A German physician's take on the RCP recommendations

I thought I would forward this observation from one of my German colleagues on the quality of the RCP recommendations on thyroid treatment. Says a lot.

This is rather disappointing. Their recommendation is reductionistic and over-simplifying. Although it is correct that the majority of hypothyroid patients is well treated with L-T4 alone, the guideline has a general and very strong tendency against substitution with L-T3 or a combination of T4 and T3 even in a minority of patients. Interestingly (and consistently with their tendency) they only give dosage recommendations for switching from L-T3 to L-T4, not vice-versa.

Obviously, they completely ignore the 10% of hypothyroid patients who have poor QoL despite normal TSH levels. Given the prevalence of hypothyroidism this amounts to 0.5% of the total population. Therefore, "syndrome T" (inability to use T4 only) isn't a rare disorder.

Their main interest seems to be low costs of medical care. However, even in this respect they are wrong, since inadequate treatment modality may have significant consequential costs, up to premature pension of affected patients.

Interesting is their statement "Patients with suspected primary hypothyroidism should only be diagnosed with blood tests including measurement of serum TSH". Obviously, the clinical presentation of the patient is dispensable for them, and they only regard TSH concentration as essential. This isn't good medicine.

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  • Is it true that the majority of hypothyroid patients is well treated with T4 only drugs? There must be some statistics backing up the claim that only about 10% of hypothyroid patients need to add T3 for complete symptom relief...?

  • It's really an agreed finding worldwide by experience (esp in countries that have a more mature approach to therapy). There is a very good physiological reason as well but it would take a long time to explain. The pity in the UK is that the authorities use the words "overwhelming majority" andsimialr loose terms to justify their belief that very few patients indeed need T3. Mich less than 10% of all.

  • Well, if what you're saying is indeed true, that would explain why so many doctors refuse to even consider adding T3 or prescribing NDT...but that must also mean that, before T4 only drugs were widely available (it's often said that they took over the market in the 1950s or 1960s and that, before that, NDT was the most commonly prescribed drug for hypothyroidism), most hypo patients felt miserable on NDT...

  • Does that majority take into account all those on T4 mono that Dr's refuse to accept are not doing well, I wonder? Somehow I doubt it...

  • Yes, this is something I wonder. I only know about thyroid cancer specifically, but it seems like quality of life indicators are low for the whole group, not just a small subset.

    And when I've been in patient groups for thyroid cancer it seems to be the elephant in the room - most people talk as if they're complete fine, but if the topic of taking naps comes up, it turns out everyone needs them, or if long walks in the country, weddings and big family events, working full time, etc, etc come up everyone turns out to struggle with these things.

    So what patients are willing to call fine and normal is not necessarily good. I always wonder how these people are answering questionnaires or filling in doctor's forms - many must be saying they have no or low symptoms when if you dig a bit you find things are quite poor.

  • This is an important point. In accepted trials to examine therapy success, the rule now is to ask patients a series of questions from a predetermined questionnaire and record the answers. In my opinion this is leading patients in a particular direction rather than letting the patient voluntarily offering their thoughts without prompting. The standard approach can lead to inaccurate data compilation, because some patients will be "brave" and dismiss problems as being not worth mentioning and others might raise problems they don't actually have, through autosuggestion.

  • Cradle to grave we are all *fine* - it is the British stiff upper lip that has conditioned us .... and our fear of questioning authority - in this case medics. Thank goodness this forum helps us to seek answers .....

  • Exactly 😣😣

  • I've got a background in social research, and I often find the questions asked in medical settings are shockingly bad - inappropriate response options so that the questions make no sense, or numbers applied to questions that are very vague or very subjective.

  • I sat in a GP's surgery this morning waiting for a blood test and two older ladies sat beside me, talking to each other. It was a hot morning but one of them had a woolly jumper on! It turned out had hypothyroidism and was on T4-only "therapy"... The thing is: if people are being told by their GPs that T4 in the only treatment, some of them just "get on with it" not knowing that their lives could be better on a different medication.

  • Yes, I agree. I think there's also a huge stigma about owning up to being sick, and often people would rather struggle and pretend nothing's wrong. The doctor knocking you back if you ever ask about it makes that stigma even stronger.

  • I have always pointed out that the guidelines (so-called) state that they apply to primary hypothyroidism but give no guidance on what that is. Nor on how to establish that secondary/tertiary/central is not the issue.

    Further, they are treated as if they apply to all forms of hypothyroidism and the limitation to primary is totally ignored.

  • The guidelines are very suspect...if only we could see what is behind them.

  • Nor on how to establish that secondary/tertiary/central is not the issue.

    But, but, but ...

    That is vanishingly rare, don'tcha know!

    ;)

  • Of course it is! If it never gets diagnosed (due to failure to understand, to look, etc.) it truly will vanish. :-(

  • Yes, agreed. :(

  • You mean: we would vanish....and we truly would if it hadn't been for forums like this.

  • Totally understand. :-(

    But I was more thinking that records of diseases would show zero incidence.

  • it we weren't not treated and therefore our genes would get removed from the gene pool, the records of diseases would certainly show zero incidence. That's a way to treat a disorder, isn't it? I'm sorry: I cannot help being sarcastic. Sometimes a black sense of humour is the only way to cope lol

  • Yes - Darwin awards and all that.

    Funny how many times some apparently "bad" gene actually confers some benefits as well. I think I read of thalassaemia helping with malaria... ?

  • I'm sure there are many benefits of gene mutations...not always for those who carry them lol

  • I'm not a scientific person, but why can't they comprehend that L-T3 is a major hormone in the workings of the thyroid?

  • Agree Marigold...is it me or is this 'science' lacking all common sense?

  • So disappointing!!

  • .... and so say all of us. I wonder how many folk at the RCP can understand the results of a FULL Thyroid Profile if presented to them ..... So where do they find their information for their Guidelines ?

  • The 'guidelines' is a very dishonest document. The evidence that is presented is restricted to primary hypothyroidism but all the recommendations refer to treatment of hypothyroidism. There is no mention of the recommendations being restricted to primary hypothyroidism even though this has been pointed out to them many times.

    It's true that most patients with primary hypothyroidism do well on levothyroxine. However, this leaves out many other patients who have hypothyroid signs and symptoms arising out of various conditions such as endocrine disruption or a blunted hypothalamus pituitary thyroid axis. Endocrine disrupting chemicals (EDCs) can disrupt thyroid hormone action in a way which will not be refected in the blood test and produce a form of peripheral hormone resistance. A blunted axis means the TSH is reduced in level and bioactivity. This has two consequences. 1. A low TSH occurs even though the patient may have low fT3 and fT4 levels. 2. There is evidence that TSH stimulates type-2 deiodinase (T4 to T3 conversion). Consequently these patients will convert less T4 to T3, they are able to convert but their abnormally low TSH reduces the amount of conversion. In both these cases the patient will need higher doses of T3 than usual, the research so far does not address their disorder.

  • Very useful to consider the true numbers of people who may struggle on T4-only, even though it's a small proportion.

    It always seems to me doctors have a very distorted view of proportions, and that 'only ten percent' of whatever group rounds down to zero for them. It seems weird as surely they see hundreds of patients, and most of those they see are the unlucky 10% of some disease population, so they get daily evidence that 10% is a very real chance of illness.

  • Leave % and turn it to actual numbers. That's what is often missed and when you present the case by only % it might look far less.

    Like if you get 10% discount from 100 € it's small discount. Everybody agrees.

    But let's take Finland or Norway with low population. Estimation for hypo is 10% which makes 500 000 out of 5 000 000. Oh dear that sounds far worse doesn't it? If 10 % are poorly on T4 it makes 50 000. Impressive numbers! Not long ago only 3000 finns was prescribed T3/NDT.

    If the wildest estimation is upto 30 to 40% poorly on T4 then it's disaster!

    If 10 % of Europeans have hypo it makes 78 000 000 Europeans. 78 million!!! 10 % poorly on T4 makes 7.8 million.

    Yeah 10% sounds like a pretty little number which might be acceptable. It's nothing.

    Worldwide 10 % 700 000 000 and what 70 000 000 are not well on T4 only. What happened to pretty little nice round number of 10% ?

    And over billion people worldwide are at risk for iodine deficiency which ofc causes a hiccup in these numbers and I have cut the edges straight by using 10% as an accepted estimation.

    But when you turn % into numbers you realise it's not a little problem. Doctors do not think about actual numbers.

  • Thanks Justiina :) I also kind of wondered how it compared to other major diseases, and that its a joke to call it the non-T4 group 'rare', when in fact thyroid illness in general is so enormous a group.

  • Diabetes worldwide 422 000 000 so approximately 4.5%.

    Rheumatoid arthritis 1%.

    IBD few million in Europe (less than 5).

    Just few examples after quick googling.

    Diabetes correlates with hypo as while hypo has increased so has diabetes. But only diabetes is considered far more serious.

    So you were right thinking about comparing hypo yo other major illnesses.

  • Madness! Aren't both part of the same system, and can't Hypo lead to diabetes...? (Can it work the other way around too - I wouldn't be surprised to find that those with Diabetes also end up with low thyroid function) And how serious does it need to get, there is a reason HypoT is on the Free prescription list in the UK.

  • I'm curious about whether diabetes sufferers get the same kind of contempt from doctors that thyroid patients do, but don't know any well enough to dig for the answer :p

  • Well over here in Finland the price of metformin is now so high those who had/have are forced to get insulin even though their type 2 diabetes was very well under control on metformin.

    Insulin is far more expensive , and almost fully covered.

    We do not have free prescriptions.

    Insulin can be far more difficult to dose.

    Metformin is considered future anti aging drug as it decrease iron. Increasing iron after menopause is considered connected to oxidative stress which causes rapid aging.

    So. For some reason our authorities decided to cut the coverage for metformin.

    I can't find any reason in it. Not at all. But you can read it as diabetic pushed over the edge at some part of the world.

  • SilverAvocado my son does not seem to have the same kind of contempt about his diabetes as his hypothyroidism, which is just brushed under the carpet as far as I can see. A private Endo has just said to raise his dose of T4 and also his Hydrocortisone. I'll be interested to see how that turns out.

  • That's why I say they correlate as hypoT is known to cause blood sugar issues which can lead to diabetes. They probably go hand in hand to certain level.

  • They do...ont they?

  • Found this while googling around.

    ncbi.nlm.nih.gov/pmc/articl...

  • If you suffer one autoimmune disease, the chances of having another are significantly raised. Diabetes, Systemic Lupus, Sjogrens Syndrome etc are more likely. And vice versa; get autoimmune diabetes and others are more likely to follow.

  • This article links thyroid and diabetes problems:

    Thyroid Disorders and Diabetes - Diabetes Self-Management

    diabetesselfmanagement.com › .

  • UrsaP SilverAvocado Justiina

    can't Hypo lead to diabetes...? (Can it work the other way around too - I wouldn't be surprised to find that those with Diabetes also end up with low thyroid function)

    If you think of Hypothyroidism as an auto-immune problem rather than a thyroid problem (which it is in the majority of cases), then having one auto-immune problem often leads to another.

    When I was young, Type 1 diabetes was diagnosed in children. Type 2 occurred in adults. Now, things have changed (or diagnosis is sometimes better?) and it turns out that many of those adults assumed to have Type 2 turn out to have Type 1.

    Type 1 diabetes is an auto-immune problem in many cases. And such auto-immune problems can get worse and worse, as we already know.

    If you have type 1 diabetes, your body does not make insulin. Your immune system attacks and destroys the cells in your pancreas that make insulin.

    Source : niddk.nih.gov/health-inform...

  • True, type 1 is autoimmune connected to entero viruses. At least in childhood type 1 diabetes.

    Prevalence of type 1 childhood diabetes is highest in Finland.

    Cross the boarder and 6 times less autoimmune diseases in Russia.

    Adulthood type 1 diabetes could be caused by other pathogens or secondary to other autoimmune diseases that weaken the system , just guessing.

  • humanbean - I did read recently that all diabetics should have their thyroids checked - didn't bookmark it :-( However having it tested would more than likely show *normal* based on the posts we read here :-)

  • Marz Yes I'm sure you're right. It's weird that I can come to hate such an innocuous word as "Normal"!

  • My son has steroid induced diabetes since going on Hydrocortisone. They don't seem to want to give it these days. I wonder why!

  • Yes, BUT thyroid disorders are considered mainly "female" problems while diabetes affects at least as many men as women:

    cdc.gov/diabetes/statistics... (stats for the USA). In fact, in 2014 more white men were diagnosed with diabetes than white women. Proportions were a bit different for black people with slightly more women being affected....which makes me wonder why. Social, economical disadvantage possibly?

  • Well poverty can lead to bad habits as you simply can't buy healthy food. I think black poor women especially have rubbish diet. And in US they use more corn syrup which is nasty stuff.

    But on the other hand black people can have genetic mutations , they for example need more vitamin D / longer exposure to sunlight.

    Unfortunately it still is mens world. If men would suffer from thyroid issues even half as often as female they would have fixed it already.

  • They most certainly would. I read somewhere that "if a man suffers from hypothyroidism it tends to be more severe". So even when they have hypo they are being treated more seriously. Saying that, I suspect there are plenty of men there with undiagnosed thyroid disorders.

  • Ofc. Like men flu. It's far more worse. Naturally. Women just imagine it.

  • lol

  • P.S. It's really not funny but tragic but I prefer to laugh than cry...

  • Haha, I know the feeling.

    But seriously in swedish study medical students were given information fictional patients.

    These patients had same history, health issues and same job (truck driver) but other one was male and other one female.

    Majority of medical students would treat the male , but consider the female depressed and recommended psychiatric care.

    These fictional patients were suffering from neck pain.

    Even female medical students considered the female patient depressed and anxious.

    They could compare these patients, all other details were matching except the sex, they could see it all was exactly same and still they considered that the male was experiencing real pain.

    What amazes me is that couldn't see how wrong it was to do so. They had both files in front of them!

    In Sweden they have tried to learn from this and change the attitude.

  • OMG!!! Do you have a reference for this study? Anything: a title, author(s)? (I assume it was published or translated into English)

  • I will search it for you. It should be in English as well if I remember correct.

  • Thank you! If you find it it would be good to put it into a separate post as other people might be interested ;)

  • Great idea! Will do that when I find it.

  • I am lazy a**, but found this, online.liebertpub.com/doi/a...

    Katarina Hamberg has done few similar studies with chronic diseases. THat is not the paper I originally read, but cannot find that paper which had more discussion of the matter. Too tired to make new posting, or think about new posting :D

  • Great job ;)) Thank you!! I took a liberty to post it on your behalf:

    healthunlocked.com/thyroidu...

    Please let me know whether you would like me to change anything in this post.

    Take care xx

    Kitten1978

  • This may be what you were looking for: I'm posting the journal, authors and abstract:

    J Womens Health Gend Based Med. 2002 Sep;11(7):653-66.

    Gender bias in physicians' management of neck pain: a study of the answers in a Swedish national examination.

    Hamberg K, Risberg G, Johansson EE, Westman G.

    Author information

    Abstract

    BACKGROUND:

    Research has raised concerns about gender bias in medicine; that is, are women and men being treated differently because of gender stereotyped attitudes among physicians? We investigated gender differences in the diagnosis and management of neck pain as proposed in a written test. The design eliminated differences related to communication and patient behavior.

    METHODS:

    In a national examination for Swedish interns, using modified essay questions, the examinees were allocated to suggest management of neck pain in either a male or a female bus driver with a tense family situation. The case description was identical with the exception of patient gender. The open answers were coded for analysis. Two hundred thirty-nine interns (41% women) participated. Chi-square-tests were used to measure differences in proportions, and t test was used to evaluate differences in means.

    RESULTS:

    In certain areas, significant gender differences were detected. Proposals of nonspecific somatic diagnoses, psychosocial questions, drug prescriptions, and the expressed need of diagnostic support from a physiotherapist and an orthopedist were more common with females. Laboratory tests were requested more often in males. Both male and female physicians contributed to the gender differences. When assessing the impact of the patient-doctor relationship for health outcome, male physicians underlined the importance of patient compliance foremost in female patients, and female physicians did the opposite.

    CONCLUSIONS:

    The results suggest that physicians' gendered expectations are involved in creating gender differences in medicine. The inclusion of gender theory and discussions about gender attitudes into medical school curricula is recommended to bring about awareness of the problem.

  • I'm sorry to all intelligent and free-thinking doctors who might read this comment but I cannot help thinking many doctors are actually quite numb! Mind you: they don't get much, if any, teaching on statistics in medical schools... The idea of listening to their patients also isn't high on their agenda.

  • So true. They aren't even taught what reference range stands for. For them reference equals health and one number can matter, as we know for example for B12 if range is 120-650, 119 = illness and 121 = health.

    But that fits the philosophy of the minimum level to avoid illnesses.

    Like vitamin D, over here in Finland recommend RDA is 10 mcg. Because that's considered the dose preventing rickets.

    Same applies to thyroid I think. If range for ft4 is 10-25, 10 is considered enough to survive.

    In modern medicine quality of life seems to be secondary to lowest possible number keeping you alive. Which we all know is stupid as for me and you that 10 can mean different thing than to someone else symptom wise.

  • They must know it's wrong though. I'm sure they aren't thinking in terms of "ranges" when it comes to their own and their loved ones health...

  • Far far too many thyroid patients are simply too accepting of a much poorer quality of life plus as is evidenced on here many just accept their dictors saying results are fine or your symptoms are nothing to fo with thyroid

    Leaving out of the ewuation the 5 in my family who all have central hypo and only do well on NDT i know quite a lot of thyroid patients of only 3 of them are 100% fit and well on t4 only

    The rest are just jogging along but will not push matters to find out why or try t3 or NDT

    So i think theres far fsr more than 10% who are not doing well on t4 alone

  • I agree, @reallyfedup...have just said something similar on another social site, that Thyroid patients have come to accept a 'half life' as 'fine, and so distorting what 'feeling well' means. Feeling well could be just being able to get out of bed for some, whilst others might mean they can function all day.

  • Yes, I suspect the same judging from people I meet. Very many times I've found out someone is hypo and they've told me they're doing very well, but then later I find out they are very ill. But they just grin and bear it. I'm sure this distorts the research and allows medics to argue that people are fine. But also I'm sure it's the attitudes of doctors that is largely responsible (as well as the social stigma, but I think it's a vicious cycle with doctors attitudes contributing to the stigma, and the overall stigma reinforcing doctors to carry on) for people glossing over things. They learn they're going to be shamed or ignored if they complain or believe that all their health complaints are a result of the thyroid.

  • I agree that the assumed population of T4 only treated patients 'doing well' is likely to be false for many reasons. Considering that I thought I was doing all right until after 10 years of Levo only things started to go wrong with my digestion (and of course unknowingly my nutrient levels) and pains I'd complained of for years became debilitating, and migraines couldn't be controlled etc. etc. Only then did I start to question my medication and my treatment. I believe I was never doing well but the slow running down of a healthy body takes time for symptoms to manifest themselves. It makes me so angry because doctors are conspiring to make a large number of people unwell, even if those patients don't know it yet ! More maddening is the fact it is so avoidable! I am taking T3 now....

  • Not wanting to distract attention but to illustrate the point that research and evidence changes (possible to the surprise of big ego medics😲) this just in WDWTY:

    ......Chemotherapy has been the routine treatment for cancer for more than 60 years—but researchers have discovered only this week that the toxic drug helps breast cancer spread, and makes it more lethal......

    Very sad news for many (who have undergone treatment and borne witness to this claim) and Dame Sally must surely have known this jnfo ahead of the great 'individualized' treatment for cancer she recently announced, but chose to keep quiet about.

    There is hope that the truth will out for thyroid disease diagnosis and treatment options.

    I hear mutterings.... yes, but when....

  • Also the chemo affects thyroid function. Are patients routinely tested correctly and treated ? Possibly not - symptoms no doubt blamed on the disease. So there's another possible few thousand sufferers.

  • I'd just point out that currently I cannot find any thyroid guidelines on the RCP site.

    Even the BTA line from this page:

    british-thyroid-association...

    To the copy on Thyroid UK's site!

  • helvella I have recently heard that the full guidelines are behind a paywall. Making it out of reach to most.

  • And what is the point of that in this put it all out there age? So we are being managed by guidelines that we can't even see?

  • I'd love to see a court case about inaccessible guidelines.

    The law can have many twists and turns, not all of which are at all clear, but somehow the idea that you can be subject to guidelines to which you have no access seems entirely unacceptable. At its simplest, how do you know the guideline quoted at you even exists? Or is current?

    There are times I'd love to have a vast pot of money to be able to throw at the issues that arise. On the other hand, the ones who would benefit most would be the lawyers - as always.

  • Wouldn't be so bad if we actually had a care plan and real discussions about treatment approaches. In all the time that I have been seriously ill I am the one asking my doctor for one as I found numerous guidelines that said it should have been agreed with me. My doctors care plan involves being unavailable and refusing to apply common sense let alone recent research. I thought that we had left paternalistic autocratic medicine behind long ago. Someone forgot to tell the doctors?

    And yes we buy lottery tickets as then I could really make some noise.

  • I suspect helvella , that 'if' the guidelines exist that they will be very outdated! Hence the rubbish understanding and treatment, that is worse now than it was 30 years ago, despite the fact that the medics know more now than then.

  • Ok we can't go down the FOI request route so we need a member of RCP to tell us?

  • Not convinced you cannot go down the Freedom of Information route.

    Isn't it possible that as soon as the guidelines are introduced into NHS clinical practice, they might then be covered by the FOI?

  • I didn't realise that there ever had been any guidelines for the treatment of hypothyroidism. I thought there had only ever been a "Statement" and/or a document about "Management".

  • The document I was referring to is this:

    thyroiduk.org.uk/tuk/guidel...

    Yes - calls itself a statement.

    And:

    thyroiduk.org.uk/tuk/guidel...

    Which calls itself guidelines.

    Neither is put together in a way that should absolutely be required. Things like: Having a review date that is observed; Having a mechanism for contacting those responsible when errors and issues are found; Actually being reviewed in the light of new findings.

    Specifically, the guidelines document contains a clear mistake - probably a typo. But I cannot get it changed because no-one can grasp the issue and deal with it.

    As I see it, a guideline document should self-combust the moment it reaches its review date. Whilst (arguably) and extension of that date might sometimes be required, that should itself be a formal process which explains why that was done and re-publishes the document with the new review date.

  • I thought these were the latest "guidelines" for the UK :

    btf-thyroid.org/images/docu...

    Although this would have no official standing I just found this in my bookmarks :

    ncbi.nlm.nih.gov/pmc/articl...

    Oh, and there is this page as well, for what it's worth :

    btf-thyroid.org/professiona...

    And this one :

    british-thyroid-association...

    The document from the RCP that you've linked, helvella , is mentioned on this page (the BTA page) near the bottom under "Guidelines from other bodies". I'd never noticed that section of the page before.

    I got a bit muddled answering this. I can't find a single document that describes itself as "Guidelines" for UK consumption, and I don't think I ever have.

  • In the context of the UK, it seems staggering that NICE have never been told to produce proper guidelines. (Not sure I want them to on the "be careful what you wish for..." basis.)

    Further, given the way the UK is structured, we probably need variants for each of the constituent countries - despite the same patients often passing across borders.

  • I too know half a dozen or so with hypo dx .

    Still describing hypo symptoms despite being told "normal, no action"

    All T4 only , all have poor quality of life,

    I think it s human nature to say ,Oh I'm ok. But when you delve deeper it transpires this isnt the case.

    I read somewhere that it's in our DNA to put on a good face. The alternative was to be caught by the lion and eaten for supper ☠️ Or maybe thebig bad wolf if in the UK!!!

    I so doubt any such figures being quoted about anything to be honest.

  • I recently moved to a new location. The first neighbour I met, was clearly suffering from either undiagnosed or undertreated hypoT. Turns out she is undertreated (in my opinion) on T4 only, also has fibro diagnosis, asthma, takes omeprazole and generally struggles through each day. It had never occurred to her that the fibro, omeprozole, asthma etc just 'might' be connected to the thyroid condition.

    How can we possibly know about the many thousands of people in this sort of situation. Both they and their doctors have simply dismissed their thyroid condition as being the cause of their poor quality of life.

  • Dear Diogenes,

    I just want to say THANK YOU TO YOU for posting this comment and TO YOUR German colleague for sharing their toughs on the guidelines. It's good to know that there are good, sensible thyroid doctors out there, even if most of them are not in the UK.

  • Go

  • I have one question too ask ? Do any of these Dr's have themselves or family members any thyroid issues ?

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