Here is a site discussing this. Once again, categorising and failing to see that patients on their way to overt hypothyroidism will overlap with those with temporary rises in TSH, thus categorising and applying conveyor-belt arguments as to why not to treat any one. Still the danger of diagnosing by the numbers predominates.
Too much use of T4 for subclinical hypothyroidism? - Thyroid UK
Too much use of T4 for subclinical hypothyroidism?
diogenesRemembering
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Personally I am disappointed that the BBC didn't clearly state who was excluded in this study and to whom recommendations do not apply:
"Women who are trying to become pregnant. Such women were excluded from the studies. A systematic review of observational studies suggests that pregnant women with SCH may be at increased risk of adverse outcomes for both mother and baby. Guidelines recommend levothyroxine for pregnant women depending on TSH level and presence of antibodies to thyroid peroxidase" also
"Women at risk of unplanned pregnancy. Clinicians may consider offering thyroid hormones because pregnant women with SCH may be at increased risk of adverse outcomes for mother and baby"
It's very very important we spread this message! Not many people will be bothered to read the BMJ paper so it's a shame the BBC didn't include this information in their main article🤦🤦
I have already shared this on the Fertility UK forum.
The BBC article did include a link to the BMJ paper at the bottom of the page under "Related Internet Links".
I have to admit that this is the first time I've ever noticed such a link from the BBC about research papers they publish articles on.
Anyone interested in the paper for any reason should download a copy. I have seen examples of whole papers being published in the BMJ which were only freely available for a couple of days after publication, then they go back to their normal habit of showing the abstract only and asking for money to see the whole thing.
Hi yes I know there is a link but my point is not many people will bother to read it and potential pregnant ladies will miss this crucial information.
Many thanks for a tip about downloading 👍
I note they say that after 5 years, TSH resolved in 62% of cases. That is, they didn't in 38%. What was the fate of this 38%? Did they continue without further changes or did they go on to overt disease? And what proportion did go on? We don't know. This is categorising to perfection.
diogenes The problem is the doctors who have put this study together have only focused on the TSH. What if a patient's hormones aren't tested too, like T3 and T4? If this becomes accepted practice, many people will be missed, especially those with Secondary Hypothyroidism and Hashimoto's. In any event, doctors should be going on symptoms, using the blood tests as back up information not using them as a gold standard for treatment decisions on their own.
Trying to find ways for the NHS to save money. I note they didn’t mention people who have had RAI treatment courtesy of the NHS or people who have had their thyroid removed. Where do we stand on chart? I shall be speaking to my gp !!!
This makes me so angry!
'almost all adults with mild or "subclinical" hypothyroidism will not benefit from hormone treatment.
WHAAAT!!!???
'Taking a pill and attending lifelong check-ups is burdensome and there is "uncertainty" over potential harms, they add.'
Being hypothyroid is even more of a burden - to the patient. And depriving us of treatment causes certain harm!
...many patients will not need treatment ... for some trying daily pills may be worthwhile.
It took several years of being tired and under par before I was finally diagnosed with "Subclinical" hypothyroidism and eventually given thyroxine. The reluctance to treat is the main problem, not over treatment.
"You do not have to commit someone to lifelong treatment."
But there is no excuse for committing someone to being deprived of treatment because the pundits think we don't need it!
Prof Simon Pearce, from Newcastle University, said: "Thyroid disease is being overtreated currently
He should try putting up with some of the symptoms for a few days.
..."If evidence shows that they are not going to be of benefit to our patients, it is important that we know this and that it is reflected in the clinical guidelines that inform our decision-making."
Clinical guidelines tend towards under treatment not over treatment, so making it even more difficult to get treated is definitely not of benefit to patients!
"The authors make a powerful case based on emerging evidence and it is important that this new research is taken on board as clinical guidelines are updated and developed, in the best interests of our patients." '
Best interest of the patients! Who are they kidding???!!!!!
GRRRRR!!!!!!!
Perhaps this missive is an indicator of what the new Guidelines from NICE are going to say.
in reply to diogenes
Although I suspect that you may be right as it would be unusual for NICE guidelines to contradict the BMJ, I hope that the new guidelines will refer to the issues for clinical practice raised by Dr A D Toft, recently retired, in which he highlighted that they were always intended as guidelines but were being considered as much more of a prescription in many practices and surgeries. All treatment should be patient focused and based on an individual's symptoms and diagnostics not on any generic sense of normality nor a formulaic approach to a single diagnostic "marker". It's much more complicated than that as more recent dynamic testing and research at the cellular level suggests. The Goldilocks hormone is a nice analogy for the less scientific amongst us. Here's hoping that NICE are a little more advanced in their approach to the new guidelines rather than simply repeating the old and antiquated ideas that seem to have prevailed in clinical practice and in the sparse thyroid branches of Endocrinology for far too long.
PS I hope that the NICE guidelines draw on some of the more recent work described in the Pinned Post below under "An important paper out at last" which is a great read and vindicates so many patients' posts on our poor, misguided treatment over many years.
Fear you may be right
I think my chief concern is that Dr Pearce is concerned with this paper, is a member of the NICE guidelines team, and personally gave us a shellacking when we sent the latest paper first to BMJ. A worse, more aggressive and outright deliberate refusal to understand or grapple with what we said would be hard to find. I'm afraid I find Pearce tainted goods.
I had heard a rumour that it would be an uphill battle
It’s quite frightening the refusal of people to see past their beliefs. Wonder what his COI are or is he just another Ancel Keys, once you’re so far down a line you can’t change direction. Once again it’s human health which is compromised (not right word but can’t find correct one in my brain).
I've sent the article off to Rudolf Hoermann for his opinion which I think won't be complimentary. I'll pass on what he says.
Polaris in reply to
Thanks for posting diogenes , and absolutely agree Hidden . Just read similar article in the 'i' newspaper and am still in shock :
"The team writing in the BMJ said they had concluded that almost all adults with sub clinical hypothyroidism (underactive thyroid) would not benefit from treatment with thyroid hormones." 🤔😱
This is alarming news and, hopefully, will be ignored. It's already hard enough to convince GPs we're not hypochondriacs! Years ago in my sixties, (despite many symptoms apart from weight gain), I struggled to get a diagnosis for well over a year, during which time, eventually diagnosed with heart problems, high cholesterol, high BP, another leaky valve 🤔!, fuzzy brain and beginning to think I was going mad..... Then, thanks to the Internet, was able to check symptoms, insisted on thyroid testing and straight away prescribed levo. There followed further struggles to stay on optimal doses to stay well - only prescribed because I offered to take full responsibility, in writing if necessary........
Years later, I remain comparatively healthy on NDT and B12 injections (another story), supplemented with garlic & hawthorn tablets and various other natural remedies - all enabling regular long walks to, hopefully, stay active and healthy 🤗
in reply to Polaris
"There followed further struggles to stay on optimal doses to stay well - only prescribed because I offered to take full responsibility, in writing if necessary...."
Brilliant, and confirmation! I was thinking of offering to sign a disclaimer if they would only let me increase instead of reduce the levo even more.
Jane104 in reply to
Yes, it doesn’t work because they either don’t let patients take enough or the patient needs t3/combo. I am only well on NDT and with a suppressed TSH, which they won’t allow.
They seem to be saying this medication doesn’t work so let’s not bother.
If anyone wants to reply or comment on the bbc story they can
Direct link to the page facebook.com/BBCLifestyleHe...
Link to the site
The lady Prof in the article calls the tablet “ powerful drugs” I thought that thyroxine is a hormone ! Rather stupid remark , in my opinion.
Very worrying that is aired by the BBC .
As if restoring ourselves to a euthyroid state is akin to heroin addiction!
I despair😢 Either She doesn’t understand the difference or she thinks we are stupid!
I have clear evidence in my case . Not the best way to do so. I lost my thyroid to cancer 3 years ago. Really poorly before ( I think there are symptoms for some people , despite what is said)
Well I am like a new woman (I m not young) since my hormone replacement . T4 and T3 which I have added with my GPs approval .
I was told at prior to surgery my blood test was fine. I later found out my TSH was 3 ! Just goes to show what they know! Nothing about the human body😡
Since found out with gene test BH that I have double red for a poorTSH response to the thyroid hormone needs , in my case. 😬😬
Best wishes to you .
in reply to Gcart
I want to "Like" this, as well as a few other posts, but if nobody else likes it, the like button doesn't work! Blip in the system?
There's no button for adding a picture either.
Two of my close relatives had thyroid cancer (NHL so quite rare) luckily I have escaped that. Both survived it ok and loved Levothyroxine which does not suit me. I have the DIO2 mutation for poor convertion of T4 to T3 and some genes for thyroid hormone resistance. Luckily I learned of NDT here - I have never looked back since switching to it. Go well 😊
diogenesRemembering
My colleague Dr Johannes Dietrich has commented almost the same criticism of this recommendation. He refers to where our paper agrees in some part with the story and where it does not crucially.
Quote:
The BMJ published a rapid recommendation on subclinical hypothyroidism, which suggests not to start routine therapy with thyroid hormones in SCH (with a few exceptions including pregnancy). This is somewhat consistent with the major conclusions in our recent debate article that SCH is a dubious diagnosis with unclear therapeutic consequences.
Unfortunately, this recommendation is over-simplifying and reductionist again, and it doesn’t mention T3 at all.
I just followed the link to the whole article. It does make exceptions to the "No Treatment Rule", BUT......
If you have no symptoms or non-specific symptoms they recommend no treatment. Fair enough on the surface of it.
But how do you know for certain you have no symptoms? Many hypo symptoms are "Non-specific" and put down to other causes, or assumed to be merely a sign of ageing. Looking back I realise that I had hypo symptoms for several years before diagnosis, which forced me to retire because of concentration difficulties (dangerous if driving a lot) and tiredness.
If you have severe symptoms or are under 30 you have a chance, as recommendations "May not apply to you"
The only category where treatment is definitely recommended is if you are trying to get pregnant or have a TSH of over 20!
diogenes Well, why don’t you contact the BBC with a response to the article and a written counter view for them to publish?
I believe Hugh Pym is the BBC News Health Editor hugh.pym@bbc.co.uk
Perhaps submit an essay signed by you, with your credentials, as well as a number of other doctors (and possibly the thyroid advocate groups). It would have more clout and also look a bit more interesting to the reader.
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Otherwise the same thing will happen as a couple of years ago when BBC radio 4 reported that Concordia Pharmaceuticals had been raising the price of Liothyronine to extortionate levels.
TUK or TPAUK or somesuch could have, SHOULD HAVE immediately contacted them to make a comment. Namely, the knock-on effect of raising the price means that thousands of patients who take this medication are seriously ill without it, as they are having it stopped or not having it prescribed because it’s too expensive.
That’s the story.
But no one bothered to contact them! Why on earth not???
However, a few hours later the same day a comment, an inane comment, came…from “Mark Vanderpump from the British Thyroid Association”. Probably because he bothered to get in touch with them.
Getting some press interest is the Holy Grail to raise the profile of the issues. It could have opened the door to everything else that needs to be talked about regarding thyroid treatment.
It was a missed opportunity.
Just hoping for things to change won’t change anything. TUK is a bubble. The general public do not read any of this, nor to the media or press. Sometimes there’s a need to be more pro-active rather than just reacting about it on here.
I've thought long about starting a dialogue, but the problem is it takes two to tango! It must be clear to everyone that the medical thyroidologists have an entrenched attitude to what they in their lofty wisdom will agree to. They have to openly admit that for 35 years (i.e. the whole careers of the eldest) they have acted completely wrongly and have harmed many patients. A lone non-medical man even of many years rsearch experience won't cut any ice with these people. Even if JC (a non medic) came down from Heaven with the holy truth, he wouldn't get anywhere, but they might stop short of physical crucifixion rather than verbal. That they are fundamentally wrong, is more than they can bear, so push it out of sight and denigrate anyone who tries to bring it to their attention. I'm glad being retired they can do nothing whatsoever against me except ignore, as they do.
I’ve suggested that this is an opportunity to get in touch with the media.
Your reply above refers throughout to the “established medical thyroidologists”.
Well that’s the problem.
You keep trying to tango with the same person who doesn’t want to tango with you. As a rule, if someone isn’t listening to you, then stop talking to them. Find someone who will listen to you.
Like the media.
This can give you a platform on your own terms. Don’t have it in mind as a response or a dialogue with the authors of the original article or the “established medical thyroidologists” per se. You’re writing to Hugh Pym (and readers) set it out for him, or the wider audience.
They are using the media for their ends. You can use it too. I doubt the BBC Health Editor really understands this stuff about the thyroid.
Here, you are not “a lone non-medical man”. Science is 15 years ahead of the medicine - and you are a scientist / a biochemist and author of many years research and experience; you invented the first TSH and T4 tests, you are also close to someone with hypothyroidism. Your evidence and arguments are cogent, interesting and compelling.
This will "cut a lot of ice" with the press/media
You’re not alone if you get some other doctors / endos; Toft (including his credentials); a medical journalist (some have done stories on the thyroid) whoever…to bung their signatures to your essay, even if it’s only 5 or 6 others.
If the opposing thyroidologists respond, then their line of argument will be laid out in the in the public eye.
If their arguments are weak; evasive or don’t really make sense to the media, then the media are in a position to cross-question them, prod further, demand the answers they need until they are satisfied, until they understand their side of the argument. If not then their arguments are exposed, in public, as being weak.
In effect, the media takes up your side and fight your corner for you, in ways that you can’t. Likewise, if the readers / the general public are on your side of the argument, that works for you as well.
Journos / the media are always on the look out for good stories; better still, good stories with legs. Give them something to get their teeth into.
Broaden out your article, don’t just respond to the points in their article, they can lead that down a dead-end, so end of story. Use it to go where you want with it, like to point out all the other stuff re: thyroid mismanagement.
Give them a story. Make a stink.
Hugh Pym said he was very interested in the thyroid situation for BBC Panorama when the dossier was sent to him, but he doesn't seem to have followed up on it. Anyone/ everyone can send email him and ask/ plead for a decent programme on this
A wise person would embrace the truth and admit they were wrong. But these people appear to be psychopaths they appear to hate women and elderly women in particular and continue to take pleasure in mistreating us. I think them despicable. If you want to do harm become a medic - look at Shipman and what he got away with...and that was just the tip of the iceberg.
I read the first part of the BMJ study, but found it very hard to follow - more like a list of sidebars and bullet points than a report or essay. I'd already encountered several points I didn't even know what to think about!
1) The meta analysis used 21 studies, and over 2000 papers. What, so each study was less than 100 people?? This is less the scope of a meta analysis, and more just the size of a single large study, isn't it? This just mopping up a bunch of really tiny studies and bunching them together. It keeps being mentioned that most of the studies are with older adults, but that's not included in the research questions or title of this study, which claims to be about everyone. Meaning the sample is even tinier for the younger people they claim represented.
2) "In the UK 25% of the population have a thyroid function test every year". This is another just WTF! Moment. I can't even parse this sentence, does it mean there are a group of people, 25% of the population, who get tested every year, or does it mean that the number of tests done each year represents 25% of the population? It comes in a paragraph that seems to be explaining how they could have got a large collection of subclinical thyroid blood tests from people who have no symptoms. Because otherwise you would wonder why these people were even tested.
I think most of us would love it if we had had thyroid bloods taken every 4 years for our whole lives, before we were diagnosed, just for no reason at all, so we'd have that record available.
3) This study enormously prioritises self reported quality of life. This is a topic I think I'm going to develop a bee in my bonnet about! I absolutely loved a recent paper, I think from Diogenes and team, that put QoL and symptoms front and centre and used them brilliantly. But we often see them used, as they are in this paper, a bit suspiciously. In the Summary only 8 indicators of comparison between treated and untreated patients are given, and HALF of them are these self reports, but only one out of the four is 'thyroid specific symptoms'. Making me wonder if I'm actually going mad here... But what is the point of even making the comparison in symptoms that are not relevant to thyroid?
They name one of the scales used, EQ-5D, so I was able to do a brief search of whether this has been validated for thyroid patients. And nothing came up. I'm a bit suspicious these things are not validated in any way at all, but are just a few things the researchers thought they would throw into a scale. And of course it's hard to validate - you'd have to get two populations and know one is healthy and the other is hypothyroid, and prove that the scale could tell the difference? If it's not capable of doing that, then it doesn't matter how similar these two patient's set of scores are, does it? It just bulks out the list of measures and makes it sound like the two groups are similar.
4) Another two of the measures are mortality after two years (one all cause and one cardiovascular). Which is probably a more reliable measure. But it also doesn't capture much of what I care about in my thyroid treatment. Two years is a very short time, as hypothyroid is not an acute condition we expect to kill us within months. If it has an effect on mortality we expect that to be shaving a few years off, or even decades off, which I don't think this measure will capture. Just putting it in there, and on an inappropriate scale, is again calculated to flood the data with noise. One or two people randomly getting hit by a car will render this data for only 2000 people pretty meaningless.
And at that point I stopped reading... I haven't even got to the point where I feel I can evaluate the study in a reasonable way, haven't looked at how they even evaluate the thyroid results or anything... Too much suspicious nonsense already going on.
I was interested to learn that in the UK the number of people who die per year per 1000 is about 9. Higher than I'd assumed, so the expected number to die from this study in a two year period is 36.
What sort of people are they to deliberately pervert the facts to their own sick end - to massage their pathetic egos and bully to get their way. I wish there was recourse to get them removed from the positions of power they are basically abusing.
diogenesRemembering
I got this reply on the matter from my colleague Rudolf Hoermann:
I think we are about the only ones using a solid framework and scientific process.
Bianco describes all these details but does"t know what to do with them.
The (BMJ) recommendations are too erratic, based on oversimplification and misinterpretation, shifting from one extreme to the other.
I think our new paper should aim high and would deserve a prominent home as it really alters physiology.
However, politics is a problem
The paper referred to is one we are grappling with at the moment to show how vitally important is the thyroid's ability to uprate T3 production direct, as it is dying, thereby compensating for the declining body conversion of less T4 into T3. It can uprate so much in the latter stages that its T3 production outweighs the body's. This has profound effects on the results of interfering with this mechanism by inappropriate treatment.
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