Stupidity Award of the Year: the UK’s NHS states that T3 has “little or no clinical value”

The following Guest Blog post has been written by UK Thyroid Patient Carolyn and contributions added by Janie A. Bowthorpe

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Just when you think things couldn’t get more ridiculous….

Just a few days ago, the BBC reported that the National Health Service (NHS) of the United Kingdom has proposed that the medication T3-only, aka Liothyronine, has little or no value. Let me repeat: LITTLE OR NO VALUE.

The article also states: “The proposals could see an outright ban or tighter restrictions on some products being prescribed by GPs.”

Here’s the list, as reported by the BBC, of those they consider as low value medicines (and their annual cost to the NHS):]

  • £30.93m on Liothyronine to treat underactive thyroid
  • £21.88m on gluten-free foods
  • £17.58m on Lidocaine plasters for treating nerve-related pain
  • £10.51m on Tadalafil, an alternative to Viagra
  • £10.13m on Fentanyl, a drug to treat pain in terminally ill patients
  • £8.32m on the painkiller Co-proxamol
  • £9.47m on travel vaccines
  • £7.12m on Doxazosin MR, a drug for high blood pressure
  • £6.43m on rubs and ointments
  • £5.65m on omega 3 and fish oils

Also mentioned in the article after the above “low value” medications comes “suncream, cough and cold remedies and indigestion and heartburn medicines”. i.e. T3-only, which patients report has brought back MUCH better health, is on the same level as suncream.

The article states that the “NHS England confirmed the review would begin in April, but did not put any timescale on how quickly a decision would be made.

Living in the UK as a hypothyroid patient

Those like me living in the UK and using the NHS (which by the way is not ‘free’, as we all pay into it through our taxes), appreciate that it isn’t a bottomless pit of money which can fulfill every single person’s desires. Some of the items on this list (see above) are easily and cheaply available over the counter in pharmacies and supermarkets.  I believe people also have a responsibility to purchase some things themselves rather than incurring the excessive cost of processing an unnecessary doctor’s prescription.

But T3 isn’t available over the counter, although it is in some other European countries.

The sole reason T3 is on this list at all is the cost. Just look at that amount of money: £30.93million annually— that’s a lot of money, and who wouldn’t want to save that.

But despite this drug called Liothyronine (aka T3) costing pennies to make, and costing a couple of Euros on the mainland, it costs over £9 A TABLET to the NHS. No wonder they don’t want to prescribe it.

A loophole in legislation around generic medicines has been massively exploited and the cost has been steadily increased by the sole licensed supplier. So rather than investigate that situation of being totally ripped off and putting a proper system of value-for-money purchasing in place, the answer that is being proposed is to withdraw T3. What a failure of proper management of resources; I expect better of my government officials.

I have friends with the genetic mutation which means they literally cannot convert T4 to T3, even before we get into the debate about T4-only thyroid hormone replacement detailed below. They are being condemned to a long slow death.

A health care system which is held up as a model for the rest of the world is going backwards.

We aren’t all able to change doctors and a private prescription would be prohibitively expensive for most people, even if the doctors working in the private sector would be prepared to step outside the cruel guidelines still in place for treatment of hypothyroidism in the UK.

I can only hope that someone listens to the cries of outrage following this proposal and takes some sensible action to correct this massive pricing discrepancy. Getting proper treatment with T3 or NDT shouldn’t be this difficult and is a false economy.

Before I was refused any treatment due to the guidelines, I was off work ill for months. I was working full time within weeks of starting Natural Desiccated Thyroid; back paying my tax and supporting the NHS.

Let’s talk a minute about T3

For those who might be new to this, a healthy thyroid produces five known hormones: T4, T3, T2, T1 and calcitonin. Those five hormones are a wonderful symphony of what makes a healthy thyroid function. (Chapter 2 in the revised STTM book gives excellent detail about all this)

And hypothyroid patients were treated with all five hormones from the 1800s onward via pig or sheep thyroids…until the early 1960’s when Knoll Pharmaceuticals decided to promote its “new and modern” treatment for hypothyroidism–T4-only. i.e. no direct T3. T4 is a storage hormone meant to convert to the powerful and health-giving T3. And everyone fell for this promoted fallacy that somehow, giving patients only one of five thyroid hormones was a hunky-dory way to treat hypothyroidism. (See Chapter 1 in the Revised STTM book! Learn the truth!!)

But they were dead wrong. T4-only, aka Synthroid, Levoxyl, Levothyroxine, Unithroid, Eltroxin, Levaxin, Norton, Eutrosig, Oroxine, or Tirosint, seems to have failed millions of patients in their own degree and kind, over the years, forcing all who are prescribed it to live for “conversion” alone. Yes, some do better than others! But the large amount of people who have NOT done well is profound….just as it’s profound how many T4-users report feeling far better when they added direct T3 in their treatment, or Natural Desiccated Thyroid.

My final message to the NHS

You are seriously wrong to state that the medication Liothyronine (aka T3) has little or no value as a way to cut costs.

Your conclusion means that you will end up subjecting your fellow UK residents to a lifetime of continued hypothyroidism thanks to being forced to live for conversion alone on levothyroxine as a sole treatment for hypothyroidism (See seven studies/articles at the bottom of this blog post). Your conclusion also seriously harms those who have the DIO1 or DIO2 mutation, which prevents these individuals from converting T4 to T3 adequately.

Get with it, NHS. Wise up. Stop this massive ongoing cruelty to thyroid patients.

UK THYROID PATIENTS: Share this blog post anywhere, everywhere. Let’s send a firm message to the NHS. Copy and paste: 

https://stopthethyroidmadness.com/2017/04/02/stupidity-award-nhs/

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RESEARCH SHOWING THAT T3 COMBINED WITH T4 GIVES BETTER RESULTS (from https://stopthethyroidmadness.com/medical-research):

  1. Here’s a study from 1996 which underscored that both T4 and T3 are needed to remove hypothyroidism: http://www.ncbi.nlm.nih.gov/pubmed/8641203 (And it followed research from the previous year showing that T4-only did NOT do the job–see http://www.ncbi.nlm.nih.gov/pmc/articles/PMC185993/)
  2. As far back as 1999, the New Journal of Medicine reported superior results of a synthetic T4 and T3 combination treatment, especially on the brain and other tissues.  http://content.nejm.org/cgi/content/full/340/6/424
  3. And another one titled Thyroid Insuffiency: Is Thyroxine the Only Valuable Drug,   http://www.encognitive.com/  Journal of Nutritional & Environmental Medicine (2001), 11, 159–166
  4. And here’s another one from 2009: http://www.eje-online.org/cgi/content/abstract/EJE-09-0542v1 (has a fee) but here’s where you can at least see the abstract: http://www.ncbi.nlm.nih.gov/pubmed/19666698 They evaluated depression and anxiety rating scales as well as patients own preference.
  5. Also this one:  http://www.endocrine-abstracts.org/ea/0013/ea0013P316.htm
  6. At first blush, this Amsterdam study appears to give the same propaganda of T4 only. But as you read on, it mentions this: Third, recent animal experiments indicate that only the combination of T4 and T3 replacement, and not T4 alone, ensures euthyroidism in all tissues of thyroidectomized rats. From 2001, Developmental Endocrinology to Clinical Research: http://content.karger.com/ProdukteDB/produkte.asp?Aktion=ShowAbstract&ArtikelNr=48140&Ausgabe=227546&ProduktNr=224036
  7. John C. Lowe’s Four 2003 Studies of Thyroid Hormone Replacement Therapies: Logical Analysis and Ethical Implications  Excellent article (16 pages) about the efficacy of using T4 and T3 in treatment, and not using the TSH, and so much more.

 

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33 Responses to “Stupidity Award of the Year: the UK’s NHS states that T3 has “little or no clinical value””

  1. Alyson Burnell

    My endocrinologist is a Professor and tells me has written letters to the British Government about the cost of T3 compared to Europe- why is he and other experts in their field being totally ignored by people with no expertise in this matter? The cost to the NHS is far greater by not allowing this medication as do many other ailments will arise, not to mention the amount of sick days that will be taken.
    You would not refuse insulin to a diabetic so why are thyroid patients treated with such contempt?

    Reply
  2. Roddy McKenzie

    why have we not got 38 degrees to do something about this? Pretty hefty lobby group there. Pretty successful too. I am a member but probably not the best person to organise this as I don’t really know who to aim it at (not the signers of the petition but the person who needs to get the message to change this stupidity).
    Can someone who does know take this on and post it to 38 degrees? If you are a member there is a link on their website and all you do is fill it in….hopefully better than I would.
    If I hear nothing then I’ll do it myself. But really I am not in trouble here as I self medicate with NDT (which is stupidly cheap anyway) and since I started doing that have been very healthy thank you….But I know that is not possible or practical for all hypothyroid people and doesn’t solve ths issue of diliberate mis-information and bad treatment.
    You’ve got my email address here let me know what you plan to do.
    Thanks
    Roddy

    Reply
    • Paul

      Roddy, you say you self-medicate with NDT, where do you get it from? Im in the Uk and currently searching where i might be able to get some. Im currently taking Levo, but it goes up and down like a yo-yo.

      Also when you use NDT do you stop using the Levo and how do you work out how much NDT to take compared to the Levo you are on? (in my case I\’m on 75mg)
      thanks

      Reply
  3. Lynne

    I am one of those patients with the gene mutation, that’s why I merely ‘existed’ for 20 years before I found NDT and T3.
    The poor patients who have had this taken off them will now lead a sorry existence with downwardly spiralling health.
    The problem is that the NHS don’t know actually how many people are affected because many (like myself) are forced into sourcing our medication from abroad without the guidance of a doctor. You know, that service we have all pain into through our taxes. I myself left school at age 15 and apart from having my children have always worked.
    Not very good value for money, is it?

    Reply
  4. Nicholas Cremato

    I have found that we can’t see the forest through the trees. This is all about population control. If we mattered and were billionaires we would get real healthcare. I spent my entire life working for the actual government not the political joke that most people have access to. If you would like to see an outline of what is happening read the book
    Population Control: How Corporate Owners Are Killing Us by Jim Marrs
    https://www.amazon.com/Population-Control-Corporate-Owners-Killing/dp/0062359908/ref=sr_1_1?ie=UTF8&qid=1491234428&sr=8-1&keywords=population+control+by+jim+marrs

    Reply
  5. Jet Benenkoeler

    Really? Really? This is so unbelievable. How can a doctor even believe that you can replace 5 hormones by only 1 hormone? T3 gave me my life back. Returned my health back to 12 years before. The NHS must be kidding.

    Reply
    • Carole. LeBlanc

      I am also a victim of pharmaceutical companies stealing our health. I am now back on synthroid after being told that natural dedicated thyroid is discontinued. I’m a 30 year patient of hypothyroidism. I was on synthroid most of my life until finally I convinced my doctor to try me on natural thyroid. I felt like I finally had my life back. I was feeling great. I felt healthier,not tired all day long, not bloated , my hair and nails and skin were better than ever. I lost 10 lbs. Even my bathroom visits were so much more healthy. I’m Back on synthroid only a couple of weeks and I feel terrible. I can’t believe pharmaceuticals are able to get away with discontinuing a product like” natural thyroid” with no alternative to getting t3 hormone. Synthetic thyroid “Synthroid” is a terrible alternative . I actually feel like its “A Crime Against Humanity “!!!!!!!

      Reply
      • Donna

        Natural dedicated thyroid has not been discontinued. They tried that same lie here in the states actually have a letter from nationwide pharmacy saying the same thing that NDT has been discontinued. What hubris . That was over five years ago I can still get it at the pharmacy every day . As many of the comments here show folks in the UK successfully find NDT from sources other than the pharmacy. I pray you find a way to follow that same and we gain your health.

        Reply
        • Carole. LeBlanc

          I am a Canadian resident and was getting natural thyroid from shoppers drug mart and was told that it is discontinued and had to go back to synthetic \” Synthroid.\” Is there another desicated thyroid available in Canada as \”Thyroid\” is definitely not available at shoppers drug mart .

          Reply
          • Trudy

            There is currently a supply shortage from erfa but thyroid isnt discontinued. In the short term compounding pharmacies are able to make natural dessicated thyroid capsules at a custom dose. My shoppers is out of stock now as well but I was told by the pharmacist at Safeway this last weekend that they are expecting stock in a few weeks. If I can’t find it in stock then I have a compounding pharmacy lined up thankfully.

            Maybe you have a compounding pharmacy near you? It might be a solution.

          • Evelyn sgrignuoli

            Where can I get natural thyroid medication in st catharines ontario

          • Janie Bowthorpe

            The prescription NDT in Canada is made by Erfa.

  6. Sue

    We only have one licensed manufacturer of T3 in the U.K. Hence they can charge what they want. Last count was approx £120 per month for a low dose. I bought T3 abroad and paid £40 for 4 months supply sent by courier. It costs a huge amount for a company to licence a product in the U.K. So if doctors don’t prescribe, the demand is not worth them paying for a licence. It’s a viscious circle. To say it has no benefit to patients as an excuse to save some money is disgraceful and quite frankly very frightening for many thyroid patients. I had T3 taken off me after 8 months due the cost. this news is soul destroying.

    Reply
    • Sean

      Hello Sue.

      I hope you don’t mind me asking but would you be able to share a link to where you are currently purchasing your T3 abroad.

      I’m still trying to get my head around my wife’s Hypothyroidism issues and desperately want to end her suffering with depression and exhaustion.

      Best regards

      (From Janie: this will need to be done directly to your email, not on a public forum, sadly.)

      Reply
      • mel

        Could you also send me the details to buy T3 please? Much appreciate

        Reply
  7. Deborah Murray

    Are you kidding me? I have Hashimoto’s and had been on T4 only for three years with absolutely no help with symptoms. I encouraged my doctor to add T3 last June and it totally changed my life! It placed my labs in the optimal levels.

    Reply
  8. Michelle

    Wow. I’m shocked. And I’m extremely sad for all you fellow UK hypothyroid sufferers who had already discovered Liothyronine aka T3 medication in their quest for better health and had become human again only to now discover this is on the government hit list for removal due to costs!!! Are they serious? Are they that dumb to not realise the now rising costs of sick days upon this impact plus other medical treatment investigations now on the cards as our bodies become sicker without this life saving treatment!!! The answer is simply a blinkered NO, and because they do not have a chronic disease called HYPOTHYROIDISM. Please help put an end to this madness people I urge you!!

    Reply
  9. Tracet

    As a patient without a thyroid, and with double mutation DIO2 gene I was slowly dying on Levothyroxine. I am currently taking 2 grains NDT which I buy from abroad, and have very recently been prescribed 40mcg daily of T3. My doctor is not happy about writing repeat prescriptions and the pharmacy never has Liothyronine in stock, so I have to make repeat visits to pick it up. The NHS should get things sorted. Paying way over the top to Big Pharma and making patients suffer whilst the drugs companies make millions is NOT the way forward.

    Reply
  10. Emily

    What about those of us with T4 to T3 (DIO2 genetic) conversion problems? Liothyronine is a life saver for us. Surely this is negligent? So frightening…

    Reply
  11. Joanne

    For the thyroid patients who depend on liothyronine due to lack of conversion, I feel that taking away liothyronine from a thyroid patient would be like taking insulin away from a person who is diabetic. Both could be fatal with time. Surely the UK could continue to be a better model in the world of healthcare.

    Reply
  12. Kate Potter

    That literally makes my blood boil, we need to shout from the rooftops and cause an uproar!
    T4 is a prohormone T3 is the active hormone, five times more active than T4!! Unbelievable.
    So many of us are so ill as we don’t convert T4 to T3
    All offered statins and antidepressants and will eventually cost the NHS a fortune with heart problems, weight issues, mental health problems…
    So short sighted. Whatever happened to prevention is better than cure??

    Reply
  13. Alix

    I was facing a CFS diagnosis alongside hypothyroidism before I tried Erfa. I honestly believe I would be dead without it, as I would have taken my own life rather than live as I was. Now I’m back to work and feeling better than I have for a good decade. My husband, a doctor, was sceptical but having seen it’s effect on me, he’s a convert. However, he has to be careful what he says, particularly in public forums, as he has had fellow doctors round on him for his endorsement of NDT. I honestly think the NHS would save a fortune by prescribing NDT and/or T3 more generally.

    Reply
  14. Tessa

    In the the NHS report, Lithyronine actually comes under the subheading “Products which are clinically effective but where more cost-effective products are available (£58.69m) – this includes products that have been subject to excessive price inflation.” Tadafil and Fentanyl are also under this heading. So the BBC didn’t report it quite right.
    Clearly they admit that the products have been subject to excessive price inflation, so SURELY they would be doing something about that rather than taking it away from patients. And as to more cost effective products being available. Don’t get me started.
    In terms of action, a 38 degrees petition would be a good idea, but is our community actually big enough? This thread on the TPA UK forum has useful links of who to write to and complain. http://www.tpauk.com/forum/threads/is-it-true-that-the-prescriptions-for-t3-are-to-stop.14546/

    I would suggest that everyone write whether they actually are on T3 or not. It is clearly a treatment that is needed and who knows whether you will need it in the future.

    Reply
  15. Frances Mary Butcher

    Sad for patients needing T3…..
    Why not let them have it?
    Get costs lowered by legislation.
    Ridiculous situation ?????????
    Makes little/no sense….. Fran.

    Reply
  16. Lara reynolds

    Thyroid treatment is so awful in the U.K. .Thank god i found NDT and now self medicate . I would hate to think where I would be now if left in the hands of NHS Doctors !

    Reply
  17. Glenda

    What a crazy place the NHS has found itself in. Don’t they realise they’ll end up paying out more in other meds to try to ‘cure’ other symptoms created by the lack of this important hormone? Perhaps we should all write letters to the PM, Health Secretary and our MPs stating our need for T3 explaining our lives before and after taking it. If they are overwhelmed enough by the amount of post maybe they’ll begin to see there is a great need for it. As for the rob dogs who charge such exorbitant prices for a drug that costs pence to produce…….They should be thoroughly ashamed of themselves!!!!

    Reply
  18. Jen

    Hello, Can I please get information about where I can get T3 overseas? It’s only available by prescription here, is not “as per guidelines” and therefore docs won’t prescribe it.
    Thank you!

    Reply
  19. Tara

    I think that it is truly awful that Liothyronine is listed alongside Omega 3 and sun cream, which most of us purchase regularly over the counter. My personal journey with hypothyroidism in the NHS is still ongoing and complicated.

    However, at a time when NHS privatisation is increasingly on the cards (see the list of MPs in the Mirror 17 Nov 2014 with vested interests in private health care), do we really want to label the whole of the NHS as stupid?

    It is NHS Clinical Commissioners, the organisation representing the local Clinical Commissioning Groups (CCGs) which has brought this forward as a savings proposal prompted by reduced government funding for the NHS! CCGs are made of local GPs and manage 80% of the health budgets in their areas. They are not the acute trusts, they are not the mental health trusts, not the A&E departments, not the elective care services etc. They are part of the NHS, not all of it.

    The NHS is not perfect but a privatised system would not be based on principles of equality! It would be based on ability to pay. The US is the perfect example.

    Lets work to make the NHS better not contribute to its privatisation.

    Reply
  20. Shelley

    This is absolutely ridiculous! I have just discovered your website- I actually clicked on a link about fibromyalgia, and have had a nose around- amazing by the way! But I am so shocked by this news, and I agree with previous posts that it is going to cost the NHS far, far more to treat people that they ‘misdiagnose’ with other illnesses, especially fibromyalgia, cfs, me etc. I am gobsmacked that almost, no all of the symptoms I have can be put down to an under active thyroid!! I’ve been on levothyroxine for almost a year now, and I had to fight with the gp to put it up to 50mg as the endocrinologist had suggested, because my levels were ‘normal’! Even on 50mg my TSH was only 0.9!! But because it’s above 0.3, it’s fine!! I know it’s dropped again as my symptoms are horrendous, but from everything I’m reading, and my results, it is clear I need T3.
    How do I get it, or NDT if I am unable to get it from my GP? Apologies for the waffle, and if this shouldn’t be posted here, I apologise again, I can’t function properly anymore- I’ve had fibro for almost 18years, my brain is worse than mush, and I have the cognitive function worse than senility sometimes due to all the meds I’m on and the nerve damage 😕

    Reply
    • sam

      have you tried thyrogold? its from cows rasied on pasture in new zealand [ no gmos ] i took synthroid for 5 years only made me feel more tired and gain more weight and dr said \’thats what all the patients say \’
      maddening that he didnt seem to realize that well maybe theres a problem with it then since its not working ! am still tired and gained another 10 pounds so still havent figured it out even tkaing thryogold but at least it isnt form GMO fed pigs and it s not synthroid . and wiht thyogold my eyebrows grew back on outer edges more so know it works better than horrible synthroid or synthcrap as someone else called it much better .

      is also very important as jaime says to check for adrenal fatigue and if you have it make sure to rest more [ my favorite prescription ever ]

      Reply
  21. Karen Dallas

    I believe in the long run the cost to the NHS would be astronomical, however I think the present party in gov is seeking to move to an American style where whether you pay for insurance is the biggest factor. Everything health orientated, will be privatised and therefore in the long term the costs of what treatment we get will rest firmly on our own shoulders. I know this is fairly extreme, but it wouldn’t surprise me if this is a future population control method. If you can’t afford it, you don’t get it. I am currently self medicating with liothyronine 25mcg on top of the current 125mcg of levothyroxine prescribed by my GP. I have been on this for a couple of months and have noticed small differences but I am still exhausted and am falling asleep on my days off at random times. I work full time but have no time for the important things like my kids when I am off work because I sleep most of the time when not at work. Something has to give.

    Reply

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