Working with the enemy?

By their own admission, Thyroid UK's policy is to work with the pharmaceutical industry. Presumably they mean, to bring about change. Love to know how that will work. On the one hand you have a commercial operation responsible to its shareholders, and on the other hand you have a charity whose stated aim is to support sufferers of thyroid disease. How is that circle gonna be squared?

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  • Seems a very sensible policy to me; to engage with them and try to convince them that a T4 mono therapy doesn't work for everyone.

    What policy would you suggest?

  • I would suggest fighting them tooth and nail. Dialogue is a delaying tactic that will achieve little and muddy the waters viz. the real science behind thyroid conditions being acknowledged. Did the Poll Tax get reversed through working with the 'opposition'? And as far as the nonsense Concordia spout about the cost of manufacturing T3 is concerned, who believes that? There are two opposing forces at work here. Diplomacy will only benefit the shareholders. (And I am not a socialist).

  • Are you sure your not a socialist Steviecat ?

  • Not the last time I looked :-)

  • steviecat it's the BTA who need to be challenged, they're responsible for the guidelines and for leaving so many folk ill. They should be the first line of attack.

  • Then they will be, Cinnamon :-)

  • Oh, and since your previous posts detail a somewhat desperate search for suppliers of T3, would it not be a darn sight easier if you could be prescribed it without your doctor balking at the cost/science?

  • Calm down sweetie. Let's have some specific alternatives. Civil unrest, chaining yourself to a big pharma factory?

  • Well, it's an idea... But no. A reasoned campaign that combines action with the available science. But a no-no would be any kind of collusion with the pharmaceutical industry. And, I might add, calm is not gonna get a result. We've been calm for too long. You can be calm if you like, but I'm desiring change. A change in the appalling treatment that the medical profession has meted out to sufferers and the huge profits the pharmaceutical industry is making off the backs of sick people.

  • Explain how you will fight the medical profession?

    Remember the medical profession through the NHS can put pressure on the pharmaceutical industry.

  • And the NHS has challenged Concordia over its pricing of T3? Β£258 a month in the UK; 5 euros a month in France. Even now, the ITT campaign is gearing up for a fight to end the iniquitous treatment of thyroid disease. Join, if you have any feeling for your fellow sufferers.

  • Nice one Steviecat Ive just messaged Bluebug saying to get in contact and I will tell him/her how. Until its won - not finishing in September thats for sure

  • I read the Daily Mail article on T3 this week, and Concordia stated that they haven't been approached by the NHS re costs. How is this possible? What a huge shake up the NHS needs!

  • I understand what you are saying and your frustration but you need to be specific about an alternative policy. Perhaps a (peaceful) demonstration, or a petition signed by 10s of thousands of sufferers.

  • The petition will be filed in the bin.

  • Petitions are next to useless, I agree. But the ITT campaign is not focussing on petitions.

  • Petitions Big petitions make changes. A petition with over 100,000 signatures gets debated in parliament. Its a start to a loud voice, we have to stand up and make some proper NOISE about this. Moaning & pontificating day in day out on forums aint going to change anything. Stand up and be counted, stand up for what you believe in, stand up determined to make a change. Because if we dont things will never change & everyone on here can keep moaning on to their hearts content. Want Change ? then lets Do ITT !

  • Now that's what I call passion - the passion that achieves results! :-) C'mon, sign up for the journey.

  • ITT campaign is the best chance we have.

  • Can you explain what it is?

  • Improve Thyroid Treatment is a new campaign - still in its infancy - that will challenge accepted orthodoxy and present evidence-based arguments to decision makers, many of whom are in thrall to Big Pharma. Paranoia, you might suggest? No. There is too much empirical evidence to deny the truth of that statement.

  • Can you give specific examples of how you are going to "... challenge accepted orthodoxy and present evidence-based arguments to decision makers"?

  • If you are interested in the campaign aims. If you desire change and are not merely pressing me for reasons I can only wonder at; contact Kitti who is heading up our efforts.

    @campaign_itt

  • I am interested but so far you haven't given one concrete example of what you're going to do. All I can tell is that it's not about petitions. And I don't understand why you can't give examples of what your going to do on the forum?

  • Campaign launch is, I believe, this coming Monday. Contact Kitti for details. If you're interested enough you will. If not, you'll have to wait for public launch.

    ittcampaign@hotmail.com

    @campaign_itt

  • Get on board & find out πŸ˜‹

  • Yep thats one of our plans ITTcampaign Improve Thyroid Treatment. Message me if you want to get involved

    @campaign_itt

  • Once upon a time we were prescribed Natural Dessicated Thyroid Hormones according to our clinical symptoms - up until the 60's I believe when Big Pharma pushed their 'perfect' replacement ie levothyroxine along with blood tests which should 'prove' hypothyroidism rather than the 'hands on' doctors who knew all clinical symptoms. Not forgetting the 'extra prescriptions' which are given for 'insomnia, pain relief, antidepressants, etc etc so I wonder what the total yearly cost is to the NHS, not including people unable to work due to disabling symptoms.

    Our doctors had the ability to prescribe NDT or levothyroxine (not so much T3 as it is in the NDT) slowly, slowly the wheel turned. BTA stopped the prescribing of NDT by False Statements:-

    thyroidscience.com/Criticis...

    The next the aim was towards T3 and cost was an excellent excuse to banish it too, despite Research showing that many benefited from it added to T4.

    Doctors who treated patients in the 'old-fashioned' method were persecuted and brought before the GMC and many couldn't take the strain and resigned or lost their licences. They couldn't use their initiatives. They had to toe the line.

    I am a patient who now sources their own T3 when company suddenly had none in stock and panic amongst patients arose and GP was reluctant to prescribe 'other' T3s which weren't licenced but could be prescribed on a 'named-patient' basis. The cost then wasn't as prohibitive as at present.

    The Association appears to ignore sick and ailing patients who lose their livelihoods, are too ill to leave home, who are told they eat too much and weight is the cause of their problems, whilst ignoring the fact weight gain is a clinical symptoms and patient needs optimum hormones which make them feel well and to live a pain-free life and to raise their metabolism.

    As we know our 'healthy lifestyle' is dependent on optimal doses of thyroid hormones which 'suit the patients' and not what suit the Associations. It isn't suffering and the treatment to patients at times have been abominable. Suicide has happened and/or threatened as life has become too awful but rather than checking FT4 and FT3 they'll be prescribed anti-d's instead. Some people have been sectioned.

    We also know many doctors believe as soon as TSH is 'in range - (even top) they stop increasing and symptoms do not resolve.

    We have also read/listened to top Endos stating that the TSH is the ONLY way to diagnose hypo and levothyroxine the perfect choice and Dr Skinner was fearless enough to say patients were put in a parlous situation due to 'evidence based medicine ' for that he was pursued and died through a stroke and I wonder how many of the Endos, if appearing before the GMC will have thousands of testimonials presented from patients whose lives Dr S '''saved'.

    Mikegov cinnamon_girl bluebug steviecat Kitti1

    The cost of T3 was a 'perfect' excuse for withdrawal with no thought given to patients and it is not a 'fashionable' request for patients to make but a necessity for life.

    Many doctors throughout the world lost their licence for doing as they were taught as students and Dr Derry of Canada is the latest as far as I know. If you search on the forum for Dr Skinner you will see he was lifeline for many. One member who saw Dr S was told by an Endo 'we've got him now'.

  • Wonderful post, Shaws - but terrible also.

  • How patronising!

  • Steviecat,

    You make it sound like something TUK should be ashamed of. Why? Without the pharma industry there woud be no thyroid meds or any other meds come to think of it.

  • Because it hasn't and it won't make any difference.

  • Steviecat,

    It's not the pharma industry's fault that a greedy venture capitalist spotted a loophole in the generic medicines pricing mechanism and bought up some generic medicines to exploit it. Government and NHS need to plug the loophole to prevent it happening. Banning prescribing of the generics is not the answer.

  • Indeed it isn't. Only fools and vested interests would do that.

  • And another thing: we are all hostages to fortune - the industry's fortunes. If you want an example... Why are they not working on antibiotics that will deal with the super-bugs we are faced with in the near future? I know the answer to this; it's because the required research is too darned expensive! Forget about thyroid meds, all the experts say it will be bacteria that sounds the death knell of our race. Be that as it may, we can only do our best in the here and now, and that means inspiring change. One way or another.

  • I believe they are - I had a link to a study just the other day, but I'm afraid I've now deleted it.

  • And the pharma industry has led the world in what we have now: cod-thyroid science. It is well known that they financially rewarded doctors in the 1960's to stop prescribing NDT and dole out Levothyroxine. These are the people we are supposed to work with??

  • Steviecat,

    So would you shut down the pharm industry? How will that improve antibiotics, dementia drugs, cancer drugs etc?

  • How has it come to this? Of course I wouldn't. My question is at the top of this post. It really comes down to that old adage: keep your friends close and your enemies closer. It is to the industry's advantage to keep a close eye on possible dissenters. I would like to see Pharma wrong-footed where matters thyroid are concerned. They have lied to and manipulated sufferers and the medical profession for too long. Oh, and as far as antibiotics are concerned, sadly, I think there is very little chance of further research. The need for immediate profit is just too pressing to make it worthwhile.

  • Why cant we all join together to fight our cause & support each others efforts??? 😞

  • That would be wonderful indeed, Eve. You might like to look at Kitti's longer post above :-)

  • Disagree where/ who produced Natural Dessicated Thyroxine sourced from pigs thyroid glands and which was used successfully for 130 years by treating symptoms alone - no need for blood test monitoring!!! Good old fashioned Doctoring at its best!!!

  • EveP,

    NDT wasn't available 130 years ago. Patients were treated with raw sheep thyroid mostly prior to NDT.

  • This was the first case in Northern Ireland treated by sheep thyroid - 1892 - 125 years ago:

    healthunlocked.com/thyroidu...

  • Poor memory Clutter 😊 I know animal thyroid glands were the only source of hope or treatment 😊

  • EveP,

    Can you imagine being hypothyroid and B12 deficient and having to eat raw sheep's thyroid and raw liver daily to stay alive :o

  • Yuck - but then when you feel as lousy as it can get you will do or try anything πŸ€”πŸ¦‹

  • EveP,

    I'm really not sure I could or would.

  • Working with the pharmaceutical industry could include encouraging some of the EU manufacturers to apply for licenses here to provide much needed competition

  • Okay... but you'd have to be working with anyone other than Concordia for that to even have the slightest chance of succeeding.

  • New company has been given product licence for liothyronine, check out mhra.gov.uk/home/groups/par...

  • Your link does not work:. "This page cannot be found".

  • Try mhra.gov.uk/home/groups/par... this works, just tested it ;-)

  • Thanks, I've just read that good news but doctors have been told not to prescribe T3 - will they now?

  • Shelley1954 & Clutter How long do these things take though ? I fear we don't have time on our side

  • Link doesn't work....

  • Yes it does Camomile1 I've just used it.

  • Sadly, with all the wrong fillers: lactose monohydrate, partially pregelatinized maize starch, spray dried acacia, sodium chloride and magnesium stearate

  • Not likely with Brexit looming! Talking about being duped, the British public have been lied to & manipulated to believe we'd be better off outside the EU what a farce. As for the Pharma industry, if it weren't for their marvellous research & development, I wouldn't be alive today. Let's stop knocking the industry & put pressure on NICE & the CCGs who block treatments that could benefit us all not just Thyroid sufferers.

  • That is exactly what we hope to do, Camomile :-)

  • For information - from the link provided by Shelley1954 :

    Other ingredients consist of the pharmaceutical excipients, namely lactose monohydrate, partially pregelatinized maize starch, spray dried acacia, sodium chloride and magnesium stearate.

  • Yuck!! Why do they have to use all these different fillers??? Problems with TEVA New Formulation I believe are down to the crappy fillers used!!!! πŸ˜”

  • But do they take notice when people complain? Do they heck!

  • OK - so what would you choose to put into the tablets?

  • Ive absolutely no idea Helvella!! Im not a pharmacologist, but surely its something that could be worked on & improved πŸ˜‹

  • We might have issues with, for example, lactose monohydrate for some people.

    The simple fact that these ingredients have been used for many decades suggests that they are reasonably suited to the manufacture of tablets.

    Trouble is, pretty much whatever is used would be unacceptable to some.

    If they go for very similar ingredients, people are likely to notice little difference. If they go for very different ingredients, they might find a different group of people have problems.

    Yes - it would be great if there were some universally acceptable ingredients. Yes - it would be great if everyone could have a choice so that they can avoid the ingredients that cause them problems.

  • I am intolerant to corn-maize starch and aspartame yet thee are often used in drugs as binders and fillers. However not used in all drugs so.....

  • 'What everybody knows is true turns out to be what some people used to think.' - Ursula K Le Guin.

  • Clutter Im afraid I struggle with the concept of affiliation with any part of the pharmaceutical industry. Yes we have a lot to thank them for, but there is also a lot to berate against them.

    The continued funding of such heinous work from the unfortunately influential Prof Weetman. Why does he continue his stance on hypothyroid testing & treatment, because he is paid to ?

    medscape.com/viewarticle/52...

    Also the recently revealed practice of Big Pharma 'hood-winking' medical journals

    theguardian.com/society/200...

    Quote -

    "Hundreds of articles in medical journals claiming to be written by academics or doctors have been penned by ghostwriters in the pay of drug companies, an Observer inquiry reveals."

    This practise is beyond despicable, obviously motivated by profit, but no doubt risking the health of millions of people through the manipulation of research / Fake News !

  • Kitti1,

    It's the antipathy towards pharma industry with respect to thyroid I am trying to understand. Concordia is a venture capital group and are exploiting the loophole on pricing generic drugs. It will be interesting to see how Morningside Health Liothyronine is priced.

    Concordia's price gouging has caused problems with the cessation of prescribing on grounds of cost but for many more people it is the BTA stance "Levothyroxine is the preferred therapy" which is the major obstacle to getting Liothyronine prescribed. For others it is impossible to even get a diagnosis when some GPs and endos insist on waiting until TSH is 10.

  • I know Clutter and its with all that I take serious issue with, as we all do. As someone who has been no doubt under medicated for 30 years. 30 years of anti'ds & therapy, even ECT. 30 years of not having a brain, but now all of a sudden, after 2 months on T3, I seem to have a brain - who knew ! A life robbed.

    The injustice of our treatment genuinely brings me to tears when I think of the full ramifications of the woefully lacking guidelines. Not just for myself but for all those that have gone before and those set to yet be failed by such a misguided system. Something i just cant walk away from. I may be foolishly misguided in my ambitions, and the ambitions of the ITT campaign, but I have no choice.

  • I am so glad T3 has worked miracles for you. It's a pity those at the top are ignorant about the only Active thyroid hormone.

  • Clutter. Kitti's post that begins:

    'Im afraid I struggle with the concept of affiliation with any part of the pharmaceutical industry. Yes we have a lot to thank them for, but there is also a lot to berate against them'.

    It certainly helps me to understand the antipathy. But most of what has been written here is off-topic. Yes, it adds to our well-spring of knowledge and, yes, it may help some to see that profit has trumped efficacy. But it is not what I asked, nor is it my intention to batter Pharma's ankles with a feather.

    Levothyroxine has been quite successful in treating many sufferers for fifty years. We know it is not the only answer, but Pharma has bullied and incentivised the medical profession into falsely believing that it is. For Heaven's sake, we see it here every day.

    As Kitti has said - and here I paraphrase: There has to come a time when the talking takes a back seat and firm, coordinated action begins.

    How much has been changed by 'working with the industry'? Nothing. Nada.

  • Steviecat,

    So what do you suggest?

  • Blimey. I haven't been very clear in my last few answers... The suggestion is that as many as possible join the ITT campaign. Kitti is heading it up. PM or message: @campaign_itt

    However, I'm pretty sure we won't be working with the industry. That time has passed.

  • It is 'assumed' levo works well but many of those may never have known good health for years but 'got on with it'. We know how many doctors refuse to increase due to results being 'within the range'.

    Dr Lowe would never prescribe levothyroxine only NDT and T3 for resistant patients. The fact that he was also a scientist he could delve into everything in more detail.

    You may be interested in the following from Dr L:-

    web.archive.org/web/2010103...

  • Well, since we all need thyroid hormones, you can't exactly ignore the manufacturers completely. What I want is for them to make enough NDT and T3 alongside T4, and get the this country to allow more legit suppliers in with better prices (than the Concordia rip-off merchants).

  • When it comes down to it; you could say that that is our campaign's principal aim, Angel.

    @campaign_itt

  • Yep, Improve Thyroid Treatment.... Campaign ITT

    So,

    better testing, not just TSH, for both diagnosis and dosage

    better treatment which means CHOICE to include T3 and NDT, and so patient individualized treatment

    Isn't that what we are all working towards, hopefully in a united effort πŸ€—πŸ˜Š.

  • Yes definitely better testing with revised ranges & Doctors listening more to their patients individual symptoms & struggles & treating appropriately instead of relying solely on a bunch of Lab figures!!! Doctors are losing their valuable skills!!!! Or are being bribed/bullied one way or another to stop listening, turn a blind eye or shrug their shoulders!!! Even worse are those that blame mental health issues and make patients feel pathetic/inadequate/hypochondriacal & more!!!!! SO BLOODY ANGRY!!!!

  • Well said, Eve - please join the itt campaign - if you haven't already :-)

    @campaign_itt

    ittcampaign@hotmail.com

  • I have joined but unbelievably I have just lost my Dad on 5.7.17 and my Step Dad on 6.7.17!! I will get back to grips with the campaign ASAP as I whole heartedly support it and cannot bear to think of the thousands of people who continue to suffer while GREEDY INDIVIDUALS MAKE A KILLING!!!!

  • Oh, Eve. I am sorry sorry. A double blow. Sending you healing vibes and all my sympathies. x

  • Thank you Stevie cat 😊 XX

  • Sorry for your losses Eve XxπŸ’

  • I would also like anyone who requests it to be allowed to experiment for themselves which medication suits them best - be it T4 or T3 or NDT only or combo therapy - as we all know one size definitely does not fit all!!!

  • Me, too, Eve :-)

  • The motto for medical professionals is "FIRST DO NO HARM" I wonder how many need to be reminded of this!!!!!

  • I know what you're saying...a bit like the unions being in bed with the management...maybe they could lobby the chemists to reduce prices..

  • Big Pharma does rip off as has been proved by a certain pharmaceutical Company being heavily fined by hiking up the cost of a certain anti epileptic drug.

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