For years I’ve had a suppressed TSH following a trial of T3 probably 5 years ago which didn’t work and I haven’t taken it for around 4 years (need to check my records for exact dates).
My GP has always been fine with it, and even the rubbish NHS endo agreed it would take time to recover - or as I know it may never.
Trouble is, I’ve seen a hormone GP at the same surgery about my HRT, and she’s doing everything she can to reduce my dose of levothyroxine. My FT4 was only 48% through range in September 23, and she’s adamant I should reduce my dose. She’s even sent the results to Exeter hospital for what sounds like a more in depth analysis, and that’s coming back ‘over range’. I’ve got to collect these results from the surgery so don’t know what is over range, maybe FT3 which was always top of range when I tested?
I do take LDN and wonder if that could be suppressing my TSH?
Ive read on here for years about desperate people whose GP’s think a suppressed TSH means reduce your levothyroxine, and now sadly it’s me. My normal GP who has been brilliant for 10 years is soon retiring and I don’t know how to convince the remaining GP that all is ok. I said if she’s worried about my bones to do a dexa scan, and im still awaiting that - no history of osteoarthritis in the family. Then they’re turning to atrial fibrillation. Im not concerned, but how do I convince this GP who is adamant to fight to the end to reduce my levothyroxine?
I’d like some studies to stick under the GP’s nose if anyone has some links please?
Thank you.
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CornishChick
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Until medics accept that FT3 followed by FT4 are the most important labs this nonsense will continue.
Following the initiation of thyroid medication TSH is not a reliable marker....it was never designed for that purpose.
TSH is a pituitary, not a thyroid, hormone it reflects the overall serum hormone level at the time of testing (i.e Ft4 + FT3) but it does not show what is important - the individual levels of FT3 and FT4
If FT3 is low we suffer! For good health every cell in the body needs to be flooded with T3 by way of a constant and adequate supply.
T3 medication will naturally lower both TSH and FT4...it is possible that your TSH has remained low after taking T3.
Having ranted on I suspect you know this already, the whole debacle is rediculous and unfounded!
I'd suggest you need a full thyroid test to include...
TSH, FT4, FT3, vit D, vit B12, folate, ferritin and thyroid antibodies TPO and Tg
My personal favourite is the quote from NICE guidelines which all doctors have to abide by.
The first paragraph in the NICE (NHS) Thyroid Disease, Assessment and Management guidelines says :
nice.org.uk/guidance/ng145
"Your responsibility”
The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian. "
This might be of use, but you'd have to pick and choose. For example, the last sentence of the Results is annoying and over-blown. Yes, TSH rises as people age, but only by a really tiny amount.
Title : Consequences of undertreatment of hypothyroidism
The table giving levels of TSH at different ages and for both genders in the picture of this thread could be useful. Unfortunately, the source for the table is no longer freely available :
tattybogle has written a couple of posts with references that could be very useful to you, on the subject of why doctors should keep TSH low in range :
also this one : 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
Thank you. Mine has come back 0.004 and was sent elsewhere for I believe more detailed examination, and came back as 0.01. My GP surgery results are usually around 0.004 level. I have just put up another post with my blood tests and question as to how the newly examined results are so different from the other laboratory results on the same sample. Any input greatly appreciated.
Is my very suppressed TSH a risk and if so, how do I increase it as my FT4 and now FT3 aren't the best (FT3 previously always been towards the top of range).
Seems I can't use that evidence as my TSH was 0.004 then 0.01 when the same sample was sent off for reanalysis by a different lab? Is my understanding correct? Apologies I'm not very technical and in a bit of a state with it all at the minute. Thank you.
Thank you, I am very grateful for your input as always. I can't see much on quick glance confirming that suppressed TSH is okay? I thought it was from what I've read on here. This seems to talk about very low TSH, but not very suppressed. I am missing that bit?
you won't find anything anywhere saying 'supressed is ok' . because it is a fact that statistically, increased risks are associated with totally supressed TSH .... however most of the studies used as evidence for this do not have information on T4/T3 levels, so a lot of the increased risks found in those studies could be to do with high T4/T3 levels, rather than low TSH per se.
However , there is one which Prof Bianco recently claimed does show that low TSH in isolation IS a risk factor even if T4 is in range (see "update " on that post i just linked to).. personally i don't think it proves that case because we don't have access to all the details of that study yet)
There is no single study you can give a GP to prove supressed is ok for everyone .....it's more case of using these references to make your point that :
~ some individuals clearly need TSH lower than others in order to function well.
~ that TSH as low as 0.04 is widely accepted in these papers to be 'not a significant risk'.
~ that any increased risk of future problems associated with low TSH must be balanced against your quality of life now ..... just as it is for all other medical decisions, GP's routinely prescribe drugs with an increased risk of 'xyz' in order to improve quality of life.
~ and most importantly, getting the individual GP concerned to accept that you have fully understand that there may be some increased statistical risks with running a supressed TSH , but that you are fully prepared to accept those increased risk in order to give you an acceptable quality of life . ( they can then record this on your notes , this takes the responsibility off them to some degree, and they are more likely to come to an agreement to allow a supressed TSH on an individual basis )
Ok thank you, I really appreciate your help. I’m wondering what I should do if my TSH is more suppressed than these studies, but my FT4 and FT3 aren’t great through the range.
I’ve just reposted my results and they’ve tested the same sample in a different way. I’m really confused whether I should just accept the levo dose lowering after seeing no evidence that my very suppressed TSH is ok?
have you tried a lower dose previously ? ( how long ago?)
often the best way to deal with this issue with a new GP is to take the hit once, to prove the point ... agree to try a slighly lower dose for 3 months ... if it leaves you feeling worse and with ' accepted' symptoms of undermeducation (eg constipation) then you have a MUCH stronger argument for having the higher dose re-instated.. and more likely that GP will decide to ignore the low TSH in future and not bother about it again ( as your last GP decided to do ) .
you DO have good grounds for a 'discussion' about the variation in these fT4 results from same sample .. they can't both be accurate. Ask your GP to read some of these ...
there are big issues with variations in fT4 testing ... it is NOT an exact science . so a one off fT4 results by itself should not override other considerations ... like symptoms / ability to function well.
Apart from one obscure result, my FT4 has always been within range, my online results go back to 2015, I've got written earlier results somewhere and I never remember being above range.
I have recently spoken to my GP about my ongoing tiredness, which I thought was in relation to low cortisol. I have never had any of the usual hyper symptoms discussed here, he knows this.
The only thing I've changed this year is starting HRT due to low testosterone. Could that have caused my FT4 to mysteriously jumped above range?
Estrogen does have a relationship to 'free' and 'bound' thyroid hormone levels, so it may be relevant .
Estrogen level directly effects TBG levels produced by liver .
(TBG is Thyroid Binding Globulin.. it is what binds some of the T4 and carries it round in the blood as a kind of long term store ).
The more TBG there is .. the more T4 is 'bound'
Total T4 test measures both the 'bound' and the 'free' T4 .
Free T4 test only measures the 'free' .
However this wouldn't explain your fT4 going higher since HRT ... if you raise estrogen (and therefore raise TBG) you would expect the opposite effect ... a lower Free T4 ( because more of it is 'bound' )
Some forms of HRT can lead to a need for a levo dose increase due to this effect , (and conversely when HRT is stopped, a levo decrease may be needed) but *note ~ that information is based on older forms of HRT .. some modern HRT's with much lower doses of estrogen may not have this effect .
~ question the over range fT4 result , (on the basis that if the lab industry and doctors can't get it together to standardise their testing, then it's not good evidence of anything . certainly not a 'one off' result like this.
~ negotiate a repeat test in 3 mths ... (preferably using both tests again for comparison)
~ depending on results , consider trying a lower dose of 112.5mcg for 3 mths ( at a time of YOUR choosing)
Don't be too fixed in your idea's about what is a symptom of over / under medication . Slight overmedication may make you feel horribly tired and stressed , but without showing any of the really classic signs of hyper. eg when i was overmedicated (and improved on lower dose) my heart rate was not remotely fast.
Whenever blood results arguably suggest overmedication, then i would say it is always worth trying a slightly lower dose occasionally , especially if you don't feel 100% .... just to see the effect on how you feel . The thing is to try it at time that suits you , rather than having the experiment imposed from on high by a panicking GP ... after all , even of you are slightly overmedicated , it;s not going to cause you to drop dead in the next 3 mths ...
Once you have tried it you will know for sure if you felt better or worse on slightly lower dose and will be able to advocate much more strongly for yourself in future based on facts of 'what happened last time we reduced', rather than having to rely on papers to try to prove an abstract point about statistics from the rest of the population .... who are not you .
Thank you so much, exactly what I needed! I have to go back to my GP with my Dexa scan results in a few weeks, so will do this at the same time.
Just out of interest, will my low vitamin D levels (22) affect my Dexa scan. Found out 5.5 years ago, suspect I had it over 13 years ago when my first child was born as the dentist recently (finally) confirmed vitamin D deficiency in the womb. Second child now 8 the same. Realised on here the actual D doses I need, went gluten free which fixed my dodgy gut overnight, and now my levels happily lie around 100. Am just paranoid years of deficiency will show on the Dexa scan, then the GP will say, told you so, your suppressed TSH has wrecked your bones! No history of osteoporosis in my family btw.
That is always the risk with having Dexa's ... there are so many other potential causes of ostoeporosis, but they would blame a low TSH if it suited them .
Not that most doctors would ever understand or agree, but the TSH´s role is not to react to one single dose of thyroid hormone being absorbed from your GI tract. Its role is to react to the tiny amounts of thyroid hormone secreted by your thyroid gland day and night. When you take your hormones in a pill, once or twice a day, you get more in one go than you would if your thyroid gland was healthy. So, the TSH is there to control the hormone production of a working thyroid gland. Once you take a pill to replace the hormones, the TSH is bound to go down. My own experience, and that of many others, is that the TSH is the hormone that least correlates with symptom-relief. I think that, in order to maintain a "normal" (in-range) TSH at all times, you need to underdose patients, leaving them symptomatic. Of course, most doctors then say that any remaining symptoms are not thyroid-related as your TSH is "normal", which solves their problem...but leaves the patients struggling with debitating hypo symptoms.
In the +20 years since I was diagnosed, I have "fired" several doctors for refusing to accept my suppressed TSH. A few years ago, I gave up on doctors and am now self-medicating. I reached a point where I simply refused to pay for more tests, knowing that my TSH would come back suppressed, only to be told to lower levothyroxine. I decided I´d had enough. I wish it did not have to be that way, but doctors comfortable with a low/suppressed TSH are rare in my experience.
I sort of said similar to my doc, that if we have a detectable TSH then surely that means we’re under dosed because our pituitary is still trying to get the thyroid to make hormones. It was ignored.
Thank you. It seems I'll have to do this as my usual decent GP is retiring. I wonder if you could PM how I self source levothyroxine please? Or if anyone else has sources, please do let me know. Thank you.
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