Liothyronine no longer under threat - it's GONE

I am posting this as a separate post from my earlier thread Liothyronine under threat, which attracted much interest.

Update. Have been rung by the surgery today to say that they have made the decision no longer to prescribe liothyronine. They can refer me to a private endo and of course that means I shall have to pay. I have an appointment to see them next week but it will simply be to inform me, not to offer any other solution, despite the fact that I can't tolerate levo.

I'll report back after I've been and after that I guess it's letter to CCG, MP etc though none of it will do any good. To say I am appalled would be an understatement. I feel vulnerable and anxious, not yet knowing whether they will undertake any thyroid care once I am no longer on medication they prescribe. Utterly devastated that they can say they will refer me privately (at a rough cost of £8-10k per annum at UK prices including endo consultations) What happened to NHS free at the point of need? In my case, I cannot tolerate T4 but they offer nothing else. Yes, I know that I can obtain meds from abroad but a) why the hell should I have to and b) that isn't my choice unless I must.

More news as I get it.

76 Replies

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  • Scorp1o,

    Ask your practice to provide a written explanation for their decision to withdraw Liothyronine.

    Do you know where to source T3 while you are appealing your practice's decision?

  • Thanks,I will. I purchased some from sources recommended by users two months ago just in case. Good job wasn't it?

  • Would you kindly private message me reliable source for t3 please? Thank you x

  • See my update for why this is no longer a viable route. They have no choice.

  • I know how you feel, the same has happened to me, I have aplied and appealed to my CCG and been refused twice... I also am not able to tolerate Levo. It seems to have impacted my confidence and made me feel very vulnerable, I don't understand why. I think I'm still in shock that a medication I have been using for nearly 10 years has just been stopped, and the only alternative I've been given is something I can't take that makes me feel worse than the hypothyroidism. It is shocking that this is happening up and down the country......

  • Isn't it. Makes me feel so vulnerable too. Watch this space. It may have to be a petition next.

  • I feel your pain. I suppose you will have to follow the online route, like me.

  • At the start of July I was referred by my GP to a consultant (couldn't wait the 6 months) so paid £200. He is agreement with me and my GP that I am allergic to Levo and should have T3.

    Spoken to GP today who tells me that T3 is 'red listed' and he cannot prescribe it. As I have been feeling like poo I bought Raw Thyroid online from abroad. This has helped a little, but I don't expect it to be a permanent solution. Can you tell me where I can get t3 from without a prescription please.

  • Can I suggest that you speak to the pharmaceutical advisor of your CCG or to the chair? I understand that must CCGs are still prescribing for those with clinical need and yours have been proven. My GPS also told me it was red listed but this was not true,as congruence by CCG,though if may be in future. PM follows re T3.

  • I'm just waiting for imports of T3 and NDT to be banned next. Then they will tell us we need anti-depressants, statins, and anti-anxiety meds, and will be told that we are mentally ill because naturally we aren't really physically ill it's all in our heads.

    And one comment about CCGs - GPs blame them for not being able to prescribe certain drugs, but the people who make up the bulk of the important members of CCGs are actually GPs themselves. So GPs are effectively blaming themselves.

    Edit : I should point out I'm in a highly pessimistic mood today, in case anyone couldn't already tell...

  • I'm with you....

  • Make a formal complaint to the CCG, you are entitled to do this. The fact they offered a private prescription gives you a lot of clout as they have effectively admitted you need it.

    Visit your MP, writing is no use. This will have to be after the referendum as MPs are tied up with it (whether they are interested or not, party policy).

  • Good advice jimh111.

  • Yes I realise that it would not be any good at present. I'm away for two weeks anyway so it will have to wait.

  • m.facebook.com/story.php?st...

    I'm so upset with the Nhs

  • Best wishes to you, I hope you get satisfactory answers. x

  • The same happened to me with NDT about three years ago. If the worst comes to the worst, maybe you can do what I do which is to have NHS endo appointments and NHS blood tests but to get private prescriptions free of charge from the NHS endo. That way I still have to pay for the actual drugs (about £50 per month but constantly rising) but don't have to pay for any of the appointments or admin.

  • I guess that may be possible. Shan't know until I've met with them. But there is no way on earth that I can pay over £700 every 4 weeks,which is the retail cost of this drug. I don't think anyone should have to!

  • This is what all of us on T3 absolutely dread. It could have been me writing your post, with all the feelings of anger and disgust at the NHS. Why should we have to source it ourselves from abroad?! In the grand scheme of things £250ish a month is not that much compared with other medication for many illnesses that the NHS is prepared to fund. It just seems unbelievable that they can withdraw this VITAL medication from us. As of now I am still being prescribed T3 from the GP, but it is a constant worry. Probably not helping the problem I'm having with palpitations! BTW I have sourced liquid T3 (Liotir) from Italy as we have friends who have a house there so in theory I could get it regularly. You can buy it over the counter (only one bottle at a time) and it cost 13 euros for a 20-day course. I have tried it and it was fine, no bad reactions. In the meantime, good luck with your fight.

  • As someone who is possibly about to go onto T3 (have high RT3 values) this is a worrying topic as I need to get my meds right to get back to work ........

    I wonder if there is a "no win no fee" law firm out there that would consider doing a group action against the NHS to try & force them into prescribing this again ......

  • I'd be surprised if you were able to get onto it now, since prescription hs been effectively banned. See my update.

  • Hi there - I’m new to this forum but not to Hypothyroidism. It’s always been the same, ever since I was diagnosed by my private doctor in 1992. Any NHS GP I’ve spoken to has said they can’t and won’t supply anything other than synthetic T4 no matter what, (it used to be Eltroxin from Goldshield - don’t know what it is now), and the excuse I was given is that the prescribing GP wouldn’t be covered by insurance should anything happen to the patient if they did so and natural meds. are unreliable and don’t work!! This is standard gobbledegook and it won’t change because of Big Pharma. The NHS think that less than 2% of the population is effected as opposed to probably nearer a third, and you need to be half dead to be considered a candidate for a product that doesn’t work for a great deal of us anyway. The NHS only understand 2 things - ‘drug and cut’ – they don’t appear to have any knowledge, consideration or understanding about any other treatment, nor care to do so, are not interested in using their ears and eyes with regard to patient health, only blood tests, (which are frequently unreliable), and are particularly lacking in knowledge of how important correct nutrition and gut health is for optimum operation of the whole body, and for some reason the thyroid seems to be a particular ‘taboo area’. I wouldn’t even bother with the NHS with regard to this problem. I have been lucky enough to get some help from this group with how to purchase T3 from a reliable source since requiring meds. again after a 4 year gap, (long story), for which I am extremely grateful, and I’ve just started taking 25 mcg today. I really think we have to look after ourselves because the establishment sure isn’t going to.....

  • I have just had my meds withdrawn and been told my levothyroxine has been increased by 25microgramms so "I won't have any issues not being on combination therapy". I was also told that they wouldn't be willing to write me a private prescription for my combined therapy. I am dreading how I am going to feel and the weight gain that will inevitably happen. Its shocking that they can just do this 😠😠

  • And sadly, you're absolutely right.

  • Hello scorp1o,,,, I supported the petition,,and have followed the progress of the whole issue of removing medications from the prescribing lists,,,it would be interesting to find out what other reason they are giving other than 100 tablets cost £900, so I have read, more details will be needed to find out more,,maybe the national news papers might pick up the story and run with it,,,,

    Have been in contact with the Thyroid Patient Advocacy,,,,a small UK Charity they might be able to help.

    I am posting this information which I got from another web site,,but I cannot remember which one,,sorry

    " Thyroxine T4 mostly inactive thyroid hormone.people are unable to convert T4 into triiodothyronine T3 which is active version of hormone, and what the body actually needs to function properly. Liothyronine ( L - T3) synthetic equivalent of T3, and is essential for anyone with conversion problems.

    PrescQIPP, wrongly claiming synthetic T4 (Levothyroxine (L-T4)) is suitable treatment for everyone,--saving NHS money, but not the case,,costing more money in the long run".

    I think I followed the pages from a site called About Today, just in the last few days,,, I hope tghis may help you to get more help,,,ttfn from Karen.

  • Please make the charity aware of my latest update below and let us know what they say? Thanks.

  • Does anyone know if there are any petitions for t3 withdrawal? Also, after appealing through ccg I wonder if anyone has been approved??

  • Appeal to the CCG would now be pointless since they are bound by the national guidelines re approved drugs.

  • Hopefully you can find some ammunition, in one or more of these documents, to help your case.

    This site nahypothyroidism.org/thyroi... explains why testing TSH levels is unreliable and why prescribing T4 is likely to be inadequate treatment, particularly in association with certain physical or medical conditions. It also provides links to supporting research.

    This research ncbi.nlm.nih.gov/pmc/articl... explains why testing TSH concentrations is inadequate and how reliance upon T4 monotherapy inadequately addresses therapeutic needs.

    Research ncbi.nlm.nih.gov/pubmed/119... shows that appropriate levels of T4 may not result in an appropriately normal serum free T3 concentrations.

    A 2005 study by Dr Lowe web.archive.org/web/2010103... explaining how the misinformation on thyroid hormones came about.

    A study verywell.com/t3-superior-t4... shows that the addition of T3 is superior to Levothyroxine/T4-Only

    Dr Malcolm Kenrick on the NHS treating its thyroid patients as children drmalcolmkendrick.org/2015/... Check out his postscript for how people in need of treatment are often misdiagnosed because the meidcal profession lacks adequated training/understanding.

  • Really helpful, thank you.

  • Right, here is the latest position. It is of absolutely no use to complain to the GP, CCG or MP since NHS England have now followed the PresQuipp recommendations and withdrawn T3 from the approved drugs list. No NHS practitioner may prescribe it under any circumstances because they would lose their licence to practice.

    MY GP is underactive herself and is highly sympathetic, acknowledges that I cannot tolerate nor benefit from T4 but her hands are tied. They won't even fill my latest scrip so my meds run our in 7 days.

    Following the advice of others on this site I obtained supplies last month from a source many of you recommended at a fair cost (£40 for 150x25mcg tablets) so I am ok for now. However, that does not address the feelings of betrayal and shock I feel. I am not one who would naturally source from abroad online and I feel very unhappy about it.

    I am in France for the next 2 weeks and will try to obtain supplies there as friends tell me they can without prescription. We shall see. Whilst there I hope to settle myself and think over what, if anything, I might do. Let's put our thinking caps on and possibly start a petition once I'm back, which we could all share. It is an appalling situation. The NTA have not helped since they do not recognise T3 as an effective or safe treatment.

    Surprised at how upset I am about this.

  • I would book two weeks in Greece next time - you can buy as much T3 as you want without a prescription - and without questions or judgement :-)

    Greygoose will give you advice about buying T3 in France - she lives there :-)

  • How do I reach Greygoose? Thanks.

  • Click onto Thyroid UK at the top of the page. then scroll down and you will see a link for Search More Members - click. Then write greygoose into the Search box provided - and her name will appear. Click onto it and you can send a PM :-)

  • Am appalled. Will definitely support any action, petition, whatever, you want to take.

    Wish I could travel abroad to buy T3, but my health problems are too severe.

  • scorp1o do you have any verified links for this information or are you relying on your GP to know what she is talking about. I have tried to find something more up to date than the recent furore from the papers but only official stance I could find was the May 2016 PrescQIPP DROP list. This doesn't mean it can't be prescribed just that it is not encouraged. Local ccg may well put the brakes on but it is still possible to get L-T3 on prescription as far as I can tell. Unfortunately, because the NHS is so 'last century' and hasn't a clue, it is getting nigh on as difficult as catching a live Dodo.

    Perhaps if we all succeed, in our clamour for that generic drug loophole to be closed, chances will improve.

  • She's pretty clued up and she was adamant. She wouldn't make a mistake on this as it affects her too. Haven't got through to the CCG yet.

  • as a gp her hands are tied (and her tongue) to NHS practice. She could be struck off for suggesting anything contrary, and many have.

  • Just spoken with CCG and she said this IS their position for new patients but for existing it should be business as usual!! Am new awaiting further contact. Have asked her to ring surgery. Watch this space!!!

  • Hopeful!

  • Sorry, but how can this be ok? Not wishing to deny those people already on T3 they should of course be able to continue on it. But new patients may be just as much in need of it.

    I am not lucky enough to have been prescribed but it sounds like the door has been shut! 😣

  • I am in full agreement Musicmonkey and it sucks but obviously I was primarily concerned with my immediate crisis. The prime driver is cost without a doubt but at present it seems to be a local CCG driven decision and no national statement has been issued, contrary to what I had been told by someone who ought to know better. What galls me is that is wasn't nearly so expensive before the NHS allowed a monopoly supplier to take charge and thus raise prices. This is happening with lots of other drugs too and it stinks. Sorry not to be of more help but there we are. That's the world we live in.

  • Musicmonkey,

    Your CCG is not bound by the decisions made by Scorp1o's CCG. This is a local prescribing decision, NOT a national prescribing policy.

  • Unfortunately Clutter, my CCG aren't prescribing T3 now either, nor is the neighbouring CCG where my Endo works 😕

  • Musicmonkey you are preaching to the converted on here, there are many who know full well the hell of being misprescribed. Read through the links I posted earlier and see if they don't provide support for any argument you want to take up with your gp or endo.

  • linlow ??

  • if you search my name in this post, in my first comment I provided links to half a dozen documents that explain why T4 alone is not the answer to thyroid issues and can, in some circumstance make matters worse. Your saying that you haven't been lucky enough to be prescribed T3 suggests that you feel you might benefit from it. I was suggesting that some if not all of the information in those links might help you fight the ccg for it.

  • that smacks of clinical negligence to me. If you (or the person affected) read the links I posted earlier and the multitude of further documentary evidence available on the internet it is obvious that levothyroxine is not always the appropriate treatment it is held up to be. That makes it 'the wrong drug' and giving 'the wrong drug' is grounds for litigation!!!

    Does anyone else think that they may not have thought this one through?

  • I've messaged you Hillwoman. I am not travelling specifically to buy, just taking advantage of a planned break. Have sent details of a company several members recommended. Hope that helps.

  • Thanks. Have responded to your PM.

  • Does anyone know if a gp would even write a private prescription assuming that cytomel is no longer an approved drug? As some suppliers need a prescription and if you do go abroad, does that mean to have to pay for your own blood tests etc???

  • If you visit Crete - where I live - you can buy T4 or T3 OTC without a prescription .... blood tests not required.

  • Marz which particular incarnation of liothyronine is available in Crete?

  • Uni-Pharma 25mcg :-)

  • I'm not sure whethere the GPS would write a private scrip. Since I have no intention of paying UK prices I didn't ask. But she will continue to monitor me exactly as now wherever I get the T3.

  • Is that specifically cytomel? I seem to have bad reactions to any other forms of liothyrinone??

  • And the very latest news is even more gob-smacking. I am relieved to post that the pharma advisor from the CCG was as good as her word and contacted the surgery to explain that they had got their wires crossed. It is my CCG policy not to put new patients onto T3 or combinations thereof but existing patients can still be prescribed. She texted me to say that the GP would now issue a prescription for my current request (though I may not be able to get it filled in time sine pharmacies around here do not routinely stock T3) and that I would have to see and endo, which I had already asked for anyway.

    So it appears that I have been given totally wrong information, told it was government policy when it wasn't and, in short, frightened half to death for nothing. I cannot determine yet whether this is sheer ineptitude or blatant misrepresentation. Either way I am disgusted and also very sorry if I have equally scared the living daylight out of others. It was all in good faith I assure you - since I do not tell lies I expect professionals either to be honest or to to be well-informed when they speak to me on so important a matter.

    It may well be that in the fullness of time whatever endo I see does not agree that I am not suitable for T4 but that's a way off just yet.

    May I apologise once more for scaring anyone and I shall continue to share my experiences when I finally get to the next stage. I am more than grateful for the support and messages which I've had. They are much appreciated.

  • don't despair yet, my NHS endo prescribes T3 for me, though my surgery won't (on the say so of the senior partner)

  • Encouraging.

  • There you go...that's a lesson.

    DON'T RELY ON ANYTHING A DOC. OR ENDO. SAYS

    check it out yourself.

    A GP Can prescribe ANYTHING ,including Whiskey, as long as its not on the NHS BLACK drugs list. (This has nothing whatsoever to do with CCG's traffic light colour system! which they can choose to ignore)

    end of.

    no more discussion needed....just threaten to sue your GP personally, if they fail to care for you.

    suggest you click on my image, go to profile and read through ALL my posts.

    Print off loads and use it.

  • Well I have to say that I can only agree with you. She told me that it was on the black list now. Simple soul that I am, when a GP, with whom I have had a long-standing relationship and whom I trust, tells me something, I kind of assume they are telling the truth. How stupid am I?

    I shall have to see what develops as I understand they are only willing to supply one scrip to tide me over until I have seen an endo. Should that endo not agree T3, I am back to square one. Hence I have asked elsewhere on the site for recommendations for private endos who may be more willing to consider as I fear I shall need the backing of a name.

    Really, who needs this degree of aggravation? Is being unwell not enough to contend with. Apparently not.

    Thanks for the contact. Will read through your stuff. Meanwhile, if you know anything about whether Uni Pharma T3 is as good/not as good as mercury T3, do let me know. Thanks.

  • Scorp1o,

    You shouldn't assume a GP you have a good relationship with was lying to you or misleading you. She was probably misled herself by one of the senior partners.

    I hope new patients denied T3 sue your CCG for discriminating against them. Patients should be prescribed drugs based on need, not the calendar date on which they applied for it.

  • She is a partner......:( Given the CCG response, and the unequivocal information from the pharmacy that they have been told to stop ordering as it's too expensive, I can draw few other conclusions I'm afraid.

  • Which brands of T3 are the best - thyroidrt3.com/which.htm

  • And again, thanks!

  • Hi,

    I am still looking into a March to Downing Street later in the year although would have to be 100's of us to make an impact.

    I still need to talk to Lyn Mynott about a petition to hand in too and what this great lady also advises about it but had a really bad blip over the last few weeks due to change of medication too. I'll be back on it as soon as I'm not feeling quite so dire.

  • Hope you feel better soon.

  • That all sounds encouraging, still holding my breath here thou? could I ask what area you are from scorpi0-? 38 degrees already have a petition on line about liothyroninehttps://you.38degrees.org.uk/petitions/don-t-drop-liothyronine-from-the-prescribing-list-we-demand-a-public-inquiry-instead

    I am still confused though why they are even dropping it if related to price as I contacted the cytomel supplier and on a private prescription It seems I could easily get it for a fraction of the price in canada? so I know this may be a silly question but if we can all source our own T3 at a fraction of the price why cant the NHS? and is cost the real reason here??

  • I suspect because the NHS is too bureaucratic ands politicians have shares in God knows what organisations but I'm a cynic. I live in Staffordshire and the current price for private 20mxg is £389 for 28.I haven't seen the outwitting and an away for 2weeks with limited WiFi but will search when I can. Thanks for the info.

  • My endo described this as scandalous - and this was when I told him I thought it cost about £260 - but £380??!

    He said it should be possible for pharmacists to source a much cheaper brand of Liothyronine from a company which specialises in importing medication. Apparently the imported Liothyronine is not licenced in the UK but that does not mean that it cannot be dispensed? So who would we lobby for this to happen?

  • Interestingly, Boots (where I got mine from in a hurry and they were very helpful) are now also providing 25mcg tablets at £116 for 30. New supplier (and also doing 5Mcg now at horrendous price) but as my Scrip was for 20mcg it was no use to me. This is a new development so perhaps they are doing what you suggest.

  • Does anyone have any more recent information on the situation regarding the prescribing of T3? I am in an identical situation to you scorp1o, my GP says she can no longer prescribe (she has been doing so successfully for the last 4 years). She doesn't even seem to know why and did not know about PrescQIPP action or the price hike! I am waiting for referral to an endo. I want to take some positive action but don't know where to start or what's best to do - I wondered if there is a petition imminent or whether I should visit my MP.

  • I think the situation is still as I described it: NHS England via PresQIPP are reviewing the prescribing of more costly or easily available meds (ie aspirin,paracetamol, as well as T3 and suchlike) but as yet it is up to your local CCG to establish local policy (contrary to what my GP told me). My CCG have said no new patients to go on T3 but existing patients with a clear clinical need can continue (at least for now). That means seeing an endo (I too await an appointment) and hoping they are T3 friendly - which may not be the case. Or alternatively, demonstrating another clinical reason. In my own case, the local CCG has had a massive drive to reduce and more effectively medicate Atrial Fibrillation, as it is a major cause of severe stroke. T4 causes me to have regular and prolonged A Fib, as opposed to the paroxysmal (occasional) bouts I get now and I have a letter from my cardio to say I'm best on T3. So that's my second line of defence if the endo proves useless.

    My advice would be to contact the pharmaceutical advisor of your local CCG (mine has been very helpful) and ask for their advice re the prescribing of T3 and then take it from there. It may be that your GP, like mine, has misunderstood/misinformed you. If all else fails, we shall all be buying from abroad I guess.

    Hope this is helpful.

  • Thanks scorp1o. Good luck with your endo appointment, it's good that you have back up from your cardio in support of T3. Let us know how you get on. I have already got information from Coventry & Warwickshire Area Prescribing Committee so knew more about the situation than the GP did! But thanks for the advice, I will contact my CCG pharmaceutical advisor as well.

  • Dear All, I know this thread hasn't been active for a couple of months but I was told last night by my GP that they would no longer prescribe (or honour the existing prescription) for my Lirothyronine as the CCG (Mid Essex) won't pay for it (though interestingly the CCG website says that they recognise that existing patients may be better off remaining on it - I will be talking to them and my GP later). I have Hashis, no thyroid left, do horribly on T4 only and have only 10 days of T3 left. I have a friend who imports Thybon from Germany (lactose free T3 made by Sanofi) for the specials market but I have to see if either the GP (though they wouldn't entertain the idea last night) or the Consultant will be prepared to give me a specials prescription. If this doesn't work, I hoped that someone who has been able to obtain T3 through other methods might please message me? Thank you in advance.

  • I would ask for a referral to an endocrinologist and if that person says you should be on it, they should honour it if the CCG approves. That's what happened to me. They aren't happy but they are doing it. Contact the pharmaceutical advisor of your CCG and explain the situation, say you're happy to see an endo but request that your scrip be honoured until then as cutting you off dead is unfair. They should agree to this. Then go to the endo armed with anything you have in the way of evidence - test results, other associated conditions etc. If you have a sensible discussion and appear rational and informed, you stand a good chance. Good luck.

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