Thinking outside the box

UrsaP Kitten1978 juniperex marigold22

This is just an idea. But after reading numerous reports involving the influence big pharma have over gps and more significantly for us, over CCG's. Perhaps we are lobbying the wrong people. Should we perhaps start to lobby Concordia to promote liothyronine to CCGs and gps on our behalf ?

One of the reports I read involved the practice of changing meds from branded to generic so they could bump the price up. A drug for Parkinson's - Symmetrel, is reported as going from £5 to £130 in the last 18 months.

A drug used for epilepsy branded as Epanutin was unbranded in 2013, phentyoin sodium. The cost to the NHS has shot up from £2.3 million in 2013 to £50 million.

This drug is not on the governments list to be removed due to cost. Because it is seen as essential. As we know t3 is.

An organisation called No Free Lunch, founded by Dr Bob Goodman in the US and by Dr Spence in the UK aims to 'challenge the culture of big Pharma and bring awareness of of the medication we use today'. Dr Margaret McCarthy ( gp and medical journalist ) agrees 'many pharma companies do not publish all their research and as a result the evidence can be skewed'. But these people unfortunately are in the minority.

If we lobby Concordia with all the positive evidence proving t3 works well for many people. Including evidence that it protects the heart. Perhaps we can persuade them to effectively do the work on our behalf ? They see the profits that can be made and are in a position to convince the medical profession of its benefits. ? ? ?

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  • I believe it is the Endocrinologists who require a change of mind re T3 and not Concordia. UK BTA I believe follow the ATA and this is from their latest guidelines:

    Conclusions: We concluded that levothyroxine should remain the standard of care for treating hypothyroidism. We found no consistently strong evidence for the superiority of alternative preparations (e.g., levothyroxine–liothyronine combination therapy, or thyroid extract therapy, or others) over monotherapy with levothyroxine, in improving health outcomes. Some examples of future research needs include the development of superior biomarkers of euthyroidism to supplement thyrotropin measurements, mechanistic research on serum triiodothyronine levels (including effects of age and disease status, relationship with tissue concentrations, as well as potential therapeutic targeting), and long-term outcome clinical trials testing combination therapy or thyroid extracts (including subgroup effects). Additional research is also needed to develop thyroid hormone analogs with a favorable benefit to risk profile.

    online.liebertpub.com/doi/f...

    Their conclusion doesn't fit with our Adviser and his Team that some need T3/T4.

  • They do not find consistently strong evidence because they seem to ignore the evidence there is (NB the ATA is very US-research centred and is largely ignorant of or dismissive of, work done elsewhere). The fallback for them is: if we haven't done it, then we shall admit nothing until we have, and then we'll claim credit for finding out - even if others have done it years before. Sorry to show a trace of bitterness, but I've encountered this personally time and again as have others. If the BTA tamely follows then the same lacunae will also follow.

  • Diogenes,

    Sadly that parochial bias isn't just one way. My endo dismissed some research we were discussing as "too American".

  • Because Americans are ....a different species altogether???

  • Kitten1978,

    I was too taken aback to ask :-D

  • Kitten1978 Clutter Just shows we have to be prepared for all sorts of ridiculous comments -

    But maybe we need to start doing something here as well - maybe when faced with these maddening comments that throw us and leave us speechless, we should be writing afterwards - making it more official, and less able to be ignored, and question them further. We need to stop them thinking they can talk to us like this and get away with it. Difficult I know when we are feeling ill and low...but might be worth that effort. Or get a partner/ friend to follow it up asking for explanations and evidence ...they won't like being bothered or questions but might make them stop and think before making these comments.

  • UrsaP,

    That's a big ask of people who may be feeling very unwell and vulnerable. I was able to challenge endo with respect to my own care but I didn't feel strong enough to take issue with his attitude to American research.

  • No, I do appreciate that Clutter I have been there for too many years myself. Hence, suggestion someone close might be asked to do it, on behalf of those unable.

    It has seemed to me that despite the tremendous efforts of various groups such as TUK the rotten attitudes to thyroid patients is still all too evident.

    This attitude is stamping on us. Stopping us being heard. Those of us, in any way able, need to start doing something about it and not relying on just a few others to fight our cause.

    Where and when we can, we have to 'fight' back. In the nicest possible way - but accepting this treatment is condoning it and encouraging it.

  • You are right but if I start responding in writing to ALL nonsense I've heard from doctors I would have no time for anything else. I guess I chose my battles...

  • Don't worry Clutter . My current GP once told me that Japanese B12 norms were nor relevant to Europeans because the Japanese were so different. I was also too surprised to respond. I'm better at talking back when I'm in my militant mode. I actually like my current GP and I have always thought she was an intelligent person. I certainly didn't expect this sort of b*****it from her!

  • Kitten1978,

    It's rather depressing that supposedly well educated and intelligent people talk such BS :(

  • Clutter Do we not end up 'following' America? You should have told him that by considering it he would have been ahead of his time then!

    I just want to bang my head on a wall when I hear how narrow minded these so called intelligent people can be - -how b..... blinkered can they get? And how in hell did the human race develop and survive all this time! How did medicine ever get off the ground!

    Sorry...rant over...for now

  • I agree with your 'rant' ! Get it off your chest girl 👍 And with this I am being humerous ( ? ) and sarcastic. After reading just a few medical research papers and reports in journals ect. And being aware of all the hundreds possibly thousands of different conditions these medics need to know about. Perhaps its just because their brains are Full, no more room up there for any other stuff. Like questioning things. I may have just stumbled upon something ? They are all robots !

  • At least they have accepted that the Earth is round and circulating around the sun. THAT'S A PROGRESS ;)

  • Oh Kitten1978 there is light at the end of the tunnel then!!! How long ago was that....

  • delicious21 I think this is an underlying problem. They are GP's not specialists. Many years ago when I was first sent to a specialist because I had a goitre. My GP at the time, just said 'there was something there he did not know what it was so would send me someone who would' Why can't they do that today!?

    Apart from some of the 'specialist's' are equally lacking in knowledge! And compassion in a lot of cases too!

  • delicious21 They are largely up their own backsides! Pompous twits! I recall the specialist I saw at the age of 19 or so, many years ago - waving his hand dismissing me, 'lack of iodine turning from a girl into a woman'. And the sad thing is, what has changed! in 35 years...nothing much. But maybe now is the right time....

  • I think that is the issue. There is no need to prove T3 or combo is better than T4 only. That's where it fails. And that's how they can keep justifying T4 only as a superior.

    It's looked at from statistic point of view if 80% do well then everyone must do well.

    Right questions has to be asked. Like any other illness we can name has alternative treatments. Same insulin doesn't fit all diabetics, everyone can't use paracetamol, even rare diseases like cluster headache has different type of treatments, not all suffering from RA benefit from one type of treatment, some are very experimental and have far worse long term side effects that T3.

    Why hypothyroidism is the handicapped cousin that needs be to kept in dark closet? Why hypothyroidism is bullied?

    It's not about finding a superior treatment to levo only. It's about accepting that other available medication are as effective for those who do not recover on levo only. It's not only common sense but it's about patients rights to receive effective treatment.

    I know you Shaw know all this but I responded to quote you posted.

  • One problem is that all the people who are self medicating with T3 are not on anyones radar, therefore there are no stats showing how well people are actually doing on it.

  • How true!

  • I'm not exactly sure why people are so scared to tell their docs that they are self-medicating. Has anyone been kicked out of their GP practice or discharged from endo after they disclosed they self-medicate???

    Are scared of our doctors???

  • I was told if I self medicate with t3 then they can't provide medical oversight. I wonder how many others have heard something similar?

    As I'm on combo I pointed out that they have to do the blood tests because I'm prescribed T4.

    Very wrong and feels like a threat so I can understand people's hesitancy, but we have numbers on our side and maybe we just need to run a campaign to set a date and come out of the medical closet together 😊

  • Did they ever ask the patients who take T3 and whose lives were revolutionised by it? Or did they just stick their superior heads up their own backsides and 'pronounce' from up on high... When are patients ever going to get a say? 😡

  • They definitely stick their superior heads up their own backsides and 'pronounce' from up on high... Why we, the patients, know better what medication works for us.

  • Oh - they have passed all their examps - we haven't but in the end we could definitely identify people who are hypo. Sitting on a bus I often see, mainly women, who I think are underactive but not on an optimum dose as they are 'puffy' in their skin, appearance.

  • Concordia would have to put their prices down, before that would work. :(

  • In a way that was part my point greygoose . That there are many other drugs that have had their price escalated disproportionately. And because these are seen as effective they are not under threat. I realise that it is not just research from the drug companies that plays a part in this. And perhaps why I am barking up the wrong tree as shaws explains.

    Following last weeks bill through Parliament, which is set to challenge big pharma companies on the pricing of numerous drugs. Then in a sense the price is immaterial. It is proving its effectiveness that is key to turning this around.

    As UrsaP says, surely the drug companies that developed it initially have evidence of its effectiveness. And subsequently any company that has bought the rights since. I wish I could remember where I read it, memory of a 🐠, but I recently read t3 is sometime used in the treatment for depression. What evidence is there to support this ? Surely its linked to some peoples problems in metabolising t3 in the body ? ( Is metabolising the right word ? You know what I mean ) . As we all know the debilitating effect lack of thyroxine has on our brain and on mood. I'm a key example today since my clueless gp reduced my dose recently, when i already felt under medicated. I can hardly get my words out today, thinking is very slow and foggy 😞

  • Hi Kitty1 have you been on the National Academy of Hypothyroidism website? There are a lot of studies and research that has been logged on there. It also discusses the transport of T3. Makes for very interesting reading.

    Suzelle

  • Thanks very much for that. No I haven't, I take a look

  • nahypothyroidism.org/thyroi...

    Here's the link if you want to have a mooch.

  • Have the Endocrinologists acknowledged these studies/research? It cerainly doesn't appear as if they have. They were looking for an excuse, that's clear. The price-rise solved that problem i.e. we get none prescribed despite the guidelines stating that if we had 'clinical need' we'd still be prescribed. I bet you thousands of GPs have 'at a stroke' stopped T3.

  • Not willingly, they wouldn't!

    But, if the NHS bans T3, they're going to lose one of their money-makers, aren't they. And, I've been wondering what effect that will have on them. Could it possible make them rethink their prices? I don't know.

  • Kitti1 You may have a good point here, as there is more than one aspect to this.

    There is the price of T3 pushing it out of the market, then there is the need/benefit of T3 and then the need for better testing to diagnose the conditions.

    What we need to obtain is documented evidence that T3 is beneficial. As Dr's refuse to acknowledge the benefit in us, largely by refusing to issue it, it is going to be hard to prove from that direction, but Concordia must have information that could be used?

    T3 is a licensed medication so must be documents for it's benefits somewhere? Good thinking girl!

    I need to go get my glasses sorted - just dropped apart...perched on nose as I type - lost my other pair - Grrrhhh! But will come back to this.

  • How about checking the American T3 brand cytomel/cynomel (???). It has been on the market for years - J.F. Kennedy was taking it...

  • Isn't the president of the ATA now Antonio Bianco, and wasn't there something recently to say that he is now pro T3? Or have I misunderstood something? (Easily done lately!!)

  • Yes, he is. It's online:

    Peterson, S.J. McAninch, E.A., Bianco, A.C. (2016). Is a Normal TSH Synonymous With “Euthyroidism” in Levothyroxine Monotherapy? Journal of Clinical Endocrinology and Metabolism. 101 (12): 4964-4973. DOI: doi.org/10.1210/jc.2016-2660

  • The article is excellent. But why oh why is evidence like this not taken into consideration. Oh too tired to get my words out. Its exasperating. 😞

  • "many pharma companies do not publish all their research and as a result the evidence can be skewed"

    That is known issue and should push them to make a law that forces medical companies to publish all research, unfavorable too as it affects the license procedure.

    Even food companies are forbid to sell products by saying it improves health unless they can prove it. Why medical companies get away from it? That is the question.

  • There is actually a global petition pushing for such a law. Go to AllTrials.net I signed it recently. I completely agree with you.

  • Great!!!! Thanks!

  • Hi Kitti1, I am afraid its not the gps who make the decisions its these guys

    nice.org.uk/about

    Who set the guidelines for Gp's to work too.

    cks.nice.org.uk/hypothyroid...

    They are the ones that need to be influenced Gp appraisal and revalidation has been introduced i think more to ensure Gp's are towing the line than anything else. The government I'm sure receives many back handers from big pharma to promote their drugs and there is far more money to be made from us sick than well. It's a sad twisted world we live in. I believe self medicating is the only way to get out of a corrupt system.

  • That is more than brilliant good for you ! I'd love to say I'll have a go myself, after reading the guidelines there is no reason why the labs should dictate whether t3 is tested. I appreciate it is only endos that can prescribe it. But surely testing it would determine whether a refetal to an endo is necessary.

    But to avoid this an try and keep us in our place the gp just tows the line and parrots 'the labs won't test it'. Here's some anti-D's, your tiredness is due to your weight, try and loose some weight. I explain how healthy I eat. How much walking I do with the dogs, but this just falls on deaf ears. I'm sure he's thinking ' your obviously not trying hard enough' !

    Regards me trying, he's recently erroneously reduced my dose, another tactic to stop us fighting back ? Now I'm just sounding paranoid lol ! 😂

  • Hi delicious, I feel your frustration I felt it myself with the gps and the endo that's when I made the decision to ditch them all and self medicate I havent looked near a gp since and I no longer require them to validate my health and I work in a gp surgery (dont shoot me lol). My ndt isn't available on prescription and I didnt like the idea if t3 if it is another synthetic drug (I may be wrong) and I'm aware it works for many. The whole nhs system is wrong just wrong but I believe its not much better in usa where they pay for their treatment. Im in NIreland and our hosp has also stopped anything other than tsh on thyroid tests this was not at the gps request and we do not have ccg's here. It leaves me feeing quite militant lol but then again I have regained my health after 25yrs , 25yrs of frustrating misery. Its hard to fight when you feel so ill but fight for our health we must. I tell everyone who asks how I changed things I have aready convinced 1 gp and 1 nurse of the lie that is t4. Small steps but its only been 6mths. I've also told patients about this forum. I can see the press now 'Practice manager looses her job for daring to tell the truth'

  • That's fantastic mtcorr Shout it from the roof tops, just wear a mask when doing it 😀👍

  • Hi delicious, its knowing how ill I was to feeling how i feel today that drives me i want to shout it out to everyone but for now I tell the patient's I know well and I can trust. The fact is though in 6mths I look so different so people cant help asking what I have done so I tell them I've changed my thyroid meds to ndt. I'm not sure how the thyroid testing got changed if it was a slow drip or an actual letter so I will check tomorrow and see if I can find anything.

    Keep fighting, I'm aware that I am seriously lucky but then again after 25yrs I think I deserved some good health I sincerely wish the same for you and everyone on here as we all deserve it. The way we are treated is criminal.

  • Well done you!!!!!!!

  • mtcorr , that would be another good survey - how long we all been suffering with mistreatment already!

  • Complaints departments like PALS are there to fob you off. If I'm sufficiently p****d off to write a complain letter I direct it to the Chief Exec. I have done it with several organisations although not as a patient ...yet.

  • I emailed NICE. They confirmed there are NO clinical guidelines on primary hypothyroidism so no national policy. They have a clinical knowledge database of other organisations evidence but this has not been appraised in the way the NICE Guidance is. So currently NHS England does not have an official position on t3

  • The Clinical Knowledge Summaries (CKS) were inherited by NICE and have become their responsibility. But they are not full NICE guidelines.

    For reasons that are not identified, NICE have not been asked to produce a full guideline for hypothyroidism. We could speculate that those involved in deciding what guidelines they should produce are concerned that they might open a can of worms - with around 1.6 million diagnosed hypothyroid people in the UK.

  • Kitti1,

    Concordia are the problem not the solution. It is Concordia raising the price of T3 and price gouging the NHS which has led to health authorities deeming it too expensive to prescribe.

  • I appreciate your reply and your point Clutter . Then why has phentyoin sodium for epilepsy not been up for removal ? The cost increase to the NHS is astronomical. Surely it is because as mtcorr states its NICE and CCG that need convincing.

    Thanks for the reply mtcorr. I've just had a quick look at the second link and it makes for very interesting reading. My original post was based on reports of effective corruption between gps / endos CCG and big pharma. I included gps / endos as I am aware they are involved in the decision making process of CCG as they are consulted during reviews ect. I agree with what you say. Which again brings us back to my original point. Who really has the power ? If it is as we suspect, then surely we are better lobbying Concordia ?

    Shelley1954 I'm guessing they are fully aware of the fact that people are self medicating. Whether they realise the scale of it who knows. Then perhaps being inundated with emails from people who self medicate would make them realise the possible size of the market.

    I'm not suggesting that this could definitely work, and most probably not in time for the ban to go through Parliament. But I just wondered if there was another way to approach the problem ?

  • I think Kitti1 has a point here.

    Hydrocortisone has had similar (or possibly even worse) price hike.....but because it is an essential medication the NHS is forced to pay the bill.

    If those that need T3 were in similar, provable situation to someone with Addison's who needs hydrocortisone, the NHS couldn't possibly take the T3 away

    Article about hydrocortisone price increase here (owned by Teva)

    chemistanddruggist.co.uk/ne...

  • SlowDragon Kitti1 Those that need T3 are in a similar 'provable' situation to someone who has Hypoadrenalism, as both conditions are listed on the Free Prescription list? Surely that decision has already been made? We have proved that T4 does not work - over decades of trying - what more proof do they want!

  • Peripheral Neuropathy may be helped by taking good vitamin B complex, especially if you take vitamin D supplements/ have Hashimoto's

    See this article

    drgominak.com/vitamin-d-hor...

  • Gosh delicious21 This is awful. The stories I hear on hear make me so mad...so many people living half lives and living in misery, trying to get by- lives limited by illness and lack of support by a so called caring profession!!!

  • @Kitti1 Lyn Mynott had a meeting with somebody from Concordia last week. I've no idea whether she got anywhere. Also, somebody from T3 Action group on facebook spoke to the representative of Concordia on the phone.

  • Any idea what the purpose / content of the phone call was ?

  • She wrote to them and they offered to call to discuss it. I'm sorry: you will need to make friends with the facebook to find out the details. As clutter said: Concordia is the problem.

  • What about lobbying other pharmaceutical companies who make liothyronine (t3) to persuade them to apply for a UK licence and create some competition for Concordia?

  • If we knew why they were not already doing so, we might have a better idea how to persuade them.

    If there is a de facto cartel, then it might be very difficult without the pressure of governments. After all, they might be sitting back and seeing what happens in the UK - and planning the same in, for example, France and Germany, if Concordia get away with it.

  • A very good reason for not letting them get away with it! helvella

  • Wowzers ! How did you found that out ? Your amazing ! It will be very interesting to find out their pricing ect. And why do we not seem to know about this ?

  • delicious21 that's truly delicious news!!! Can you PLEASE copy me in when you find out more, pretty please!!! If they do supply we need to get on their case asap!!!

  • Me too please delicious21 👍

  • They are just part of the Walgreens Boots Alliance juggernaut.

    alliance-healthcare.co.uk/a...

    Kitti1 Kitten1978

  • It is definitely worth a try. But why is the Government allowing it now that the NHS is struggling financially surely the powers that be should be doing more.

  • A bill was passed last week that means the pharma companies will effectively have to justify their pricing on high priced drugs. On the surface of things great. But knowing big pharma and their ability to pull the wool over the medical profession's eyes with selectively published research. Who knows if this will be effective ?

  • Kitti1 I was wondering this too - they will find a way to 'justify' it and will it really make a difference. Lets face it, a company that hikes the price like this, can they really have any scruples?

  • l believe Medics need to think outside the box - as most have closed minds or will not even consider/investigate something a colleague will not.

    As regards Brands, you may have it the wrong way round. A company has 15 years l believe to register a new product under research and because of the time it takes, it may not have many years when they are the only manufacturer before anyone can make it. Doctors are often told to prescribe 'unbranded' products since they are cheaper tho not always as good. Worth noting too that Pharmacists can fulfill a prescrition from a range of 'generic' (ie unbranded products) and many will just give the cheapest (giving then largest profit). Fortunately not far from me is an Independent Pharmacist been well run for years, and you can discuss problems; they agreed to let me have the branded original product if they cant get the generic one that suits me.

  • My endo actually told me that T3 therapy can be dangerous!! ... The only reason for him to say that is to keep his obscenely paid NHS job and forsake his patients! ... Hyperthetically I could possibly show him some evidence from a professor of Endocrinology PROVING T3 benefits etc and he'd probably dismiss that too! Until they start thinking of their patients and not themselves we are up the swanny!!

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