My first tweet - on the proposed removal of liothyronine - response from NHSCC

Heavens what a day. I was so incensed by the liothyronine news that I worked out how to tweet. Tweeted NHSCC (NHS Clinical Commissioners) the people who have recommended the change) and got this in response: (Shame I don't gain much comfort)

'NHSCC

@NHSCCPress

Mar 28

@loueldhen We’re not proposing a blanket ban - but in most cases patients can be treated with an equally effective yet cheaper alternative'

79 Replies

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  • How can Levo/T4 being a storage hormone doing diddly squat in the body be the same as an ACTIVE one - as in T3/Liothyronine. Maybe do your own version for another Tweet :-)

    Congrats for trying - I have sent an e-mail ...

  • Well done, their response will based on educated endocrinologists that believe prescribing T3 "is dangerous, there's no need for it and only gets prescribed to patients that create a big fuss " quoting a scary endo I met last year smh.

  • DoubleM Does anyone know what 'dangers' Endo's promote with T3? So the answer is 'LETs ALL CREATE A BIG FUSS!'

    We need to be challenging these Endo's to justify their reasoning and pointing out that we 'adult' human beings are able to cope with self risk assessment - if we know the dangers and know what to look out for, the decision to try T3 should be ours - with their support I'm sure most of us could manage that.

    Maybe it is the Endo's we need to be targeting with our 'Information'. Kitten1978 Kitti1 juniperex Marz

    Maybe if we all tweeted - the power of social media!

  • Thank you for the link

    I believe the health risks the endos and gps site are heart arrythmia and osteoperosis. i presume they base this on some medical 'evidence' . i guess its just a case of which evidence you believe.

    Heloise posted a very interesting piece yesterday with a link to an article that seems to provide evidence to the contrary regards heart problems. Or at least the risk of another heart problem

    journal-of-cardiology.com/a...

    Im afraid I think theres not a chance in a million of them accepting we could self risk assess ! Surely they would see that as a contridiction to their role and all their training. Us know ourselves and our health better than them ! Whatever next !

  • Hi Kitti1 I've been on t3, aware of those 'risks' for over 7 years, no sign... There are risks with all meds...what is so 'special' about these??? If I had palpitations I'd stop the meds and see the Dr? And just means GP has to monitor...so what part of the job?

    I wondered if there were other risk they were soooo scared of! So much for a partnership - 'as long as we are 'sleeping partners' Which of course we will be if we can't get our meds!

  • The thing is that talking to endos is like talking to a person who is simply refusing to listen. I suspect they have interest in maintaining the status quo e.g. they are benefiting from relationships with big pharma. The ends who care are too scared to speak up but we could try to identify them and contact them. WE don't need to limit ourselves to Uk-based endos e.g. somebody mentioned endo in Finland who loudly says the change is needed.

    I agree: when they are bullshitting us saying the T3 is dangerous we need to demand specific research evidence. I'm not aware of any. In fact, there have been 13 death on T4 in the UK reported through the yellow card scheme, none on T3 ;)

  • I too have sent an email to the BBC and have asked them to investigate the whole sorry business of price hikes and the general attitude of the NHS that Levothyroxine is perfect for everyone. I hope they can wade through my details on failure by people to convert properly and patients with no thyroid, the two groups of patients definitely needing T3. I also reminded them about the Billy Kenber exposure of pharmaceutical companies last year in the Sunday Times. I am so angry....

  • Thank you!!!

  • I don't know anything about tweeting or Twitter generally. I've looked at the NHSCCPress page and can't see your tweet. Presumably they don't display tweets which aren't flattering and they can only be seen on your page?

    I've never really understood how Twitter worked, nor have I ever understood why its so popular.

    Me <--- Luddite

  • Me neither. Shows how cross I was. I think they would have to 'retweet' it for it to be seen. Which I guess they wouldn't want to do. Amazed that they replied though.

  • Count me in too. When I tweet (about once a decade) I may as well spit down a well but those who tweet from troubled parts of the world resonate round the globe 24/7. I am sure that if I was in trouble and I tweeted about it ......well, crickets.

  • humanbean I'm not a tweeter, but maybe we need a coordinated Tweet fest? I'm sure we can work it out and inundate them with tweets to show they can't stamp on us?

  • I don't know anything about Twitter and I don't have an account. I also don't have a Facebook account. And I'm unwilling to get an account for either, sorry.

    I would describe my normal communication style as "verbose". I think I would be effectively rendered mute by being restricted to 140 characters.

    :P :)

  • Ha ha... humanbean that could be my problem too - you many have noticed!

    I think I did join twitter, but don't think I ever worked out how I joined never mind how to post - can just about manage fb, and tolerate it for 'research' family history and such and contact for long distance family and friends.... this is only forum, and only been on here since Jan. Bit of a luddite too...But this topic is really bringing me out of my shell!!!

    I feel that, if I don't fight it, I can't moan if t3 become extinct.

    (just taking up too much of my time right now...!!)

  • Just another thought, I've had a look article and does anyone else think the figure of £30.93m is correct? It's a 1/4 of the overall cost being cut :-/

  • Thing is , why are they paying so much when we can source it from abroad more cheaply ?

    I think this is the question they NSH need to answer !!!!??!?

    Running a brewery quote comes to mind

    My son owns an engineering firm

    Thats just the sort of thing thatmakes or breaks !!

    NSH are taken for a ride in many ways

    This is what needs exposing

  • Indeed! The NHS' response to ridiculous price hikes is....

    ....to withdraw the drug from vulnerable patients who rely on it. Instead, how about sourcing it from a less rapacious​ supplier? Although I don't agree with privatisation, the NHS surely needs procurement officers who have a little bit of nous.

  • Teuchter My personal opinion is that the NHS has not been happy to issue T3 even before this major price hike. I think, because there seems to be anger and aggression shown when patients are asking about T3, that there is something more to this. Hence, this price hike has just played into their hands. Coupled with the fact that the NHS have not seemed to bothered to address it with the company involved, or made any effort to source from abroad, smacks of corruption and it being orchestrated to force it off the market. Funny how this proposal to remove it has come about now. And the fact that it was/is timed to coincide with the invoking of rule 50 - hiding it amongst 'lesser vital', over the counter, items, like suncream adds to my theory.

    Plus now the fact that we are all struggling to get supplies of supplements as they are being turned away at port and 'checked' at airports, suppliers abroad running dry...???

  • NHS. typo !

  • I hope you don't mind, loueldhen, but I've replied to the tweet from NHSCC and #liothyronine (in case anyone wants to start a trend).

    (I'm a techy - 22 years in IT - but know nothing about this social media stuff.)

  • Just in case anyone's interested, I added

    "Incorrect. Most patients on #liothyronine take it because they cannot be treated effectively with levothyroxine (alone)."

  • Well done, Babette! The reply I had wanted to make was: How are they going to guarantee that it will not become a blanket ban, as already many CCGs are refusing it to endocrinologist who want to prescribe?

  • Thanks. I wouldn't have known how to but I see your reply and so am finally working out how twitter works! Just imagine the disruption to lives while they found out whether 'in most cases patients can be treated with an equally effective yet cheaper alternative'. Most people on T3 have already been round that loop. Why has there been no research on why some people cannot convert T4 to T3? Endos clearly know this exists but do not come out of the closet.

  • There already is almost a blanket ban on liothyronine across much of the country from what we see here!

  • That's BS because my endo has been banned from prescribing it even though he's appealed 3 times with evidence.

  • same here Hypo101 my endo happy to prescribe as i fit the criteria but hospital refusing to fill prescription and gp will not take instruction from endo....and round and round it goes x

  • Has your endo done anything about it? would they support us???

  • he has written several strong letters and one to me MP but everything is falling on deaf ears. At the end of the day endo has to keep within limits and has his job to consider.

    He would not involve himself in any thing political, the 'im a dr' show contacted him and he wouldnt participate. I dont blame him, sticking your head up often back fires, look at dr skinner barry peatfield, sarah myhill. professionally its not a good move xx

  • Well, it sounds he has done more than most anyway... He wouldn't be so scared if more of them come forward at the same time. There is safety in numbers ;)

  • He is shadow health minister, they will all be too busy with general election now and we will be back to square one depending who we get in local elections.

    Jeremy Hunt does not make the decisions he is the one who carries them out, IF he was not following instructions im sure he would like the kudos of knocking millions off nhs drug bill, which he could do by purchasing anywhere else in europe as per treaty of rome, the EU have not pushed for this so they have a hand in it.

  • Would you endo be willing to support us? E.g. by writing to his MP, DH etc.? I guess he probably will be too scared but it worth asking...

  • NICE uses the wonderful measure, quality adjusted life year (QALY). They say this:

    Generally, we consider that interventions costing the NHS less than £20,000 per QALY gained are cost effective.

    nice.org.uk/advice/lgb10/ch...

    From reports of the hell some go through without liothyronine, I'd say it provides massive quality adjustment.

  • The investigation into the price hikes by Ambipharm of liothyronine has been put on the shelffor the 2nd time

    theres a thread on tpauk.com about it

  • Speak with your CCG pharmaceutical advisor and complain. Ask for referral to am NHS endo (and research from this site where T3 friendly endos are located). If you are recommended continuance by an endo they will continue it. Be prepared, marshall your arguments, take details of what happenshe to you on T4, emphasise the difference to you and stay calm. A reasoned and persuasive, well-documented argument beats hysteria (though that's what you feel like, I'll bet.)

    If all else fails, you may have to buy abroad, if that is possible for you. I hope you are successful.

  • my endo will monitor and do all tets on nhs and give me private prescription every 3 months which i get filled in france for 3 euros a packet.

  • Thank you for putting up a fight!

  • I feel discriminated against. If I was a drug addict, had type 2 diabetes or was obese the NHS would be throwing money at me. We have a friend who is type 2 & gets very expensive injections to control his diabetes. However it's all of his own doing because he won't adjust his diet. If he comes to dinner he will drink 2 bottles of red wine during dinner & have a couple of beers before. It makes me so mad. It might come around & bite him on the bum though as his daughter has just been diagnosed hypo, she's a nurse & it will be interesting to see how she gets on. Grr!

  • Are you suggesting that the nhs should decide to treat or withhold treatment based on the quality of personal decision-making we demonstrate? I would be careful what you wish for, a lot of us would be refused treatment based on our insistence on self-treatment, and tbh that argument would hold water.

  • Not at all - most of the conditions I have mentioned are self inflicted. I just feel very frustrated when I hear about this guy boasting about the cost of these injections to control his diabetes. He does absolutely nothing about his diet or lifestyle. We are the forgotten ones who are prescribed a drug that makes us feel halfway ok & that's good as far asking doctors are concerned.

  • I'm not sure what you're saying. It seems like you claim these are self-inflicted health problems and we should change how we treat them because they're self-inflicted. Have I got that right?

    Life is hard on the body and we don't all make stellar decisions every day of our lives. An awful lot of health issues (high cholesterol, diabetes, obesity, autoimmune illness, cancer etc etc) have a multifaceted profile which consists of an inherited tendency plus a lifestyle that may enhance that tendency.

    Like a lot of folk I developed Hashi's after quitting smoking. Something could happen to my heart or bones after self-medicating w t3. Should those choices affect my health care?

    Right now nhs treatment is not rationed on the basis of the quality of the choices we make. Whether you hurt yourself falling down the stairs or skiing makes no difference, and if you had a drink before falling or skiing also does not change your access to treatment.

    And btw if you were a drug addict your choices would be near nil, drug and mental health services, which go hand in hand, have been in crisis for years.

  • No I'm not saying that at all. Just very frustrated & not expressing myself very well.

  • It is frustrating and irritating to see people making bad choices over and over. I didn't mean to jump down your throat, it's just that so many people on this forum are obese, sedentary, suffer w mental health problems etc etc because our thyroid conditions are treated w so little care, and we're given short shrift by doctors because of the stigma associated w these conditions. I feel like health care rationing is already a reality for us because doctors see our problems as self-inflicted.

  • I have read that NHS England are consulting on these changes with the start gun this Friday.

  • Really?

  • 'We’re not proposing a blanket ban - but in most cases patients can be treated with an equally effective yet cheaper alternative.'

    Er, that would be good value privately procured non-nhs t3 then - ?

  • NDT is cheaper than T3. Perhaps we can have that lol x

  • i agree with Pmb57, my friend is an A&E dr who see's same drunks week in week out, throwing up, injuries from fighting or falling which creates a hideous atmosphere for people waiting in A&E they are wasting valuable resources, loud and violent. If you want to drink yourself to death, that is your choice but they should be charged for the amount of time, resources taken, if they can afford to binge drink which is self inflicted pay for your treatment. If you want to keep taking street drugs and over dose dont expect valuable resources to fund your habit. They jump the queue because they are a nuisance and they want to get them out, they should be sent to police cells/drunk tank to sober up not waste drs time keep patching them up.

  • How do they jump the queue?

    In other parts of the world these are the people whose bodies people who make better choices step over in the street. We can have that too, and we will do as soon as they hammer out better ways to deny us treatment. Sadly a lot of us who think we're on one side of that line will end up on the other.

  • they jump the queue because they are loud and aggressive A&E treat them first to get rid of them or sedate them. A&E should be on emergency need not drunks needing patching up every week. My friend sees same bunch nightly, weekly, monthly she is sick of them. They take up resources and all those ambulances waiting outside with emergencies waiting for an available dr would be seen far quicker if drunks were turned away. Sober up and come back if you have an actual medical emergency not just binge drinking vomit.

  • So they don't jump the queue, the staff choose to treat them before more needy people because they're a nuisance? This contravenes everything I know about triage and they must have a lot of stories about patients dying in A&E for lack of treatment because the staff are too busy moving drunks up the queue.

    My understanding is that the police no more want a drunk tank than the A&E staff want an A&E full of drunks.

    No small part of the problem is that drug/alcohol services has been in crisis for many years, but something I never hear mentioned is that, for whatever reason, today no one is worried about losing their alcohol license for serving people who are visibly intoxicated. We suffer w town centres full of impaired and antisocial drunks who continue to drink in licensed premises every weekend and after every sporting event and this is considered normal, no one is sanctioned for it and we not only suffer but we pay for the police presence and the A&E treatment.

    There has always been a problem w disruptive and/or vulnerable people who don't fit into society, don't follow the rules and create an almighty nuisance for others. This problem will never go away. There are countries where their version of a solution is to refuse them any help and turf them out on the street where other residents step over their corpses every morning. When we read on this forum about sick people being denied thyroid treatment because they're too fat, tired, 'depressed' etc, this is just another permutation of that way of thinking.

    Hubert Humphrey said “the moral test of government is how that government treats those who are in the dawn of life, the children; those who are in the twilight of life, the elderly; those who are in the shadows of life; the sick, the needy and the handicapped.” This is the ideal we are trying to live up to, however imperfectly.

  • keep patching drunks up is called 'enabling' leave them to deal with it on their own, they may be less likely to do it the next week. Why should tax payers and nhs keep funding them.

  • Enabling is a 12-step term used to describe rescuing behaviour in codependent relationships, not the actions of an institution like the nhs.

    I'm not suggesting they 'should' do or not do anything, I'm saying this is the way the nhs works, your access to treatment is not withheld from you until you fill out a form demonstrating that you're an upstanding citizen who makes great decisions. This isn't my personal opinion.

    I know there are people here who are covertly refused treatment by their doc because they are obese/tired/depressed/menopausal etc and it's wrong and keeps sick people sick.

    I feel we're in danger of taking this thread off-topic and I'm not a spokesperson for antisocial behaviour so I'm happy to agree to disagree on this matter.

  • Perhaps it would be possible to get a lawyer to investigate what action could be taken by those whose T3 is withheld when their doctor/endo says they must have it.

  • I'd love to see this become a reality. They must know they don't have a leg to stand on.

  • It's an excellent idea and the one which has the potential of being the most successful but lawyers are very expensive. I doubt Thyroid UK or any of us here could afford it. Also: appealing to European Court of Human Rights won't be an option as UK is leaving EU...

  • The European Court of Justice is an EU court, and since Brexit has now been triggered I think we (British citizens) are no longer part of that and can no longer appeal to it.

    The European Court of Human Rights is not an EU court it is a European court. We'll only lose access to that when the government repeals the Human Rights Act, which some people in the UK (not me) seem to think is a good idea because some criminals use it to their advantage.

    Anyone who wants to repeal the Human Rights Act to stop criminals benefitting from it is like a turkey voting for Christmas.

  • You are very well informed humanbean! I haven't had a chance to properly look into it. I have to prioritize my own health as my adrenals are still struggling ;(((( The soul wants to but they body is still unable to follow - FRUSTRATION.

    It made me feel better to know that the European Court of Human Rights will be still available to us after the bexit. Last time I checked we all had the right to life. Given that hypothyroidism is fatal and some of us cannot tolerate any other thyroid medication by banning T3 they are sentencing us to death. We are also being discriminated against e.g. given that women are more likely to suffer from thyroid disorder we could also say that we being discriminated against on the basis of our gender.

    The Universal Declaration of Human Rights:

    Article 3.: Everyone has the right to life, liberty and security of person.

    Article 7.: All are equal before the law and are entitled without any discrimination to equal protection of the law. All are entitled to equal protection against any discrimination in violation of this Declaration and against any incitement to such discrimination.

    Also:

    The NHS Constitution for England lists 7 Principles that guide the NHS (or do they really?):

    (https://www.gov.uk/government/publications/the-nhs-constitution-for-england/the-nhs-constitution-for-england

    1. Access to NHS services is based on clinical need, not an individual’s ability to pay

    4. The patient will be at the heart of everything the NHS does lol

    7. The NHS is committed to providing best value for taxpayers’ money (I like this one the best - how much is UK's only T3 manufacturer charging the NHS for the medication, which costs less than 2 Euros in some other European counties???????)

  • I would recommend anyone double and triple-checking what I said about the EU/European Courts and the Human Rights Act. I could very easily have got the wrong end of the stick!

  • You were right about the European Court of Human Rights:

    coe.int/t/democracy/migrati...

    echr.coe.int/Pages/home.asp...

  • Kitten1978 (et al) is it worth lobbying the Women and Equalities Committee? They should have an interest in this. And I agree, this is a matter of withholding effective treatment from (mostly) women because the medical establishment does not believe us when we say we are ill and/or when we say what made us well.

  • Puncturebicycle, In my view it is worth trying ABSOLUTELY ANYTHING (any organization, any committee, any person) that might help! Unfortunately I'm still not functioning 100% as my adrenals are struggling after the thyroxine treatment hell I went through last year. I won't be able to sprig into any action until I start functioning better... And yes, I'm hellishly frustrated with it...

  • Sure, I wasn't trying to draft you in! :-) I totally understand re energy and abilities.

    My partner (who is a lobbyist) suggested lobbying MPs from the perspective of this being discriminatory and voila, I read your earlier reply so I was enquiring because it sounded like we were singing from the same hymn sheet.

    I may draft a letter and do a post asking for supporting evidence.

  • It is a great idea. I wouldn't mind being "drafted in" if I felt well enough to do it. I'm generally "a doer" so I'm feeling very frustrated with still not being well enough...although much better than a year ago.

    It would be good to pull out some stats regarding epidemiology of thyroid disorders. Precisely, the fact that it is far more common among women than men.

    Our male HU members may not like it but this approach still aims to get the better treatment for us all, female and male.

    Thank you for taking action. I'm ever so grateful to all HU members who are actively doing something about it. Take care xx

  • puncturedbicycle Do you have a contact email etc for Women and Equalities Committee?

    I agree it is discrimination. I wonder if a different view would be taken if it were more gender balanced or male orientated?

    I'm with Kitten we lobby whoever we can think of...

  • I'm afraid I don't have a contact there. My partner suggested sending an email copied to all the members but my mum has been in hospital so I've had to deprioritise it.

    Even if you stay away from hypotheticals ('what if more men had uat') the facts are 1) that thyroid problems are disproportionately suffered by women and 2) thousands of us receive what we consider to be substandard treatment, which is actually suffering another blow w the withdrawal of t3 treatment.

  • Panda321 my hubby reckons that if we all chipped in a few quid we could afford legal representation. Does anyone know of a lawyer willing to do pro-bono...is that what it is called?

  • Some time ago on TPA website (Thyroid Patients Advocacy) there was some talk of persuading a volunteer on benefits to put forward a legal case concerning NDT, but nothing materialised. Funded by legal aid.

    There's no way I could qualify for legal aid and simply cannot afford to risk losing tens of thousands £'s putting forward a case myself.

    It would only be possible if there were MANY generous donors or a multi-millionaire with Primary Hypothyroidism could be found.

    The case for the retention of T3 on prescription for PH is even more compelling that that for NDT.

    I have recently sent the following to Donna Gillespie-Greene

    ,Head of Medicines Commissioning, Cheshire and Merseyside Hub, Midlands and Lancashire CSU. She is overseeing my complaint about the blacklisting of NDT in this area. I hope this amuses you. She didn't answer!

    "Further to my email of 10th April in which I mentioned the crazy idea of the NHS to blacklist liothyronine (presumably this does not include continuing use during RAI).

    I now wish to bring to your attention an interview with Dr. Antonio Bianco who co-chaired an American Thyroid Association task force that updated the guidelines for treating hypothyroidism.

    peoplespharmacy.com/2015/12...

    You will find this most educating and proves how damning this is against the UK Clinical Commissioners. They apparently believe it is quite acceptable to condemn thousands of patients to ill health for the rest of their lives in order to save a relatively small amount of money whilst maintaining that patients can simply start taking levothyroxine again, the very same medicine that makes them ill.

    Why not admit it and accept that it is the increased cost which has initiated this fallacious recommendation.

    I hope you manage to sleep at night; I would not be able to in your job."

  • Well done Panda321 Well said! Keep up the good work!

    And unfortunately, most of us cannot afford to take on the big bods, legally, but if we could just find someone with some b*** who would be willing to take it on for free, to make a name for themselves/company maybe???

  • I lived in adrenal collapse (couldn't walk) for 16 years. I can't take pain killers so developed central brain sensitizeation! I had to go to Mexico to be properly diagnosed and get liothyronine. Finally I went private and was given gabapentin. That changed my life. Been off my liothyronine for months one of which i was in a warm climate. Now I'm up one day then spend 2 in bed. I see a downward spiral into hell in front of me. I try the private prescription route and go to France would you kindly tell me where to go in France please. I am also investigating a rumour I heard that one can buy it over the counter in Greece, anyone any thoughts on this?

  • I believe you can buy liothyronine otc in Greece and Turkey.

  • Thank you for your reply. Noted. I have had good news on that score but leaving Europe union might change greeces ability to legally sell, who knows but if I must to survive then that's the route I will take. My heart ❤️ is so grateful for the care you all show,thank you so much.

  • Mena,

    A medical employee will soon be going to Iran on holiday and has agreed to find out if T3 is available OTC, and at what price. 🤔

  • Thank you for reading and responding londinium. All information is valuable and gratefully received. Thank you. Maybe with all this information I might be able to help others,as well as myself.

    Please would someone tell me how to have a " private" conversation here. I am very computer illiterate and suffering cognitive problems now. Spelling it out is fine.

    Thanks again londinium, I wait patiently.

  • Click on the member's name. And then click Message. 🤔

  • Thank you💕

  • i have pm'd you ref french t3

  • hi Pinkie would you be a sweetie and say that in long hand for me.

  • you can take a uk private prescription and fill it at pharmacy in france, i have done it twice now 3 months worth and the pharmacy didnt keep prescription so i was able to fill it at another one, getting double, so i have spare in case, i always get cynomel not a geberic and its 3 euros a packet. I have also been able to buy it over the counter. You can buy it over the counter in greece, cyprus and crete. I have friends who go once a year and stock up. x

  • Have you checked out the ITT Campaign on Facebook?

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