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Thyroid UK
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Ignorance of thyroid function and treatment out in the open

I received the copy of a letter from a representative of the Scottish Health Service regarding the petition PE1463 about thyroid testing in Scotland. I quote two statements from this letter:

The quality of the analytical techniques in terms of sensitivity, specificity and turnaround time has greatly improved over the last 30 years with improvement in assays and automation. However, the understanding of the pituitary thyroid axis, thyroid physiology and therefore the appropriate hormones to measure in specific clinical circumstances is long established and hasn’t changed, therefore quoting older references was deemed appropriate in this area.

The last underlined sentence says it all. It is utterly wrong, and shows quite starkly how unprofessional and ill-informed the Scottish Biochemistry Group and associated medics are. There has been a complete revolution in our understanding of thyroidology and the implications for therapy and diagnosis in the last 10 years of which they are completely oblivious. That sentence says it all: people who can seriously stand by that are unfit to pursue their professions as they are not up to date in what they think. They are either ignorant or don't understand or don't wish to. I cannot think of another situation where a profession has so completely given themselves away. Not even the first sentence is right either. FT3 assays have not improved one iota since 1985.

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Thanks for your comments.

So what hope is there for us? What can be done to force a change of attitude from such medical professionals?

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Showing them up for what they are, directly by presenting the new information in front of their noses and emphasise its implications and indirectly, by arming patients with the knowledge and self confidence to confront wrong ideas when having appointments - no matter if the professionals turn their heads - at least it gets a response.

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Diogenes, I often show medics up for what they are but with little avail and it often has been detrimental to me, as a patient needing help (not just with thyroid problems). Yet, when refusing to help they quote "Do no harm"... when it suits them. Such hypocrites! However, it does not achieve anything at all. Surely these people should be held responsible for ALL the damage/pain/distress/death they cause but they escape all the time.

So, what exactly should i show an endocrinologist next time I have an appointment? I would appreciate your advice/opinion because I have recently requested a referral to see an NHS endocrinologist. I can already envisage the barrage of excuses, lies, etc. he/she will advance in order to beat me down in refusing to help, so would like to be well prepared to argue my points through facts. Thank you if you feel able to guide me.

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I would say, at least, that Dr Anthony Toft former head of the BTA and an eminent thyroidologist has supported the new concepts and their implications, not only by himself but in concert with us in the paper

Time for a reassessment of the treatment of hypothyroidism

April 2019 BMC Endocrine Disorders 19(1)

DOI: 10.1186/s12902-019-0365-4

John Edward M Midgley, Anthony D Toft, Rolf Larisch, Johannes W Dietrich, Rudolf Hoermann

This paper, involving a top UK doctor, should at least be considered worthy of intelligent scrutiny and understanding.

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Thank you so much. However, how do I access the links please? Am a techophobe (sorry). However, I have every intention of being prepared with facts they simply can't turn their arrogant noses at, as is the norm.

When I asked my GP if she knew who Dr Toft was, last year, she replied she did not know!!! An easy porkie to leave her temporary off the hook or real ignorance? Surely, don't GPs know about Dr Toft?

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I think if you put:

DOI: 10.1186/s12902-019-0365-4

into Google, the paper should come up to print out.

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Thank you again, it works! I really appreciate your advice. All printed. Fingers crossed.

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My experience re the paper...

My endo (one appt. in Jan, and emails/letters, so far) showed interest in this paper and has asked me to send him a copy! I see him again later in the month and will follow up on this

He did bang the suppressed TSH drum....he saw I wasn't convinced. Interested to hear his reaction after reading the work published by you and your colleagues when I see him next.

I'm not sure that he has had a self-medicating patient before or one who has used private tests, papers and articles to back up their actions/opinions.

I asked to see an endo (partly curiosity!) and fully expected him to dismiss my journey from T4 to T4/T3 and on to T3only. I rather took the wind out of his sails when I starting off by saying I wasn't asking for T3 (at that point in time anyway) because I was buying my own.

I found him pleasant and open minded.

I was first diagnosed as hypo 20 years ago, never in good health but at the mercy of several GPs who in retrospect were out of their depth when I didn't respond to Levo. None of them would listen when I repeated that I thought my metabolism was compromised. Result....diagnoses of Fibromyalgia and CFS.

In desperation I found this wonderful forum and the host of knowledgeable people who have advised and helped educate me and given me the confidence to take control.

Having taken this journey I fully agree that we need "to show them up for what they are" and would encourage patients to "hit the books".

As ever....huge thanks

DD

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How to show someone up without offending and making them even more resistant is very difficult!

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I live in Scotland and find this totally depressing, but not entirely unexpected.

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May I ask you why you are not surprised, is it because of Scottish policy or generally speaking? And yes it is depressing for us all. No hope...

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A mixture of both probably. I was pleased to see that Lorraine Cleaver had managed to get the Scottish Parliament to show some interest, but every GP I have ever seen up here just spouts the same old views about thyroid testing and treatment.. Even my newly qualified nephew doctor, when quizzed, showed the same ignorance. I used to see Dr Skinner in Glasgow and was horrified by the way he was treated by the GMC when he had given hope and health back to so many people.

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Thank you for replying. It is a desperate situation. Doctors do not wish to be "troubled" too much. So narrow minded! The worst part is they refuse to be educated, no doubt that would be too much for them.

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I'm also in Scotland and understand your reaction. Did you see the video of the Petitions Committee's latest meeting? If not, I posted a link the other day.

Their forthcoming, and final meeting, now seems to be the only chance that Lorraine Cleaver's unstinting work will effect much change.

Joe Fitzpatrick did listen, as you no doubt know he wrote to all Health Boards directing them to prescribe T3 should patients had a clinical need for the hormone. However, unless a consultant chooses to make that decision no T3 will be offered!

Nothing much changed!

My diagnostic test was 20 years ago and, then, routinely included T3., More recently my GP was no longer allowed to request T3 tests. My current GP admits his knowledge is scant beyond checking TSH and T4. Progress???

He is a lovely young (ish) man who is caring and (thankfully) open-minded....an otherwise excellent GP who is unable to offer me the treatment I need because (my words, not his)

a) he lacks the knowledge

b) his hands are tied behind his back by the "guidance" he must follow.

c) the fear that someone is looking over his shoulder....checking everything.

d) the risk to his registration should he exercise personal integrity and ignore "the rules"

I'm lucky at least he shows empathy.....many clearly do not

When we first met I explained that desperation had led me to private testing and self medication.

I am Dio2/homozygous and have RTH which means I take a large dose of T3...I may as well have been speaking Klingon when I explained this to this new GP.

My previous GP left the Practice but had been supportive of my maverick ways - I kept her informed with written up - dates. She too lacked much thyroid knowledge. Her response to my self-medicating, "How you feel is the important thing".

Med schools are failing both students and their future patients but the decision makers have their heads and their arrogance stuck so firmly in deep sand that only a shift of seismic proportions will change things.

I bet your nephew sat through very few lectures about the thyroid! And I bet he was taught next to nothing about the nutrients which are vital to our well-being....beyond a number in a range!

The truth, to coin a phrase, is out there, but "they" , the decision makers, appear to refuse to accept change ....people will die (and have done) as a result.

We here, who have support, advice and direction, are the lucky ones, many of us buy tests, nutrients and T3 - that should not be necessary and that must change. As was raised at the recent Petition Committee sitting, many for various reasons, are not in a position to do that and are therefore overlooked, misdiagnosed or not/under treated.

Dr Midgely is so right, we must use our experience, the knowledge we have gained and the research we have accessed to try to help break the mould. If we all make that effort then by a slow-drip process we might eventually reach understanding ears and see cracks appear.

Current thyroid treatment is reprehensible and I might suggest verging on the criminal, I wish I had youth and robust health on my side......!

I've still to read all the comments here but one tning is certain...we are all like minded. The old brigade must go.....but I fear the new arrivals will be equally close minded.

What do they fear... losing their perceived position on pedestals. High time reality kicked in!

Sorry this wasn't meant to be a rant!

Best...

DD

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Not a rant at all...very wise words and you are right: my nephew had very few hours of training in thyroid matters. It is all so frustrating. I do wonder why my GP does not query why I no longer need anti-depressants and take many fewer NSAIDs. I have told him that my health is paramount as my husband has Parkinson’s Disease and I will be a full-time carer in the future. If I was as unwell as I was before taking T4+T3, I wouldn’t be able even consider that role.

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Good to hear you have improved, wishing you and your husband the best.

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Thank you DippyDame. All the best to you too.

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What can we do? It is not as if they have an effective governing bodies to complain to. Dr Skinner said a long time ago that it needed somebody to sue and this issue does need to start being heard in the courts. Looks like taking it to Scottish parliament has led to little change. I would say that they are not ignorant, ill informed or stuck in their ways, they are liars.

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Thank you for sharing. I know little about how scientific research gets disseminated and adopted but it strikes me that the medical world needs a genuinely independent expert body capable to understand the science and decide what is and isn’t the truth. A body represented by people like you.

In the area of law, independent courts make judgments and whilst these may be challenged or criticised they cannot be ignored as they have the status of law.

The research into thyroid conditions is generally poor with dogmatic beliefs, which skew the interpretation and the lack of regard for the immune aspect of most of the thyroid diseases. The quality findings available seem to be either dismissed or simply ignored. Lobbying individual politicians or doctors will unlikely change this. Is there a way of exposing this scientific ignorance in a public way?

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I think the problem is that the medical world has always been a closely guarded closed shop which repels intellectually everyone else not qualified formally in this. This repulsion is simply done by the process of ignoring and refusing to acknowledge that any alternative possibilities exist. It is a very conservative world also, and once a medical belief and the action upon that belief is accepted as a given, very few practicing medics will change their minds, until absolutely forced to do so. That is a depressing thing to say, but it has often been said that presentday medicine is always 10-15 years behind the now discovered facts. Therefore today's medics have to resign and die before change can occur.

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In which circumstances might medics be "absolutely forced" to change, to use your phrase? I think probably only litigation would achieve this.

I'm not sure whether class actions for compensation have been incorporated into the UK legal system, so it's probably down to an individual or group(s) to apply for judicial review. That said, the current government has made this much harder, in the name of 'reform'. And while the JR process can be very useful for publicity purposes, even if the judge finds in favour of the complainant(s), the defending organisations will only be required to re-consider their decision - then they'll simply make the same one all over again.

I think perhaps we need our US cousins - rich ones, obviously! - to create a stink with a class action. It's remarkable how much attention British establishment bodies pay to the outcome of relevant US legal cases. An American civil action could well be more effective in bringing about change wthin the British medical establishment than a JR pursued at great cost through our own courts.

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I think perhaps we need our US cousins - rich ones, obviously! - to create a stink with a class action. It's remarkable how much attention British establishment bodies pay to the outcome of relevant US legal cases. An American civil action could well be more effective in bringing about change wthin the British medical establishment than a JR pursued at great cost through our own courts.

I doubt there is so much need for a class action lawsuit in the US, so we could be waiting a few decades. Americans can be treated with different brands of Levo, they can get prescribed T3, and NDT is considered to be an acceptable treatment. I think they can be treated with a TSH which is much, much, MUCH lower than that used in the UK, but I'm out of date with what that level of TSH is. When that article came out recently in the BMJ saying that treatment wasn't required until TSH was > 20 I couldn't believe my eyes. This one :

bmj.com/content/365/bmj.l2006

There have been a few occasions where I thought, no, I must believe that things will change and sufferers (mostly women, naturally) will finally be believed. But optimism has died completely now thanks to that link above. I really do believe that doctors and government are determined to kill off the sick and the elderly. And while we have crap lives the pharma companies want to keep us alive but sick to maximise their profits.

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Good points all. The study in the BMJ was a disgrace. A little bit of hope emerged for me when the BTA actually refuted its findings in a press release I saw on the ITT Facebook group. I can't find it now! But of course, the damage has been done and the guidance has already made its way into MIMS, whose editors have refused to revise it in the light of the BTA's statement.

When I've done a little more reading, I plan to put up a new post about structural and overt bias against female patients by healthcare systems and practitioners. Currently reading Caroline Criado Perez's 'Invisible Women', and will shortly receive Maya Dusenbery's 'Doing Harm'.

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Most interesting. I’d like to hear more.

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Looks like a good book, just ordered a copy useing amazon smile with a donation going to thyroid uk.

Thank you.

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You're welcome. :-) Hope you find it interesting.

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If it's overwhelmingly women affected by this, as research appears to show, could this be brought as an equalities issue and funded via legal aid? Has anyone on here with the requisite knowledge ever tried going to the media? Maybe the Guardian would make an issue out of it. Mind you, having seen the government 'appear' to cave in to the disgrace that is medical marijuana being illegal here, I hold out little hope, since not one single person in the UK has received a prescription for it in England, Wales, or NI at the point of writing.

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Also worth remembering that when those two Australian doctors discover stomach ulcers were caused by bacteria rather than lifestyle choices, it took 20 YEARS to get into the mainstream. Maybe worth pointing that one out to today's quacks.

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When NHSE consulted on the proposed withdrawal/restriction of T3 prescriptions back in...2016? 2017?...I responded and mentioned the equality issue as part of that. I can't remember the phrase used by NHSE in response when the consultation ended (lost a lot of files when my old laptop died) but it was something along the lines of, "We've looked into it...blah blah...Nothing to see here, move along."

I think this still needs to be raised for proper consideration under equalities legislation, so perhaps the patient representatives could make it part of their submissions to NICE. If anyone reading here is involved in writing a stakeholder's response to NICE, please, let us all know!

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I am a stakeholder and will reply when I've digested a rather turgid document. I think I have until July 17 to do something. It takes some reading and a lot of the statements are not very clear.

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Great! Many, many thanks.

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Thank you.

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Thank you!

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Has anyone submitted a complaint along these lines to the EHRC?

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I'm not sure.

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Thanks for the link, it was new to me.

I notice that neither statement includes any concern about diagnosing central/secondary/tertiary hypothyroidism. Those conditions have essentially been "vanished" from the medical record in the UK.

I predict that deaths from untreated hypothyroidism (with any cause) are going to rocket in the UK in the next 5 - 10 years. Prescriptions of anti-psychotics, anti-depressants, and anti-anxiety drugs are going to rocket too. And how many will be too ill to work but won't get benefits because they are not diagnosed with any medical conditions. Starvation and suicide will probably rise too - I think they already have for a thousand different reasons, thyroid issues will be just one of many.

I've read the Maya Dusenbery book. I thought it was very good. But I need to read it again. I've never heard of the other book you mention, so I'll look that one up.

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Criado Perez's book was only recently published; the subtitle is 'Exposing bias in a world designed for men'. It has a section on the data gap regarding occupational health, and two chapters on the medical system. Roughly one quarter of the volume is taken up with academic references to forestall the inevitable entitled whinging from those who like things the way they are.

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Somehow I get the feeling that NICE are finding it difficult to compile evidence that is acceptable and wellfounded enough to support ANYTHING they can come up with. They have an inkling that something should change but can't easily form any sort of coherent policy to bring whatever it should be, about. The RCT question of relevance and suitability to prove a point (the lack of such adequate trials) is giving them real trouble I think.

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Hello Humanbean, totally agree with you. I'm a male with hypothyroidism but the lack of interest in the failures of levo monotherapy or the dismissal of people with symptoms but a raised TSH below 10 seems completely gender based to me and dismissive of women as exaggerating or depressed. The BMA guide to hypothyroidism warns the reader that "mother" may be a bit snappy or tearful but will be right as rain and ready for her domestic chores once on levo. As a man it made me wince.

Michael

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Can you link me to this BMA Guide to hypothyroidism, please. It sounds absolutely appalling!

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It's a printed book, so no link. It's not too bad but basically says this is a straightforward condition, it doesn't really acknowledge that anyone has anything but a perfect recovery on levo. I'm away at the moment but will send a screenshot of the stuff about 'mother' when I get back home.

Michael

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Thanks, Michael.

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A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die, and a new generation grows up that is familiar with it.Max Planck.

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And in this case, in the UK at least, treatment gets worse and worse, so the new generations of doctors to come will be even worse than the ones who have gone before.

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I rely on the Biblical parable of the sower. Explains a lot about the human condition.

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The Bible says things will get a whole lot worse before they get better. The only real safety is in choosing the right side!

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This sounds like too much narrow mindedness and ignorance. It is inconceivable that scientific discoveries and progress can just be disregarded and wait their turn till the next generation comes in. Civilisation would not have progressed if this was tolerated in other scientific fields.

Given this is where we are how can this status quo be broken? Do we need more studies and publications to saturate the field or are we, as individual patients, able to force progress somehow? A wind of change is needed without a doubt. There’s potentially too many of us to just be dismissed and labels as obsessive hypochondriacs?

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Could it be that we, the public, whom this 'medical world' serves, have allowed this? Allowed these jumped up medics to put themselves on pedestals and promote their own self and superior importance? We have been too in awe and fear of them. Forgetting they are people first and like the rest of us humans fallible? Pompous attitudes and arrogance have discouraged questionability. Isn't it time we stopped accepting this and starting demanding the justifications and evidence rather than just their word. Isn't it time we started calling them out. Refusing to accept their ignorance of our condition?

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Absolutely! Unfortunately too many people still believe they are superior being and deserve huge respect!!! That’s what is encouraged at medical school, that they are god figures and of course they believe it.

So it would take a huge change in The patients’ way of thinking to put them right without being rude of course.

I have always made them aware I was not blindly impressed by their title but by their ability and willingness to help patients get better when possible. I always say respect goes both ways...

Unfortunately some people lack the ability to express themselves in order to fight their corner and doctors like that, they feel empowered.

It’s such a sad situation.

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I do agree, and agree with being polite as far as possible, and the respect being two way, it also needs to be earned. It is not an unconditional right. I suspect that too many incompetencies are hidden behind the arrogance and pomp.

Sick people are more likely vulnerable and can be malleable, especially if Dr is a strong character. By doing what they are doing they are basically kicking patients whilst they are down, picking on the weak. I know my parent's generation saw Drs as 'gods' to be obeyed without question. TG that attitude is changing. Probably why Drs more defensive, they are being called out more and found wanting. So their answer is, to often, to attack the patient by withdrawing their meds.

Sad world we live in!

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Unfortunately this is true. Most doctors don’t really care about patients. They chose the profession for the status it carries still and the money. They also don’t want to spend too much money out of their surgeries’ budget because it’s their business = their money. The least they spend per patient the more they keep!

Very sad uncaring world indeed!

And yes, respect should never be given unconditionally, it should be earned as with any job.

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It is to their eternal shame that they feel unable to swallow their rediculous pride and sense of entitlement in order to adopt Dr P's approach to his patients. In his book he writes, " that is, that the patient is just as bright as I am, and perfectly able to work things out given the knowledge".

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I think people often confuse respect for a position with respect for a person and many medics (and others) expect their position to automatically gain them personal respect........despite the fact that they may not have deserved/earned it,

Much of this is historic and stems from the days when fewer people entered tertiary education....and education per se was generally respected. The "doff your cap" era - ordinary people didn't question the educated, hence the old saying "Doctor knows best".

Despite social change remnants of this has lingered on - particularly in the gilded towers of medicine it seems.

Today many people in power (often men) probably see the old ways, changing and therefore their grip and influence diminishing. As a result instead of opening their minds and embracing new ideas their growing insecurity generates a determination to tighten rather than loosen their grip.....and their minds!

Given that most suffering thyroid patients are women it doesn't take a lot of thought to work out that power is at play.

The time has come to politely but firmly make it known that we do actually have a voice....and that it doesn't agree with the establishment.

As Hillwoman says there is no intellectual curiosity in the medical profession now ... medics are being trained like robots to follow check lists and comply with guidance from above and woe beside them if they think for themselves and deviate from this.

Medicine is a science but in a GPs surgery that seems to have been forgotten

I asked a GP a straightforward question recently and he said "I'd rather leave that to a consultant".

No wonder we are losing medics.....educate them properly, untie their hands, allow them to think, encourage them to use professional integrity and we might all be surprised.

Dr Ord in 1877 when he discovered thyroid disease had the freedom to exercise his intellectual curiosity.

And we are expected to call today's protocol progress...... it is taking us to hell in a hand cart!

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I agree with many things you say. However I have realised women GPs and consultants behave in the same arrogant know it all (not really!) way!

They have no intention of changing the status quo because it makes their lives easier at the detriment of the patients’ health.

I have always made a point of telling doctors what I think, politely of course, but they don’t like it, being challenged! They don’t like me at my surgery because I am one of the rare ones who will not blindly accept their flawed opinions, their fobbing off and their lies. So not an easy position to be in especially when in need of serious help. Their profession has always enjoyed privilege and they are reluctant to let that go. They, truly, get away with murder. Sadly I can’t see any changes soon. It would require nearly all patients to revolt, let them know we’ not happy with the poor service they provide. Many people moan but when it comes to take a positive action they hide!

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Sadly you're right that people will hide rather than put themselves forward.

Your point about women doctors I don't think contradicts or refutes the gendered aspect to thyroid treatment. It's still the case that female medics have to buy into the power structure as it is if they want to participate and accrue the associated benefits (in terms of status, income, etc.). Women are still exhorted to 'be like men' in order to get along, which is one of the subjects examined in Criado Perez's book that I referred to elsewhere in this post. If certain areas of work, and certain areas of medicine, ones which are associated more with women than with men, did not thereby lose prestige, I think the whole healthcare system would look very different indeed.

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Of course I totally understand that women working in the same line of work as men are still expected to behave like men, not an easy situation.

However patients should be willing to make an effort in not accepting the uncaring and bullying behaviour of doctors by telling them they are not prepared to accept this any more. It takes honesty (rather than speaking in the medics’ backs, and moaning gossip that achieve nothing) and courage and also doing some research. Sadly I can’t see such a shift in the majority of patients, do you?

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I think you're quite correct. Sorry, I didn't mean to call your observations into question.

I live in a fairly remote rural community that is 'small c' conservative - possibly to the point of insanity, but that's another story - and though people complain bitterly amongst themselves about the sole GP practice, hardly anyone has made a formal complaint over the past 25-30 years. Those that have are all 'incomers', and their status is treated by the GPs as a confounding factor!

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I didn’t think you were calling my observations into question.

I totally understand what you have explained regarding people’s attitude/ behaviour in remote conservative areas. It doesn’t seem to be that much different in more populated areas in that people, generally, “fear” for a better word the authority of medics and dare not tell them when they are not happy about a situation. That is a difficult thing to overcome. It’s a shame as it’s only when patients en masse complain that we shall see a change in behaviour from doctors. I fear it will never happen 😩

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I wonder whether we have to encourage members of all thyroid groups to go on a mass demo - in wheelchairs and/or with carers if necessary. The media aren't really interested in the health problems of older women, but perhaps they would be if a lot of us were prepared to make a lot of noise down in "that there Lonn Donn" (Hot Fuzz film ref).

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Would it work really? There is so much apathy everywhere it seems, and then would people who are not really ill, suffering with truly debilitating illnesses truly understand? No matter how one tries to explain the situation to people who don't suffer with the same problems they don't get it, not quite, although they say they understand. Sorry feeling thoroughly at the end of my tether. Thanks for your output.

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To be honest, I feel much the same way. I suppose I'm just trying to cling to hope that things can change for the better for us - even though that may be a fool's hope. x

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Yes we need to cling to hope somehow. xx

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Well said, sister!

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You've put the situation very well indeed!

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"The quality of the analytical techniques in terms of sensitivity, specificity and turnaround time has greatly improved over the last 30 years with improvement in assays and automation."

I wouldn't have known if that was true or not, but either way I think it completely misses the point. The problem is not with accuracy of the assays as such (though of course they need to be accurate) but their interpretation and its effect, on clinical guidelines etc.

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Madness. Medicine must be one of the only fields, academic or in industry, where this shameful practice can happen. The status quo is almost welded tight shut. A closed book as if everything thyroid related is known. Quite a concept! Most fields/disciplines have competition. Research feeds into other developments, crosses discipline boundaries and, on the whole, makes things evolve for the greater good.

Take engineering for example, products like cars are constantly evolving technically. If a company stands still they go out of business. Even if something works very efficiently it's engineered to be more efficient. It's fierce competition. But where is the motivation for change in the thyroid world? It seems too many Doctors are unwilling to evolve and develop science further. Shameful lot. They'd much prefer to stay put. We need a radical change in thinking and what motivates change. Scientists are usually curious for discovery.

I fear that they just don't "want to get it". It's too much of a cushy little number perhaps. Big Pharma are happy, most doctors are happy, many thyroid patients are happy...but for the rest of us, we just get a quick glance up and down, and told "don't worry you're fine". Erm...HELLO Doc! I don't feel fine!

Honestly it makes my blood boil. You couldn't make it up.

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There is no intellectual curiosity in the medical profession, a fact I first realised at age 13/14, when I simply could not compute the lack of interest in my strange symptoms, and the total unwillingness to help. Unless I agreed to a psychiatric referral, of course. Nothing has changed. If anything, the emphasis on so-called evidence-based medicine seems to have given an awful lot of doctors permission to stop thinking at all.

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You're right there is no intellectual curiosity. Or seemingly from the viewpoint of an outsider. Maybe the evidence-based medicine, by design, deliberately encourages doctors to stop thinking, in addition to giving the "lazier" ones permission. I imagine most courses go like: Read the manual and follow steps 1-4. If blood test A shows X then go to Step 8...and so on. The "thinkers" are so far removed from the patient by default. In the future they'll probably have some AI robot to jab you in the arm, take a quick sample, then compute against a large database and say in Metal Mickey's voice "everything fine, go away".

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🤣 Actually, I think the process-driven method you've outlined is exactly how they work. SilverAvocado has talked about this on the forum; she refers to it as 'flowchart medicine'.

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Yes that's it! SilverAvocado is right. Flowchart medicine!! I like it! That's where the top medics sit in a large room and write new "algorithms" for the treatment of x, y and z factoring in cost, effectiveness, workload, patient outcomes (for thyroid who cares), etc. Job done. If all else fails...please turn to page 483 step 34...entitled "Sending a troublesome patient to Psychiatry".

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Yes absolutely agree. There is lack of balance and too much subjective opinion and personal beliefs that are not subject to critique. Who is able to verify the stance that the BTA takes for example? Why is this body’s interpretation of the scientific understanding taken as gospel? Why are they allowed to disregard and ignore those who voice their disagreement? Why are doctors who step out from ‘guidance’ persecuted? Where’s the balance and reason in this?

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The cynical side of me thinks that if you follow the money trail you may find who's who in the medical world; who pulls what strings. You're right, there is a total lack of academic rigour applied, a system that has one set of voices not being challenged at all isn't the basis for full and proper scientific debate. But this country is like that in other areas. Some are beyond reproach. Not that it's just a problem in the UK I might add.

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I'm new to all this, but would I be right in thinking NDTs and isolated T3 cannot be patented, as they naturally occur and haven't been synthesised? This would explain a LOT. Big Pharma fund universities, co-funds trials, has reps pressurising GPs and other medical specialists. If they ain't making a buck out of treatment that works for us, then we can go Foxtrot Oscar. Keep us all ill so the money keeps on rolling in. 'Health'care isn't the biggest global business on the planet for nothing.

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You are precisely correct.

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Yes you are correct. It's a huge business making tons of money! The GPs get wined and dined at lunchtime by the Pharma Reps. In return they prescribe all kinds. You scratch my back and all that. Quite handy having a big cohort of poorly treated thyroid patients to sell drugs to. Statins, BP tablets, anxiety pills, to name but a few. Maybe we've all got a cash cow ranking with the higher number meaning more cash for them and a license to prescribe all and sundry without a problem, apart from the tablets we actually need at the right doses!! Their funding rules go along the lines of "no potential patent, no interest".

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Interesting that inadequately treated hypo patients have high cholesterol, yet when they have sufficient thyroid meds, cholesterol comes down to within normal levels. Endless consultants tried to get me on statins because of this yet when I told them it would come down once I was optimally treated so I didn't want their statins (which have been based on a lie that cholesterol is bad, yet every part of the body and brain need this) . . . . Their reply 'well yes, that is true' . . . . I feel they know far more than they let on. Let's face it, allopathic medicine is not about making people better, it's about covering over the cracks whilst plying as many drugs as possible. The ones to gain are definitely not the patients!

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Couldn't agree more. Some say the cholesterol test is a cheap/simplistic version of the thyroid test, for the reasons you have given. Yes! Definitely not the patients who make great gains. And the cycle continues uninterrupted...

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Medicine is a science, or so I thought? Science is only as good as the knowledge todate. Sadly with thyroid this seems to mean only as good as the knowledge decades ago!

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You have hit it! Medicine was inveigled into changing abitrary person-to-person examination and with all the new exciting tools, WANTED to be a science but really, given the almost infinite variation of the individual against the population average, is still actually an art first, science second. I feel like issuing a mea culpa in devising better thyroid tests but I did so hoping the medical profession would use them wisely and in context. I did not realise their ambition to rationalise diagnosis in the way they have. I thought tests would be a support to, but not a definition of how to diagnose and treat disease.

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As you say diogenes your tests are meant to support and help but are being, in my mind, deliberately misused and misinterpreted. Perhaps a letter to all the major newspapers from you? Outlining how your work is being abused? Would they get printed? Can you not sue?

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Maybe they don't rate the more up-to-date knowledge and research. If so, why not? What arguments do they have to dismiss new findings? They seem to have a blanket ban on anything that goes against the standard treatment/diagnostic approach. I'm not sure what funding is even available for thyroid research, although I guess at very little. No intellectual property driven research. So no money in it basically, no motivation to change. I fear things look very bleak for us all. Or is that too negative? With very few pushing the arguments (of those pushing I'm very grateful), and no impetus to change, no drive from the doctors, things aren't changing at all. And we continue to suffer as a direct result.

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Because the more up to date research does not support what the old network wants it to show, i.e. TSH and T4 mono. Only. As for funding. I doubt there is anything in the pot. And as BP have started to get embroiled in the genetics companies, they will be influencing research and the direction of funding. Away from thyroid, no doubt!

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Yes I smell the protectionism. Not a good foundation for evidence-based medicine, where they can resist change seemingly unchallenged. Hopefully one day soon those foundations start to crack. Sadly yes you're right, it all comes down to funding. A more humane, ethical system would take people's concerns they have regarding their diagnosis and treatment (and there are large, growing numbers - we can't all be hypochondriacs), and formulate a research agenda with government budget to study it all properly in an objective manner. With learning outcomes feeding directly into primary/secondary care training and practice.

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Doubt research will ever happen, and there in lies another issue, the integrity of any research, when it is never replicated. Seamus O'Mahony's book - 'Can Medicine be Cured' is an interesting read.

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More from the book on Lorraine Cleavers on-line paper - Thyroid News .. just read it 😊

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I can never find Thyroid News. Do you have a link?

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Thank you. :)

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All they have to do is take a number of patients who are unable to get well on Levothyroxine. Divide them up into four. First group gets placebo, second group gets NDT titrating up til they feel better, third group gets combo titrating up til they feel better. Fourth group gets T3 til they feel better. Then compare all of them and write down all the symptoms (not just depressions!) that have either improved or gone after treatment. They never do this though do they? If they did, they would find irrefutable proof that t3, NDT or any combination is often what people need to feel better. (These people wouldn't need polypharmacy medicating then). They would be able to get on with their lives and contribute to society, doing a lot of good and holding down jobs and supporting their families.

Instead of this they only do studies where they focus on keeping the TSH in range at all costs and people don't feel any different. I still haven't seen one single study where there has been acknowledgement that FT 3 is a clear indicator of wellness but this is what we need.

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If they did that study they'd have lost their argument for sure. They would never believe us anyway!! A study like that would be so useful, particularly where patients are unaware of which medication class they have been put in. Then the data can be analysed. As you say, i think the key is in the titration rather than the outcome being dictated by TSH alone. Ideally everyone should get an opportunity to try every type of thyroid replacement as we're all unique. What's one man's meat etc. They should also focus on optimisation of nutrients, rather than accepting a result that is 1 point above the lower reference range point. That said, not many GPs test nutrients. Another shortsighted approach in disease management. But a good money saver. Hang on...there's a trend here...egos and money. You knew that though ;)

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No the knowledge decades ago was BETTER 😱

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Sadly, the GP's used to have time to look into symptoms and make connections. And maybe even do their own research. They were likely better trained to at least know about the existence of T3, unlike today. I'm not sure Endo's were that much better, like everything, some, can't tar all with same brush. But thyroid knowledge has been trained out of the curriculum.

Gp's were more likely to admit they didn't know and refer. The Endo I saw, suppose to be 'eminent' (arrogant and pompous in my experience) swanned in with entourage, and discussed me with them, not me and swanned off again, telling me nothing, over many appointments over c2 yrs. The GP afterwards, when goitres continued to intermittently and erratically appear and disappear, said, when he pulled my file 'Oh, he couldn't make his mind 'b...dy mind up!' Endo had just dismissed me with a flippant wave of his hand. It took about 10 years more to get a diagnosis. By which time my thyroid was likely shot. So not sure they were any better. GP's might have been.

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Not much can be achieved in 10 minute appointments- esp when the list of symptoms can be about a mile long! I once listed a number of symptoms and was alarmed to find on a record for bloods I'd requested, the reason was given as... hair loss! Not another single symptom had been recorded.

I write my GP a lot of letter now, so it has to go on my medical records. I've found it's the only way.

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Just going through a medical summary of mine, that leaves a lot to be desired.

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... because they looked at their patients - examined them carefully - rather than peering at the screen !

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Yes we morn the death of clinical observations. And dread the missed diagnosis that follow! Something else newer GPs have no clue about...an example of technology not always a good thing!

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Yes indeed. What do they think they are going to find on there to help their patient?

Do you think they were less target driven in those days other than attempting to help people get better. I remember my first ever doctor a very compassionate man loved by his patients - many of whom had hard short lives in the docks, telling me what a miracle antibiotics were and how they revolutionised medicine and his ability to help people. The generation before him must have felt the same about NDT. Perhaps many became doctors for more noble reasons than status and life style? Reading papers from that era, posted here, it seems they had excellent knowledge of signs and symptoms relating to thyroid disorder and the terrible consequences of cretinism. I can spot a thyroid sufferer a mile off. I remember my first visit to Endocrinology and looking at everyone in the waiting room and being quite horrified at how poorly everyone looked. I presume most had diabetes, but I don’t know for sure if they lump us all together at one afternoon clinic, probably. They all seem to have a sad expressionless air and unnatural puffy look about them. It struck me so greatly it remains in my memory to this day. How could a caring medical professional not notice that look and immediately realise the person had a serious underlying medical problem? I know I felt really terrible at that juncture and No doubt had that same ghastly look about me.

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Yes anti-b's were the one thing that gave the public undying devotion and trust in the Docs - and BP were not slow in picking up on this. That is when they saw the opportunity to pile in with Polypharmacy. 😊 Something I read !

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I was two weeks away from a myxoedema coma and the functional dr I saw knew exactly what was wrong within two minutes before I even opened my mouth. His tests just confirmed it.

Nobody looks anymore, nobody cares, nobody listens. They look at screens and read bits of paper then inform patients they are well and fine. Perhaps the NHS could save money by paying chimps peanuts to do this same thing as the treatment really wouldn't be much worse.

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I've been close to this point too, and I discovered that even when doctors do look, they interpret what they see through the filter of their own prejudices. I was very yellow and kept passing out. The GP all but accused me of being alcoholic and sent me for a liver scan. She didn't bother to look at the whites of my eyes, which were not yellow ,and thus not indicative of liver damage.

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I truly empathise with you. It seems that the current way of healthcare is to blame the patient when they are ill and when they dont improve from their incorrect interventions, call them non-compliant regardless! This is a massive fast growing problem the world over.

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Please consider replying asking them to quantitate these improvements. That having been heavily aware of advancements in the assay field, you consider the letter opinion only and as yet unsubstantiated opinion. And await their reply by return.

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I have replied, refuting their position and describing definitive uptodate accessible papers to prove its error. We have a reply at least admitting that the statement has gone forward to the appropriate committee/group. I await a reasoned defence of their position in due course.

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Thank you for replying.

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Great to hear that you have responded but so wrong that you have to keep doing this? It must be very draining.

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Simple! I sing under my breath Frank Sinatra's song: High Hopes. Always give one strength to continue.

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Love it...must try it!! I need hope now...just been told to book appointment with GP re a referral to endo!!! First offered referral to Endo since 1981! (My GP back then was brill) I had to push for a referral in 2010, and got the 'don't suppose you have private cover...' Funny how now they insist on NHS endo now, when it suits, as if private not up to scratch, when actively encouraged private for decades! So obvious!

Into the fray!

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So what can we do about this? How do we publicise this and get it changed. If we all sit back and do nothing where will it get us. There has to be a way of challenging this and stoping this rubbish getting printed and misleading everyone?

My hubby always said it needs to get to court but how, and reading other comments not encouraging and who could afford to take on the NHS and the corruption therein!

But the system is failing and my thoughts are 'People Power' The members on this site have doubled since I joined 2 and a half years ago. Over 100 000,UK yet, or are still believing their GPs. Testament to the numbers who are being left to struggle and die. A result of the systematic deprescribing of T3, to remove evidence of benefit, and the dogmatic determination to not diagnose hypothyroidism until it is undeniable.

Because mistreated hypo leads to so many other conditions they will get away with it, jus blame it on any one of them, because those being denied and left, will die of the resulting conditions, the cause of underlying hypo will never be acknowledged. Of course much will be blamed on age. Even though our peers do not struggle so.

So how do we make it clear to all just how many affected by the increasing amount of biased propaganda that is being banded around? Some sort of a 'big public gesture' . Thyroid Aid! Can anyone sing?

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I’m not sure that petitions and letter sending is achieving that much. But I agree that there’s enough of us to at least try something different. Not entirely sure what that could be, thinking on my feet... could we commission research by putting funds together and some of us being the volunteer participants? We could gather public and media interest on the back of that? If we contribute a few £ each that will soon add up.

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I agree, we have been trying the petitions and letter writing for long enough, hence the idea of a bigger coordinated gesture. We need a visual of statistics. Nowhere is there figures on how many are being refused, had t3 withdrawn, struggling etc. We know there are hundreds of thousands, but we are all seen as individuals and treated as if there is only a handful. Time to show ourselves!?

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Bombard the media with our individual stories? Can T3 be smuggled into the UK via France or somewhere? Will they give it without a prescription (I'm thinking a media story along the lines of severely epileptic Billy Caldwell in the drive to legalise medical cannabis)?

The media loves a scandal - but even more so if it's been 'sexed' up with a bit of lawbreaking... or someone getting their breasts out and doing resting duck face. Any takers for the last one?

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Oddly enough it is very hard to get the media involved, many groups have been trying to for some time, but apart from a very few none seemed to be interested. One well known journalist, told me two years ago when I got in touch with him that he didn't report on this topic anymore, because he got too much grief from both sides?????? A journalist who doesn't like confrontation and controversy? LOL Wimp! The fact that there is so much controversy about diagnosis, understanding and treatment should be what keeps all options open, not closing everything down!!! Medicine...the closed minded science!

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Most of them tow the establishment line these days. Hard to find one that will stick their neck out - even in the supposed left wing rags. No wonder our media is repeatedly rated the worst in Europe.

I always find it's very telling what the media WON'T report on - and whom.

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Me too...

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I wonder if we could link this situation to Brexit - we all know that's all the media cares about at the moment. I noticed a lot of people on here get their T3 from other EU countries - I'm sure I saw France, Germany, and Greece mentioned a few times. If they could provide receipts for the T3 and prove how cheap it is in the EU compared to the UK, I wonder if there'd be a useful angle in that? I'd certainly like to know why that is.

Where does the UK get their T3? And why the hell is the NHS paying so much for something our EU neighbours pay peanuts for?

I've never had Levo, so I don't know which brands you guys are given or which companies make them. Be interesting to know which politicians have shares in those companies.

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I think all that information is available, Up until c April/May 2017 there was only one licensed company issuing T3 - Concordia, now called Advanz Pharma, who are, and have been for the last few years, been under investigation for price hiking. Currently the T3 investigation is on hold awaiting the appeal of another investigation. In my cynical mind stalling tactics and I personally think this price hiking is orchestrated to provide an excuse that Mr/s General Public will agree with, without knowing the full facts. I think it is the benefit that is the key issue. Hence they pulled it from anyone they could over the last 4 years, removed any 'evidence of benefit. Bearing in mind T3 affects just about every aspect of our bodies, not rocket science to imagine there might be a link to low t3 and many conditions and illnesses. Imaging if that was the case and patients found out? Imagine how the BP profit would skydive?

The cost in other countries, and yes, it is available OTC in some, is fractional to UK cost. UK bods would argue that the production standards are lower. However, I'd be pretty sure that in Germany, say, standards are every bit as good if not better.

Once Concordia was under investigation two other companies were granted licences to provide T3, Morningside and Teva. Both charged about the same. Continuing Extortion! And they were allowed to do this?

Then they gov passed and introduced the Cost bill amendment. Approved in the April and suppose to be in place in the Aug 17, this did not happen. When asked Jeremy Hunt, the then Health Minister said that they were 'consulting on the recommendations from the bill' that these were due out in Spring 18. Never happened....Bill still not being used? Stalling, stalling stalling....question is why?

Several thyroid groups, including TUK, TTT and ITT have been working together with Lord Phillip Hunt of Kingsheath to present a dossier to the NHS. This was endorsed by the president of the BTA.

Groups are fighting this, but I personally feel this is something that was decided, and agreed and planned many years ago.

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Thanks for the info. I'm learning a lot. My area of expertise in this field is related to medical cannabis. It's depressingly similar, though. There are dark forces behind these decision - and that's without a word of hyperbole. When medical cannabis is illegal in the UK, yet the UK is the biggest exporter of medical cannabis in the world - despite a certain PM saying it had no medical value - you have to wonder. The fact that Phillip May's company is involved with GW Pharmaceuticals, and the drugs minister (I kid you not) Victoria Atkins' hubby is MD at British Sugar... and they have 45 acres of the stuff growing here for export.

The epi-pen situation (the maker hiked the price by about 2000% - off the top of my head) in the States is a prime example of market forces screwing with people's lives, and Monsanto has spent 500 million dollars trying to discredit medical cannabis - whilst producing their own GM version on the quiet. Can't imagine what their agenda could be... NOT!

Capitalism is seriously bad for our health. As are the Tories.

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Funnily enough we were talking about this today. I saw a petition about this CBD - May and Atkins, situation a few months ago then couldn't find it again, wonder if it had been 'pulled', then a few days ago I got notification of an article, the same thing. And yes, extremely questionable in my view. So May's company the only legal grower of cannibis and able to export it so widely around the world, but not legalising it in the UK? Has it now been legalised but not being issued in NHS, only a few issued in private? Surprise! NOT! Wrong on so many levels. The medical world - no integrity no morals. It does make one wonder where is it going to end? Big profit for some. Poor health early demise for the rest!

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May is part of GW Pharmaceuticals - BUT, the drugs minister, Victoria Atkins' hubby is MD of British Sugar, which is the biggest supplier of the two. But both companies grow massive amounts for export.

Sajid David promised medical cannabis would be legalised last year, and in November it was legalised. Except GPs and specialists won't prescribe it due to the same old BS about T3: they don't understand it and are worried about the repercussions if someone gets seriously ill and/or dies. This despite the fact that not one person has died due to consuming only cannabis in any way at all and it's been used as a medicine for 15,000 years. I understand no one ever died from eating whole adrenal and thyroid glands as they used to do. I'd be surprised if there's been any fatalities from NDTs, too.

Cannabis was in just about every medicine you could find in the States... then along came antibiotics, and cannabis was soon banned. You can't patent a plant - but Monsanto are giving it a bloody good go.

The crap the NHS does supply under the name Sativex, has been patented because GW Pharma isolated only 2 compounds and called it medicine. Yet the cannabis used to treat cancer and other serious illnesses - the one I use - is full spectrum. They use the entire plant, because it's teeming with beneficial compounds and terpenes that work synergistically for max effect - not unlike comparing synthetic thyroid drugs to the whole gland.

I read somewhere - prob on here - that Drs discard T1 and T2, as they don't understand the purpose of them. What absolute madness is that?

But then, if you leave everything in... that ends up being a form of NDT and they can't patent it.

What a disgusting, venal world we live in.

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Yes agree Nothing in our bodies that has no use at all surely? Or it would have evolved away? Like kids being born without tonsils - it is tonsils isnt it? and wasn't there something else missing?

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I was under the impression that Lord Thingy of Kings Heath had given up being involved with thyroid-related stuff.

lynmynott would know for sure.

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I certainly had not heard this? I hope it isn't the case? Do you know why you have this impression. Worrying.

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humanbean what gave you the impression Lord Hunt was no longer involved with the T3 situation?

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It was just something I thought I remembered from somewhere - but I could easily be wrong.

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I'm happy to say he is still on board!

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Ah! I got two different Lords muddled up. There was a reference to a man called Lord O'Shaughnessy being involved in something thyroid related. See this thread :

healthunlocked.com/thyroidu...

However, soon after that thread was written the man resigned his post. See :

en.m.wikipedia.org/wiki/Jam...

So, ignore me - I was waffling and getting it wrong.

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Ah yes, Lord O'Shaughnessy was Parliamentary Under-Secretary at DoHSC. He resigned around Christmas 2018, and it's now Nicola Blackwood, though I haven't heard anything from her. Many of us wrote to Lord O'Shaughnessy but we all had the same stock response, but not a full reply to questions.

Lord Hunt has been on the case for a year now, and very supportive.

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I'm glad to hear the good guy is still on board. :)

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Depressing or what! I sometimes think endocrinology is the dinosaur field of the medical profession,

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There could be hope then, the dinosaurs eventually died out or transformed into birds

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Maybe we should stop being so ‘polite‘ and start being more rebellious! Revolutions don’t start themselves! 😉

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Does it help our thoughts if we look at history and how Doctors were persuaded in the US - that NDT was unstable and that Levo/T4 was the way forward. Incentives were large I believe.

I feel that is a situation that has not changed in the last 30 years. The many bodies controlling our health have their snouts in the trough of BP ... money rules as our health slips away globally.

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Without a doubt! How many of Gov too have snouts in trough of BP Problem being the control this gives BP?

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Goes without saying :-( If not then something would have been done by now.

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UrsaP “So what can we do about this? How do we publicise this and get it changed. If we all sit back and do nothing where will it get us. There has to be a way of challenging this and stopping this rubbish getting printed and misleading everyone? ”

“Oddly enough it is very hard to get the media involved, many groups have been trying to for some time, but apart from a very few none seemed to be interested...”

-------------------

You sound more than capable - why don’t you write a piece yourself? Then submit it to a national newspaper, see if they’ll print it.

Reading some of the other comments here, there are other members (you have the pick from at least half a dozen equally capable people) who could help you write it and hone it into a really well written and rounded article.

I’d be happy to read through any drafts and your final copy and give constructive criticism, if that helps.

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Ha ha... Not sure many would agree, I cannot write succinctly enough... But never say never! I am part of ITT and we are, as a group, fighting this and currently, as stakeholders, looking at the NICE draft guidance response. There are many capable people on hereI am certain. And it will be by standing together and acting together, refusing to accept the poor treatment we have been enduring and calling our medics out on it, that will get the current status quo changed. We need to be asking them to justify their actions, in writing preferable. Get them to provide the evidence for their actions. Then check this evidence. Question it. Many 'studies' and research that is being used to dictate our heath is questionable, conducted for the purpose of BP profit, or someone's career. The end recommendations defined before the study starts. There is not enough good quality evidence of any treatment for TD. NDT is a grandfathered product, to my knowledge, exempt from license because it predates the licensing laws and has been used effectively with no adverse effects for decades, until the synthetic T4 was developed, produced and promoted. It annoys me no end that the fact that NDT is not licensed is used in derogatory terms, constantly - misleading all who read or hear it.

My take on it is that it was the development of synthetic T4, and subsequent promotion of this, especially in light of the knowledge of missing T3, with a desperate need to recoup development costs, that has created and nurtured the anti T3, and anything containing T3, stance.

The constant promotion of 'lack of evidence of benefit' of T3 and NDT, when this has been orchestrated by the systematic withdrawal of T3 from patients also makes my blood boil. Especially as the evidence supporting T4 mono therapy is also noticeable absent or questionable. I recently saw a presentation, posted online, which was presented to a thyroid group, which seems to indicate that at least some evidence of benefit of T4 was from patient prescribing records. I know that I kept telling my GP's that T4 was not working. I told them for nearly 20 years, I can only see it mentioned when I insisted on trying something else after 16 years.

Evidence is poor all around. It is not collaborated and there is not consensus. For those reasons, until such, independent and conclusive research is conducted, under proper conditions, large scale, unbiased and with correctly considered cohorts, all options should remain on the table. Dr's should be taught to keep an open mind and to conduct full TFT to establish levels and monitor/treat accordingly. I have no objection to Dr's starting with T4, but if it is not working the patient should be able to try other options - combiner's/ NDT/ T3 mono.

Sorry...I go on again...

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…Yes, I know all that.

-----------------------

UrsaP “…I cannot write succinctly enough…”

I expect you can. You’re knowledgeable and have plenty to say. It just takes some more time, more time than you’ve probably realised, to further edit and shape it into the best it can be. It’s not difficult, but it takes time.

I’m sure there are others who’d be eager to help, contribute ideas / information for the piece, then edit and hone the piece with you, as you need. You might even find it fun working on it together.

UrsaP “…And it will be by standing together and acting together, refusing to accept the poor treatment we have been enduring and calling our medics out on it, that will get the current status quo changed.”

You need something in the national press.

Channel your energies into that.

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Have to concentrate on the NICE draft first as too much to do there and also suspect heading into personal head on battle to keep my T3 mono. After 9 years of reasonable stability, and much better QoL. But will bear this in mind. However there has been some articles in papers, there are a few journalists doing reports, but suspect many are 'deterred' from writing/publishing. I did have one well known health journalist say that he didn't report on thyroid issues anymore, he got too much grief from both ends. By which I suspect the meant patients v dr. Very sad that this is what it has come to, and what sort of a journalist walks away from controversy? Maybe one who is getting paid too much elsewhere? lol

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ok

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Will keep the idea in mind, worth trying, but think it is more likely to get reaction if there was a co-ordinated 'drop' of stories regarding this, so they can see it is not just one individual and can see how it affects people both similarly and differently. The human impact of poor short sighted decisions. Thanks. Good to chat to you. Do you know of ITT. Campaign group? We are on FB

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The piece I suggested you write (in collaboration with others) would be one of how ever many. You have to start somewhere and someone has to start the ball rolling.

UrsaP: “…so they can see it is not just one individual and can see how it affects people both similarly and differently.”

You can set out exactly how big the problem is in the article. (I wasn’t suggesting you limit it, to your own personal experience, it wouldn’t be just about one individual persons experience.) *** The point is, you could write exactly what you want.

Yes, I’ve heard of ITT.

But nobody else has, meaning the general public, nor of TUK or the whole thyroid issue.

You’re campaigning in a bubble, behind closed doors. Likewise your communications with NICE etc, are not in public view. It makes it very easy for them to just ignore you.

***(You could sign it off the article as “your name” – campaign manager ITT or whatever)

I can’t believe that this issue does not have a national profile. And that none of you think that it is important or advantageous that it should have.

Hey ho.

It's late, I have to sign off.

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Of course we think a national profile is important and ITT are very proud of the fact that within a very short time of setting up we were pretty well known in various places. And that was not by operating behind closed doors. Whilst ITT is a growing campaign groups our core group is quite a small group. As, I believe, is the case with most thyroid groups. Considering this we have made impressive progress to get ourselves out there and known. ITT hit the ground running, faced with the consultation that was aiming to stop the prescribing of T3. A group of us slogged our guts out on a response to this consultation from ITT. Plus actively recruiting interest and advertising this consultation, which incidentally the NHS did little to promote. Other groups I'm sure did the same. We went from that immediately into working on a comprehensive response to the NICE scoping document. Not an easy fete considering the few actually doing this, all remotely collaborating from different places around the country. We have been heard in both the House of Lords and the House of Commons. We have attended several meetings and conferences. We have gained quite a following and a reputation. Several thyroid groups have worked together to produce a dossier which went to the NHS and is ongoing. And it is by standing together as patients that we will be strong enough to see this through.

If you haven't already, may I ask that you take a look at the work we have done, and are now doing.

The Thyroid groups are continuing to build support and are constantly looking for outlets to publicise the situation. I suspect we are facing blocks from directions we can only guess at. I can assure you we are all working hard in the background. I'm pretty sure most of the members of all the groups are quite passionate about what they are doing and working very hard behind the scenes. Bear in mind we are all patients too, with the ups and downs that entails, many still with full time jobs, families and other commitments. We do what we can as we can. I know I can speak for ITT, who are a very focused and dedicated group of volunteers giving up most of their time to further progress this cause.

There have been articles in papers but the greatest problem is getting journalist interested and to do that we have to have 'something new' high level medical backing, has been suggested. Something new. That said the president of the BTA has endorsed the Dossier. We are getting out there and were are starting to be heard. We do have a few journalists taking an interest. Rome was not built in a day, as they say. And we need all the help we can get. There are thousands of people out there affected by this situation. There is a small number who are actively doing anything about it.

I will look at your suggestions for an article. But there are priorities, and we have limited resources.

May I offer the suggestion that, as this is your idea, you might consider putting a few pointers you think should be included in such an article, a skeleton piece to start this off?

Now I'm heading to bed, it is 2am! Eyes have gone!

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