable, which is one of the reasons we start on a low dose and work up slowly. But I very much doubt that 75 mcg levo would be enough for anyone long-term.. I'm afraid you've fallen in with a herd of donkeys there, who know nothing about thyroid!
Well, I only take T4 and my TSH is suppressed and has been since I started on levothyroxine therapy 22 years ago (even on lower doses). I need my T4 close to the top of the range so my T3 can come up to 5.4, only this way I feel well. I have tried to lower the T4 due to my suppressed TSH, but it does not work, the TSH never budges, but both T4 and T3 decline and I feel very unwell. I just tell them that I need this dose (100mcg) to feel well, I do my own testing and they do leave me alone now.
The thing is, in many people with thyroid disease, the TSH-T4 feedback mechanism does not work as it does in a person without the disease. So when you take thyroid medication, your TSH can get suppressed by a lot more than it would, if your thyroid produced it itself - hence your free T4 and T3 should be the guide and not the TSH, as it does not reflect a true status. But GPs and endos do not seem to acknowledge this, and they think that TSH is the only parameter that is important 🤦♀️.
There is a publication, which indicates that TSH should have a supporting role and not be used to guide treatment decisions:
In conclusion, pituitary TSH cannot be readily interpreted as a sensitive mirror image of thyroid function because the negative TSH-FT4 correlation is frequently broken, even inverted, by common conditions. The interrelationships between TSH and thyroid hormones and the interlocking elements of the control system are individual, dynamic, and adaptive. This demands a paradigm shift of its diagnostic use.
Hi, I had the same issue in Dec '24. I currently take t3 and t4 and thanks to advice offered on Thyroid UK, very slowly increased my levo from 75mcg to 125mcg, i was meant to notify gp / endo, which I was dreading but forgot until my endo app.in Dec 24. My tsh is 0.002.My nhs endocrinologist was trying her best to lower my levo, heart/stroke issues etc.
I have followed advice from this forum since diagnosed hashimotos 2020 and I'm feeling much much better for it.
I looked my endo in the eye and very gently stating I'd rather take my chances and not reduce my levo for now.....But my endo said ok and wrote to my gp stating to keep me on 75mcg and retest in 6 months....I have been self sourcing levo so that wasn't an issue. I do hope your appointment is positive and good luck on your thyroid journey 🌸
Greygoose, I support your strongly worded reply. I take T4 and a very small amount of T3, have a very suppressed TSH and am weary of Endocrinologists telling me of the same risk bone/heart disorders. I feel brilliant and even more so since I ditched visits to these specialists.
Well, I very much doubt that's true. The pituitary may not be making TSH anymore but it has a lot of other hormones to make without which you'd be dead.
starts at the end of the first reply from Tattybogle : " To understand why TSH stays suppressed for a long time after an episode of hyperthyroidism/ overmedication, (or ANY T3 use) has finished... "
and is continued in detail much further down in another reply from me : " CONTINUED HYSTERESIS ~ Why TSH remains lower for quite along while following episodes of hyperthyroidism / overmedication .... (or any T3 use) , it is due (at least partly) to a mechanism called 'Hysteresis'.
My TSH has been suppressed over 10 years. At one point I was on 150 mcg. 75 seems such a low dose. I’m not happy with it bringing my T3 down to the bottom of the range which it will and don’t think I believe that’s the right range for me. I’ll probably end up being on 25 mcg to get my TSH up.
The more you are forced to reduce Levo dose ….the lower vitamin levels drop because when hypo we have lower stomach acid and this leads to poor nutrient absorption and lower vitamin levels
The lower vitamin levels are ….the lower TSH will be because low vitamin levels result in poor conversion of Ft4 to Ft3
Don’t let them bully you
If Ft4 and Ft3 are well within range you are not over medicated
As we get older it becomes increasingly important to maintain GOOD vitamin levels
Think I’m going to tell my doctor I’m seeing a consultant under my husband’s private health insurance and maybe they’ll test all my vitamin levels. None of mine when last tested are that good. I thought my vitamin d at 90 was good at the time and my vitamin b12 at a bit under 500 was. I’ve always worried about my ferritin levels. Just hope the consultant won’t also base my dose on my TSH.
Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists
Ideally choose an endocrinologist to see privately initially and who also does NHS consultations so that might eventually transfer to NHS
Test privately via Medichecks, B Horizon or MMH BEFORE any consultation
Down to us as individuals to maintain GOOD vitamin levels
Test at least annually yourself going forward
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 5-7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12 if last test result serum B12 was below 500 or active B12 (private test) under 70:
thanks for this! My tsh has remained at .002 for years now no matter whether I’ve been well medicated or grossly under when on levo only (symptoms low heart rate, cold, passing out every afternoon, constant migraines).
Your endo doesn’t seem to be laying the law down, using terms like ‘encourage her to reduce the dose further’ and ‘she needs to understand the risks’. So it seems to me you would be saying to your doc that yes, you are aware of the risks but are prepared to take them. He can only ‘encourage’ as advised by the endo, nothing more.
I agree with SlowDragon and Greygoose about standing firm. How do you feel on your present dose?
Get all your vitamins and thyroid levels tested before you see a consultant if you do make an appointment so as to not waste time. They can’t give you up to date advice without this.
There are no rct edtablished risk correlation. What they talk to is a vague finding in a poor quality study that suggested an association but not a correlation. I deliberately fudge my blood test to get my tsh to the bottom of the range and keep the nhs away from me.
That is correct. But I reduce my t4 for a month before the test and T3 slightly for a week. I've done various private blood tests to find the t4 and t3 dose and timing that works for an in range tsh. It takes some time and effort but worth it for me to be left alone. I dont tell the nhs this, not that they have ever asked me. The nhs will never deal with thyroid properly and few endo will accept our knowledge as patients. I cant recommend you do this, it's my personal choice. But I do encourage you to avoid the nhs endo, it is rarely about your outcomes as a person and all about t3 cost for ICBs and the NHS.
However your doctor gets ten out of ten for getting the wording so smoothly (as he feels he/she is instructed) to repudiate the patient’s story. So very concerning from any patient’s point of view.
He/she clearly knows nothing at all about this situation. Such truly terrible doctoring. So many of us trapped in their ignorance.
Now the endo has agreed with her, she definitely now think she was right what she’s been saying to me over the years. Wish I hadn’t asked to go back up to 100 now as that’s what made the other doctor say to reduce rather than stay on the same dose.
Yes getting doctors advice can get us in deeper hot water. I went to a cardio because when I tried T3 it irritated my heart condition - I thought! Also thought no other endocrinologist would not take me on because of heart. Since seeing the cardio I have been frightened out of my life. I think I have got to the bottom of what it actually is that is irritating my heart but I am now still apprehensive to go back to T3. However got an appointment soon to discuss with someone I hope knows more than me about this stuff.
I would have been blissfully unaware that I now have terrible CHD. (IMO caused by many years of no treatment for my hypo) if I had not tried to help myself involving doctors.
My TSH has been suppressed for coming up 29 years. The local endo also babbled crap about hearts and bones, and then had to eat his words as my Dexa scan was excellent. I also told him I was not reducing, no matter what he thought, as the first thing he told me was that he's a diabetes specialist, and doesn't know much about thyroid. I told him that was fine, I could educate him, or he could come on here to complete his medical training. It is down in my notes that I feel best with high T4 and suppressed TSH, but the doctors have to argue every single time. Stick to your guns!!
he told me was that he's a diabetes specialist, and doesn't know much about thyroid. I told him that was fine, I could educate him, or he could come on here to complete his medical training.
So sorry to read this, it's very similar to what the endo at the QE told me about my suppressed tsh earlierthis month, not quite as low at 0.05 and I'm on 10mcg Liothyronine. I insisted on a dexa scan last year and thankfully it was better than average for my age but she still won't support an increase. I too asked about research and yet again was told there's plenty out there. I said the research I found was on hyperthyroidism patients not hypo but she insisted it wasn't. All the best with a private endo, I think I will have to revisit one too. We deserve better treatment, I often feel we are neglected compared to diabetic patients, probably due to the pharmaceutical industry.
Just had to pick up your reference to diabetics being treated better… been hypothyroid and diabetic for similar 22+ years, and had problems with both. Only last month saw my first NHS endo. Dr who specialises in thyroid ( with cardiovascular interests), yet despite a rare diabetes ( type 3c caused by routine bile unblocking procedure going very wrong with acute pancreatitis and septic shock) I have never seen a diabetic endo. Dr. , just diabetic nurses whose eyes largely glaze over or look horrified if you ask a question about oddities in your blood glucose levels …so if your bloods don’t fit in ranges/ stats you have to try to get to see your GP to ask! Probably yet another postcode lottery but don’t be kidded diabetics are treated better throughout the NHS!
So very sorry to hear you've had such a rough health journey. I've just based my opinion on well over 30years of nursing. As a practice nurse the drug company reps would try many ways to educate and get us to prescribe their products and I never once had anyone talk to us about thyroid problems or treatment. Hopefully your new endo will help you x
No the endo.appointment was merely to discuss whether I was ‘overmedicated on Levothyroxine’ ( as GP insisting though on private T3 too) and was that giving me high HR ( a consequence of Covid with high BP)? The answer was ‘no’, and dismissed, diabetes not discussed except as throw away remark on leaving ‘ could be result of long having diabetes’….
My TSH of 0.02 has been like it for years....... so long infact that when a drug given by the nhs messed up my thyroid levels it never bunched a nano even when thyroid levels plummeted below range. GP shocked said its broken. I agree. It's taken me over 15months to restore & through out my TSH never moved at all. It's a nonsense all this suppressed TSH with Hypothyroidism. Thyroid hormones are what counts especially T3. I once saw an Endo who was thought to be more enlightened. He said I dont bother with TSH or T3...I focus on the ft4 being in mid range! Unfortunately for me to get my T3 to a reasonable level I need my ft4 nearer the top of the range........so I walked. He wrote some nonsensical letter to my GP....which he then amended at my request. From this you can deduce msny just make it up as they go!
There is no solid body of evidence that proves a suppressed TSH causes osteoporosis or heart disease. It's made up fiction that gets spouted adnauseum. And they then quote each other's fiction. It really annoys me! I recently had a battle with my local nhs Endo over this. He could not provide me with one piece of research proving this let alone a body. This was with regards to ndt. His srguement was the research isnt there because there's too few patients on ndt. I argued back with, so ndt has been stopped for many without the research to.prove there is a need to do so! He had no response to this....
defeated he referred me on.
So stand your ground. Refuse. Say you accept any risk and frankly there is no solid body of good research body to prove it. And see what GP Endo contact comes up with..... All gps have access to a named Endo who deals with GP queries.
It's poor medicine and it's a disgrace it's being applied so widely.
The nhs state of effective and optimal treatment for hypothyroidism is dismal and a total disgrace.
I think I’ll say I’ll accept the risk, but I don’t believe it. I want to stay on the same dose as long as my ft4 and ft3 are in range. I actually thought my ft3 was too low for me and asked to go back up to 100. Wish I hadn’t now. I don’t believe what the endo is saying about everyone is different, as long at TSH is ok, some people may need their ft3 to be low, as long as the TSH is ok. Shouldn’t my TSH at least come up a tiny bit by now. If they reduce it and my ft3 goes to the bottom of the range, I’ll never be able to get them to increase it again.
My husband is worried and thinks they know best and putting myself at risk of heart and bone problems. He wants me to see a consultant. I’m worried they’ll agree as well. I don’t know if here are any consultants just in thyroid problems. When I was first diagnosed over 20 years ago, I saw one who said they go on how you feel, but he wouldn’t be there now.
Most of these Consultant Endos are diabetes specialists not thyroid. So be very very careful who you see if you go down this route. Secondly the nhs applies strict restrictions on what their nhs Endos may ot maynot do. If for advice on levo only it may work. Can certainly offer u the name of one whose based in the south. You'd need to message me as we don't name people on the open forum.
That’s what I’m worried about. My husband says I need to do whatever they say and if there’s a risk with my heart, I have to listen and do what they say. Is this one good? We’re in the south but still may be too far, if I need to see one in person.
I've been through this with my NHS Endo and we have now agreed not to act upon or even discuss TSH readings only fT3&4, what you need to say is that you understand the 'risks' and are happy to proceed keeping your fT3&4 within range 'at your own risk' and this takes any blame away from them and you are able to keep an optimal dose
(she needs to understand these risks, if not wanting to reduce).
I think I need to say I want my dose based on my ft3 and ft4 levels and will have to accept the risk with the suppressed TSH. Just hope they agree to keep me I’m on the same dose at least. My husband isn’t happy though and says I need to see a consultant and then do what they say. First of all he said I need to do what the endo says.
Sorry, but your husband is NOT the patient here, you are. And you know how you feel and what is best for your body. And if you accept the very small risk (if any) with a low TSH but with your T4 and T3 in the right place so you feel good, so be it.
You should not feel pressured by anyone, as at the end of the day it is your decision. What would your husband do if his doctor would restrict a medication that he needs and it would make him feel absolutely awful? Would he really listen and suffer indefinitely? I think not.
Stand your ground to your doctors and your family - it is your quality of life that is at stake.
He’s saying they know best and if I go to a consultant and they the same, then I have to do they they say. Says I should be risking getting a heart problem and drying because I won’t reduce my thyroxine,
But do these doctors really know best? And would you be struggling, if they really knew what is best for you instead of sticking to an arbitrary guideline? And you do not die of a low TSH! Sorry, but your husbands statement is wrong.
If doctors and consultants would know best, there would be no need for a forum like this and no one would be a slave to the almighty TSH. But sadly they do not know and this is why patients remain ill. You can certainly consult with the doctors and listen to what they say, but if their reasoning is not based on logic or sound evidence, then there is no need to follow that advice.
In the end, it is your choice what you decide to do; but I would be very, very cautious following advice that I know would make me ill, just because they are a doctor. They are not gods and do not know everything. And they also make mistakes - big ones.
I certainly would not risk my health and wellbeing on the basis of their thyroid knowledge. If I followed their advice and reduced my levothyroxine due to the TSH, I would be on 25mcg thyroxine by now, seriously ill, with high cholesterol, most likely diabetic and would be not able to function at all. By not following their advice and monitoring my free T4 and T3 levels, I have a good quality of life, I can do plenty of exercises (which actually helps to prevent osteoporosis!), I can perform scientific work and I get some enjoyment out of my life. There are always risks in life whatever you do, but this is a risk I am gladly taking, so I can be well.
As someone replied to me on another forum if the TSH is below their reference interval it’s below the therapeutic range. I think this sounds better than allowing them to refer to below range as suppressed.
Are problems caused by suppressed TSH or high T4/T3? TJR, September 2024
Leading endocrinologists, well-known in UK and abroad, were asked by a co-lead of ITT Improve Thyroid treatment patient group: “Is it a suppressed TSH itself or high/over range T4/T3 themselves that can lead to problems eg osteoporosis or atrial fibrillation?” They all said it is the T4/T3 levels…
Prof Colin Dayan:
"T3 often suppresses TSH. You can take enough T3 which doesn't suppress TSH. But if that's the only way to feel well, you may want to do that, though it's not ideal. It’s a trade-off … low quality of life versus taking a risk. It is a low risk. At the end of the day, it's only T4 and T3 that matter. TSH doesn't matter as it's not acting on tissues. But we use TSH to judge on average what is happening in tissues. It's the levels in the cells that matter."
Zoom meeting
Dr John Midgley B.Sc (Leeds) D Phil (Oxford)
"TSH will often be suppressed when taking T3 because, molecule for molecule, T3 is about 3.5 times as potent as T4 in suppressing TSH."
Regarding possible increased risks from ‘suppressed TSH’ in studies:
“Tiny increased risks at the lower end of the TSH values cannot be distinguished from zero. Respectable statisticians say that anything below 1.3 should be read as no provable effect.”
Thyroid UK HealthUnlocked Forum
Prof Simon Pearce:
"An interesting question and a subject of debate. It's the T4/T3 really, as bones are sensitive to thyroid hormone levels, rather than a suppressed TSH. But a US study showed a fully suppressed TSH can lead to some osteoporosis in mice. You should generally avoid both."
The Thyroid Trust webinar
Dr Anthony Toft, leading endocrinologist, past president of the British Thyroid Association
"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"
Pulse journal
Prof Antonio Bianco, Twitter 2022:
“The problem in every case is an excess of T4 and/or T3. The low TSH levels only reflect the excess of thyroid hormones. TSH has no effects on the heart. Sometimes, the excess of thyroid hormones is so small that the only indication is a low/suppressed serum TSH.”
“Not the TSH. Except that T3 has rapid kinetics; levels change fast, and it is hard to say it is normal. It is high after you take the tablet and lower several hours after. This makes it harder to track T3.”
“TSH is excellent to make the diagnosis of hypothyroidism. But it is not good to assess treatment with LT4. I am proposing that in addition to symptoms and TSH levels, we also consider T3 levels in patients receiving LT4. After all, T3 is the active thyroid hormone.”
Some information that may help. I gave this to my GP, stopped reduction for me.
But a US study showed a fully suppressed TSH can lead to some osteoporosis in mice. You should generally avoid both."
Don’t suppose you know which study this is?
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as…
I love this whole idea and would like to see studies making this distinction. We are not healthy and need different thyroid levels from healthy people to feel well.
Also - our levels reflect exogenous hormones not the biological mechanisms that may cause and lead to low TSH or high free Ts for people with untreated graves that shows the same suppression.
"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.
Tjqui00 although I am on t3, my TSH has also been low ( .08 ) for a long time (diagnosed Aug 22, t3 since Aug 23). I follow these topics as I, like you, need to feel better . But it’s true papers will say it’s ok to that 0.4 level and of course we are one decimal place past that.
Personally I would never reduce my free Ts to try and obtain a higher tsh. I don’t think it would happen.
I reduced my t3 because I had palpitations- so yes I’ll do that.
I’m going to get a dexa scan to look out for osteoporosis. I try every day to walk, stretch, do yoga or something to guard against osteoporosis. I succeed maybe once or twice a week but keep trying.
I have not read anything yet that convinces me that I should try to manage my doses against my TSH.
But yes, there are opposing opinions by the smartest people so we are left to make our own choices and balance kind own risks.
I would say it is right what your Dr is saying. My sister who has to have a suppressed TSH due to having thyroid cancer has been warned of the dangers years ago. Recently she has been admitted to hospital for a stroke and her heart is not in a good way either. She suffers from osteoporosis too now. I try my utmost to keep my TSH just about in range and I take t3 and t4 medications. It’s common sense as a healthy persons thyroid results would never be out of range below or too high. Think about it!
He is talking baloney! They run around in their silos causing havoc for us+don't understand to whom this research applies or that it is flawed and outdated!Doh! 🙄
quality of life. That’s the point the Endo has made. It’s a choice and he’s given you the pathway to respectfully declining the GP’s advice (for now) whilst you consider it. If you simply agree and drop your dose and the TSH still doesn’t shift, what then, another drop? And suppose you also then feel rubbish. How to get your current dose restored to its current level where you actually feel OK?
I hope if I say I’ll take the risk and only want to dose changed based on ft4 and ft3 levels, that they’ll stop going on about the TSH at every blood test.
I’ve saved this thread and so see replies are still coming in. Threads like this are the best of this forum, discussing topics where the smartest and most experienced forum members can share different positions.
If anyone is still reading this far… I haven’t done my own deep dive on this.
But I thought I read somewhere that the risks for low/suppressed TSH largely comes out of clinical cases of graves/hyper.
But not from low/suppressed studied in those on Levothyroxine (and esp not liothyronine/t3.)
That’s a genuine question I haven’t studied. Would value replies of those on both sides of the debate.
I have one too 😁 and it’s a great marriage and he cares for me and loves me and supports me as I do for him.
That being said - I haven’t found one person that doesn’t have our disease, that has experienced just how uninformed (at best) and malicious (at worst) the healthcare industry and doctors are when it comes to thyroid.
It is just too unbelievable. I am constantly jaw-on-the-floor at how incompetent and unhelpful they are at treating us.
And so- I cut my husband some slack. He truly can’t understand that we truly know more than doctors. I mean… who would believe that!
But thank God for the brilliant, thoughtful, experienced and studied patient forum we have here. Thank God for all the reading and documenting and sharing among us so we can make our own smart and informed decisions.
My daughter knows that with the help of this forum I am smarter than my doctors… my husband might be too set in his ways to agree but he knows that this forum has saved my life.
I mean really… who would believe how incompetent our doctors are, but it’s true. Crazy.
We have allowed medics to become godlike. They are now unable to say ‘I don’t know’, - surely the most difficult and yet most evolved thing for anyone to say? We want themto be certain but it’s impossible - as I keep saying, medicine is not an exact science. We have to tiptoe round these gods, trying not to offend them, as we are hostages to our own health and their ignorance.
Listen to greygoose. My TSH has been 000 for years. Try to find out your FT3 result. FT3 is the working hormone that comes from the conversion of your thyoxine which is very slow acting. FT3 works quickly. I would only be concerned if it was well over range and when that happens you usually have palpitations and other signs of being hyper, When my son was hyperthyroid his TSH was 0 also. He lost weight quickly, he was very sweaaty, his head ached and he was miserable.
You could just say that you understand the risks and that will let them off the hook.
Looks very good, maybe perfect for you. Have you looked at others on this forum? I used to watch closely but not for a while but I would say they are more than likely too low, especially FT3 because you all go the same doctor I guess. (joking)
I was just told from an appointment online that my tiredness after reducing my dose is menopause not thyroid related. My own GP wasn’t interested and didn’t comment when I said I felt worse.
Outrageous, what evidence do they have - the menopause is a good catch-all for any symptoms when you are woman. And nonsense. They don’t care how you feel. All they care about is data and ranges. 🥛🤸♂️
hi Tjqui , have a read through this post and it's links : healthunlocked.com/thyroidu... useful-evidence-that-tsh-between-0.04-0.4-has-no-increased-risk-to-patients-on-levothyroxine-updated-new-study-does-show-small-risk
it's a matter of Quality of Life vs Risk , which is a matter of personal choice ( yours, not your husbands , or your endo's , or anyone else's) .... so yes , you want to be on the lowest dose that keeps you feeling well and functional, because slightly too much thyroid hormone is not a good idea long term, so it's a good idea for all of us to try slightly lower doses occasionally , just to check that we really do need 'x' dose, (and we need to be aware that it can take at least 2/3 mths on lower dose to be sure how it will feel)
but , lowering the dose so much that you don't feel/function well ( purely to try and raise low TSH) will increase other risks . Feeling so unwell you spend the next 10 yrs 'mostly on the sofa' instead of walking regularly for example ~ is also going to increase risks for heart and bones.
supressed TSH in someone taking levo does not always mean the T4 / T3 levels are too high for them , it can mean that , but not necessarily , there are other explanations that apply in some cases. Research related to that is here :
Remember, these statistics (at best) apply to the population.
If you take a number people with suppressed TSH (very low), then we might see that taken together, they will have heart and/or bone issues at a greater rate than the rest of the population.
But you cannot take that and assume that YOU will have heart and/or bone issues.
I just don’t know what to do. I was going to say to the doctor tomorrow that I’m not reducing my dose and will accept the risk, but then I’m a bit worried I’m doing damage. Wonder if I should say I’d only reduce t4 if I can have t3 medication but it’s not prescribed on the nhs.
My feeling is that is you can have a DEXA scan (or whatever they call it or similar bone scans), that should identify bone issues. And repeat at sensible intervals.
And a heart assessment might help with identifying heart issues.
My doctor was unhappy with my levothyroxine level because I have afib. But it was when I increased my dose that the extremes of my afib/tachycarida reduced.
But it is very different for me because my TSH, FT4 and FT3 acceptable.
I would choose to base decisions on FT4, FT3, other blood tests (if any), and physical signs and symptoms, rather than on TSH. If TSH is the only issue, then it might not imply anything untoward.
Yes TSH is the only issue now. My ft4 and ft3 were over range and I did reduce very slightly and ft4 is in range -16.5 when range goes up to 18 and ft3 5 when range goes up to 6. Came down from 6.6 which is why I’m reluctant to reduce further. They think my ft4 and ft3 levels need to be low and they is normal for me and then my TSH should come up.
Personally, I'd prefer to be on the same dose every day. I have done alternate day dosing (e.g. 100 and 125 to average 112.5). But I preferred 112.5 every day.
Is it worth considering 87.5 every day?
A tiny reduction AND evening out the daily dose.
This would almost certainly require tablet splitting as 12.5 microgram tablets are massively over-priced.
I suspect you could bamboozle some GPs that 87.5 is 12.5 lower and ignore your current 75 dose. And sell it as a willingness to reduce. But actually be the tiniest reduction you could reasonably achieve.
(Some GPs are appalling at basic numbers. Some are on the ball. This might be hopeless with your GP.)
What should I take daily for that? Just don’t want my ft3 going down any more. They’ll probably say like they did before that it’s not enough of a reduction to make any difference to the TSH. They said before I need a big dose reduction to make a difference.
perhaps , but not necessarily,,, we can't apply statistical risks to an individual .
the cause of the risks for bones and heart is not TSH level per se, it's thyroid hormone levels and whether they are a bit to high for your body's need's , or not quite enough.
'slightly too much' T4/T3 increases risks ,
but 'not quite enough' T4 /T3 also increases risks ,
but you can't just look at TSH to decide if your T4/T3 are a bit too high .... you must look at the whole picture for you personally , how you feel/ function on x dose , how you feel/ function on slightly lower dose ,
there's no point reducing your statistical risk of heart / bone issues by raising TSH, if doing so leaves you too unwell to live as healthy a life as possible ... if you do that you are just increasing different risks .
The endo my doctor spoke to says my range for ft4 and ft3 needs to be in lower end of the range and then TSH should be in range. Not sure I agree with that.
yes well ..... that would certainly be the way to get your TSH in range ... but if those lower T4/T3 levels were then too low for your body to function well , what good would it do you ?
none, you'd be at more risk overall.
and not just 'medical ' risks either , if i lower my T4/T3 too much, i have difficulty crossing the road safely , driving safely , opening tins safely, or climbing step ladders safely .
in the past i've reduced a 2nd time (GP insisted i'd die if i didn't ..... which i knew was rubbish , but my fT4 was very over range , so he did have ground to be concerned )... the 2nd lowered dose left me a zombie / unable to cross road safely , chronically constipated , digestion felt like it had ground to a halt , food just sitting in my stomach like a stone .
at the 6 wk repeat test, i told nurse i'd be putting dose back up a bit myself the next day, regardless of what the blood test said , due to the constipation etc .
as if by magic , GP phoned 9 am next morning and said "ok , i don't want to make you unwell , what dose do you want to take ?' ( yes, the same GP who'd shouted at me to say i'd die if i didn't reduce dose just a few months earlier )
so a) don't assume you know what your GP will do when you push back hard enough ~ they do sometimes cave in if you are confident enough and they know that you have properly understand the 'risks' as they see them .... they can then just tick the box marked , "well i tried, and she knows the risks, so i've done my job ... 'Next patient please' "
b) i now test slightly lower doses out for myself , without involving my GP at all because yes, it's harder to get them to agree to increase again if TSH is already lower than they'd like .
that is normal for me I meant. I think my ft3 coming down from 6.6 to 5 is such a lot with the very small reduction I had (doctor wanted me to reduce a lot more in May). Sorry that I’m probably repeating myself a lot.
From personal experience pressure to change dose can be stressful and stress is not good for any autoimmune disorder. Give yourself some time to consider all the advice by telling your GP that you are grateful for theirs and will consider it but you won’t be making any changes unless and until you experience symptoms of over medication.
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Tyranny of the TSH
Low TSH
