The Mission Statement: Providing information and resources to promote effective diagnosis and appropriate treatment for people with thyroid disorders in the UK
TUK's Objective is The relief of sickness of persons suffering from thyroid disease and related areas, for the benefit of the public...
Looking at this from the perspective of a person with a thyroid condition, as I am...
I trust that we can agree, at least in our 'levo won't work for me, I feel awful and my Dr told me to go away' riddled forum posts, that we are many. I do not doubt that TUK is providing information and resources to patients, but what are TUK doing to provide clearly much needed information ( TSH means jack sh*t, doctor...don't tell a thyroid patient to eat less and move around more...stop pooh poohing private tests, which are more thorough than can be had through the mainstream NHS {Thank you, Monitor my Health - an NHS lab which does private testing that can't be pooh poohed by your doctor hahaha } to the medical profession ( and don't mention ITT, because that wasn't started by TUK).
If the objective is to be met, then what's happening at the moment isn't working. We need to work towards better education for medicos, first. Don't we? We're otherwise guilty of subscribing to a two tier health service, don't you think?
Whaddya say thyroidies?
[Admin Edit: Rapunzel is referring to the Thyroid UK Charity. Their 'Mission Statement' can be found on their website here thyroiduk.org/about-thyroid... ]
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Rapunzel
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I could be wrong ( and very often am) but I was kinda under the impression that organisations like the BTF seem more influential, at least in medical professional terms, than TUK.
The BTF seems like they are far more orthodox and NHS mainstream than us rebels on here. I'd love nothing more than for GP's and Endo's to read the comments we post, even if it persuaded only 1 doctor to think again.
I get the idea that TUK is far more patient focused, offering support and advice to people like us, allowing this forum to exist. And we are often very uncomplimentary about doctors on here. But as I said I could be wrong. I just wonder how much clout TUK has with the medical fraternity. I know some doctors are very scathing about patient forums.
“we are often very uncomplimentary about doctors on here…”
Perhaps that’s precisely why they should be reading our comments here! Take the wind out of their overinflated sails once in a while (or quite often as happens here). I can think of one or more of these professorial egos who could do with a reality check from their victims!
I do agree that, perhaps, a closer link with the medical profession might be beneficial but for that to happen there needs to be a willingness to listen on the other side and, I’m sorry, but I don’t think they would have the inclination to be so.
Doctors are a bit like ostriches… head in the sand and arse in the air - neither position conducive to learning anything, especially from the people they’re supposed to be helping!
It got marked on my medical files as a negative that I mentioned getting advice from here 😔. Advice from here has been the only thing helping me get any progress even if slowly.
i think we need to be aware that advice from here ( public forum enabled by thyroiduk ) should not be presented to a GP as 'advice from thyroid UK' ( the charity ) who need to be much more careful about what they put in print .
i would never mention to a doctor that i have been anywhere near a thyroid patient forum , regardless of who runs it.
When discussing things with a GP , i refer directly to research papers i have read., or say 'i think..... '
actually , I do wish this forum could be more welcoming to doctors as i think it would open the eyes of some of them if they had chance to follow some patient histories/ case studies on here over the longer term .... but realistically it's difficult for them to get past finding 'your GP is an idiot' written on virtually every page... (we do give them a pretty rough time, and much of it is well deserved ,,,, but there are also plenty of occasions where it's a knee jerk comment, before finding out the full facts)... which would deter most of them off hanging around for long enough to learn much .
But it’s recommended in nhs patient choices isn’t it? They can’t have it both ways.
I found BTF a TSH gold standard flag ship and not one I’m drowning in - it was utterly useless. It’s for those who thrive on Levothyroxine who don’t need any help if their lives have been restored to full health
Mine had/have autoimmune so it’s interesting that they did ok but I didn’t. Only to me, generally we’re pushed right out of any research which might illuminate these things.
My hypo isnt autoimmune, as far as I know, but Levo monotherapy didnt work for me, even at 200mcgs. I didnt feel dreadful as some have, but far from well.
This is the info I can find on the different charities involved in matters thyroidal
BTF
Total income: £236,007
Total expenditure: £240,624
12 Trustee(s)
49 Volunteer(s)
ThyroidUk
Total income: £96,900
Total expenditure: £98,796
6 Trustee(s)
26 Volunteer(s)
Number of employees £60k
0
Thyroid Trust
Total income: £16,485
Total expenditure: £27,132
6 Trustee(s)
20 Volunteer(s)
Number of employees £60k
0
Thyroid Patient Advocacy
(Nothing reported for two years!)
Total income: £1,146
Total expenditure: £3,529
3 Trustee(s)
Number of employees £60k
0
Thyroid eye disease charitable trust
Total income: £47,161
Total expenditure: £10,335
4 Trustee(s)
11 Volunteer(s)
Number of employees £60k
0
Butterfly thyroid cancer trust
Total income: £381,764
Total expenditure: £132,872
6 Trustee(s)
24 Volunteer(s)
Number of employees £60k to £70k
1
Thyroid cancer support group Wales
Total income: £2,252
Total expenditure: £1,296
6 Trustee(s)
Number of employees £60k
Not reported
(0 surely)
It explains why BTF seem more influential - they are much richer than us. And even adding us thyroid Trust and TPA together they are still richer. But the butterflies win it, they also pay a biggish salary to the ceo . Interesting that that cancer of the thyroid can get more money than the whole thyroid problem caboose can.
Can’t find membership numbers which might be interesting to know for comparison to help determine sources of funding. It’s probably buried in the financial reports. - any takers to find that info out?
thyroiduk has over 100,000
And GET THIS:
BTF 200 members
ffs ONLY 200 small wonder it’s hidden away on there site and they bleat on about all the medical professionals supporting them its nothing more than a front for the dinosaurs of endocrinology. Nothing grass roots about that lot
Thyroid Trust says it’s not a membership organisation but has a section to in how to become a supporting member 🤔 no of supporting members are not given. They have a very nice web site, slick and inviting.
Then there’s the shady British thyroid Association once called called the British thyroid Club. It’s not a charity and Simon Pearce is one of its drum beaters. An expose of that lot and who funds them would be interesting.
TSH110 'Can’t find membership numbers which might be interesting to know for comparison to help determine sources of funding. It’s probably buried in the financial reports. - any takers to find that info out?
thyroiduk has over 100,000'
Important! The membership number you've quoted applies to this forum only. It is not representative of the number of 'paid up' members of the Thyroid UK Charity. You can view the latest accounts of the charity here thyroiduk.org/wp-content/up...
Thanks I thought it was a lot of members to be paying the fee. I suppose it might not be a completely fair comparison then. Even the paying people here must be over 200 surely
BTF is extremely closely linked to BTA (which is the endocrinologists professional association), that's the main reason why BTF are so much more influential, although i'm sure the money helps . They are just the propoganda arm of the BTA.
Can't remember the details off top of my head but there was a post with the nitty gritty on here , maybe 3 or 4 yrs ago . (along the lines of same addresses registered , same names cropping up in different roles for each organisation , that sort of thing) not much chance of finding the post since the search facility on HU is so pants, but might have a look later if i can be bothered.....
Yes, it needs to go further as after (no idea how many) years we are still in the same situation, with no improvement in treatment.
I think the mission needs to include fighting for better care for patients by lobbying government, NICE, BMA, medical schools, press etc to fix their malign ways and publicising the right ways to treat patients.
Unfortunately, quietly helping sufferers (a great job and a great service is done here, thank you very much) will not fix the current faulty system.
I absolutely agree with you Rapunzel but I’m not sure TUKs mission statement is worth wordsmithing. What Thyroid sufferers need is someone to take on the cause, a bit like Davina McCall did with menopause. To highlight the suffering that we hear of on this forum: Some of the awful stories of how sufferers are treated by the medical profession: To highlight the lack of research and effective treatment for hypo sufferers (I honestly don’t know whether hyper sufferers feel the same way?)
Just to highlight that we are having to find our own way through brilliant patient sites like this one, when we come up against the TSH wall of doom!
I wonder whether a Van Tulleken dr or someone similar to them, might investigate and report on the lack of progress for hypo patients. I’ve heard of Toft and know that he was essentially hounded by the medical profession because of his views, but surely we just need some publicity about the situation?
Meno56 'wonder whether a Van Tulleken dr or someone similar '
It really needs to be someone who has actually experienced the issues that we deal with, because it's only when you've 'been there' that you can properly understand. A few years ago, Dr Renee Hoenderkamp (a UK GP), championed our cause for a short while. She seems to have since removed the video that I was looking for (probably too controversial), but here's her YTube channel youtube.com/watch?v=QJqWKwI...
agreed. We need more focus on delivery of mission. Particularly, engaging with professional bodies and advancing proper patient centred concordance in all consultations and all treatment plans including proper diagnosis and monitoring of thyroid status and phenotype!
Davina McCall was able to promote something (HRT) that the medical profession had not set its face against (by the time she was promoting it anyway).
But with thyroid issues, the medical profession are very against doing it properly and will just say that we/ the celebrity are wrong or ignore them.
Some knowledgeable doctors have tried to support us (e.g. Drs Skinner/ Toft) and some have reported that conventional treatment is wrong (e.g. Dr Kendrick) without being directly involved ( I believe).
It needs us to find someone strong that the medical profession respects. In the same way that Dr Malcolm Kendrick has been hounded and had to go to court to support his view on statins, it would take someone very strong and well respected to take the punishment they would get dished out (and seemed to kill Dr Skinner) if they openly supported proper thyroid treatment.
Don't know how to find said someone famous and expert prepared to put head above the parapet? But maybe TUK do or could?
Maybe could sell it to the BBC as an expose like Post Office scandal, but again would need medical professionals prepared to speak up.
I totally understand where you are coming from on this one. I have had a few conversations in a similar vein privately with other Forumites. However I think TUK has chosen its ‘Mission Statement’ with care. It’s doing what its purpose states. It’s not a legal organisation even if it does make a serious attempt at involving itself in the business of official thyroid organisations.
However there is a definite need for what you are talking about. A more strong arm type of organisation with some sort of credibility where doctors are concerned. An organisation with researchers and legal bods onboard. It’s been mentioned in other replies about doctors who speak up on patients’ behalf getting treated very badly indeed. Whilst we are extremely annoyed about this, the system that is in place for doctors is a dangerous one. Wakefield (even if he was wrong) seems to have greatly damaged and silenced anyone bravely avoiding the party line.
Or just smite a certain person from his eminent position. Surely that will come to pass eventually. There are endocrinologists who genuinely seem more interested in the job of endocrinology, sitting in the wings.
Doctors being responsible for investigating their own ‘crimes’ setting agendas for what is right and wrong? Peer monitoring? It’s not worked in other organisations. The Police being one and not forgetting the appalling mess in the Post Office!
It would have to be led by retired doctors (a possibility) although if they are good doctors would it be better they stayed in their jobs? Still some might see it as a move towards retirement and contributing to something else useful.
It will be interesting to read Lord Darzi’s report about the NHS when it comes out. No idea when it’s due though. He strikes me as a pretty sensible person but who knows what it might contain by the time it’s been defended and chewed over before it is published. Maybe we should be writing to him - even as individuals. Don’t know if our proposals would get to his ears.
I am sorry I hear the likes of Davina McCall being bandied about. Frankly it makes me cringe but if she or anyone like her has got credibility (IMO God help us all) well I suppose I could go along with it. Just does not seem to strike a serious enough note for me but could be entirely my prejudice.
How would it be paid for? Of course it should be paid for from the government’s purse but that’s not going to happen in my lifetime. I keep forgetting to pay my dues to Thyroid UK and ……. It’s an expensive business, setting up hearings and the like, even if people come forward to work voluntarily. Another thing that grates on me, if the job needs doing, which it sincerely does, why can’t people be paid for doing it?
It has to be properly costed up. I thought charities could legitimately pay staff for campaigning as part of their charitable remit. Getting the funds to do so is probably a challenge. There are all sorts of grants to apply for but this needs bodies and time. I suppose it might have to start out small and gradually be ramped up as practicable assuming nothing of this nature is being carried out currently it would be a new venture, always an unknown.
Glad not to be a solitary voice in the wilderness. Limited time so bear with me, as some pertinent thoughts abound.
Sparklingsunshine makes the point: The BTF seems like they are far more orthodox and NHS mainstream than us rebels on here. I'd love nothing more than for GP's and Endo's to read the comments we post, even if it persuaded only 1 doctor to think again. And yet, NHS online recommends turning to HU TUK's forum. Why is that, I wonder? Which avenging angel decided that HU TUK's forum was the one to promote?
Dr Toft, previous president of the BTF, didn't raise his head above the parapet to declare: The facts of the matter are that the current guidelines for LT4 replacement therapy in primary hypothyroidism are not fit for purpose and the continued reluctance to approve additional treatment with liothyronine denies the patient the precision medicine which we are encouraged to adopt, and which many patients crave... until he had retired. rcpe.ac.uk/sites/default/fi...
Zephyrbear notes: I can think of one or more of these professorial egos {medics} who could do with a reality check from their victims! I would not ordinarily wish ill health on anyone. However, having travelled this gruelling road for 15 years, with no help from the NHS, beyond the opportunity to have a further vacutainer drawn for Monitor My Health when I have my annual NHS blood test, I do wish that some of these arrogant f*ckwits could travel in my mocassins, just for a mile, then tell me it's perfectly fine to be told your TSH is in range when it's at the top of the freaking range and said Dr Toft has written a book for sale in every pharmacy claiming that once medicated, a hypo's TSH should be around 1.
Obsdian tells us: It got marked on my medical files as a negative that I mentioned getting advice from here. There are posters here would would be dismayed to hear this, including DJR1 our data access champion.
tattybogle states: I would never mention to a doctor that I have been anywhere near a thyroid patient forum, regardless of who runs it. All rolled eyes and 'Stay away from Dr Google,' innit tho? Where is the joined-up thinking? Dr Google led me to HU TUK's forum in the first place!
Meno56 wants a celeb, like Davina McCall to take up our cause. Menopause = every woman = ££££ Thyroid issues = many fewer women and a handful of men = considerably less £. Not denigrating Ms McCall,; doubtless, her agent had something to say about her choice of championing menopausal or other hypothyroid women. It's always the economy.
RedApple mentions Dr Renee Hoenderkamp. Whilst this person seems to have carved out a career as a media commentator, it's telling that her controversial video has been taken down. I remember Dr Hoenderkamp kicking off about T3 and feeling so hopeful...
Nothing happened. Nothing changed.
In 2019, the NICE (what deluded idiot came up with that acronym) guidance stated: The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. It's always the economy.
The CMA investigation reported: It found that last year, the NHS spent more than £34 million on the drug, an increase from around £600,000 in 2006. The amount it paid per pack rose from around £4.46 before it was de-branded in 2007 to £258.19 by July 2017, an increase of almost 6,000%, while production costs remained broadly stable.
That's where we're at. It's shocking and any government, whatever its colour, would have made similar 'guidance' available. I recall Dr Toft telling a TV reporter that liothyronine costs around 1p a tablet to produce.
So there we have it. It's always the economy. And governments can't do the math of the increased economic activity which would result, if the 20% of us who can't get along with the freaking wonder drug, T4, were afforded the opportunity to make like Dr Hoenderkamp and take a little T3.
I'm 65 and increasingly, I find that the world has gone mad. My solitary comfort is that I don't live in America. Yes, they have extortionately priced desiccated thyroid extract, but they also live with the possibility of being too poor to afford even insulin.
I want to leave a legacy for a thyroid champion. I can't find one. I'm gutted.
The Americans who can afford health care are extremely pro healthcare. Overly so I would say. When I lived in Saudi Arabia I was always amazed at the queues of people at the pharmacies. They were always Americans. The Brits seem to be much less so inclined. Probably something to do with our culture of so-called free health care at point of use (I know that’s not the actual quote). However certainly in Endocrinolgy we experience a very watered down, ill thought out strategy around ‘health’.
Maybe Brits with healthcare needs are not so gung ho about travel. I don’t know but it was very noticeable. Americans leaving pharmacies with huge bags of drugs/prescrptions under their arms. Maybe it’s a cultural thing. If you only have two weeks holiday in a year, you need meds to just keep you going.
A legacy for a thyroid champion? That sounds a great idea and I am not surprised you can’t find one. You certainly have me thinking now. Who would be willing, able and likely ‘qualified’ to take up that challenge? AND why can’t we find one/think of one?
it’s the short term economy tho - it’s also a false economy as it costs far more penny pinching in the short term which leads to storing up huge costs in the long term. This should be a key message to take forward if it is purely economically driven. It should be demonstrated that this model is flawed and is not saving money at all if you broaden the perspective. We need a number cruncher!
arTistapple, I wish I had the time, or more honestly - the fortitude. I certainly wouldn't call it the Rapunzel movement, tho. Needs to be something about GPs championing thyroidies; bit of ego massaging never does any harm, what what?
It occurs to me that when we are young we are too busy often with child rearing and/or full time jobs. All energy expenditure is tied up. When older, age also takes its toll. If we have been hypo for many years; either without diagnosis or poor treatment, at neither juncture are we good candidates for sorting something like this out.
I don’t know about the Rapunzel name. You chose it as your tag for probably a very good reason. According to the story of Rapunzel it may be very apt. It depends on one’s viewpoint what ‘one’ gets out of the story! It seems to me it’s about ‘Rites of Passage’ which as far as I can tell is exactly what we are being denied by keeping our health below par.
Anyway I congratulate you on your thinking. It’s comprehensive and makes utter sense. You are far from being a ‘lone’ voice.
Tongue in cheek when I chose it. I'd lost most of my hair to my dodgy thyroid. I could throw down my hair, tho. Just that if my Prince had tried to climb up it, it would have been pulled off. Amazing tho wig tape is...
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..... very supportive of TUK 
Thousands of ill patients could be AT RISK after thyroid hormone drug price rockets, Daily Express. 
