📣 📣 Make your voice heard: speak up for T3 today!

📣 📣 Make your voice heard: speak up for T3 today!

- Items which should not be routinely prescribed in primary care: A Consultation on guidance for CCGs -

Thyroid UK has now received a letter from NHS England regarding the above consultation. Please note the wording, "The proposed guidance would not remove the clinical discretion of the prescriber in deciding what is in accordance with their professional duties."

The impression I get is that they think that those getting T3 is making it unfair on those that aren't, so let's take it away so everyone is the same!

Please take part in the survey and spread this far and wide to all the media platforms you belong to, families, friends, colleagues, doctors etc. etc. We must stop them taking our liothyronine away from us!

21st July 2017

Dear Colleague

NHS Clinical Commissioners (NHSCC) and NHS England have developed a proposal to improve patient care by no longer routinely prescribing 18 medicines which are either:

•clinically ineffective; unsafe; or not cost effective; or

•where the NHS can offer a clinically-proven alternative for patients.

In partnership we brought together an expert clinical working group earlier this year to review the evidence, and they have developed recommendations for a public consultation.

The objective is to produce commissioning guidance to support clinical commissioning groups (CCGs) in their decision-making, to address unwarranted variation, and to provide clear national advice to make local prescribing practices more effective. Any savings from implementing the proposals will be reinvested in improving patient care.

The consultation is open from 21 July to 21 October 2017: engage.england.nhs.uk/consu...

While many doctors and other prescribers are no longer prescribing these 18 medicines for patients, the evidence shows that there is variation across the country and that the NHS currently spends £141 million p.a. on these medicines.

Clearly the NHS needs a fair and consistent national position for everyone. As part of its national commissioning role, NHS England is taking a lead on this initiative and is working with NHSCC on behalf of CCGs from across England.

Subject to the outcome of the consultation, guidance on the initial 18 medicines is likely to be published by NHS England and CCGs will be asked to consider its implementation in their communities, ensuring they take into account their legal duties to advance equality and to reduce health inequalities. The proposed guidance would not remove the clinical discretion of the prescriber in deciding what is in accordance with their professional duties.

NHS England and NHSCC are also seeking people’s views on whether a wider list of 3,200 products that are available over-the-counter, without prescription, may be considered appropriate for future restriction. At this stage, we are seeking views generally on this area, for further work and consideration by the clinical working group.

We would encourage everyone who is interested to respond to the consultation and would be grateful if you could share this letter through your networks.

Yours faithfully

Lauren Hughes Julie Wood

Director of Clinical Policy Chief Executive

NHS England

NHS Clinical Commissioners

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70 Replies

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  • Wow, that took some completing - but then I did go to town a bit, whilst hopefully remaining lucid. Going to get family members to fill it in now.

  • When you get to the part that lists liothyronine, disagree with all three questions! The first is asking you to agree new patients should not have it! The second is crafty if you don't read it carefully-it is asking you to agree to stop prescribing, and for the third I want it to be prescribed as primary care without having to visit endos or anybody else! Get writing gang!😊

  • I agree - didn't know deprescribing was a word!

  • ljk1 I am pretty sure I have done this correctly, but it was certainly written to catch you out and each page took forever to load. After all that I hope it does some good. Thank you lynmynott for posting this.

  • The only 'experts' who can give positive views on T3 is patients who take it!!!! They get their lives back with the removal of all clinical symptoms.

    They will probably say 'what is clinical symptoms' because not one doctor appears to know any.

  • You have said so few words but T3 patients that get it get their lives back. Looking back when I took thyroxine I was like the living dead. X

  • I feel like that now on just Levothyroxine

  • I forgot to add I loved it xx

  • The proposed guidance would not remove the clinical discretion of the prescriber in deciding what is in accordance with their professional duties.

    Isn't this the case anyway and isn't it already meaningless as CCG's stop Gp's issuing it already and forced withdrawal?

    Going to go and shout loudly to everyone I know...

  • And breathe.... gosh I get angry easily, and frustrated that my foggy brain won't let me articulate as I used to :( but done it

  • ...and how would we find out about this ( or remember the consultation was about to take place :) ) without HUTUK ? Some selected responses from my response... this is tricky and sticky from the get go.

    Women account for > 80% of those affected by hypothyroidism / Hashimotos. Thus, changes to the availability of thyroid medications will affect them disproportionately.

    People on low incomes will not be able to source the medicine they need by alternative means, as it is expensive, time consuming and difficult.

    Many people have turned their backs on the standard treatment (levothyroxine) prescribed for hypothyroidism. It is not efficacious for all and yet it is constantly claimed to be the one size fits all miracle. Many source their own meds from abroad. How will such people learn of the proposed addition/removal of items? Equally well those fortunate few who are prescribed alternatives to levothyroxine need to be advised that the medication they need is subject to updated/renewed guidance. The nhs is well behind the curve in this regard - why couldn't notification be provided via the prescription process to those whose medication(s) are shortly to be subject to guidance so that they can take part in the consultation? Intentional or not, there is a 'smoke and mirrors' process afoot, working against patient feedback.

    What ‘multi-disciplinary team’ would that be? A medical professional and an accountant? This is beyond shortsighted and will create a new wave of people who will be wheelchair bound because their condition is not being properly managed.

    Those on limited means should continue to have access to these or we are creating a society where only the comfortably off will be able to afford to be well.

    There would be unintended consequences and the film I, Daniel Blake portrayed these issues more than adequately than I can. Someone with gluten intolerance, for example, could not afford the higher prices of gluten free foodstuffs.

    The site is slow to respond and pages load at the rate of a snail. lynmynott surely this is a topic worth a pin if we are to achieve anything?

  • Rapunzel, I do love your response. Will it be read??? Will they take any notice? Considering they have already relegated NDT to the wayside through lies.

    thyroidscience.com/Criticis...

    You are correct, those that can afford private health consultations and pay for private prescriptions will have no problems.

  • those that can afford private health consultations and pay for private prescriptions will have no problems.

    And in a supposedly first world country, that's outrageous. No politics intended. Eight in 10 people surveyed for the annual barometer of public attitudes said they wanted more cash pumped into the NHS, while seven in 10 supported more investment in schools, and 60% wanted higher spending on the police. Source: natcen.ac.uk/our-research/r...

    It's such a shame that it couldn't add: money for the nhs, not freaking 'managers'; investment in our children and grandchildren's education, not investment in 'hard left teachers indoctrinating pupils' (who anyway take no notice :D :P ) telegraph.co.uk/education/2... and higher spending on the police not freaking water cannon, BoJo! theguardian.com/uk-news/201...

    That, I'm afraid is the dispiriting likely outcome of giving one's opinion in this fashion. Your responses are thrown into a soup and liberally seasoned by m'learned endotools who know nothing. 😠

    S*d it I had nothing more pressing to do, Friday evening. Take that, nhs 👊 💥

  • I have begun to reply and did a few pages but not sure if you eventually get to where you can put your statements?

  • You have to say what they don't want you to say...so yes to it will cause discrimination / inequality, yes to will people be disadvantaged, disagree with their proposals & etc.

    Thinking about this, all will be weighted so it is representative. I should have said I was a transgender of the Jedi religion, I guess... :P

  • I have just read this and think I'll post it too.

    newstatesman.com/politics/s...

  • Hurrah for the Staggers 💖

  • Shaws, good article.... shades of Brave New World.... scary.

  • Rapunzel, this is excellent! Indeed those who can afford to pay for private consultations AND prescriptions will have no problems at all... nothing really changes.... Could it possibly change? Fingers crossed.

  • Let's hope those in 'charge' will listen to us at the bottom of the ladder.

    Dr Skinner (RIP) stated quite often that patients were in a 'parlous situation' due to the guidelines rather than treating people the way they used to 'by clinical symptoms' thus leaving some desperately unwell.

  • Please correct me if I've read this wrong...but in that NHS document the British Thyroid Association seem to be for T3 being withdrawn. Why would that be? I thought the BTA and TUK were together in helping us. I hope we are not fighting a losing battle 😔

    The British Thyroid Association, in their 2015 position statement,

    state “There is no convincing evidence to support routine use of

    thyroid extracts, L-T3 monotherapy, compounded thyroid hormones, iodine containing preparations, dietary

    supplementation and over the counter preparations in the

    management of hypothyroidism”.

  • Janey1234,

    The BTA have never supported anything other than Levothyroxine however, they have issued guidance to patients, GPs and endos about switching T3 and clearly say patients doing well on it should not have prescriptions withdrawn due to financial savings. british-thyroid-association...

  • Ok...thank you 😊

  • Many doctors/endos have withdrawn patients T3 regardless. We've had desperate requests of where to source.

  • We used to get Natural Dessicated Thyroid Hormones but through False Statements the BTA withdrew this important replacement for many who didn't do well on levothyroxine. Dr Lowe made three yearly requests for a response before his untimely death but they never, ever did respond. It makes one wonder if any of them get paid by Big Pharma - just imagine how much is paid for blood tests alone when previously we were diagnosed by clinical symptoms and given NDT.

    The modern method is ignorance of clinical symptoms and reliance upon TSH only. Not very modern at all.

    thyroidscience.com/Criticis...

    Now the Force is Out for the removal of T3 and it is not our fault that the suppliers increased it enormously. There are other T3s at a much lesser cost although not licenced. Many are purchasing their own T3 anyway and probably not licenced but it makes people well and symptom free.

  • The whole thing is insane!!!

  • It rather looks like the BTA is neither working for the patients neither against them... surely should it not support patients fully? A bit pointless otherwise. Wondering how others feel about the BTA's position.

  • I just made the mistake of reading the BTA website-I am so angry I don't think I will sleep tonight! How can they be so stupid and arrogant 😡 do any of them ever stop and think that so many of us complaining we can't all be wrong! The dismissive attitude to those who don't think they are doing well on thyroxine is unbearable! GRRRRRRR!

  • Arrogance is the proper word. I always thought doctoring was the relief of disabling symptoms by the medical profession - it is a profession but nowadays seems all about promotion and dictatorial in what heals a person even when it is wrong.

    They ignore research which doesn't go along with their own obstinate theories. Theories it is. It is us the patients that debunk the theories when we don't recover on levothyroxine and they also ignore that many improve with the addition of T3 to T4 or T3 only. Or Natural Dessicated Thyroid Hormones which they have also withdrawn, considering it was in use from 1892 (in different forums) up until they had an idea to withdraw it. I now wonder have any been paid by Pharma Companies as Dr John Lowe said it was through monetary incentives that levo overtook NDT.

    How many people have been driven to suicide by not being offered an alternative when they are at their lowest point.

  • I will do this today. Lyn, could you post it again with a bolder heading to alert more people? I nearly missed reading it.

  • Bookmarked and will fill in when brain fog has cleared a bit. GG

  • Rapunzel whilst the official figures do show that the gender ratio is wide, I suspect that it is not quite so differentiated. Men are less likely to go to the GP and we know how hard it is for us women to get GP's to believe that our symptoms are thyroid connected, what chance do men have, when the condition is so largely seen as a 'female' problem.

    I wonder how much money would be saved if the NHS did away with prescription charges, as only 10% being paid for? How much does it cost to administer these charges, as compared to gain?

    It would be interesting to know who was actually involved with putting this consultation together, and if there was a representative cross section? Again, a faceless group that cannot be held accountable for their decisions. A common ploy the NHS hide behind?

    Also the mention of the survey taken in Feb/Mar - how many CCG's already deprescribing were involved as opposed to those not? As obviously they would see 'low benefit' of T3 if they have already banned it!

    And I cannot see 'prescribing' in my dictionary. A ploy to confuse. Why are they afraid of being transparent? What are they hiding?

    What was the result of this survey - is this the 'evidence' they will 'quote' going forward, but again, not be able to produce.

    Notice how they continue to mention the 'cheaper alternatives' but never indicate what? As T4 is the only option remaining why are they not saying this?

    They are looking to line the pockets of the Endo's - insisting on multi-disciplinary involvement when really, we all know that this could be issued and monitored by GP's. The danger of T3 is massively overrated, and if properly monitored should not cause a problem.

    The one good point is that they are admitting 'Clinically Effective'.

    Agree this post needs to be pinned and perhaps even reposted regularly (often pinned posts get missed) to ensure greater numbers see it and act. And encourage friends and family to share and complete too.

  • It has been pinned, now. The title of the post isn't likely to attract many to read it...what a shame. 'To the barricades!' may be more appropriate :D

  • Rapunzel, If you can suggest a more appropriate title (that won't incriminate TUK! :D ), then maybe it can be changed.

  • 📣 Make your voice heard: speak up for T3 today

    Will that do, RedApple ? Cheers x

  • Done!

  • Ah me, the limits of HU :( The pinned post title hasn't changed...can you fix it RedApple ? Won't the emoji work? One of those always seems to bring all the girls to the yard ;)

  • Rapunzel,

    I unpinned it and repinned it and it seems ok now.

  • Yay! Admins of the year every year 😘

  • Sorry, forgot to paste in the emoji... done it now (twice :D )

  • The title may get a better response if said 'T3 Consultation Please respond and complete Survey'

  • I am in a bit of a quandary here... My endo is based in Shrewsbury (England), but my GP who actually prescribes my T3 (and presumably pays for it) is based just over the border in Mid-Wales... Would there be any point in my contributing to this or will it just be set aside as I live in Wales?

  • Zephyr I am racking my brain and don't believe I was asked for my location. It's a bit of a pain completing it but go for it - what harm can it do? And thank you x

  • Agree with Rapunzel there will be others with boarder issues that overlap. Go for it.

  • Does this help? from the Consultation document

    "2 Definitions and scope

    2.1 Definitions

    Annual Spend: Unless otherwise indicated this is the total value from the Prescription

    Analysis for England 2016 produced by NHS Digital. Prescriptions written by General

    Medical Practitioners and non-medical prescribers (nurses, pharmacists etc.) in

    England represent the vast majority of prescriptions included. Prescriptions written by

    dentists and hospital doctors are also included provided that they were dispensed in

    the community. Also included are prescriptions written in Wales, Scotland, Northern

    Ireland and the Isle of Man but dispensed in England. Prescriptions written in

    England but dispensed outside England are not included. The figure quoted is the net

    ingredient cost which refers to the cost of the drug before discounts and does not

    include any dispensing costs or fees. It does not include any adjustment for income

    obtained where a prescription charge is paid at the time the prescription is dispensed

    or where the patient has purchased a prepayment certificate."

  • and T3 is on the "homeopathy" list? (a 'low-value' medicine)

    bbc.co.uk/news/uk-40683915

  • Just wondering at the beginning whether to class myself as a "patient", " a family member" or "a member of the public". Would any category have greater weight than others? Without being able to see the whole questionnaire in advance am debating best option. Maybe overthinking again!

    Shared and will read and complete form tomorrow !

  • Another thought from hubby, surely any NHS patient currently on liothyronine would only have arrived at this solution after showing intolerance or poor improvement on levo, as agreed with NHS, even if they arrived there by going privately at some point. Liothyronine is not a first try option. Therefore all those patients receiving it on NHS are living proof that liothyronine is a different and for some crucial, alternative treatment. Dr Toft previously leading the BTA admitted earlier this year on The One Show that liothyronine is necessary for some patients ie about 10%.

  • I am just about to complete the survey and I am one of those 10% (I think it is even higher than 10%...I think it is more like 16%.) Having paid for the DIO2 test privately the results came back as "Homozygous variant genotype AA". That means I have inherited the polymorphism from both my mother and father and convert very poorly. On the strength of this I have been prescribed a combination of T4 and T3 on the NHS ........and got my life back. If they try to put me back on levothyroxine alone, I'll fight it all the way.

  • I am currently debating D102 testing step and how valid and reliable results can be. I must research more. Thanks for your comment 😊

  • It is DIO2 (three letters and a number). Could be important when you are searching and looking things up.

  • I had that conversation with my GP this week. In the 80s I was on a huge amount of T4; radically reduced in the 90s after low TSH fears, and felt ill; NHS endo added T3 15 years ago- feel great. To go back on T4 only would be to go through those stages again.

  • Hi Quokka, exactly ; I was started on 100mcg levo in 2007 by GP, with no gradual buildup. Collapsed with headaches, exhaustion, muscle/ joint pain, etc etc etc. Stopped taking it in 2009, trialling nutri thyroid and nutri adrenal instead, much improvement but not well. Self-funded lio under Dr P's instruction from about 2010. Felt as though I was reclaiming my life. Presented to new GP and endo in 2012, armed with all my graphs of symptoms, bloods, signs etc. Endo insisted I trialled different combos of levo and lio, whilst I continued recording, eventually agreeing I was better on lio only. Then son was diagnosed coeliac in 2014, so we dropped gluten in family home to avoid cross contamination. Hey presto my alleged remaining ME/CFS was almost eliminated. I still have better and worse patches but am mostly able to have a real life at last! I still don't feel I can have a totally honest conversation with my GP, for concerns re prescribing and I am poorly monitored, all things to work on.

  • See prescqipp.info follow further down the page WebKit links select DROP-List then select Liothyronine and then select the green font liothyronine link . Costings are somewhat suspect. I know French EU licensed liothyronine was 10x cheaper than UK licensed in 2012, am not sure of costings now. NB DROP refers to Drugs to Review for Optimised Prescribing, not as logic would suggest drugs to be dropped......Daft Acronyms Abound DAA!

  • Filled in now and submitted. I found myself getting quite angry, but this meant I was comprehensive in my responses.

  • I notice that the NHS consultation document has a link to the BTA's position statement. The heading of that document refers only to Primary Hypothyroidism and yet this info is included as if to suggest that it covers all types of Hypothyroidism.

    More misleading by the NHS!

  • This issue of taking a primary hypothyroidism document and applying it universally is proof of the ignorance of many, and the wish to mislead by those who are not ignorant.

  • So well said helvella!

  • Filled in with references and using their format for response.... hope it helps!

  • Have cut and pasted my response and sent it to my MP, David Warburton , Somerton and Frome. He has replied saying he'll arrange an appt for me at his surgery. Hoping I can fully update him on the situation. Any thoughts welcome. I know others have represented thyroid patients in the same way. Let me know do's and don'ts if there are any.

  • Hi sarahstevenson, Would you mind letting me know how this goes? I'm hoping to put up information about our campaign this week, which is asking people to visit their MP.

  • Not good..... have had email suggesting 27th September miles from where I live and work or 13th Oct both daytime appts so tricky when we run own own business....... so have left an answer phone message and emailed suggesting other ways of disseminating information. If I don't hear back I shall let them know I am contacting the MP in neighbouring area, which includes the main local hospital. Really poor timing across the summer, may be another thing to add.

  • Hope they can accommodate you. Yes, unfortunately, poor timing, but hopefully, they will do something after the recess.

  • Just reading up the documents in readiness to complete the survey and on accessing this link (in the introduction to the survey)

    engage.england.nhs.uk/consu...

    It is entitled 'Equality and Health Inequalities – Full Analysis – Items which should not be routinely prescribed in primary care.'

    On page 27, it says 'Liothyronine

    The draft recommendations for liothyronine ensure that patients would be offered a suitable alternative. Where required this would involve an MDT of other health professionals. There are no recommendations that result in patients being disadvantaged by offering no alternative or one that was not agreed collaboratively by the patient and clinician.

    '

    Did you see this and what do you make of the last sentence? On that basis, I should be able to get my Endo to prescribe T3, or am I missing something? There is no suitable alternative! T4 is not T3 and I know I don't convert well.

  • Musicmonkey,

    The 'suitable alternative' is the 'cheaper and effective' Levothyroxine. There seems to be no conception that patients need Liothyronine either in combination with Levothyroxine, or instead of Levothyroxine, because they were originally prescribed Levothyroxine and found it didn't work for them.

  • I know Clutter that is where NHS England want to take us, (indeed are already taking us) but I don't understand how they can say "no recommendations that result in patients being disadvantaged by offering no alternative or one that was not agreed collaboratively by the patient and clinician."

    If my GP or Endo offers me Levo only, I just have to disagree it seems, because then it won't be collaboratively agreed between me and them. What would happen then?

    I would certainly be disadvantaged if I didn't have T3.

  • Musicmonkey,

    All of us taking T3 in combination or instead of Levothyroxine will be disadvantaged.

    "Individualised medicine", "personalised medicine", "doctor-patient partnership" are just bovine splatterence unless you have the prescription pad.

  • I would urge everyone with an interest in this to reply to the consultation. Without your link, Lynn, I'm not sure I would have known it was even 'in play.'

    I'd like to comment on the quoted phrase, "The proposed guidance would not remove the clinical discretion of the prescriber in deciding what is in accordance with their professional duties."

    I'm sure patients are aware, but feel it worth emphasising, that your GP may be one who takes guidance as gospel and decides to follow it to the letter, without applying 'clinical discretion' or considering talking it through with you first. This is what happened to me with regard to DHEA - not on the list, but subject to guidance by my local CCG. I was left hanging with no notification of the changes until I contacted my GP to chase for a prescription. If they can get away with this in the case of other treatments, some GP's inevitably will. (This is me 'shouting' alongside UrsaP.)

    My own experience suggests that the reassurance in that phrase is at best disingenuous and at worst consciously misleading. From other comments here, it looks as though the whole consultation is tilted that way, with questions deliberately phrased to mislead the unwary.

    I find the level of cynicism staggering.

  • Completed

  • Done.

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