The British Thyroid Association and the Society for Endocrinology have published their latest consensus statement on the use of liothyronine.
The thyroid groups are now working on a feedback document because we have concerns about the impact on thyroid patients of some parts of the guidance. You can read the statement here: onlinelibrary.wiley.com/doi...
This is horrendous and I cannot believe they are starting a witch hunt all over again.
There is no mention of patients with no thyroid, so, I assume I can go on with my combined dose of T4/T3 and all will be well but somehow I doubt it.
I cannot believe that they haven’t got something more important to do than harass thyroid patients. What does everyone else think?
they would presumably still be trying to get the thyroid-less off T3 and back onto levo only , but at least they are unlikely to make you lot prove you are overtly hypothyroid before they even let you try it . (' one hopes that 'total thyroid removal' by definition would classify you as 'overtly' hypothyroid ? .. hopefully )
it looks pretty rubbish for patients originally diagnosed with subclinical hypothyroidism .
the consensus statement only appears to support trials of T3 in patients with confirmed evidence of overt hypothyroidism .... TSH over 10 (AND fT4 under range ? ) ...... so anyone diagnosed and given levo before they ever got this bad , their endo is supposed to 'prove it' by taking them off levo for [edit] 6 weeks* and see if they get sick enough .... ie. get TSH over 10 .. (and potentially fT4 under range too.. not very clear about that bit )
The 'reasoning' they use to support their implication (in section 3.1) that it's unrealistic to expect most patients with subclinical hypothyroidism to feel much better with any sort of thyroid hormone replacement (whether that is levo or T3 )... is totally unreasonable in practice because :
a) they say hypothyroidism can potentially be inappropriately diagnosed if repeat TSH isn't done .. but which patients is this meant to apply to ? ...... NHS own guidelines very effectively ensure anyone with NHS diagnosis/ treatment for 'subclinical hypothyroidism' must have had already had a repeat over-range TSH ..... (unless they are suggesting that significant numbers of their NHS GP 's routinely aren't doing their job properly ?)
b) they point to Levo trials in sub-clinical older people having not much effect on improving their Quality of Life .... is that the best they can come up with ? .. i seem to remember that particular trial was doomed to failure due to grossly undermedicating them all anyway , and they were ..... forgive me ..... really quite old .... so lots of other conditions are highly likely to have confounded their Quality of Life issues anyway .
So someone like me ( diagnosed by NHS aged 37 and given levo with TSH 5.7 /6.8 and TT4 was about 29% in range , no fT4 done , with TPOab >3000 ) ...... is not apparently to be considered for a trial of T3 according to this latest consensus, unless i first agree to be made very unwell/ non functioning for [edit]6 wks by withdrawing all my levo suddenly in the hope that my TSH does go over 10 and my T4 goes under range ? .... i don't know if it will or not, it might .. it's gone up to 7.89 once when i stopped levo for about 2 weeks ... but i REALLY do NOT want to find out how i'd manage if i had 6 wks (or longer) off it ...... i'm dangerous crossing the road and can't drive safely after only about 10 days off it ...... and if i did agree? , and if my TSH obligingly went over 10 ? ........ i suspect i would be in no fit state at that point to make the most of a trial of T3 if it was started then . . i'd expect to be feeling generally off balance symptom wise for the next 2/3 months, whatever you gave me.
Jerking someone's thyroid hormone levels about suddenly and dramatically like this is not the behaviour we ought to expect from allegedly intelligent endocrinologists who are supposed to understand the finer workings of HPT axis, and the meaning of the word 'homeostasis' .... it's the kind of f**kwittery i might expect from an uninformed/ overly gung-ho new patients . or GP's who have very little real life experience with treating actual thyroid patients .
Oh Bravo Tatty! ~That's all I want to say~
It goes to prove a point tattybogle, I myself were put on T4 after full thyroidectomy, I have gut issues with both T4, T3 but going on T3 is the only way I managed to get my T3 up, it was always dire on T4. 2 years of sheer hell, bad blood results and all the so called professionals did was scratch there heads as to why my bloods were so bad on T4, until I had a TSH of 12.6..T3 1.5 then the endo wrote telling me (during covid no face to face, which probably worked out better for me👍) that maby I would fair better with a trial of T3 😯 since being on it my T3 is always well within range now , but TSH was 0.05 at one point prompting the gp to say I was over medicated 🙄.
My last bloods look good.. Although I don't feel good... Gut issues persist,😔 having good thyroid hormone levels is great on paper, If you yourself feel good... Truthfully it's not all about the levels... Its also about how we feel.
In my experience since loosing my thyroid I've found gps/endocrinologist to be more fixated on our blood hormone levels my impression is from them... Your thyroid bloods are in range, you can't be having symptoms it's not possible with your thyroid levels🤷♀️ be that hyper or hypo, and I feel we are not even second or third class citizens in our thyroid illness, why are we not classed as important as diabetics?
As one member pointed out, they wouldn't treat a diabetic this way... So why do they treat us with such contempt, that report isn't worth the paper it's written on😠
Yes I'm a type 1 diabetic and am appalled by the attitude of endocrinologist and gp . Neither seem to know or care too much about the thyroid and the complications that can arise due to undertreatment. Sickened by it.
I have I friend who's type one diabetic also, I sometimes see her for a chat, when she got diagnosed way before I got diagnosed with graves thyrotoxicosis, she told me she had great care, saw her gp anytime, had regular blood tests, and health checks, we have a diabetic clinic next to my surgery which she goes to once a month. The last time we spoke I told her of my thyroidectomy and what happened to me, she went on to tell me her older sister as also been diagnosed with an overactive thyroid (with a goiter) but the gp is just giving her anti thyroid medication and beta blockers, this has been going on for around a year and her sister as had to give up her job because she feels awful😔
She can't believe how her sister is being treated compared to her!
But hey... That's what we have to go through with a thyroid condition... And it stinks the gps and endocrinologists should be brought to task over this, I've tried myself but we're asked to leave one appointment with an ignorant gp, and the dodos just look at you like your scum.. How dare you question me!! 😠
I couldn't agree with you more. After my TT many years ago I was dosed with T4 only. I was miserable. I had palpitations and Dr's were very aware of it . But yet never thought that adding some T3 to my T4 dose might just resolve my palpitations. After joining this wonderful Forum and and reading more about my journey. I learned that I was not a good converter T4 to T3. After adding some T3 Thankfully my palpitations and many other issues resolved with adding T3. T3 was a *Total*game changer for me. Why would any Dr deny patients well-being???? After all Healthy thyroids make T3 and T4 and more.
You’ve really said it all there Tatty! I would also add that these idiots who call themselves endocrinologists should really not be surprised at all when us patients, even with the useless shrivelled up remains of a thyroid gland left in our throats, ignore their “expertise” and source our own T3! They all stress that it should be a joint decision between doctor and patient, so I for one will flatly refuse any interference with my T3 dosing! This whole sh*tshow clown crowd can stick its “consensus statement” up their own pretentious fundament where the sun don’t shine!
Honestly tatty I am thinking more and more along the lines of Human Rights issues.
Hi Tattybogle, I really agree with you on this but do have a tiny spark of hope. I did have to give up my Levothyroxine to get considered for T3 and my TSH was over 95 (95 being coma level) - the good news relative to your post is that I was given T3 there and then when I saw the endocrinologist and felt better immediately. It didn't relieve the classic symptoms (though it does more so now) but from that day I have never had the stomach pain I lived with and various other symptoms eased very quickly. I still do agree with you though that one shouldn't have to go through this.
Ir's annoying when we are given stupid comments by stupid 'medical professionals.
My TSH was 100 and I was told I had no problems.
I have also had more stupid comments and I told them they were wrong.
I am fortunate that there is now a very good doctor in the Surgery and he knows how best to treat hypothyroid patients and has adjusted my dose. I feel welll andl have no symptoms,
These documents are shocking, full of bad science and assertions that are not backed up with evidence. There appears to be minor changes from previous versions along with phrasing that is designed to confuse GPs and make prescribing even more difficult.I will study it in detail and send you a brief email.
This is thoroughly depressing & not surprising to me in any way. EXCEPT, I have seen one of the authors & he is dead against T3, so I am quite surprised to see his position has moved very slightly. He told me T3 was ‘very dangerous’ !! Other than that it is the usual NHS guidance, although I notice they have not included the evidence regarding T4 & increased cancer risk.
Is it the cost of T3 that makes the NHS so anti prescribing, even though I know its come down a lot compared with a year ago or so, or a stubborn pigheaded refusal to acknowledge that not everyone does well on Levo alone.
Are they so entrenched in their views that they wont consider the possibility that maybe some patients have better outcomes when on combined therapy, or T3 alone? I'm curious about why T3 is so controversial.
I wonder if they consider withdrawing insulin from diabetic patients just to see if they were "ill" enough to deserve it in the first place. Not blooming likely. Happy to play God with hypo patients though.
The cost might have something to do with it in the UK. But in countries where T3 is very cheap - like France, where I live - it's mainly ignorance. They just don't know what T3 is or what it does. And, given that they are scared rigid of hormones, anyway... They just don't learn much about these things in med school. And, what they do learn seems to be all negative.
Oh, I put that diabetic theory to the endo I saw (in England) who wanted to take my T3 away from me and he told me that my T3 wasn’t a matter of life or death like the insulin to a diabetic. I told him he was wrong and further told him I was in Wales where he had no jurisdiction so he signed me up for another year’s prescriptions!
The 'supposed to be experts' make us furious by their stupid comments and they still have their thyroid glands. Maybe it would benefit us if they have their thyroid gland removed - given no levothyroxine and tell them that if they wish to trial liothyronine it will not be prescribed due to its cost!
Is it the cost of T3 that makes the NHS so anti prescribing
I'm sure you're right. What I can't understand is why the NHS doesn't seek another supplier, or preferably three or four new suppliers. It is the NHS's choice to buy T3 from expensive suppliers.
I worked for a while in the NHS. Before that I had great respect for the NHS. I still have huge respect for what was brought about by the people of this country. It could not be duplicated today. However it’s old fashioned, unstable and run by people more interested in their careers than care for patients - and clearly the same at least in endocrinology. However ‘they’ are not the only people who have a huge say in how it is run. Working in it was a dreadful let down. Feet of clay as they say. This paper has its feet cast in concrete, never mind clay.
I think that they don’t see treating us as ‘playing with fire’ as obviously it would be with diabetics. Frankly it’s likely to take long enough for most of us to die (being unable to fight back) for them to get away with a clean pair of heels. They just don’t live in the 21st Century where ‘quality of life’ (personally for me and many it’s much more than quality of life but that’s the in vogue phrase) is considered to actually be a real issue!
I have actually asked my endocrinologist to confirm that she is c in fact an endocrinologist an d a o so she c knows about the thyroid. I am type 1 btw diagnosed 1973.
I hope you are subsequently getting good care,
Yes, thank you Tistaple. I'm just angry at the doctors who didn't know or care about the thyroid. To this day no doctor has asked if I'm taking Biotin or supplements. They just hand me the blood test form. The frustration is that I know many others have been through or are going through the same. Certainly at the hospital I'm registered under.I'm grateful for my Nephrologist at a different hospital.
I am so glad you are managing this minefield. It’s horrible we have to learn so much to look after ourselves, especially since it’s our own money at work. We pay a massive amount towards their education and training and the service is most often below par - for us anyway!
Actually some formulations of levothyroxine are now more expensive than T3 so this particular argument is not quite fully true any longer.
No levothyroxine tablets (in the UK) are anywhere near as expensive as T3.
The most expensive one is Teva 12.5 microgram with an official price of £12.49 for 28.
Though the levothyroxine oral solutions are incredibly expensive.
It was in a post in the ITT group that showed that capsules were quite pricey too and also oral solutions as you said.
Though there is little point in discussing prices of capsules as there are no capsule products licensed in the UK. Hence there are neither list nor NHS prices for capsules. They are charged at pretty much whatever the supplying pharmacy chooses.
(That's why I restricted my statement to "tablets"! 
Then added oral solutions for completeness.)
A letter from an endo in another thread shows another light on their reluctance to prescribe T3:
The endocrine team always advise against using t3 routinely as it is harder to interpret than using the simple mechanism of using TSH as the guide.
healthunlocked.com/thyroidu...
Good to know medics spend 7 years training to be a doctor and can't interpret simple FT3 levels. Something a child could do. Really fills one with confidence.
They are very bad at interpreting any blood test results. They don't understand how thing fit together and are dependant on each other. For them, everything is divided into separate compartments, like shoe lockers at a bowling alley.
Another of the authors is Kristien Boelaert. She was on Jayne Franklin's team at the QE Birmingham and both were very resistant to treating anyone with obvious hypothyroid symptoms unless their TSH was well out of range.
Yes I had higher hopes about her. So far she is proving a terrible disappointment.
Or maybe he just could not get away with it. Maybe there is some new blood making its way through these terribly uneducated, unethical people. I don’t intend to wait though.
I think it’s just very ‘old’. No life about it at all, just exactly how they want us to remain - even if some of us are actually old!
I think we should remove his thyroid gland altogether and then let him go along the journey that the majority of us have had to go to find the solution.
so dangerous that every living thing has it coursing around their blood stream 🙄 give me strength how did these morons get to the point of dictating to us what we need to feel well?
'a trend towards an increased risk of breast cancer in individuals taking liothyronine'. They publish this but fail to mention the 2021 retrospective study that said 'levothyroxine users showed a 50% higher risk of cancer at any site'. Funny that.
I'm going from memory but I'm sure the study they reference does not correct for dose. The T3 users were likely on higher overall doses and higher thyroid hormone doses are associated with worse breast cancer outcomes.
What??? Higher thyroid level associated with worst out comes for BC? That's the absolute opposite of what my Oncologist said and did. He wanted my thyroid levels higher to fight the BC and be able to take very aggressive treatment. Where is the evidence for lower level of thyroid hormone treatment fights BC better?
healthunlocked.com/thyroidu... ... this was one of earlier discussions about cancer in general on forum... contains link to collection of evidence specifically re. Breast Cancer , here :
ibshypo.com/index.php/thyro...
to see the rest of the pages , go to 'Thyroxine (T4) and Cancer and the Integrin αvβ3 Receptor' on header of this page ... drop down menu links to the other pages on the subject .
The evidence is not conclusive but it does associate higher BC risks with fT3, whether the increased T3 is from liothyronine or converted from levothyroxine. it may be that having higher thyroid hormone levels allows more agressive treatment, I've no idea.
In general the studies I cite show thyroid hormone levels at least a year before cancer is diagnosed. This is so we can assess risk. Cancer can alter thyroid hormone levels in various ways, hence it's important to be sure there isn't an undiagnosed cancer when TSH, fT3 and fT4 are measured. Excluding subjects who develop cancer within a year or two removes this potential bias.
The evidence I present on my website shows that T4 proliferates most cancers by various mechanisms. In which case it is desirable to have low normal fT4 if a cancer is diagnosed. The exception is breast cancer which seems to be promoted by higher thyroid hormone levels (fT3 and fT4).
Jim I'm not medically trained and tbh all that's happening to me is this info is causing me anxiety.... Not a good idea! I was on thyroid treatment several years before BC diagnosis. One of the worst forms, much improved since Herceptin but mine was also muti focal and very large... So not great Am still here and clear. I don't have the science knowledge/training to assess research. I do know my Oncologist was horrified when a private Endo (who went soley by the TSH) on diagnosis wanted to take me off NDT and put me on levothyroxine (which hadn't worked for me) on a very low dose. She wanted my TSH much higher. My Onc didn't agree. I went elsewhere to a NHS Endo who totally disagreed with the private endo and kept me on the same dose of NDT all through treatment and since. 9yrs clear.I think the research needs greater explanation for people like me.
I'm sorry it's making you anxious waveylines , you have a good NHS endo who is wiling to prescribe NDT , and an oncologist you trust .
being pragmatic about it ~ lets say it is true that being hypothyroid (low T4/T3 levels ) would reduce your risk of breast cancer returning....... would you be willing to be underdosed on NDT (or go back on levo and take a low dose) ,in order to achieve a lower risk of cancer returning ?
do you think you could take a lower dose of NDT than you do now and still have a reasonable quality of life ?
if the answer to these questions in No , then it's academic .... you can't reasonably reduce your T4/ or T3 levels from what they are now , so therefore your risk is 'whatever it is' and there's not a lot you can practically do about it .
and especially while research on this subject is at such a tentative stage .. i think you should not worry about it and trust your oncologist .
Thank you Tattybogle. I really appreciate your response. No I cant reduce much. I keep thyroid hormones in range. I hot weather can drop 1/4if a grain and in cold weather have to increase the same. Going lower causes loads of other problems.
I'm probably not built for longlevity, (Friday model?) so I focus on quality not quantity.
Thank you! ❤️
nor do they mention the recent research showing association of higher levels of T4 ( from any source) with some sorts of cancer cell proliferation.
this is surely a good reason to be much more cautious about suggesting that higher doses of levo 'will do' instead of trialing slightly lower Levo with a bit of added T3 (because it's cheaper to just chuck Levo at the problem )
(can't remember the precise details , it was complex, but jimh111 has done a post last year that includes detailed links )
Thanks Tatty and Jim. My concern is they don't say what form of BC. BC has multiple forms and I think most Oncologists would be concerned by its generic use as the term Breast Cancer is seen as an Umbrella term not disease specific. Hence the typing of BC is a first stage process. I'm dubious thefore.
I can't read the research itself as I don't have access to them. I did follow the links.
What I will do though is contact my Oncologist and ask him. My thyroid levels are always in range but my TSH is obviously suppressed due to NDT. I'd like to know what they mean by high Ft4 or Ft3 levels and to what types of BC and the effects on reoccurance? I've been under three well renowned thyroid specialists and neither mentioned risk of bc. My NHS Endo wanted my thyroid levels optimal for bc treatment. I'm therefore confused.
There has been many assertions over the years by research that has later been shown to be totally erroneous eg butter/marg arguments, the latest rush on statins. Excuse my skeptism but it's a massive statement and personally I'd need to know a lot more. We've just had the latest recommendations on thyroid treatment based on what a lot of people agree is poor research/science.
There is still much they dont understand about BC. As we know research/stats can be made to mean all sorts of things. All this post has done is to worry me! I mean would a reoccurance now after 9yrs clear be due to my level of thyroid hormones or the nature of the type of my BC type which has a high reoccurance rate never mind throwing in thyroid levels being a cause....
Am I supposed to think my thyroid treatment caused my BC in the first place......?? Hmmm or is it the slow diagnosis, poor treatment of hypothyroidism, life style, genetics, diet, pollution and so forth. Do people with autoimmune conditions have a higher link to bc.... Etc etc....
When I find out more from my Oncologist I'll put up a post. Thanks.
I for one am very very grateful I had a GP who followed his knowledge of symptoms, just as GP's of old used to do, and not relied entirely on blood tests.
My heart goes out to the poor folk who need thyroid hormones yet do not fit in any box decided by those with closed minds.
As someone who depends on high dose T3-only (self medicating) to function I find the ignorance behind this statement appalling and potentially dangerous!
Do these so called experts not realize they are driving people away and encouraging them to self source and self medicate?
We constantly hear from the BMA and other health experts about the dangers of importing medications from abroad that are unprescribed, from weight loss pills to anabolic steroids and anything in between.
Yet they dont seem to appreciate how desperate people are. I read a recent article on Long Covid sufferers who've been driven to spend thousands on various drugs and treatments from abroad with aim of trying to restore at least some of their health.
These people have been left in limbo by the medical profession and many have lost careers, finances, houses because they are so unwell and cant work.
Its all well and good warning people off, but we only get one life and who wants to spend it being ill when sometimes the answer is ridiculously simple and easy.
We’re nothing to them but a paycheque they’ve been chocking off supply to make self medicating impossible to keep their ill deserved power over us
Hello, I have read most of the document. They obviously haven't used many people as examples, given their results, which are greatly flawed. It is all to do with money and not the health of the patient. I was on levothyroxine only and it made me really really ill, regardless of me repeatedly telling my gp. Cut a long story very, very short, I am now on liothyronine only, and already feeling soooo much better.
Glad you are feeling much better Dandy Butch. Lovely news.... 👍😊😊I thinks it's a case of patient heal thyself. Seems to be a lot of that around these days.... Lol.
Ooof having read that I feel like I’ve had an appointment with a bossy chauvinistic old male doctor telling me he knows best and to just do as I’m told and not worry my pretty little head about anything.
So if you are on NDT (DTE as they like to call it) you should be taken off it??? I'd like to see strong evidence for that! Been on it and well for over 15,yrs having tried their much loved Levothyroxine which even at high doses did very little for me..... And there are plenty of example on here of people doing well on combination thyroid meds. The assumption we all do poorly is erroneous and as far as I can see not explored. Of course if you run trials of inadequate treatment you will get poor results!! And why would they say that other Co morbidities essentially explains away any symptoms so not worth trying.... OMG. It doesn't make sense. And why would they say that if you have Coeliacs than that's the cause of your poor response to levothyroxine??? Don't they know that once gluten is removed from the diet the digestive system heals in 18-24 months? As a result I could drop my NDT dose a little.... Only by one quarter of a tablet though. Still need combined!
Complete and utter tosh.... All of it!!
A young GP said to me a while ago Hypothyroidism is a terrible disease leaves people so poorly and suffering as if that's the norm & expectation. Not if they are treated optimally and the cofactors are lined up.properly.... I despair.
I hope we are putting up a good challenge against this nonsense. Who else is there to do this?
I still clearly remember how awful levothyroixine affected me and the brunt fell upon my husband who hadn't a clue what was causing these awful palpitations that were much worse during the night and I was also linked to the cardiologist who recorded what was happening but he didn't know why this was occurring.
I had ice-cold items in fridge that I wrapped around my neck whilst I sipped ice-cold water to slowly reduce severe palpitations (not ideal in the middle of the night).
Nowadays, thanks to liothyronine (T3 and Dr John Lowe) palpitations resolved and I feel my health is back to normal at present and have no clinical symptoms.
Oh no!! So I was feeling quite pleased with myself and have been doing a happy dance since Wednesday as I saw my NHS Endo who had been trialling me on combo therapy for the last 18 months and was happy/satisfied to say I needed T3 and pass me back to the care of the GP. For me, it has been a very long journey to get to this point. We had a conversation, initiated by the endo, about the reluctance to prescribe T3 and how I should test out the surgeries receptiveness, and if it all goes wrong he can prescribe a years supply with a telephone call. He has already given me 4 months so that takes me to 16 months to try and sort out the surgery taking over. This new report will most likely throw a spanner in the works!
The two huge things that stared out to me in this report is the accepted use of using TSH as a guide to being over or under medicated! The TSH was designed to diagnose an in medicated person who had an over/under active thyroid. It was not designed to monitor once on medication!!!
And, twice it was mentioned in some form that ,
‘individual clinicians should not feel obliged (to start liothyronine) or to continue liothyronine medication provided by other health care practitioners’
Both of these are huge. The whole precinct is flawed with the TSH as a guide but this is so ingrained now in medicine I don’t think we can ever change that in my lifetime.
Individual clinicians (I am assuming this covers GPS) can ignore what a specialist (Endo) has carefully monitored and prescribed?!?!
I think my endo has been rather thorough, and has followed the recommendations except for a questionnaire, before and after, and allowing me to reach the MAGIC TSH of 10. ( I reached 7, but because, according to my GP at the time, I had nothing wrong with my thyroid, so I must have ME/CFS instead.
Then of course, this is a bit ambiguous…
Patients established on stable doses of combined liothyronine/levothyroxine with serum TSH in the reference range may be safely discharged to primary care where the GP is willing to take on responsibility for TSH monitoring.
So what happens if you don’t find a willing GP or surgery? Does that mean you can’t have it??
Arghh, when did this report come out? Has it trickled down to the endos yet and mine knew? Or is this going to be a shock?
I have been on Armour thyroid since 1998 when I was age 44. I carry the Dio2 gene.I wish they had included me in their studies!!!I would be able to tell them that I was very poorly throughout my life, since adolescence.I also had juvenile arthritis with enthesopathy-I know that there is a connection with this and hashimotos. When I was prescribed Armour, I started to feel so much better and I haven't looked back.My endocrinologist was very happy for me to continue with Armour and my GP prescribes it and I pay for it. The NHS paid for it for a few years.Now this latest 'consensus statement' has got me worried!!!!.Do they want us all to become seriously ill again? Will my GP no longer prescribe Armour thyroid? I have read through this paper and it is so biased because they clearly have not studied a wide enough variety of people.As far as genetic variants are concerned they admit that 'to date,adequately powered studies have not been performed to confirm these genetic findings'. There are far more symptoms suffered by people than they document, and people can be ill from a very young age. They , like me, just don't get diagnosed. Dear doctors, please ask your patients how they actually feel, instead of reading numbers on a computer!
Lynn I just want to say Thankyou to you, the team and the other thyroid patient bodies who fight so hard for us all. Thank you. 😍❤️❤️❤️
This is actually bordering on negligence. I don’t see any other medical association anywhere in the world taking this stance.
Yet again! Everything they write falls under the shadow of statistics and probabilities. A single patient is neither a statistic nor a probability. Their unique presenting symptoms must come first and then decisions to treat or not afterwards. You know, it's as if publications showing the TSH paradigm in treatment is not the same as when healthy are completely ignored. Surely they must know what dissent there is about this question, or else can't understand anything beyond statistical generalisation. Probably the latter! I suspect they know that diagnosing and treating hypothyroidism should be far more thorough and time-consuming than the tick-box approach in quick time they recommend.
probably the latter .. i'm tempted to agree .
eg this bit :
"Thus, it is unlikely that one or two genetic variants could have a large effect on therapeutic response. It has been proposed that some people have a genetic inability to make sufficient T3,42 sometimes referred to as “poor converters.” A key question is why this putative genetic phenotype does not manifest in childhood or in euthyroid people. ...."
but surely the reason 'poor conversion' doesn't manifest as a problem in euthyroid people is because they have a healthy thyroid gland that is capable of compensating by making more de novo T3 ... or am i the one who is being thick ?
Who's to say it doesn't manifest? As a teenager I ran track but didn't have the stamina to do more than a 400m sprint. Always depressed. TSH fine but TT4, TT3, uptake etc whatever they had in the 90s, never measured. No one can say there wasn't a conversion problem . As i always say now : if you don't measure it, you won't find it.
Your logic makes sense too!
yes .. that too
if you were the teacher marking this groups consensus statement , what would you give em out of 10 ?
maybe we should send it back to them with bits crossed out in red ink with:
"SHOW YOUR WORKINGS !! i expect better quality work from students at your level" written all over it.
🤣 exactly. I'm american so i'd give them a "D" because they did at least write their name on it, so not an F ... or maybe that's even too generous 🤪
It's a good question to ask but why do they think it's genetic? The worse cases I see on the forum have a normal TSH with low normal fT3 and fT4. This indicates the TSH is too low and has low bioactivity (it's not sufficiently stimulating the thyroid). This can occur with minor pituitary damage or more probable a down regulated axis arising froma period of thyrotoxicity.
Having asked why it doesn't present in childhood they should go on to find out why? The evidence is there: low normal fT3 AND fT4 should be associated with a high TSH.
No, no thickness in sight! The simple fact is that there is no mystery. The T3-producing process is extremely robust to genetic differences, These only showup when the thyroid's T3 production is completely stopped. A nice experiment with animals (rats). Lab rats have been produced that lack ALL the deiodinases that the body makes (D1,D2,D3 in the actual corpus, not the thyroid itself). They remain perfectly healthy apparently purely from the thyroid's T3 taking over completely. Proof positive that corporeal mutations are not important features in health, but only show up when the thyroid dies.
Well said Diogenes.
It's not about improving treatment it's about budgets. They know it. We know it. The least they could do is be honest and not hide behind dubious flawed research and assumptions!
Of course inadequate treatment or no treatment leads to other health problems never mind poor quality of life but I guess their attitude is not out of my budget! Some other departments problem.
The callousness astounds me.
This area of medicine has been stagnating and going backwards for ages now. The idea that there are thousands of people who have been put on thyroid treatment erroneously is a complete nonsense. Weaning people of hormone replacement if they haven't met unknown future invented standards at the time of their diagnosis???? I've never heard such a load of nonsense and if I get threatened with such tosh I will look at sueing. Maybe it will take a lawyer to make them sit up!
I started reading this and got very cross because it doesn't deviate from.the mantra of tsh " is all" for testing purposes .I want to speak to someone in this committee and show them my results chart over the past 20 years and find out what they say about Hysteresis of HTP Axis. Who can I write to ?
There's a very worrying part of this document with regards to being diagnosed in the first place. Unless I'm reading it wrongly, I understand they plan to be more hesitant in giving an initial diagnosis.
That's frightening, especially with focus simply being on TSH. I had years of being most unwell.....and because my bloods didn't "fit the box" my awful symptoms were ignored for those years.
My heart aches for those who will unknowingly be subjected to this "guidance" and who potentially face years of being unwell.
How these "guides" sleep at night is a puzzle.
The UK is already very hesitant in diagnosing hypothyroid, usually two consecutive TSH levels of over 10, or high antibodies and symptoms, or below range FT4/FT3 levels. Almost nowhere else in the world has such hoops to jump through.
I remember reading Canada had a high TSH threshold as well, but it was some years ago and might have since changed. Most hypo patients wait years of ever increasing ill health before they meet the requirements.
I guess its one way of saving the NHS time and resources, set the bar so high that you immediately rid the entire population of hypothyroidism. Instant cure 😠
But it costs them more really because the consequences of delayed or poor treatment means patients end up with a myriad of health problems costing a fortune in investigations and medications. It won't save the nhs money but it will ruin people's health and QOL.When I finally got on the best treatment and dose for me for my hypothyroidism, many other health problems disappeared. I no longer needed 5 other medications. However a raft of investigations also cost a bomb that could've been avoided if I'd had the correct treatment in the first place.
It won't save them money or time or resources.
I've found people who are supposed to plan for things long term, whether its politicans, local councils and NHS managers dont actually do it. Its all about the here and now, no thought to next month, next year or a decade in the future. Its short-termism in a nutshell.
Save a few pounds now, balance the books, make ourselves look good. Sod the consequences because chances are it wont affect them or they wont still be in post anyway. They will move on to pastures new leaving serious problems in their wake that the next appointee won't do anything about either and so it goes on.
I wished I was included in the study. What about me? Subclinical hypothyroidism with widespread hypothyroid symptoms that gradually increased over many years until I had so many problems affecting my daily life and many pills for each problem because the doctor didn't associate them with thyroid disease and an abnormal thyroid gland on ultrasound suggestive of Hashimoto's with negative antibodies ? The new guidance just makes it harder for me. I'm on Levothyroxine, can't say it helps much but still better than nothing. I am worried that my GP will change his mind about the medication.
It doesn't leave me with much hope and I fear that my daughter and son will go through the same hell that I went through and am still going through...
Me too. Angina for a number of years before heart attack with no plaque in my arteries. After heart attack and being prescribed huge amounts of drugs, I gave up. No help offered other than their dreadful drug regimes. Safer to stay away from medics was my decision. Struggled dreadfully with angina post heart attack for fifteen years or so. Finally a blood test showing full blown hypothyroidism. This was overlooked for yet another five years. As soon as I started on levo, my angina reduced from 3 or 4 times a day to hardly ever. Still struggle with a heart which cannot rouse itself to anything remotely akin to exercising or anything with ease. However it’s improved, if not entirely well. Like you I very much fear people with subclinical will remain untreated and their lives will be very badly damaged. It’s negligence.
Levothyroxine gives me intense palpitations - especially during the night.
Liothyronine is my saviour as it has relieved all awful symptoms and makes me feel that my health is 'normal' as my body is calm and relaxed.
READ THIS! CCG's are stopping docs and endos's prescribing T3 by using bits from this that suit them. T3 is a possible treatment etc AGH!!!
ideal FT3 and FT4 levels on NDT
