Thyroid UK
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Some practical thoughts for the future

I hope by this I don’t offend people but I thought it necessary to put down. From the outset of the starting of Thyroid UK, I get the impression that the ethos underlying the charity is a Nightingale one. That is, ministering to the sick and despairing as individuals, from the knowledge of those who have had their experiences and know how to deal with it. However admirable this approach may be it doesn’t do anything other than continually handle emergencies, without having much effect as to why these emergencies have occurred in the first place. By this I mean it doesn’t challenge directly the basis of misdiagnosis, and mishandling of patients, an accusation which emanates from the hands of the medical establishment and its advice to doctors. I believe the time has come to bring forward a lot more of the Pankhurst ethos. I note that petitions spring up here there and everywhere protesting about mistreatment. To me this is futile, because each can be picked off as just another whine by dissatisfied, emotional groups. Petition fatigue sets in. What I would propose first is that everyone who wants to present evidence in petition form gets together to produce a joint document. I know this may ask for cat-herding (various groups are suspicious of one another) but I think it’s the only way forward. First, the statements can be mutually agreed, and second the numbers of petitioners amalgamated together will be larger Also, no group can claim unique access to all parts of the truth. Different organisations have their own take, which can be put together in a much more powerful way as a single output. The scientific evidence is now in and is irrefutable. However, the way we have published it is in the language of high science. This has to be so to prove the physiology that dictates the treatment and set the scientific objective standard. But now we have physicians like Toft coming in from a practical point of view, confirming our own conclusions. I’m trying to get Toft and ourselves together to present a useful challenge outright to the authorities. But that is not enough. Both sides, you and us, have to realign and augment our forces to get the most productive and useful outcome. This is all the more important given the revisiting of the Guidelines at present in progress.

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Brilliant idea, so what next from all of us?

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You'll have to leave it to the willingness of the various groups to come together.

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You are 200% correct Diogenes ...there has to be a combined and concerted effort by all of the thyroid groups to get together and make a concerted effort to change the minds of so many totally ignorant medics throughout the system including sadly Endocrinologists

While BTF and BTA are allowed to rule the roost and are the go to source for the media nothing changes

Far far too many people come here and on tpauk week after week with TSH off the scale and doctors doing zip or those who have muddled along sick for years

Levo does not suit many many people and neither does T3 yet switch them to NDT and they get their lives back as my lot know all too well

Add on the failure to diagnose Central and tertiary hypothyroid and yes we are continually firefighting

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Thanks, Diogenes, for posting this very important fact. I think your "I’m trying to get Toft and ourselves together to present a useful challenge outright to the authorities" is excellent - although at times I believe he didn't always agree but people are entitled to change their minds for the good of others.

All interested parties regarding the diagnosis/treatment of hypothyroidism should augment forces to get the most productive and useful outcome. This is all the more important given the revisiting of the Guidelines at present in progress.

As Dr Skinner tried to change the Endocrinology's views but one by one they refused to attend a Conference he'd arranged about the 'parlous situation' faced by patient'.

His team have also spent the past few years since his death collating all of the scientific evidence over the years. Maybe you could also contact Dr Afshan Ahmed - his right-hand woman.

healthunlocked.com/thyroidu...

beta.charitycommission.gov....

Most Endocrinologists don't appear to know anything at all about the suffering of patients, neither do they try to relieve them and some patients are sent off with a flea in their ear after having their hopes build up that "now they were consulting an expert" and leave deflated and hopes dashed.

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If only that could happen - it would be a lasting memorial to the wonderful and much loved Dr Skinner.

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Yes it would and all his Research/studies wont go to waste and, at last, Endocrinologists may learn something and at least learn that their guidelines are wrong and stop the unnecessary suffering and that levothyroxine doesn't work for everyone.

Some of the Endocrinologists (from reading posts here) are very detached and are lacking in the very thing that doctors should have - compassion and aim to get patients back to good health.

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couldn't have put it better myself Diogenes. I entirely agree we have to try and present a united front with scientific facts. Petitions just don't do it. Over the last 5 years I have become increasingly upset and annoyed at seeing the same issues coming up namely GP's ignoring patients' dire bloods results, ignoring their symptoms and being totally wedded to TSH method of treatment.

When I first joined I found it very difficult to follow suggestions etc because of brain fog. No doubt many others had and still have the same problem.

Fortunately as my dosage increased and my diet improved things got better and my brain cells woke up, still a way to go though.

Coming from a scientific background has also helped. I approach all my efforts like conducting an experiment. I am lucky that I can afford to pay for private tests and the many supplements that I take. The so called NHS is still a post code lottery in so many ways and yet everyone will have had to make same tax and NI contributions according to their earnings, if they have been lucky enough to hang onto their job with dire health issues!!

Let's hope that in 2018 we manage to achieve some changes.

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Especially in line of the centenary of Mrs Pankhurst's success, I love your analogy, diogenes. I went off 'Thyroid UK' message last year in my frustration at the lack of effective marshalling of the huge and constant outrage there is, with the poor treatment of thyroid complaints.

Stuffing envelopes and answering the calls of individuals will do nothing to change the situation so many find themselves in. Perhaps there is a need for a new group whose sole aim is to overturn the shoddy and discredited treatment protocols we are up against. Nothing else; no petitions or information exchanges...TUK and TPAUK, among others, do this well enough.

What does need to change is the attitude of some existing thyroid patient advocacies in the UK. If a new organisation is formed, it isn't a threat - it is an important and necessary adjunct to those existing organisations, such as TUK and TPAUK and should be encouraged and engaged with.

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Rapunzel, we wouldn't be where we are at present if it wasn't for TUK. We certainly wouldn't have this forum on HU which is successful, thanks to you and members responding to queries.

We don't see what goes on behind the scenes at TUK and the fact that the beginning of TUK was by an individual who began it in a garden shed, they've come a long way since then.

It would be good if many who have found information on here by the members helpful, could themselves become members of TUK . This forum is free but TUK have many expenses and £20 p.a. is very reasonable.

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I donate £120 a year and make occasional purchases via TUK's eBay site.

I'm not a member, shaws, because I'm not sure if TUK's mission statement is enough or will move things forward any. Essentially TUK's an information exchange, so far as I can see.

Last year I also donated several hundred pounds to another thyroid organisation whom I perceived to have a more robust campaign to prevent the withdrawal of T3.

There seemed to me to be little collegial spirit when a hand was outstretched from one group to the other and returning to the point of diogenes's post - that's what must happen for thyroid treatment to move forward.

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Everyone is entitled to their own views but the aim is the same, to get better treatment.

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Great post Rapunzel.

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I may be treading on some toes here, so apologies in advance for any hurt feelings... The OH and I had several long conversations with Sheila Turner of TPAUK, and her late husband Howard, about how thyroid patient support groups should band together to bring about changes in diagnostic and treatment protocols...It transpired that Sheila, and also certain members of the TUK forum, have at various times asked for Thyroid UK's cooperation and support with genuine opportunities to bring the plight of thyroid patients to much, much wider notice. The answer from Lyn Mynott and the TUK office was, apparently, 'No' on every occasion.

Now, I understand that not everyone is a natural campaigner, and there is an absolutely valid role for a charitable organisation to provide the holding of hands and the mopping of brows to people who are really ill and need advice right now, right this minute. I'm happy to help people in this way whenever and wherever I'm able. But we need to do something more than this.

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Bravo Hillwoman x

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Totally agree!

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Yes indeed, Sheila and me were 'banned' at one point on here... for some minor comment that wasn't 'liked' ;-) It all got sorted out but the clear animosity at that time - surely, we're all in this together and differences MUST be put aside. :-)

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I think someone called Amanda who used to beknown as red lobster now runs TAUK and there maybe more oppertunity for cooperation now. I think TUK have had a softer approach and I feel that it is having a great effect in its own very slow way. It is now affliliated and supported by NHS which gives the advice offerred here some credibility with doctors that will slowly filter. There being more than one way to skin a cat etc. In a way I think the groups do all work together the message from ITT, TUK and TAUKis consistent well backed up scientifically. There just happens to be diversity in the way the message is presented and the people involved. The problem is we are not getting the message through to the people who need to change thier practices as a result. We need to be thinking of new innovative ways to communicate. We are trying to convince people in the most arrogant profession in the world that they are making a huge mess of their jobs. Any thoughts?

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Galathea has responded to this post below.

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I've never been known as red lobster! I have always been Galathea. I've posted on this forum many many tines, only i dont post so much now, because i am busy with doing the tpauk stuff!

Amanda x

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apologies galanthia. Memory shot.

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A reasonable annual membership fee like £20 pa sounds liked a great idea in return for the fund of valuable info available here. Small beginnings but it may help start a research fund.. little acorns and all that!

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What is becoming abundantly clear through the disastrous starting and stopping of T3, is just how badly affected gut function can be with Hashimoto's on T4 alone.

Most endocrinologists are not remotely interested in considering how the gut is affected

You can see here in these posts, time and time again, that vitamin levels crash right out when T3 is stopped

Lives are ruined and money is not saved. Multiple deficiencies result.

Typical posts after T3 stopped illustrating this

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Low vitamins causing low TSH high FT4 and low FT3

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Low vitamins due to under medication

healthunlocked.com/thyroidu...

We could easily add 20 more similar posts per DAY to this list

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Hi SlowDragon

Thanks for posting ..That’s shocking the way vitamins have slumped after stopping T3.

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We need to get research psychologists onboard too who are researching into physical causes of mental illnesses like schizophrenia. Autoimmune disease is being discovered as cause of some mental illness

Obviously the link between Hashimoto' with anxiety and depression is well known here. But this is often is completely ignored by GP's and endocrinologists.

How many times do we hear that GP or endo says it's generalised anxiety, or all in the head

All too often the autoimmune aspect of thyroid disease is completely ignored by current medics

Perhaps we can get research from this perspective too

psych.ox.ac.uk/news/new-stu...

ebmh.bmj.com/content/19/4/e27

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The new NICE Thyroid scoping and guidelines group is an essential place to get all this presented.

New NICE thyroid guidelines due to be published in 2019

If we can't get good progress with NICE then thyroid guidelines to all GP's will remain utterly useless for yet another 20 years

It's a case of pushing things forward without causing medics to feel threatened by litigation for current mismanagement

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I tend to think the threat of a class legal action might be the only thing that will concentrate minds at the level of RCP/BTA.

Edited to say that I don't know whether the Royal Colleges can be sued. Anyone...?

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I tend to think the threat of a class legal action might be the only thing that will concentrate minds at the level of RCP/BTA.

I've never heard of class legal actions being heard in courts in the UK, I've only ever heard of this legal mechanism being available in the US. Can anyone point out any such actions which succeeded here (UK)?

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This may be wishful thinking on my part! I do know that it's possible for groups and organisations to apply for judicial review, but I don't know whether that is the most appropriate mechanism.

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Judicial Review is an onerous process - long story - 'they' (anyone backed via the State and/or insurance/unions) will run the Applicant into the ground with Q.C'.'s - they will stop at nothing to cover their backs... instead of just doing their jobs in the first place.

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I feared this might be the case. Public bodies can throw money (ours!) at this sort of action.

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People have no idea how far they will go... how low they are prepared to stoop, just to protect their 'little pet theories' and huge egos. Don't forget that Prof Wessely and Prof Weetman and more would likely be called as 'expert witnesses'. Whatever happens, has to be able to break through that level of...

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Now you put it like that, I wonder how we can break through this wall. You sound as if you've some experience of this kind of response?

Do we have to wait for several generations of the old guard and their followers to die? Scary thought. :-(

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I'll put some details up here over the weekend - I can't precis these days, so mumble on ;-) - due to long term 'brain fog' and hypothermia!

Worse than that, in my experience, the old guard teaches the young ones (some of whom may not be quite so bright, lol, some of course are way smarter!) but, due to £$, they kind of fall in line + insurance considerations/litigation has them fall in line more than ever.

Scary indeed!

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I think brain fog is taken as read around here. :-) I'm as guilty of mumbling on...

Awaiting your account with bated breath!

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I am SO sorry Hillwoman - just couldn't face providing details, then forgot - it is these details that finally (hereditary stuff already in the background - right through much of family - waiting to pounce) topped me over into this state. Stress/adrenaline/cortisol etc - pushed up weight (I was the family member who escaped it), then a whole cascade of issues descended, many of which I'm still dealing with.

Basically, colleagues and me working in mental health (not statutory - not ever statutory... doing things to people via the 'pet theories' of those who often have little clue and prescribing drug cocktails to boot!), used to counsel/advocate for people being chemically coshed, some even banned by psychiatrists from services (because they didn't know how to deal with them!?). When someone committed suicide in the statutory sector, staff were offered counselling... we had much worse to handle and we were the 'counsellors' (sometimes to statutory sector staff being bullied at work). Anyhow, someone, somewhere, took a distinct dislike to our lawyer Director: we - several staff - were from a psychology background, but a lawyer was good to have. Some little squirt, acting outwith of his statutory remit, set about to 'do in' our agency, because the dislike of the Director led to them 'taking it out on' the whole of the agency, due to their loathing for him. (You know, those in positions of 'power' who are actually in need help themselves? - Hats off, they had the b*lls to take us on, we were formidable in our advocacy work in respect of abused members).

We challenged it at every step, only to face removal of funding, (the meagre amount they gave); they defamed staff to all and sundry and started a regional whispering campaign. They left some very vulnerable people without services, (some committed suicide), and secured the unlawful closure of 'the agency' which belonged in fact and in law to the 'Membership' (mental health service users). The Membership had several properties, one donated, two on peppercorn rents... from which Social Space (including drop-in facilities, group cooking, Ethnic Groups meetings, music/art groups... you name it); training/assessment (I got them CCETSW Accreditation - even the FE colleges couldn't manage Level III - (to work in Mental Health - who better to KNOW about it!?); then there was supported housing, supported working.

We were shut down on the whim of a few people, aided and abetted by that miserable little wretch of a guy. Those properties were lost and all of this was unlawful (intermeddling in the affairs of a legally constituted Charity... don't mention the Charity Commission... eek!); everything we did - also to protect our own necks - was thwarted. The major 'authority' that instigated it all spend into 5 figures from the public purse to defend themselves, often with QC's up against us as litigants in person to protect their lying, unlawful staff; also to ensure that we never worked again. We even had some clear 'wins' ;-) but this went on for 8 years (1995 - 2003), then the aftermath... of the sheer destruction of us, the agency and the members.

The last Temporary Director (one of our own number), took this miserable affair to the Ombuds_mouse and then appealed for Judicial Review... she was threatened with losing her home (a meagre ex-council house!) if she didn't back down.

I have seen things that no 'mere human' (ordinary - well qualified - working person) should ever have to witness; lying, cheating, skullduggery at and from the highest levels :-( Horror fills me just typing this... I had planned to write a book on it before I get out of here (meant to me moving in 2003/04)... dropping it off at every law firm in this city; (some involved in helping with the 'cover up'). I became too ill; several of the original advocates are now dead, (way before their time, possibly due to the stress of it all). The book is still on the back burner (and I'm safer ;-) ) yet it would be too much for someone even like Ken Loach to film... someone into horror would be more apt. ;-)

One thing to take from this... "They all [really do] P*ss in the same pot" - small groups or anyone who is 'not a proper person' is squeezed, squashed and kicked, then trampled on. We put up a good fight - biggest one they're ever likely to see - yet no chance of seeing justice. Anyone 'taking on the system' needs to think long and hard; bit like the house in a casino generally always wins. Sorry if this is garbled... tired. xox

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How horrific...you poor thing. My suggestion above about judicial review or similar was just wild hope really - because we need to cling on to the possibility of radical change. I've been involved in a couple of prolonged legal wrangles, and I've also observed the determined protection of fiefdoms while working for various charities. The people who are supposed to be protected, the clients, often suffer the collateral damage (that awful Gulf War phrase).

I've a good idea, and some direct experience, of just how bad things can get when very little falls in your favour. And if you're also dealing with unscrupulous sociopaths who don't have to worry about their own funding...Ugh. :-( I'm really sorry to have dragged up what was obviously a dreadful time for you.

xx

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No, it's fine Hillwoman - it sometimes gives me a reason to remind people... people who can tend to disbelieve that 'these things go on'... that 'there's no smoke... ' etc. That you've had some experience and seen at first hand, you too will know that what I say above is far from unusual: it seems only when people see it at first hand, when it's done to them, do they fully 'get it'.

I'm more than willing to talk about this... just tired in Winter, which is never good.

Hey, I'm still alive... what was done was so horrific that several did not make it.

Just trying to alert people that often all is not as it seems... when you see a High Court Judge... with ONLY tangible evidence for those damaged (documented proof from disclosure, witnesses to events...), just turn the tables BECAUSE they know that there is no further appeal - unless on a point of law - and people (even the other side) having their breath taken away by the blatant skullduggery of such an act. What went on (conflicts of interest in some very, very high places - nationally - with every single MP, councillor up here effectively silenced (never mind listening to their constituents, 'the members' - but telling them, "Your wrong, this is not what's going on"). The examples are so galling, so putrid, that even the strongest of will/stomach will feel defiled... at the hand of 'The State'. I try to stay out of stuff now.

When 'the system' comes up against people (just like some of us with thyroid issues, CFS/ME groups... and other disaffected peoples), the population in general look around for reasons other than that which is before them and, ultimately, as with rape, the actual victims are often further blamed... i.e. there must be something inherent about THAT person, THAT group... and on it goes - sadly, standard stuff. So, if anyone believes that 'the system' has somehow changed for the better, please provide examples ;-) In the alternative, please do beware. Best of xox

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The fact that some people didn't survive is beyond awful.

As discussed under another post, you and I are considering making our written testimony to the GMC about the PACE fiasco (polite word ;-) ) in support of Sarah Myhill...no doubt some flack will come our way, but most of it will hit her. She has won though, by her own efforts, many times now. Sometimes things do come right. :-)

xx

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Yes, some by suicide and others way too early via stress (cancers - obviously no proof) that simply got too much. As for me, "They Shoot Horses Don't They"? ;-)

Yes, I definitely will and do hope that you will too: I'm going to impose a deadline on myself. Flack, ha! Nothing anyone can do to me now... I've made my position clear in several ways re endocrinology. If they can't/won't do anything for you and treat you with contempt, little point in rolling over for them.

Oh yes, sometimes they do come right - I've been up against QC's as a litigant in person (fortunately a group of us were 'blacklisted', otherwise it could be seen as 'me'!) and turned the tables. I'm fairly confident that Dr M will get this one. :-) xox

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Well its early days yet, but it was very interesting to see who commented on the draft scope for the new guidelines. Those of us who commented were able to get changes to be made, about what will be considered in the new guidelines. We aren't in competition with each other, we all had valid, but different points to make.

I have been disappointed to hear comments from people, ( not necessarily on here) saying that the new guidelines will be the same old, same old. I regard it as our job, as stakeholders, to ensure that the new guidelines are not the same as the old RCP, BTA statement.

There are changes afoot, several studies are proving the old ways are not working. All the current hue and cry, lends weight to our future negotiations with the upcoming guidelines. Aftraid we have to wait for the guidelines until next year, but with so many organisations involved I am really hopeful.

G.

( CEO. Thyroid Patient Advocacy)

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Great to hear.

I really wanted to be a patient representative on there. But didn't find out in time to apply

Keep us posted

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So back to the future so to speak, what can the minions in all this like me actually proactively do? I am ready and have posted these sentiments before.

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As for everyone, when and if an organisation is set up, be a part of it, not just nodding the head in agreement but coming out as an active supporter. I sense that a great number of patients here want nothing more than advice, and when they get it and feel the benefit aren't prepared to raise their voices when required in the future..

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You may well be speaking for some and that's fine, each to their own but I do not fall into this category so once again I ask what can minions such as me do to improve the overall thyroid diagnosis, treatment and research for thyroid suffers?

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All I can advise the individual is when having an appointment, to go to the doctor armed with facts and a positive attitude and be prepared to argue and not back down in the face of bad thinking and dismissal. Again, there's too often a "poor me" approach and a supine attitude by patients to the "greater knowledge" the GP/endo exploits. Challenge is the only way forward.

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Whereas I appreciate that what you say may well be true of some but not of myself or a significant number of folk who frequent this forum. I wish to know who would be interested in joining forces to actually try to bring about change regarding the issues we see daily placed on this forum. The sum of the parts can be a formidable force. So many of us know the ‘why’ acutely but the when, who and where is a more complex issue.

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Most times the doctors/endos do not listen to the patient - they have to follow the guidelines by their Associations and dare not go against them.

Dr Peatfield was pursued for treating 'people' who remained undiagnosed despite blood tests and prescribing. He couldn't stand the strain of being called before the GMC and he had been treating people for years - he himself being hypo - and he had to resign through the strain. "Tears Behind Closed Doors" should be used as training manual for students.

Dr Skinner, Virologist, got involved through being sent patients with 'mysterious diseases' and he found most were hypo and that's how he became involved but the Endocrinology refused one by one to the Conference arranged by Dr S to discuss the 'parlous situation' that patients were in due to guidelines.

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In a real sense the past misdemeanours of the thyroid practitioners has now to pass away. At that time, patient presentation had become secondary to the numbers. Not the other way round. There was no hard science to clearly back up what Skinner and Peatfield were doing, so they could be easily picked off by the guideline-following establishment Now the science is clear and it supports them not from an anecdotal point of view but from hard irrefutable fact. The two together make an unarguable case.

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There was much 'hard science' (hmm to hard science!) to back up the work of John Lowe - disregarded out of hand by UK authorities. 'Fraid those I've met, nothing but nothing will change their views: (large teaching hospital, boasting 127 years of trialling NDT... certainly lost their way - I have an inkling that Prof Weetman was involved up here too).

Going back to 'clinical evidence' from the late 1800's, through to the 20th C, there is surely some good stuff in there: throwing the baby out with the bathwater is equally not a great idea. Possibly limiting what to include is sound reasoning, but to brush this aside as mere anecdote!? Also, 'hard irrefutable fact'... hmm, in medicine or pretty much any field, I'd really like to see that!

Nonetheless, this is really encouraging and I truly hope someone can 'DO SOMETHING'!

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An example of hard fact;

Every time, the same amount of caustic soda and hydrochloric acid will always give the corresponding amounts of salt and water. Even if you gave a gorilla the ingredients, the same result would come out. Irrefutable facts are those which are independent of any observer or instigator. If the propositions are individualised they are no longer irrefutable. So facts based on personal experience do not live up to the requirements.

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Oh I do know of those basic, simple instances, of 'hard fact' (not necessarily 'true') but where is the hard fact for these thyroid circumstances!? (I would add that QM would give a some minor difference if the observer was the vehicle for measurement ;-) )

Where you say, "Now the science is clear and it supports them not from an anecdotal point of view but from hard irrefutable fact". Where are these hard irrefutable facts?

Pretty much nothing escapes human decision taking... I'm intrigued.

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Irrefutable fact come from two angles. A model is proposed. It is tested and tested and tested again from different directions. Every time the model holds up. There may have to be minor adjustments that are nothing to do with the main proposal, but refine the details. Other people repeat the work. They get the same answer from the same model. No other models fit. Ergo, the model's validity as an observer-free truth can not be defied. It will never tell the whole story but will describe the big picture.

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I KNOW, I've devised/conducted many experiments using every stat'l test in existence - they are still not irrefutable - and, in medicine, are generally 'peer reviewed' (often highly questionable these days!).

We must agree to differ on the rigour applied to 'irrefutable' BUT, how will the irrefutable you describe be used to challenge endocrinology in respect of:

"Irrefutable facts are those which are independent of any observer or instigator. If the propositions are individualised they are no longer irrefutable. So facts based on personal experience do not live up to the requirements."

HOW? What are the "irrefutable facts" relating to us lot with hypothyroidism that can be exemplified by... "Now the science is clear"? Which science is now clear?

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How the thyroid interacts with TSH by producing both T4 and T3, how the body interacts with the thyroid whenthe body converts T4 into more T3, how cellular senstivity to T3 is involved, how various forms of TSH do different things and what the effects are.. And then how all these factors interact when illness strikes, either thyroidal or non thyroidal.

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But that is what endocrinology will say that they already do, right now! They don't, of course, but they believe that. If the aim is to take on the actual testing system/procedures - great - any improvement would be progress. Some refining re measurement and testing, ranges etc = yippee, but that is not going to bring irrefutability, via hard fact, to us at this point in time.

However, and back to the individual, (my psychology professor gave up being a physicist to move into psychology entirely due to human individual differences), acknowledgement of the huge importance of individual differences simply cannot be escaped and, for that, good sound clinical judgement - used by Drs S, P et al - will not in our lifetime become redundant.

Please explain what you mean - I do not mean to be obtuse but I am equally not a fool - it appears that we may well have our wires crossed. How will this be achieved, when appealing to a wider audience, to bring about change re the dire circumstances in which many of us find ourselves.

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1) All the actions and interactions are individually expressed, with quite a wide range of possibilities. So health can be achieved thyroidally speaking in quite different ways. When the thyroid goes wrong, one of these variables is lost if the glands action is lost. So to treat the individual, we have to realise that now the same FT4 and TSH may mean very different things for different individuals. This means in turn that the treatments giving those FT4/TSH numbers will have very different outcomes if FT3 is ignored which now it is. So this is what is known as the need for treatment and diagnosis personalised to the individual.

2) You cannot get to grips with this scientifically. It has to be trial and error. BUT anecdotal claims from one individual or one doctor are also exactly that. They cannot be extrapolated to someone else. Science is a case where extrapolation from the knowledge can be made as a start but realising that in this case there is too much individual variation for hard and fast decisions to be made. With anecdotal evidence the same arises. That's why we have randomised clinical trials. The irony is that in this field nearly all have used illegitimate statistics to give false conclusions (T4/T3 preference, AF and OP on suppressed TSH etc).

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Of course it will be different for individuals, and any such treatment will have varying outcomes. This could and does happen now, exactly WITH trial and error.

Many people treat themselves to 'feel well' because what has been 'doled out' does not work for them. Indeed ranges/tests mean little for some, presumably due to other [individual] intervening variables.

Many have had FT3 tested, others not, yet this approach simply means that 'they' [docs] still don't get it and nothing much changes. As I've said, individual differences + variation is huge...

Of course results can't be extrapolated and applied to another!? Randomised clinical trials... are not going to solve the issue at all. Any use of illegitimate statistics, often lies with the knowledge and, moreover, the integrity of the practitioner. Indeed medics appear to have a poor statistical knowledge base and, as with much else, insufficient training.

You say, and of course that is what I've said above, "You cannot get to grips with this scientifically. It has to be trial and error", hence my initial query on what you were saying.

So what is different NOW with your statement:

"The scientific evidence is now in and is irrefutable. However, the way we have published it is in the language of high science".

If I cannot get what you mean, others may also not get it. Please clarify what is meant.

I so hope that groups do get together - put any differences aside - for the greater good.

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It means that the sum of the work we have done leads to a definite conclusion. That conclusion is that the whole pituitary-thyroid-body system works in a flexible describable way including new findings that are testable by others. It doesn't work in any other way. It is based on detailed physiological concepts that apply not only to thyroid matters but generally in the body's mechanisms for doing things. It is not anecdotal at the level of the individual but a general statement that covers humanity. It is couched in tradiitional scientise for this must be the way in which science is presented. Within that statement is the realisation of the individuality of the physiology of a person is included by and described by and confined by the overarching science. In that regard the scientific discovery is irrefutable. The conclusion is that biochemistry used as a ranging tool is fallible and that patient presentation has to predominate over numbers and "shoehorning" of numbers into or out of the "healthy range" in situations that are inappropriate ef thyroid hormone therapy. And also the the numbers have meanings unique to the individual. If this doesn't suit you, I'm afraid this is the best I can do.

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This is not a case of suiting me :-( It is not my inability to understand what you say, or of scientific methodology. I understand all of that - as many on here do. It seems, as I suggested above, that I (can't be the only one) am not missing the points that you make above - I simply have no clue where you will go with this. You still have not answered HOW these (irrefutable facts) will be incorporated into... what is the specific plan to which you refer?

Many people on here KNOW what you have just said... rephrasing it in many ways - as you have - still doesn't answer the Q... relating to those bold but bald statements made.

As said, I do hope something comes out of this with groups amalgamating for a common goal.

I wish you too well on this endeavour - yet would dearly love to know just what that is - I don't need any more of those explanations... I get that stuff.

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Wish I seen this earlier. I was bought up with the maxim 'all facts are opinion and all information propoganda' so tend towards you Linda. I think the human body, brain and experiance so diverse that what might be a fact for one person or even a large group of people in an experiament cannot produce facts that are consistant for everyone especially I think in respect of hormones. I think all science experiaments are also based on Banes therom of likelyhood and statistics {spelling appalling apologies. I dont understand the maths involved in his theory but his idea that a scientific hypothosis can only be valid if consistant previous knowlegde is great as long as the previous knowlegde is not restricted to the science laboritory and hypothaisis is consistant with the sum of all knowlegde so includes history, sociology. economics etc other wise you end up with lots of red herrings. Does this make sense.

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It is beginning to work for me, my GP is at last listening to what I have discovered - initially from this site. She has now moved from "TSH normal" to agreeing that I have a conversion issue and may need to see an endo. It has been a very long haul...decades in fact, but I was convinced that metabolism/thyroid issues were the root cause of my gradually failing health

For people who are perhaps less used than others to seeking out info, extrapolating what is pertinent and questioning existing ideas, then much greater help and support is needed. It is one thing to have the information but an entirely differnt thing to know how to use it.

It strikes me that this would be an ideal research subject for a PhD candidate with interests in both medical issues and statistics. However, like the process of improving thyroid function the results would obviously be in the long term...and may even then be outdated! Funding would be an issue....

As to a quick fix...challenging existing protocols and the intransigent mindset of those in authority is a worthwhile aspiration and a proven method of approach - certainly better than petitions most of which fail to receive enough support to enable them to go before "the powers".

Although this might be akin to water eventually dripping through granite it is possible!

It will need people younger than me with more active minds than mine to take this forward but it needs to be done. Alone, the evidence exists here in the number of people crying out for help.

Good luck diogenes

Best...

DD

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The reaction from both my Endo (a Thyroid-only specialist) and my GP was that they considered any deviation from the BTF Hypothyroidism guidelines (no mention of 'primary' in the original guidelines) was seen as a risk to their career - presumably, a knock-on effect of what happened to Dr Skinner.

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As long as people dont get killed. I would be inclined to take someone along to keep me safe. I dont know that rational arguement works however. I have tried with my GPs over another issue recently and although I clearly won the rational arguement they did not even respond to it other than to state that this was the way they worked and they were doing their jobs. There is no diversity in medicaine these days and I would imagine that in training or meetings no room for rational arguement or debate. no common sense just taking on board drug company propogandaand workingout how to meet targets. All very top down and toe the line.

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Baobabs I had a brief discussion with my MP concerning hypothyroidism and how I was funding that along with Lyme disease.

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And?

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Tory MP, say no more!!

To be fair I've been asked for my comments on the draft NICE guidelines for Lyme disease as she's in the APG.

My personal view is that we need a campaigning organisation and that ITT are doing sterling work by highlighting the issues we face. I'm certainly grateful to them.

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Good for you and yes perhaps what I am seeking may not be within the brief of this forum but yes I agree we do need a campaigning organization. Who's game?

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Twitter feed of ITT, they also have a Facebook page.

twitter.com/search?q=campai...

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Hopefully, someone from the core of the ITT group is reading this discussion. They have some amazing people who have made a brillint start. They need to be at the centre of whatever happens.

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Agreed dolphin5 they ooze dynamism and have made a name for themselves.

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Oh we are lol xxx

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Quite a few members here I think ;)

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I doubt a Labour MP would be any different.My experience suggests that an ordinary MP of any party has little influence with Ministers.

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Well Treepie they're supposed to represent their constituents. It helps that I'm not her only constituent with Lyme and I'm not afraid of saying it how it is!

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Campaining for what exactly? Can you give me say, a 10 point plan of things that need to be changed .......

The crux of the matter always seems to lead back to the lack of guidelines.... New guidelines are being constucted and TPA, thyroid uk, the scottish petition, ITT, the BTA are all registered stakeholders. Our job is to try to ensure that the new guidelines are not merely a rehash of the old statement, which clearly hasnt worked for patients ( myself included)

There is a very fine line between campaigning and shouting. Shouting leads nowhere fast, its like shouting at the police...., eventually you are left standing on your own and get moved on.

What oucome would you like to see from campaigns?

G x

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I have two suggestions that could be a loose plan but not one I am able on my own to put inplace. One is to start having meetings at GPs surgerys. Currently us patients are going into 5min consultations trying to get our points across with limited success. If One of the organisations could set up meetings with GPs at thier surgerys inwhich the issues could be given time to be fully discussed with an attitude of peacekeeping and mutual respect. How would a letter from TAUK to a GPs surgery go down if it said that TAUK or TUK would like to visit to discuss thyroid care with the doctors. I dont think we will ever find out unless it is tried.

Another of my schemes would be to persuade one of the TV doctors who support us.I think there are a few of them now to threat a patient or two publically. I think it would really bring about a break through as the GMC would have to decide whether to take action which would cause huge public debate or keep quiet which would open the flood gates as doctors would then feel safe to treat with out fear of persecution.I think the traditional phrase for the doctor doing this would be agent provocataire.

I agree shouting not helpfull.

I would like see from campaingns is good treatment available for my child with normal TSH and every hypo symptom that jumps to mind.

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When we have a proper set of guidelines in place, it should be easier to get the docs to comply with them..... the current problem is making sure the new guidelines which will be released in 2019 are not a load of old tosh. There seems to be a fair few of us registered with an interest. Its up to us to provide good quality referencing and to make useful comments on whatever is proposed.

Xx

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It seem too good to be true to imagine having guidelines that would enable my child to get treated with near perfect blood results.There is also the culture and current practice to consider. People with B12 issues have reasonable guidlines but it is still a battle to get proper treatment. I wrote to my doctor with NHS choices quotes re this but was still refused treatment. The culture of avoiding treament in very intrenched and BTA spreadingdamaging rumours to support lack of treatment. I agree better guidlines will help and they might make it possible for some patients to sue for bad practice and that might help as well but an awful lot needs to be done to change the culture.

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Well, I can't raise a scientific voice but I will raise a voice for better patient experience.

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I suspect most of those do not become members of TUK or Tpa.Also ,there are regular overseas contributions on this site which is interesting but of no use to changing UK practice.

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Perhaps it might trigger an uber-powerful international movement .... Now that would be useful. 😉

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Best thing in my view, is get yourself better by using the info on the forums.... at least if we are challenged about methods of treatment, we can show that several thousand people have regained their health !

Xx

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I would be very interested to know whether hypothyroidism has reached epidemic levels. What numbers constitute an epidemic? Is anyone keeping a yearly tally of diagnosed patients and comparing this with previous years?

Pretty certain that I'm not the only person on here who is shocked and concerned at the sheer volume of posts on a daily basis where NHS GPs and Consultants have failed to correctly diagnose hypothyroidism.

Bravo diogenes you speak much sense.

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I talk out loud now and then ,another symptom!

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Great post Hidden and didn't know that about hyperthyroidism. You've certainly given me food for thought so thanks.

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Yes I did Hidden and there's been loads of posts by patients with a high TSH. Until such time as NHS doctors have accountability I will continue to distrust them with my health.

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I have increasingly thought that there is an epidemic of thyroid disease. Not surprising when you read what can affect the functioning of the thyroid. Environmental exposure to such things as pesticides, radiation exposure must have gone up a lot since Hiroshima. We've had 2 doses in UK from Chernobyl in 1986 and then recently some more from Russia and we have nuclear power stations round our shores. Chlorine in water is another problem and so it goes on.

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Exactly crimple, we really do need to know.

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Fluoride

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All autoimmune disease is on the increase. Our modern diet has over reliance on wheat. Modern wheat has massively more gluten.

Antibiotics wipe out good gut bacteria as well as bad

The pill increases oestrogen and possibly affects gut balance

Smoking, and particularly stopping smoking increases risk of Hashimoto's

Low vitamin D is widespread, especially since modern generations have been indoctrinated that any sunshine at all likely to cause skin cancer.

Genetic involvement with DIO2 gene common

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The use of antibiotics in animals is widespread.A year ago I was in Pembrokeshire watching a farmer treating lame sheep.He cut off the bad bit on the feet,sprayed them then injected antibiotic.There I was thinking these sheep grazing on the cliff top would be really healthy to eat.

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And as we know absolutely everything is inter connected

N Wales got a lot of fall out from Chernobyl

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Yes ,but this was South Wales.

The Government had a soil research place outside Grange over Sands.It was closed with the scientists going to Lancaster University.The new owners found containers of marked Chernobyl.Not sure if soil was still in them.

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I wish I had realised just how important vit D3 was !!!!!!

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Exactly.

Would have been nice if my GP had told me or treated severe vitamin D deficiency too.

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I'd like you to prove me wrong but...

... until they start teaching in all medical schools: GPs and future (proper thyroid specialists) endocrinologist comprehensively and in depth about thyroid and treatment, nothing is going to change for a very, very long time.

Add to it crumbling financially NHS (we all know thyroid patients have free for life all meds) mark my words --> it's only going to get worse.

I'd be more happy to see easier access to thyroid medications: Levo and T3 I.e no prescription needed to purchase so people can self medicate without relying on unhelpful and ignorant doctors.

Public gets smarter and have tools to self diagnose and self medicate, licenced doctors get dumber at the same time.

GPs as we know it, will become redundant in near future.

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... until they start teaching in all medical schools: GPs and future (proper thyroid specialists) endocrinologist comprehensively and in depth about thyroid and treatment, nothing is going to change for a very, very long time.

Indeed. And who are 'they'? Isn't it right that patients should have more of a say in their treatment protocols when so many know it is presently up a gum tree? What do we do, then? Sit on our hands and moan?

Add to it crumbling financially NHS (we all know thyroid patients have free for life all meds) mark my words --> it's only going to get worse.

I would gladly pay a hypothecated health tax. We all need to man up and appreciate that we will not get the health service we want unless it is paid for. Too many fail to see the connect between 'the government' paying for the nhs and tax revenue.

I'd be more happy to see easier access to thyroid medications: Levo and T3 I.e no prescription needed to purchase so people can self medicate without relying on unhelpful and ignorant doctors.

And what of the denuded body dysmorphic who want these hormones for the purposes of perceived increased muscle mass or weight loss?

Public gets smarter and have tools to self diagnose and self medicate, licenced doctors get dumber at the same time.

Sometimes Dr Google is great. He got me here, eventually. But he also sent me chasing my tail following snake oil for my hair loss. Cave t'internet. By the same token how would it be if the only emporium we had was Amazon? Diagnosing and treating is held to be a medic's circle of excellence. There are good and bad, eminent and dire in any walk of life and I wouldn't dismiss them all so readily.

GPs as we know it, will become redundant in near future.

I freaking hope not or my husband's prostate cancer would have gone undiagnosed and I will have to turn to Dr Google every time I'm ill. With the exception, in my experience, of everything but thyroid issues and Lyme disease, the results wouldn't be pretty. Be careful what you wish for.

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Agree with nearly everything you say Rapunzel but as for the muscle men and the slimmers I suspect they know the risks.

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Rapunzel,

Your point about And what of the denuded body dysmorphic who want these hormones for the purposes of perceived increased muscle mass or weight loss? is an issue. Am quite sure that some people would misuse.

What has intrigued me is whether there is more, or less, misuse in countries where levothyroxine and liothyronine are available without any real restriction?

Is the tendency to misuse rather more cultural than legal?

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Now there's a typically egg headed conundrum from you, mister :D

I'm afraid I have more history of drug abuse than the typical poster, I'd imagine, but that's all in my murky past and I never done dem kinda drugs, gov'nor, honest :D

Rubens would have loved me. There's some culture for you...

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I can't add much more to what others have said here. I agree with you, absolutely.

If different thyroid support groups can cooperate in this endeavour, that would be the preferred way forward. That said, I am very sceptical that even in these circumstances the medical profession would listen, and then change. There is too much at stake for them, with damage to ego, status, earnings, as well as their career-long self-identity with specific professional education, method and practice.

If the presentation of medical scientific facts does not bring about the changes in practice we all hope for, then a class action would surely have to be considered.

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ITT Campaign group is fighting for change and as expressed above by another poster, they do not provide advice on dosing or blood test results etc.

It would be marvellous if TUK and ITT could pool information and resources.

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If ITT could set up a website presence away from Facebook, that would be ideal.

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They are working on that

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Good to hear.

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Yes Web page is underway. And diogenes funny you should say this today, it was a conversation we at ITT were also having. Joining together, to act and make ourselves heard, was always the underlying point to ITT, to try to bring as many people together, so that those of us, when able can do what we can.

It was clear that our independent efforts were failing. Individually we are all to easily fobbed off and ignored. It is also too easy for a trusting individual to be convinced that the poor advice and treatment they are being offered is the best that can be.

We need to be able to collate facts and figures, statistics to prove that this problem is bigger than projected. We need to be able to show that the invisible people, those self medicating and not on the NHS radar, are real people with a real condition that are being neglected under the current regime.

The articles produced, by yourself and other likeminded are invaluable and should be heard and appreciated. Education is the key. Method is another matter. How do we all get the message through to those GP's who are having independent thinking trained out of them, and patient who still believe that their GPs are infallible?

The T4 mono therapy mantra has been so indoctrinated into so many. When Endocrinologists say they do not know what NDT is and have never heard of Rt3, and GP's who do not know what T3 is and admit cannot interpret T3 results, we certainly have our work cut out. However, I do truly believe that by standing up and being counted and us all working together, after all we all want the same outcome, that like the Dagenham women we can influence positive change.

change.org/p/itt-campaign-g...

The ITT petition has nearly 30 000 signatures, and is ongoing. This petition was growing steadily, up until Christmas and ITT need to start promoting it again to try to grow it further. 30 000 is impressive and a big indent to the 100K we need to take this situation to parliament and it would be madness to let it slip now.

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Thanks for all that you're doing UrsaP

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Hidden Thank you but that would be not much of late! Thank goodness the rest of ITT group are still going strong. I need to get my act together and get my head back into ITT!

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Good to see you on here - hope it's going well - I drop out of much when winter sets in.

Very best to you!

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I am a proud faceb*ll*cks refusenik. The more I hear about the lack of privacy, profusion of trolls and freaking FOMO, the more I will dig in my heels.

Very much doubt I'm on my own there and I'm done trying to hang with the kids... mine all grown now and doubtless my grandchildren will have their very own version of this.

We thyroidies moreover are more likely to be post menopausal and unlikely to join the party. A wave to those who are not, tho 👋🏻 🥂 I salute you and your infinitely superior remaining drive 😪 Do chop chop with the website xx

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Rapunzel,

Refuseniks of the world unite!

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Word 👍🏻

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Not even Twitter which the Secretary of a local Club I am a member of keeps recommending as it has more hits than the Club web site.

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I agree on some levels Rapunzel, I hate all this 'i had toast for breakfast' ...or 'my first pint of the day' (at 9am! ) rubbish, but can't get away from the power of social media, in whatever form, for bringing people together. It is harnessing that power that will get enough of us together to be heard and to fight for change.

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On the other side of this, I suggested last week some time that maybe it was time to produce a professional looking leaflet that you could hand to your doctor/diabetes specialist-pretending-to-be-an-endo. I didn’t elaborate at the time, but what I meant was that it could cover many of the things that come up again and again here, like

A suppressed TSH in itself is not a sign that someone’s over-replaced with levo

Most hypothyroid folk feel better with an FT3 in the upper part of its range

Keeping someone undermedicated leads to vitamin and mineral deficiencies (probably because of reduction in stomach acid)

Thin people can have hypothyroidism too...

etc, etc.

I realise that maybe some would say it’s not Thyroid UK’s place to produce such a leaflet but we could reference it with sufficient links to research backing up what we’re saying - because if we don’t do it, who will? I’ve seen no signs of medical training on thyroid getting better - if anything, it’s getting progressively worse. Someone somewhere has obviously recently advised a good number of GPs to try taking their long established hypothyroid patients off levothyroxine altogether - we’ve had so many come here to tell us that in recent weeks it can’t be a coincidence. Where is this mis-information coming from? Can’t we at least try to replace it with something? Thyroid UK could charge a small fee to download it, to raise money for the charity.

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I think that's a great idea, and I'm sure there is enough collective knowledge in this Forum to start putting a draft together, with the required links to scientific papers to back up claims.

Whereas I've found this forum a lifeline and incredibly useful, I'm afraid the links from Thyroid UK do not fit the bill of a professional well informed-myth dispelling document that one could hand over to the GP when trying to make a case for better treatment/dosage as you propose.

I'd be more than willing to make a contribution to fund the generation of said document (and I bet many in this forum would too), and I also think it a great idea to charge a small fee for the download.

What's more, I think a second document highlighting the shortfalls of our current clinical practice and implications for the health of the public could be attached to it and sent to MPs across the country to raise their awareness of thyroid issues (are there statistics of incidence from one constituency to another? - they think on votes potential!).

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I totally agree Diogenes that we need to create an Alliance of thyroid groups willing to push the thyroid story further with a combined petition and other research into the realm of reality and out from under the tsh doctrine.

As a member of ITT I was looking to try and nail down exact numbers of thyroid sufferers. GB's 1-2% as quoted by BTA is way off the mark. The America National Institute of Diabetes & Digestive and Kidney Diseases says 5% of Americans are affected. Translated here, and there's no reason why not, that translates to 3.28 million have thyroid disease of that say 20% probably have conversion issues etc so that number is 756,000 who might need combination therapy.

My own thyroid story has coalesced into Hypopituitarism; how many go undiagnosed for this too?

Let's make this work.

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I dont think anyone will be offended and I think the idea that groups could work together is great and more feasable now than it has been in the past.

I am not a fan of Toft and dont personally think we can trust him, his coat has turned too many times and when I had a private communication with him his attitude was so appalling that it took me several weeks to calm down. I am concerned that if we allowed him to be a spokes person in any way for us he would do more harm than good. His current support for T3 has only come about since he started his private practice, his previous disdain for T3 when he was head of BTA has placed him in a really good position to sell it privately now.

I think what ever we do we need to stop argueing with the people at the top. When there is curruption at the top you need to work your way up through the ranks. We need to be getting junior docs and GPs on our side and not sure about how to do this.

Doctors are a difficault bunch to deal with, they do a very responsible job and seem to need an almost blind faith in themselves to cope. They do not respond well to being questioned or argued with and can sometimes really bully if you try. We now have 100,000 patients argueing with endos and the results is a lot of patients are being bullied.

Joining up as groups is great but we need something to break the impasse. There are TV doctors who support us. If one of them could be persuaded to treat someone publically in the way Dr Skinner did it would bring about a break through. The GMC would back down I think rather than try to strike Dr off and cause a big public debate and if a patient was treated publically on TV with no repercussions for medic involved I think a lot of doctors would be more open to providing better treatment. I think the fear caused by the GMC when Dr Skinner was disaplined so many times is palpable if that could be reversed we would have a lot more doctors on our side.

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I have just had an idea but what if we paid student doctors to work for us. What if we clubbed together for a fund and offerred student doctors say £10 an hour to 'help us' LOL in this forum. It would be a way of educating them as to apporpriate, good treatment of thyroid issues. We would probably have to restrict them to 4 hours each or something but that would be enough time for them to begin to question status quo.

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Sadly, could represent 'conflict of interest' with their [hard] taskmasters!

Great idea though and where everyone needs to be striving for the best for all, medics included, not some mental status quo where everyone loses out.

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i agree in general with your thoughts , but, would like to add that if and when this comes to fruition one thing must never be forgotten and needs to be a major part of the conclusions .

as many people now know most people are different and what treatment - be it levo , ndt , t3, t4 and others - works for some will not work for all , so actual examples of specific cases of each would need to be specifically quoted both for and against each treatment to prove that this is such a variable condition that needs individual treatment with whatever works for the individual , and can change in dosage and/or additional/adjustment of current treatment to suit the condition at any time . but to do this far more regular updates on blood levels have to be made to ''tweek '' the meds to suit - which will mean that the endoand g.p. and patient HAVE to all be ''singing from the same songsheet '' at the same time ....... just my immediate thoughts on this matter .....alan x

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Tweaking meds by blood test results is one of our problems, I think. The clinical picture is almost always ignored, as are such methods as measuring and monitoring basal metabolic rate (difficult to measure accurately, but this was the late Dr John Lowe's preferred method), basal pulse, BP, and temperature.

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exactly what i am saying ..... the tweek in meds needs to be done in conjunction with ALL other information INCLUDING the basics of exactly how the PATIENT is feeling in other related matters - that can effect the cause or have an impact on effect and meds - ALL ISSUES HAVE TO BE DEALT WITH COLLECTIVELY for the optimum results for the patient --which is what we all want after all .

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What you wrote reads a little differently, but I agree with the points you make.

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Indeed and, sadly, there is no 'hard scientific' facts for this - just an optimum relationship between medics and patients, looking also at what has gone before.

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but , , as in all medical treatments that actually do work the relationship between the patient - medics- condition IS vital for the correct optimum treatment of the individual patient [ baring in mind that thyroid problems have a vast array of effects on other parts of the human body in different ways , and need to be treated together ] , to actually get to the optimum regime for the patient ...... in other words everything and everyone have to be singing from the same songsheet together .....alan x

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Obviously, now we know the individuality of biochemstry versus symptoms, the relegation of biochemistry on therapy (especially FT4 and TSH) to a lower priority would be a clear goal for education of GPs/endocrinologists. Moving away from number crunchng as a diagnostic is a must.

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Well said - we have to move forward in unity to stand any chance of getting meaningful change

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I feel that we need to be focusing on educating the medical profession, rather than getting people to sign petitions. Even if our situation is discussed in parliament, the MPs don't understand the issues, so having them discuss things they don't understand can't achieve a lot, can it?

Then there's the business of writing to Jeremy Hunt - or Teresa May. They will just ask the "medical advisers" who say the same as our GPs and endocrinologists/diabetes-specialists - so the subject is dropped.

Even my friends are inclined to think I must surely be exaggerating, and that I should trust my doctors who surely know best.

It's really all too appalling to be believed!!!!

The King is still believed to have all his clothes on. We need to find a way to strip him in a very public way!!!!! Surely highlighting the evidence must be the key. As Diogenes says, the evidence is available.

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I've taken the "evidence" to my GP today. She says she will read it but her hands are tied as CCG'S will not let GPS or Endos prescribe T3 or ndt in Norfolk.

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but , if your g.p. firmly puts the onus onto the ccg for any adverse effect from the lack of adequate known treatment from their budget that affects the patient [ which then causes legal implications ] the ccg would then re-think their stance -- but it does need some strong g.p.'s to prove the point ...... after all your g.p. is responsible for your optimum health ...... and this therefor encompasses the medical and political and excuse professions

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diogenes as UrsaP says it is something that has been recently discussed by a number of the ITT group. Personally I feel a conference of all groups and campaigners - ITT, Thyroid UK, TPAUK, Midlands Support Group, C.A.T.S, Thyroid Trust, Paul Robinson, Lorraine Cleaver, etc etc would be advisable. To collectively work out how together we can crack this.

When I originally set up the ITT campaign I did try hard to recruit Dr Toft as it was his appearance on the Trust Me I'm a Doctor programme that I have to thank for my rebirth from the dark side of thyroid ignorance of 30 years of T4 only. I do feel we desperately need people like Dr Toft on board.

Following our group discussion, I am planning on contacting all the groups mentioned and more, to suggest ways we can pull together. I think it may be useful for us to discuss this further and would very much appreciate if you could email me at - ittcampaign@hotmail.com Many thanks

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While it's good to have Toft on board, I would like to use him as a Trojan Horse to enter at whatever level the thinking of present day thyroidologists. Toft alone won't suffice, but I realise that any success will be gradual in finding out if there are any practitioners in the UK that dare to challenge current thinking on treatment and diagnosis. Foreigners won't do, because the easy fallback is to relate what they say to "their particular populations". As if we weren't all human!

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This is why my plan from the start was to attack from all sides.

From the grass roots / from the bottom - with ITT local support groups, as nationwide as possible, with handbooks for GPs and endos and with street campaigning to reach as many thyroid patients who are still on the dark side as possible ( the dark side of thyroid treatment & knowledge, as I was for 30 rotten years). If we can slowly recruit a very large percentage of all thyroid patients across the country this I feel will really help the campaign.

From the side - a public awareness campaign to raise the profile of just what poor treatment is doing to peoples lives and how this is ultimately costing the country and the taxpayer money.

From above - recruiting MPs, doctors, Endos etc to put pressure on the 'powers that be' to effect change.

I appreciate that it is not just this simple and will be a gradual process, and that more than this is needed.

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Not sure that Toft will do and who else is there... left?

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That is one thing that annoys me - as if research done in other places is invalid just because of the geography.

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I'd like to see a Thyroid Council - a alliance of groups all working to improve knowledge, apply pressure and promote treatment options.

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I will continue to do all that I can to try to make change. I have been through doctor battles and have come to the conclusion that we the people are fighting against Big Pharma. Doctors are big Pharma puppets and need to pay off their student loans and their mortgages. Big Pharma also controls the government and Media. We have to stand up to them together. The pharmaceutical drugs that doctors are incentivised to give us are making us ill, we don’t need them. We need to walk away! When you stand back and look at the big picture, look at what they are doing, they are not the slightest bit interested in thyroid disease, the money is made from chemotherapy, which is why new chemotherapy wards are popping up everywhere, we are told it makes it easier for us! Follow the money!!!! They are not interested in us!

It is always the people that make the changes - have we got poll tax? No

We need to vote with out feet and our £’s and stop buying the poisonous water, food and drugs!

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If Drs are not tending to our medical needs as enshrined in medical codes of conduct then surely they can be reported to the GMC?

I wouldn't know how to report CCG's - is there an ombudsman for them?

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linda96 my experience is that the GMC are not interested in patients, they merely represent NHS doctors who pay them an annual fee.

CCG's really do need their wings clipped, they have far too much power which is detriment to the health of patients. I don't know if they have any accountability, then again they consist of GPs who have zero accountability for shabby doctoring.

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Iv just checked the GMC website and to be a dr practicing in the UK (as opposed to just NHS) you have to be registered with the GMC. Im heartened that Drs complain about other Drs to try and maintain standards.

I did go to my local CCG governance meeting last Tuesday as the public are allowed to listen in and there was 5 minutes set aside for the public to comment. I came away with a 120 page dossier, which I'm working through.

They appeared very professional and there was cross examination on points as well as some cheering for jobs well done. I raised a point which could not be dealt with immediately and they've turned it into a FOI.

I shall go to another as it was very interesting.

Working together for me means working with the CCG's and help them to understand the salient points about hyper-and Hypothyroidism that both the BTA and RCP have failed to divulge.

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I suspect that CCG's are being given increasing power. There was talk of them being given the authority to veto GP referrals, so what is the point of GPs? GP's are being controlled and undermined. Surely this would leave the GP vulnerable. If they agree a referral is necessary and then the CCG veto it, and it turns out that the patient should have been referred will the CCG take responsibility, and if so who within the CCG, or will it be a faceless group, who cannot be identified. Patients will be going in even more circles unable to identify any real hierarchy to appeal to. GP's need to start standing up for themselves, for their own sakes as much as ours. They are not going to need to be be trained, badly or otherwise, as their job becomes more and more just a tick box exercise.

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UrsaP I've just been looking at my CCG's website and specifically its board members. Crumbs, there's a lot of folk with fancy titles who've done every job possible within the NHS for the whole of their working life. Oh and a good few GPs too.

What's missing though is a few ordinary Joe's who've experienced challenges with the NHS, with both good and bad outcomes of real world experiences. Lay members seem to consist of more lifetime NHS workers with fancy titles.

Jobs for the boys ... again ... in their own little bubble ... again.

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Suspect so Hidden I have contacted the local health service committees as a patient, but not even got a response!

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Don't give up UrsaP and hope you hear something soon.

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This is the problem, who is

Checking the checkers? The RCP, GMC, BTA are all the same, old boys network.

Harold Shipman wasn’t struck off until quite late on but Dr Myhill and Dr Sknner and Dr Wakefield - what have they done? Helped thousands of patients!

Trouble is it all takes several years until the truth comes out, so we must all do our bit now. Corruption! The more you look the more rabbit holes there are and the deeper they become!

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Ain't that the truth Chippysue and wasn't it doctors who reported Drs Myhill, Skinner and Wakefield?

Yes, we must do our bit by questioning everything and sharing info widely. The public really do need to wake up.

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Do remember! If you want the medical establishment, endocrinologists and doctors to wail "mea culpa, mea maxima culpa" wear sackcloth and throw ashes over themsleves in penitence for past error, forget it however much you might like it to happen. Political matters don't work like that: "no one was to blame, everyone abided by the best advice then available, and from several areas (USA, Europe, UK et al). So given the agreed stance how could we oppose it. All were content that this is the best advice, and who is any individual to say otherwise". In regulation all bodies hang on nurse, for fear of finding something worse.

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How very true Chippysue It seems so wrong that you can put Shipman, Myhill, Skinner and Wakefield, in the same sentence. But it is a fact. despite the fact that Shipman was a murderer and the other's life savers! How can it be?

If you look at the responses from all the organisations you mention, they all circle back round to the 2015 BTA statement. And as we know that only appeared following Lorraine's Ask for Evidence and it coming to light that evidence did not exist. But the whole set up is just downright lazy, relying on one document, based on biased and outdated and limited information, which does not appear to have any form of real checks. If they each back each other up, no one is questioning what they are doing.

Also a case of too many cooks.

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Linda doctors reported to the GMC get a medal and promotion and any other doctors reporting risk thier careers.

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I'm not sure what you mean by:

"The pharmaceutical drugs that doctors are incentivised to give us are making us ill, we don’t need them. We need to walk away! "

Those of us with no thyroid gland die without the drugs. Those with hypothyroidism also die in the long-term, it just takes longer.

Even if people take NDT, they must normally access it privately, and many will also need some T4 to get the balance of T3 and T4 correct.

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Thyroid medication is not one of the pharmaceutical drugs that doctors are incentivised to prescribe which is part of the problem. They want us to take the ones they are incentivised to push on us. Doctors are running a business.

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I read somewhere recently that Levo was once on the incentive list, but that was presumably to push NDT and any T3 off the radar. Now it is standard issue it no longer warrants incentive. Whereas antidepressants do!

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Have you seen that today Dr Myhill has made a complaint to the GMC about the PACE trial investigators?

I know about Dr Skinner and I am sickened that his health failed probably due to the hounding of the GMC.

These institutions are not going away any time soon and the lack of thyroid expertise in some Endocrinologists needs pointing out to them for them to deal with. The Dept of Health quotes the BTA (well they have done in the 4 letters I've received from them, lol), so they aren't disbanding any time soon. The RCP, founded by Henry VIII, while being crap at thyroid issues, has its part I'm sure to play in creating our better thyroid future. They have so far shown no remorse in condemning hundreds of thousands of us to T4 monotherapy so we need to provide them with all our information (I know it sounds easy, but isn't) to reformulate their guidelines, we have to be persistent and use the courts or other recourse, if necessary. My previous GP said a few years ago that there were many GP's in fear of being sued so they stick to the guidelines and codes of conduct currently available however bad they seem. I don't like it any more than you do but I realise change comes from within. The BTA is aligned to other thyroid associations that live in different health systems around the world, so their thyroid information sources have to be viewed with this in mind. Their 2016 and 2017 statements did seem to be softening in their approach to T4 monotherapy only and we need to encourage them to understand those of us improving while taking T3 or NDT are NOT going back to T4 monotherapy despite their statistics from flawed research! (Only a couple of clinical papers from the hundreds I'v read separate out non-converters from converters at the beginning of clinical trials, to my mind making any results analysis null and void).

Whilst trying amongst ourselves to make an alliance to create a larger organisation to negotiate to better our thyroid treatment, we need to be seen as 'good partners with gravitas' by these Institutions otherwise we aren't going anywhere.

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I 100% agree that Thyroid Organisations (whether charity or campaign groups) are most effective when they pull together. Strength in numbers.

With that said, however, we should also keep in mind that each of these groups also have plans behind the scenes that they are all working on and may not be public knowledge yet. I think it’s unfair to say some may not be as effective when in fact they are doing lots that we may not actually see or be aware of.

What would help is some transparency of future plans from organised groups and a synchronised effort from all to deploy their strategies either in partnership or at least with tactical timelines being considered so that they compliment each other and keep up the pace and momentum.

As part of ITT I would love nothing more than a joining of hands on this if it means it would make a tangible difference!

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Thank you for suggesting that diogenes!! Yes and a place for people to come together and to have it logged how negligent doctors and endocrinologists especially, have been and the names of these medics!!! It is time for the medical establishment to be accountable for the thousands of ill people with thyroid issues being ignored and brushed aside. Of course until the draconian guidelines are changed nothing can change!! Thank you.

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You probably already know all this but why don’t you get together with ITT (Improve Thyroid Treatment) Campaign? They are working very hard, and successfully, with their campaign. They are in the throes of setting up a website but you can access them on Facebook.

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Good - glad she’s responded. I didn’t have time to read them all.

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I am wonderingif we will ever get to a place of a change of practice however much we protest. I think in regard to hormones anyway it is safer for people to self treat. This is more or less the case for diabetics who chose howmuch insulin they need by testing themselves or being aware of hypo symptoms. Whatever blood tests say I have taken 4 grains today and need some more, I normally only need three but hay ho it is cold outside and I have been swimming. I think GPs are going to find themselves replaced for the most part by computers that provide tick boxes for symptoms and churn out prescriptions from a slot and being as most endos sit behind a desk telling all the patients sent to them that there is nothing wrong with their hormones they will be out of a job soon too. It is just economics. any profession that claims it isnt needed willl find itself dramitically reduced over time. Lots of GPs will not refer to endos now as they see it as a waste of time and money.

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By this, you are forecasting "garbage in, garbage out" for future automated diagnosis. If the input is indeed garbage that's what will happen. What the medical profession have to admit (and the AI enthusiasts) is that we are all individual and statistical answers can't therefore work for the individual.

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Diogenes and mandyjane , here is an excerpt from an article published in The Scientist in 2013, predicting the emergence of 'Health Booths' in the 2020's (no so far ahead now).

Imagine this scenario. A passenger (Mr. P) riding in a car suddenly starts feeling unusual symptoms. He stops at the next health booth (HB)—an ATM-like machine for patient health checkups. As he enters the HB, the patient is asked, “How may we help you?” He verbally describes the symptoms and inserts his H-SMART card, uploading his personal health data. The patient is asked to insert a finger into a slot for a quick blood draw. In a few minutes, the system will analyze various biomarkers in the blood, and display them along with the normal ranges, highlighting any abnormal values. Finally, the computer displays the diagnosis, and may even offer medication via an automated pharmacy in the booth.

Full article is here the-scientist.com/?articles...

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Beam me up Scotty!

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If doctors continue to act as administrators and not use clinical judgement to meet individual needs we might as well go down that line and probably will. I would give it no more than 5 or 10 years before a lot of clincial decsions with be based on computer tick boxes and made by computers. They will start with the less emotive,less serious issues such as acne or colds or warts and stuff and build it up. |Numbers of GPs will be reduced gradually untill there is perhaps only one per surgery.

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We can complain to pals patient advice liaison service or your GP. We shouldn’t have to self medicate or be left for months. Would a diabetic patient be left for months? I don’t know neither do I have the knowledge- what do you suggest?

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