Another attack on prescribing Liothyronine!

NHS funding review for gluten-free food

bbc.co.uk/news/health-39413915

This is on BBC news today and Liothyronine (T3) is top of the list for prescriptions with low clinical value.

This is surely just based on cost. When is the Government going to address this?

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86 Replies

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  • My guess is never.

  • Just seen it myself. It does cost the NHS a lot but that's the fault of the manufacturer.

    How can they say it's a low cost item!

  • I saw this this morning and just came on here to share it but you beat me to it! :) Thankfully I live in Scotland so this won't affect my current prescription but I don't understand how liothyronine can be classified in the same category as sunscreen...

  • Exactly hypohim!

    I can understand suncream, vitamins etc.

    I can also understand gluten free food vouchers in certain circumstances.

    All of these things can be bought in high street shops.

    Liothyronine is a genuine prescription only med. it's blatantly obvious it has made the list purely based on the fact that is costs £9.22 per 20mcg tablet! They should be addressing the supplier/seeking another instead of penalising patients!

    Disgusting!!!

  • Totally agree!

  • Many people are having to pay for medicines for conditions they cannot help. Because they are not potentially fatal.

    This can amount to quite large monthly outgoings. With Gluten free becoming increasingly available, this needs to be reviewed. Most of us using suncreams and taking vitamins etc are buying them ourselves anyway. T3 being 'banded' with this issue is scary and crazy! I worry that this is a sly way of slipping t3 off the prescription list. How many people tonight, think t3 is one of these 'cheaper over the counter' medicines? How many have linked it to previous articles about the hiked up price of it? Probably only us, who need or might need it.

  • How many people actually get prescribed liothyronine? I bet it is not many although due to the forum some will have been requesting the addition. The recent exhorbitant cost has given a marvellous excuse to stop prescribing but the majority of users, I believe, are women who have enough to contend in life and it is these who will be punished.

    The fact also is that these authorities have also pushed natural dessicated thyroid hormones out of the prescribing and that wasn't because of cost but because of the promotion by the pharmacuetical companies' big push to get levo alone to be prescribed. Never mind that False Statements have been made about NDT and many recover with that alone. It used to be prescribed and patients now denied and some source their own when it would be more convenient to get it from the local chemist.

    I am one person for whom T3 is of high clinical value and levothyroxine awful.

    We are up against the big guns because educated doctors have decreed it is of little value but new research has also shown T3 is of value especially when added to T4. So for many people who aren't too well on levo alone, they may have a life-changing experience when T3 is added.

    I think it is cruelty personified that compassion has gone out of the window and I know of one woman who committed suicide and left a letter for the Coroner. Was this letter passed on to the medical authorities? Several members have been driven to the edge due to not being on replacement hormones which suit them but have to have extra prescriptions for their disabling clinical symptoms which are thought of a 'unconnected' to hypothyroidism. A prescription for anti-depressants are issued quicker than one for some T3.

    Considering that the brain contains the most T3 receptor cells and our whole body needs it to function, why do they never test the Free T3 but only TSH and T4? Why do they stop increasing dose according to the TSH but not consider relief of patients disabling symptoms and to continue increasing until the patient is on an optimum?

    Why add more stress to people who have benefitted from the addition of T3 or T3 only.

    Why are we not believed, and dismissed as having some sort of mental aberration because we know the effect it has on our bodies and we feel well once more after years of misdiagnosing, undiagnosing and umpteen visits to the doctor who, by now, is fully convinced we are delusional.

    With statements like those being issued by the 'Associations' how can they possibly know the benefits better than the patients? They answer is - they do NOT.

  • I'm prescribed T3. I didn't really have to fight for it much either so I was incredibly lucky.

    My GP has since increased my dose to 20mcg (Endo prescribed 10mcg and said I wasn't allowed anymore)

    I actually don't mind buying it from overseas as in the grand scheme of things it's not that expensive. I think it was about £90 for 100x25mcg tabs. My only concern about ordering it myself is, is it genuine? What's in it?

    It is ridiculous that you can walk into a pharmacy in Greece and buy it over the counter for a few euro, but the NHS seemingly refuse to find another supplier for it. Why are they allowing big pharma to rip them off so blatantly? £9.22 per 20mcg tablet is an absolute outrage!

    Patients should not be penalised, big pharma should be sued for extortion!!!

  • Doctors an prescribe T3 on a named-patient basis but it's all down to them if we take too much or have severe problems. They wont chance it. Considering that Cytomel, Cynomel have been dispensed for years without any problems they could easily withdraw their objections.

    We shouldn't be penalised because one medication makes us feel well and insist we take another which makes us very unwell. It just doesn't make any sense at all.

    I'm sure the NHS could refuse the suppliers price and also investigaste why they're being ripped off.

  • Could i ask how you find the T3 works better than Levothyroxine? I am on 150 of Levo but still cannot say i feel like a human being - have other health issues as well - but having forgotten what it is like to feel normal, does the T3 on it's own have a significant impact? TSH - only thing health authority in the area does was 0.9 on last test. Be glad to hear your views.

  • Unfortunately, it's not as clear cut as 'NDT' or 'T3' or T4/T3 combination will work better. It depends on how our bodies work with particular makes/brands of NDT, T3 or T4/T3. I've tried all of them plus combinations. I've also had problems with UK T3, not at first but there was some change within it - it's usually fillers/binders that may be the problem in any of them. Also the suppliers ran out of T3 - so nothing is easy for us.

    However, as you are taking 150mcg and new research has shown that many improve with the addition of some T3 (I've read it should be a 1: to 3: combo i.e. T3/T4) so, I'd suggest you source your own T3 (you'd need to put up a post asking where/how to source it by a Private Message). You can then judge if you have an improvement but you have to give sufficient time to the trials as it's not usually an instant turn-around.

    Reduce T4 and add T3. That would mean you still get levo on prescription and you can also tell your GP what you are doing if you so wish.

    You certainly know the difference when it works for you as clinical symptoms go, you feel well and energetic. Not feel as if you are half-dead with a myriad of symptoms as well, with doctor prescribing something other than thyroid hormones. Ignoring our symptoms by saying 'your on sufficient hormones as your TSH is 'normal' never mind its at the top of the range when it should be near the bottom.. That's all they seem to be taught. This may be helpful:

    web.archive.org/web/2010112...

  • I found whatever t3 they were giving me was starting to show signs similar to when I took t4 - migraines and fibromyalgia starting up again. (Could be that adrenals are low at present). With problems getting t3, chemist eventually sourced from Thybon Henning? Difference was almost immediate- I was a bit worried as tablets were 3x size of others I'd had - did not know make of others - in generic tub - no brand on. I thought the T-H ones may be packed with fillers, but they seemed so much better. Told Chemist, asked him to get same for me again. Very next month, back to 'other' unknown brand. Even gave me some to 'use first' as short date! Wish they would stop messing us around!

  • It's not fair to keep chopping/changing make of our hormones. We cannot then get to a level/dose if they do so.

  • I think it is a ploy so they can turn around and say 'they are not working' so won't prescribe them...current climate?

  • Shaws,

    In the minds of these 'doctors' whom I consider to be charlatans and quacks merely masquerading as real doctors), we are presumed to have hypochondria - not hypothyroidism. ☹️

    As for the consequences, just look at me: decades of non-diagnosis and non-treatment by these medical quacks and charlatans, resulted in chronic add severe high Cholesterol and Lipids and arteriosclerosis; the remnants of which are exhibited in my eyes because of the long neglect by these charlatans and quacks who want to continually lecture us about what is and isn't correct diagnosis and treatment. 🤕

  • I refer to my earlier posts this evening - why does the NHS not do so ?

  • I take 50mcg a day - was on 60 but change of Dr -review - reduced it. I'm struggling. Have had stress related adrenal issues so currently trying to get back on track. But I know at 60 I was at best I have ever been - had a life!

    My chemist tells me it is nearly £300 a month for mine - tells me all too often! Like I'm to blame for this? Getting fed up of being made to feel guilty and a burden for something that is not of my doing, and if I had had the right treatment 35 years ago -maybe I might not need to be on t3 now!

    The big question there is why is it only here in UK that these massive prices apply? In another post on this thread I have outlined my thinking and to me it a plan by 'whoever' to get rid, once and for all of t3 from prescription meds. As I effectively (I hope) said in other post - why would someone buy out the drug and then price it out of the market? Are they aiming to bankrupt themselves - makes no sense.

    I would object to paying for this medication on several grounds -

    I have a condition deemed serious enough to be listed on the Free Prescription Exemption list. Because it is potentially fatal.

    I am not working. 35+ years of Ignorance and mistreatment of my condition left me unable to remain in a job that I struggled, with symptoms, but trained hard to qualify for.

    I am lucky in that I have a husband who is earning and supporting me. He has serious health issues too -again much due to misdiagnosis and mistreatments, again for a great many years. He is struggling on. But for how much longer we don't know. Others are not in a position to pay. They must be considered too or only the rich will survive..and where does that end!

    I am already, and have been for some years, been paying out quite a sum on a regular basis for supplements - such as adrenal/thyroid, and various recommended vitamins and minerals.

    My son is now struggling and getting the exact same responses that I, and his dad, have been getting all our lives, in my case, despite proving for a fact that I do have this condition and that t3, only, is what works best for me. It is generally the only thing I do get on prescription. We are now paying out for supplements to try to help our son too.

    I am aware that, financially, as a family we are in a better position than some, but our finances are not a bottomless pit by any standard and far too many people are not in a position to be able to pay for this 'life saving' medicine.

    You are right, the powers that be should be sorting out big pharma. Why are they not doing so? I refer to my earlier theory/ideas.

  • I think you should copy and paste the above as it a new post as it will be lost as this link is now some days old.

    UK T3 (only one licenced) used to be about £28 per month (I believe). Each time the the company was bought over caused a hike in the cost until today's exhorbitant one.

    Pharma companies have done this for other medications as well worldwide.

    If we have money we may also have health insurance so no restrictions on our prescriptions. If we don't have money as many members are unable to work, you remain unwell and have a miserable life and up against the odds.

    They will also not prescribe NDT which used to be the only ones before the big push with levo and blood tests so I think both has made a fortune for the pharma companies. That may be fine if levo works for them but if their doses are restricted they may end up with heart disease etc. NDT is also called a 'grandfathered' product due to it being in use in some form since 1892 up until the 60's when levo was touted as 'perfect' replacement.

  • I remember decades ago -searching for any information that would help, it took till this century for me to really find anything except a little booklet, probably written by the medical council - Wonder if I still have it - T4 is all you need stuff. Rubbish!

    I think it must have been growth of internet that led me to Dr P/ Bhroda Barnes etc - remember buying book - being amazed at the information out there - that DR's ignore! And actually do not have any interest in knowing.

    I remember reading about how NDT was introduced by a Dr who was recognising too many of his female patients were suffering and dying prematurely, with no obvious reasons. He started doing autopsies, and discovered they all have shrivelled thyroids in common- hence started issuing Pigs thyroid to future patients - and having success. It was then used for many years to great effect, until someone came up with a cheaper option. One of my big bug bears is when you read that there is no evidence to prove that NDT is any more effective than synthetic, or that there is no evidence that synthetic is any less effective than NDT. When there is no evidence because it was never tested and compared - but people reading this propaganda will be misled by this wording. And 30 - 50 years on are still being misled!

    I have heard the 'grandfather' term before, and this push to remove t3 smacks of the same. This is what really worries me, being on t3 only for some years now. And it being the only thing that has worked in 35+ years!

    How narrow minded these Dr's are to assume that one drug will fit all. To me they cannot possibly be that stupid? Since when has any one thing suited all? They know more about thyroid conditions now, than ever before, yet choose to still spout the outdated, narrow minded party line!

    Surely there is some code within the ethos of the NHS that they are breaking by refusing to help us beyond increasing/decreasing doses of t4?

    The last I read, and it is a while ago, things many have changed, was that somewhere - Netherlands way maybe - had been doing tests involving t3 and it was showing favourable results in favour of using t3.

    I'm fairly certain that I have also read somewhere - if my memory would only work so I could remember where! -that thyroid conditions are on the increase. A friend also mentioned this to me earlier this week. I'm wondering if there has been some environmental effect, or such, and it is only just starting to really show. Lets face it, all these innocculations we have had to have as babies, TB jabs etc, growing up - it is not as if they haven't jumped the gun and made mistakes before. And with increasing use of pesticides, plastics etc...

    With the increase in people suffering with Asthma too - I have a 'theory', if I can call it that, that maybe an episode of 'lack of oxygen' may have some impact on the onset of hypothyroid. I, apparently, turned blue when a few days old. Mam rushed me to the nearest person to help - a 'faith' healer, because, in Ireland, 55 years ago - he was her nearest option. He did whatever he did, told Mam it was Eczema, and to bring me back in two years. I did have eczema, growing up. As a baby I slept an awful/unusually lot. (Mam would forget about me? Charming! - she did have 3 other small ones at the time)

    We moved to UK before the two years were up. But my son, now 22, had an episode, about 14-16 years ago - about a month or so before the 'SARs' scar blew up. We had just come back from a holiday abroad. Walking 200 yrs up the road, my son was complaining of being 'out of puff'. He was a bit hoarse, so being Fri and school reopening the following Mon, rang Dr to get him checked out. He was checked and immediately put on a nebuliser, and then taken into hospital for two nights, where they struggled to get his oxygen levels back to a safe level and keep them there. He ended up on steroids for a while. It was very worrying. He has intermittent 'asthma', and I too have had some signs along the way.

    And just writing this, I'm trying to remember where his skin changed - as a small child he had the loveliest skin - he developed eczema. Following some other 'virus' Glandular fever like, 5 years ago - he has suffered with awful flare ups. leaving his skin a real mess.

    I have been recognising the lethargy, weight gain and him struggling with being cold, for years, but he cannot get a diagnosis, no surprise, it took me more than 10 years.

    His body temperature is very low. Took him to Dr P in Jan, think it may be more adrenal based. I suspect there is something else - betting on Hashi's...probably going to end up getting private tests.

    But I am wondering if, especially having read, on here, in the last few weeks, about this 'air hunger'. Something I'm intermittently but increasingly experiencing, how much this 'lack of oxygen' may be playing a bigger part than we realise. Is it a cause or effect?

  • I think you will find this link of interest re breathing problems. The main thing, I think, about hypothyroidism is that doctors treat only symptoms and we remain undiagnosed as they usually only look at the TSH result and not FT4 and FT3. The two most important tests.

  • There was no link attached? Would be interested to read.

  • Thank you Shaws. Wow that person had some! Good on them.

    I'm now thinking that that standing joke of me 'always' yawning, which I'm sure did not look good in work meetings, hence held me back, which has been there for as long as I can remember, may well be part of this? I have occasionally been tested for asthma, but never confirmed. (My son, also has 'seasonal asthma! has had for many years...) Another missed/ignored sign maybe. With me, not so noticeable at the moment, but I am heading back in the right direction with balancing meds so maybe ...

    How many times I would have loved to 'sack' my GP. Trouble is now feel trapped and I did the next one may refuse to prescribe at all.... Frying pan and fire!

    As an administrator is there any way of doing a survey on here to get some idea of numbers as to who is being prescribed t3, who is using it by self sourcing, and who is totally relying on it. And who is relying on NDT. I think those figures would be very useful to know and if we could show a good number of people getting 'benefit' from it?

    Someone suggested us setting up a 'Liothyronine' Facebook page, to see who else might be out there.

    It just seems wrong that the NHS can define this drug as having little benefit. I'd like to know what evidence they have for that.

  • I think they use smoke/mirrors to determine what's best. I've read that all over the world the Endocrinology has been bought by the pharmaceutical companies by payments-in-kind.

    It would be hard to get a proper number of people self-medicating or using T3 as an addition of T3 only.

    Millions do get well on levothyroxine but probably they've had a good doctor who didn't stop increasing their dose when they reached the top of the 'normal' range(TSH) but let them go toward the bottom or until they felt well.

    Doctors world-wide have been pursued by prescribing NDT or T3 and lost their licences. The last in Canada - a Dr Derry. It's not their patients who do so but Organisations. It frightens other doctors in case they lose their licences also.

  • Yes, sadly I am all too aware of this being the case.

    I just do not understand how Dr's - supposedly 'scientist' who know that medicine, like any science is only as good as the knowledge and understanding of now, can be so blind to the fact that it is possible for new ideas and thinking to come to light and be proved better.

    How does anyone know anything about medicine? Trial and error - surely?

    It can only be down to the quality of the thinking capabilities of the dr's we now have to cope with. Which are so much less impressive!

    I take your point that a lot are scared to raise their heads, but then, if they care so little for their patients well being, why be a dr...prestige? Well their cowardice loses them that anyway - so must be the money!

    Unfortunately, like you say - the few capable, and with guts, soon get shot down, as soon as they put their heads above the parapet.

    Perhaps we need 'International Rescue'.

    If all these decent Dr's could come together, to organise a worldwide internet company, in one place, to offer advice for us all, and source and supply medicines for us - we could avoid the incompetent dr's altogether - Sack them!

    I don't know about others but I'd guess that c99% of my visits to my gp, over the years has been to do with Thyroid connected issues.

    T3 has been such a 'pain' for Dr's to avoid for so long, and with their determination to ignore the benefits (How did this medicine ever get approval?) I believe they are now using their lack of acknowledging and recording of the benefits, they have chosen 'not' to see, along with the (possibly orchestrated price hike) to rid them of further hassle from these 'hypothyroid people who do not know what they are talking about'.

    How many times have i heard - when I try to explain the symptoms/feelings 'It doesn't do that'....

  • As the saying goes 'Ignorance is Bliss' but definitely not with doctors who are supposed to treat their hypo patients optimally with whatever suits their patients and not for us to be dictated to by prescribing some worthless medication to treat the 'symptom' rather than thyroid hormones which suit our bodies.

  • I think we just have to stand 'firm' and say no - especially if we can say been there tried that - or - no, what I'm taking is fine and working, thanks.

    They can't force us to take something we know won't work.

    For myself, was encouraged when directed to the BTA guidelines says if on t3 and it working no reason to take off...I hope so -

    But there is a bigger picture to consider herewith potentially increasing problems. People have already had their medication stopped.

  • It took me struggling for over 30 years to get on any t3 - that was insisting and being lucky enough to have private health cover through partners work, hence referred me - eventually again, on insisting, to an Endo -who prescribed a bit. But it was through working with Dr P, with 'support' of GP (told him seeing Dr P, as nothing worked over 20+ years on t4- asked him to support me - said he would) that I ended up on t3 only. (Told GP not taking t4 again, asked why, told him was giving me all fibro and migraine) Gp mentioned risks with t3 only, told him I knew of them and knew to watch for them. (All drugs have side effects) I have not had any side effects - not in 7 years on some level of t3. Now on 50mcg pd. Was on 60mcg for a long time. GP reduced it last year, as had lost a lot of weight, (another plus from taking t3) thought it might be why so went with it.

    If you were prescribed it easily, well done! I've managed to keep it so far - do not know what I'd so if they do stop it... It is a real worry.

    The problem with trying to source it ourselves is the authenticity - what brands will/won't suit etc...potentially so many more years finding what is right. The possibility of us being supplied with something so much more harmful, likely.

    But also - why should we have to - we obviously need it. Why can't pharmacies source it cheaper, directly from abroad -probably easier and more reliable through them?

    And we should also consider those who cannot afford to pay for it themselves. What do they do? What if our own circumstances change and we can no longer afford to source it and pay for it. Again, most of us are already paying out for all the other vitamins and supplements we need. It all adds up - especially when more than ourselves need help.

  • In the UK there are another two T3s (not licenced in UK but used elsewhere int he world) Cynomel and Cytomel to be prescribed on a named-patient basis. Plus the exhorbitant recent rise in cost.

    I think that the sudden withdrawal of UK T3 is that people have been asking more and more for some added to levo or T3 only as they've been very unwell, which has given the Authorities the excuse they've been looking for for a long-time. NDT they banned as well and many do well on NDT particularly as it contains all of the hormones our body would produce naturally.

    NDT has been in use since 1892 in different forms. It saved millions from an awful death. They have also banned this in the UK and probably worldwide, i believe as False Statements have been made about it and it was the Authorities that did so. Not the patients left high and dry.

  • People are asking for t3 - because t4 is often ineffective! And I do believe that it is because it takes so long to get a diagnosis and get T4 to start with that so much more damage is done, hence t4 inadequate. If they would start treating when symptoms show, rather than waiting for confirmation of a blood test, people might not actually need t3! It is the difficulty in securing a proper diagnosis causing a knock on effect making it harder or impossible to treat with t4 alone.

    Again, I remember reading all about how NDT came into use and how it was Grandfathered, with claims that there is no evidence that it was any better than synthetic t4. Despite the fact that that was because NO studies had been carried out! They made it out to be more difficult to administer.

    I must have spend several years of my life trying to find information and rad up in the subject...as I'm sure most of us have had to.

    I think I am such a rage over the current situation because I can see the same thing happening again, with more lies to back up their proposals! In all those, what 70 years, have they learnt nothing? How can they be so blinkered? I cannot fathom why they would be like this. I keep wondering if there is something positive they have known about T3 v T4 or is there a bigger issue, maybe they have a good idea of what is causing increasing Thyroid problems - who knows - with all the jabs as such we have had along the way -and they are trying to eradicate t3 because of impending costs - now got the reason they need - all too convenient. Conspiracy theories aside, there seems to be no real rime or reason in this day and age for them to refuse t3. Something is being hidden, behind 'serious side effects'. Rubbish. Been on t3 only, worked out it is c7 yeas now. Longer than I thought. I have not had any of the 'serious side effects' Probably because I need it!

    The named patient basis, but how many gp's will entertain that? When they don't want to issue T3 in the first place, most won't even acknowledge NDT. And the worry is that they start to clamp down on the import of UK - unlicensed drugs, going into the country - and the likelihood that no dr will touch you if you self medicate - to protect themselves....

    They can source it from abroad when they need to - cheaper, my chemist struggled a couple of months ago and got it from, Germany, in the end - Thybon- Henning? I'd never heard of it. Was a bit wary but when it seemed to have a more positive effect than whatever I had been given, asked Chemist to get same, needless to say he didn't! No idea what brand I am being given, but going to start asking.

  • Considering that NDT was the first product to save our lives and around the 60's Big Pharma pushed levothyroxine with I assume 'big bucks' and gradually persuaded the doctors/endos that it was much more preferable than NDT who swallowed it whole, line and sinker (and many patients sank along with this). Who paid for the Conferences in the USA and doctors also got paid 'in kind' for prescribing.

    Due to this Dr Lowe sent the following both to the BTA and RCoP, and despite three yearly reminders they never did respond. They may not believe what Dr Lowe wrote but we, the patients, know what is right for them and what doesn't improve their health.

    thyroidscience.com/Criticis...

    I think every country in the world has now banned the prescribing of NDT although thankfully it can still be sourced. It has saved many people's life. I'd like to know how much profits Big Pharma makes worldwide with the sale of levo, plus of course the 'extras' if they still have symptoms.

  • "The recent exorbitant cost": exactly. It is shameful that the NHS is buying this drug at such an inflated price from some 'approved' supplier (it is available much less expensively elsewhere) and then using the price of as a reason to refuse it to patients who would benefit from taking it.

    A perfect example of what is wrong with the NHS, unfortunately.

  • They have been trying to avoid the use of t3 for donkey's years! When I told my GP 10 years ago that, after 20 years on t4, no benefit only increasing illness, that it was about time they let me try something else , he said there was nothing else. I told him there was t3...blah..blah... But will tell us anything and obviously very much prepared to blatantly lie!

    The price hike is the excuse they have been waiting for and I can't help but think that they have made that happen....to convenient!

  • We are issued with t3 because t4 does not always work for everyone. Yes it works for some. Others need a mix of t3 and t4. But some of us do need t3 as we cannot tolerate t4. I too am on t3 only. And I have been now for about 6-7 years. And I am one of the lucky ones to be currently prescribed it. I am worried sick they will stop it because I do not see them offering any alternative.

    As you say they have pushed the viable alternative out of reach for most.

    Why are we issued with t4/t3? - Largely (would this be solely?) because we have hypoT. Why do we not have to (currently) pay for prescriptions if we have HypoT? - BECAUSE we have a potentially FATAL condition. There are very few conditions that warrant and entitle us to free prescriptions. As far as I am aware you are only issued with this type of exemption certificate because you have a potentially fatal condition or illness. But both Hypo T and Hypo-Adrenalism are on the short list.

    To stop this medicine, is in my view, at best downright neglect on the part of the health service, and at worst it is paramount to issuing a 'death warrant'. No doubt a slow and degenerative, increasingly painful death.

    As we, who look to be about to be deprived of the only medication that works for us, become more and more weak and ill, with aches and pains and as we develop other conditions as our bodies attack themselves, through NO fault of our own, we will have to return time and time again to Dr's, taking up their time and resources. Hoping that at some point someone will come to their senses! Before it is too late!

    Lets face it, most of us on t3/t4 or t3 only, have already gone through hell to get to this point, where we are on t3, trying to prove that we a) have a 'real' not imagined problem, and b)in most cases we have continued to have to fight, through weakness and illness, to be given this medicine as t4 alone did not work. Sometimes for decades.

    I wonder how many on here are being prescribed, and how many are sourcing for themselves - when they really should not have to. I cannot imagine the stress, especially now of having to do that.

    What gets me is that even after proving to Dr's that you are right, by trying for long enough, and being 'lucky' enough to get a blood reading that shows you have hypoT (in my case took over 10 years) And then after another no of years of telling them that the t4 they issue is not working - being fobbed off, labelled manic depressive/hypochondriac. (in my case another 20+ years) fighting for reviews, referrals etc, begging to be allowed to try something else, being told there is nothing else and having to tell Dr's yes there is...blah...blah... Getting t3, proving that the t3 works by becoming well for the first time in decades. Even after all this Dr's still do not believe we can be right about how we feel and that we might be able to judge what works better for us than they can. We are the one's living with it after all!!!

    Like you say - why? Why after all this proof do they not see?

    There are none so blind as those that will not see!!!

    What more do we have to do to prove what works. We are not robots we are not all the same. We all need what we need. How can they say we do not need it. What do we need then? Shooting perhaps...rid them of the problem of us!!!

    Has this world learnt nothing. We are being victimised and abused,

    We are being discriminated against for having a deadly serious condition that we have, through no choice or fault of our own. It is totally immoral.

    What can we do about this? There has to be something.

    I have a theory - - I may have understood this all wrong?

    but, I wonder how someone can be allowed to buy out the rights to a drug, as I believe happened with t3, and be able to bump up the price to effectively price it out of he market? More to the point why would they want to do that? Would that not end up losing them money? Why buy something then destroy it?

    Now, this is a drug that Dr have been discouraged and stopped from issuing, because, lets face it, it was more expensive than t4. (I never got to the bottom of why a GP was not allowed to issue it, until an endo had authorised it?)

    To be prescribed it you have to go through years of mistreatment to prove that 'synthetic' t4 is not suiting you...whilst all the time your quality of life is being diminished by increasingly ill health. Endo's, if/when you might be lucky to be referred to one, might just let you have a little to try. But when it looks like you might need more, or need to continue on t3 only, they don't want to know. They too seem to draw away from issuing it. They might even refer you to a psychologist/psychiatrist at this point, because if you are still saying you are not well, then you must surely have some mental health problems!, rather than recognise the real need.

    It seems to me, that in recent years, leading up to this 'buy out' there has been increasingly negative reports surfacing about how this drug, t3, is overrated and is not necessary, that t4 is all that is needed.

    My theory/opinion is that, maybe, these inhuman beings, who have bought out the drug and made it inaccessible by increasing the price by ridiculous amounts, might have been, in 'some way' encouraged to do so.

    To me this is all falling into the hands of those who have been trying, all along, to eradicate it from the prescription list?

  • Well said shaws...... X

  • .....off to hospital this morning for a patient review ( made by a surprise phone call last week).........speak to you all later.🙆❓❓

  • awaiting with interest :)

  • Did you see my report yesterday........Patient Review Basildon Hospital ?

  • No, I'll have a look now.

  • Yes, I've read it. I don't know why they are refusing some people T3, when they could quite easily prescribe Cytomel on a named-patient basis - nowhere near the cost of the licenced one that is bleeding the NHS and causing distress amongst members who are prescribed T3.

  • Thanks to you all for your replies. The next question is what can we do about it? Would mass writing to our respective MP's help? Would a 100,000 strong petition to the Government help to trigger some action?

    It seems ludicrous that we are denied a valuable and effective treatment based on what I believe is primarily cost because the government won't challenge the price of this medicine. Why is it so expensive in the U.K. but not in Greece? The NHS is a mighty organisation and surely can fight this?

  • We have our problems here too. UniPharma are controlling supply to warehouses as they have been selling it on at a profit. So now there are restrictions. No forward ordering for us anymore - and occasionally the Pharmacies have one or two packs in stock .... Hubby trekked the streets of Xania just to find a few boxes recently .....

  • Marz Is this warehouse the Greek supplier I mentioned in the other thread yesterday?

    I realise they are making a decent profit, 300 tabs cost me €65 including postage. So disregarding the cost of postage that's €6.50 per pack of 30 tabs or allow say €5 for postage, then around €6 a pack of 30, so a nice profit.

    As they said they'd doubled their sales in 12 months, it's not hard to see that a future problem may occur :(

  • It seems there are distribution warehouses for all pharmaceutical products all over Greece. Pharmacies order what they need daily so work on tight margins and stocks delivered by white van man as and when. Usually items I have ordered arrive the next day. Not anymore.

    My understanding is that the manufacturing company - in this case UniPharma - is restricting supplies to prevent the legitimate warehouses selling to organisations other than pharmacies at increased prices.

  • I'm not surprised really. There must be such a demand from UK alone. Shame it's affecting you as well.

  • All because the NHS will not bring their own suppliers into line ....

  • They're very blinkered in not recognising that some patients need it, but whoever is in charge of sourcing supplies and budgeting needs sacking! (I bet it's a man :D very sexist I know but..... )

  • My youngest daughter once had a boyfriend who was in the Buying Department for the NHS in Birmingham. His stories shocked me then - thirty years ago - and are still relevant today.

    They spent their annually awarded budgets - all of it on all manner of stuff - so they wouldn't have it reduced the following year. The same with Social Services - Residential Child Care. They would take the children off on some amazing trip just to use up the budget.

    I am hoping things have changed ..... :-(

  • Sometimes hearing things like that leaves you speechless :(

  • Local councils do exactly the same. If they didn't they would have their budgets cut. It's not stupid it makes sense.

    Don't spend it or they take it away.

    That's why beginning of every Feb/March they start doing road works.....spending the budget before the end of the financial year.

  • Depends how it is spent I guess ....

  • If only they would stop putting stupid restrictions on it, it could be spent on something useful! And suppose they don't have enough staff to use the money more effectively within the time.

    We had it in a school - Money in the pot - but could only be spent on 'resources', i.e books and computers etc - We had to lose a teacher that year - a teacher is NOT considered a resource, apparently! So class sizes increased...

  • It is not 'blinkered' it is criminal. It is prescribed for a potentially fatal condition.

  • I rely on liothyronine and have wondered for dome time whether my prescription will be stopped.

    I've written to my MP twice. My first letter was referred to the CCG and the second was ignored. I've written to a health economist, who at least replied with a polite email saying that the overpricing had been known for some time, Andy Burnham (when he was health sec), Jeremy Hunt, the King's Fund, Ben Goldacre (thinking he would be interested in more questionable pharma goings on) but have had no replies from any of them. If anyone has any suggestions, I'll gladly keep churning out letters.

  • I wish I knew how to tackle this, who to write to etc...Will anyone listen. Good on you for trying.

  • For those in the UK but not in England, maybe the relevant health secretaries, devolved assembly members, etc.?

    Reason being - to try to prevent it being done there as well.

    It would be ironic if Wales, Scotland or Northern Ireland managed to avoid the Concordia monoply - and England had to follow, eventually.

    Maybe point out that the cost of liothyronine in other countries that are supplied by Concordia (I think Australia) has not risen in the same way?

  • Babette - I rely on liothyronine only, felt so ill on levo for 14 years. I was told yesterday by my GP she may have to stop my T3. I was horrified. Thank you for all your writing. I feel so helpless and have been wondering where to write. Not that it would make any difference I'm sure. Could the Chairs of Thyroid UK and Thyroid Patient Advocacy do something do you think?

  • I too have been writing to anyone I can think of - including Watchdog - But I think more people need to be doing the same or we are spitting in the wind! This whole thing is so wrong and I seriously think that

    a) the announcement to remove t3 has been timed to perfection to get lost in the Brexit, rule 50 coming into play - being bigger news. Add to this the 'articles' labelling it as 'low value' giving the general public the impression that it is an 'over the counter' medicine, that has cheaper options available. It doesn't matter how much of it is incorrect.

    b) I also wonder just how long the NHS has been planning to stop t3 on us. The reluctance to prescribe has been obvious to us all. But why? I'm under the impression that they think there is no benefit from it...so why prescribe it at all? Why do Specialists prescribe it if it has no benefit? How did it even get approved initially? And more to the point why do Dr's not recognise the improvements in our health.

    Could it be, that the reason the NHS don't even seem to be attempting to negotiate a better deal, is that they don't want to? This price hike has given them the reason they need - they now use two reasons - the price, and the so called 'lack of benefits' to remove t3 -And just think, if they can get rid of it, it leaves us patients less argument when we go to them with all the complaints!

    Cynical I am. But how can I be any other way!

  • At the end of the BBC article it welcomes your response ...

    "Would this review have an impact on you? You can share your comments by emailing haveyoursay@bbc.co.uk.

    Please include a contact number if you are willing to speak to a BBC journalist. You can also contact us in the following ways..."

    Full details of how to - at the bottom of the article.

  • There was something in a paper or such a few months back listing the costs in various countries and I think the next highest price for 100 20mcg tabs was about £20. In UK it was c£265. Question is why is it just in UK that it is sooo expensive?

  • I would have thought price matching would've been something the EU would've regulated. Apparently not.

    UPower: I thought the reason scripts were free to us for life for our condition was because a thyroid condition is for life, rather than that it is potentially fatal

  • A- Jamie

    I don't think it is just because it is a life long condition. I remember years ago, watching a programme, a woman struggling with arthritis, and discussing the amount she was paying out each month on prescriptions, and how she couldn't get an exemption certificate because the condition was not considered to be ' Potentially fatal'.

    I remember being quite shocked, I'd known I had hypoT for a while, but no one had told me that is why I had an exemption certificate.

    I know a lot of people who, having been told they are hypothyroid, are then told that they are 'lucky', as they are entitled to free prescriptions. Like we should be so grateful for this condition????

    I've recently renewed my exemption certificate. I'm fairly certain that the conditions listed are all ones that if untreated/mistreated can cause premature death. Diabetes, Hypothyroid and hypo-adrenalism to name what I can remember of the top of my head. Yes Hypothyroidism is for life, but so are a lot of other conditions that are not deemed to be life threatening - take arthritis for example, these conditions do not warrant an exemption certificate.

  • I have always wondered if I could use some T3 but have always been told no. But seeing the news I had to come here to register my disgust.

    I recently have been having a massive argument with my surgery about Aveeno cream for my eczema. They claim it's blacklisted by the NHS yet the chemist said they were still dispensing it. The Dr's claim I can buy it. I lost my benefits and although I have won my appeal I still have no money so couldn't buy it even if I wanted to.

    However, speaking with a few people I have found out gender reassignment is now totally on the NHS. Not a life threatening condition like a lack of thyroid medicine would be. Surely non-urgent cosmetic and gender reassignment should be some of the first to be put on hold? They are not life threatening. I have no beef with people having it done and have no issue other than its not an urgent threat to life.

    I am sure there is other stuff on the NH'S which is equally as expensive which could be halted to make sure people get the correct drugs for their condition?

    We are losing our NHS. It's very scary.

  • The government want the NHS to be useless so it is easier for them to privatise it or sell it to companies they have shares in.

  • With respect the point of the nhs is not just to save lives it is to look after our health, all of us. There is little point singling out those w gender issues. There are all sorts of products and services being dispensed to others that I don't use. I'm sure a good argument could be made against my liothyronine as my blood tests don't reveal a need for it (even though I know life is a misery without it).

    If we start pointing fingers at those who 'could do without' then we must be prepared to have fingers pointed at us. Frankly if they did a better job for all of us we wouldn't be tempted to throw others under the bus. Where does it stop?

    I have no children and feel quite tempted to roll my eyes at all the nhs funding plus various other tax I must pay for fertility/maternity services, schools and child benefit while in the meantime also being scrupulous about fuel use and recycling as there are too many of us already. But that would be silly. Our community consists of all of us and we all benefit.

  • This is a very valid point - it is not helpful to attack other areas and to say someone should be treated for one thing and other conditions/medical requirements shouldn't.

    These campaigns will only carry on cutting out more and more 'deemed' to be 'low value' medicines and services. This affects everyone, longterm. That said DaizzeFoo does have a point that this is potentially life threatening condition.

    And maybe as such, it should take some priority. And at least it should be taken more seriously than it is.

    There must be many thousands of people, like yourself, who are 'deemed' not to need t3...when you are proving you do. And many more, again, that have not yet realised that they have a developing problem and are going to be in our shoes days, weeks, months, years and decades, down the line. What options will they have, will they even have an opportunity to self help...by this time it may well be that production of t3 stops altogether as as it may no longer be viable to produce, having priced itself out of the market.

    The very very sad aspect of all this is that most of us just need a little help to balance out hormones, some only need one small pill a day. Just think of the time and money that could be saved if all of us sufferers did not have keep making return visits to the gp trying to get well. How much time and money has been washed down the pan with wasted, ineffective gp visits and the issue of ineffective medication?

    In a way, and I am not blaming anyone for doing this, I realise I am one of the lucky one's being prescribed t3, but all the people out there self supporting themselves, by sourcing and using t3 and other medicines, which they need are hiding the scale of the problem to the NHS and all.

    I also spend increasing amounts on other connected 'supplements'...adrenal and such. Again, at the minute I am able to because although I ended up giving up work due to my HypoT, I have a working partner who is very supportive. But as he becomes more ill with long term/and misdiagnosed/treated conditions himself, this may not be sustainable, going forward. But how many out there have no chance of affording what they need to be able to help themselves.

    Maybe, if we all respond to this 'low value' article, stating out points, maybe it might highlight that this is a much bigger issue than they realise. It is not just about prescribed t3. They are undermining the value and benefits of t3 to all of us taking it.

    And maybe if this drug is withdrawn completely, as I'd bet this is the ultimate goal, they need to be aware that we are all likely to become more of a burden on society/nhs as we become increasingly ill, because I would also bet that if they do 'withdraw' it they will also try to stop it being self sourced.

    This is not a 'low value' drug, as you know, taking it. It is for many a life saving drug because it is the only thing that works for them. And people who have been prescribed it have it because other drugs i.e t4, does not work for them and there is no other option offered. Since they eradicated NDT from prescription too.

    As you point out the NHS is 'to look after our health'. So why do they not? Why are they happy to slap a life sentence of ill health, diminished quality of life and the likelihood of early death, on us...when they are very aware that it is a potentially fatal condition? Hence exempt from prescription charges, when few conditions are. This point alone should indicate the importance of the medicines that we, taking it - prescribed or otherwise, when we are proving that it works!

    Complete madness! - not you, the intentions of narrow-minded health 'care?' professions.

  • 'As you point out the NHS is 'to look after our health'. So why do they not?'

    Just off the top of my head:

    1) Because doctors are mostly middle class type As who believe in 'pull your socks up' 'rub some dirt on it' and any obstacle can be overcome w hard work.

    2) Because we are mostly menopausal fat women who get scapegoated as being a bit dim, tearful, dramatic and worthless.

    3) Because, for all the 'science' they like to make out they're so wedded to, they believe all sorts of sh*t - passing fads that are embraced by the nhs because they're cheap and nonsense about mental health based on very little actual knowledge - and would rather fob us off and get rid than actually address what could be wrong w us.

    4) Because there are far too many people who are unhappy and exhausted and a nuanced process of finding out why would require so much time and expense that it would be impossible.

    5) Because 'exhausted' people have such a poor prognosis for recovery.

  • Oh how very true! You forgot because they can't see what is in front of them! When people get the right medication - they still don't accept we might be right!

  • One word: 'placebo'.

  • See post I was writing whilst you were relying this!

  • I just wonder why there is this massive negativity towards all things 'thyroid'?? Why, when it is 'life threatening? Why are the 'powers that be' suppressing everything that might help us? Why are they trying to kill us off? I would not be surprised to find there is an even bigger scandal being hidden here...maybe they know of something environmental that has lead to such an increase in the numbers now struggling?

    Maybe they can't afford for us to live long enough to find out!

  • I don't think they really care very much because they feel like levo is the answer and if you're still not well then the cause is other than thyroid, most probably some benign unhappiness/ennui that you will probably not get over. I do not think they all secretly know that t3 is the health-giving solution and are desperate for no one else to find out.

  • Again agree. How can they be so blinkered. These are suppose to be some of the most intelligent people in our society. But they just cannot 'think' for themselves. Medicine is sooo 'prescribed' these days. Yep - had the 'check out this list and let me know'...the tick sheet for depression! Even given anti depressants on one occasion, swear they were placebo -did nothing. Because NOT depression! Maybe there are so many of us, more that we can know, and they are scared we will all get well and put them out of a job! (I think they are putting themselves out of jobs anyway - forcing people to self help)

  • Lol, my doc *told* me when I was in the depths of bereavement that the ADs I had requested were found to be no better than placebos. Thanks for that, super-helpful as always.

    Depression is certainly a handy umbrella. for them.

  • Quite.

    When what you probably needed was some adrenal support - family issues and bereavement have twice now knocked me sideways - this last time despite the fact that my health with t3 only had been the best ever for couple of years. I think because of the hypoT we are more susceptible to low adrenal reserve.

    Not something your GP would know about!

    Certainly no help there! Prefer the term Manic depressive to Low adrenal - that way they can use it to dismiss us anytime in the future! At a time when they say they are trying to make 'depression' a more open discussion and more 'acceptable', encourage people to admit to it and face up to it - ---so they can blame everything else on it!

    Just a joke!

  • I was about to post the link to the BBC article when I saw your post. I am certain it is based on cost and I cannot understand why this manufacturer has not had its ridiculous prices questioned, as others have. I am on a combined regime of T4 and T3; my current endocrinologist disagrees with T3 and has only left me on it because I was already being prescribed it when he took over the department. Nonetheless he reduced it gradually until I had to get my doctor to write to him as I was unable to work; I know he will jump at every opportunity to stop it and as I work for myself I cannot afford to be 'off sick' or even working at sub-optimal levels.

  • This world is based on cost! And understandably to some degree. Unfortunately it comes down to greed too.

    I keep asking this question 'why?' too. I am dreading my next GP review in April as I know how much trouble others are having.

    I have already had one Dr reduce my t3 'slightly' saying I was 'over-subscribed'. I think this was because my body was starting to react to the brand(s) I was being issued with - generic bottles, no brand noted. I don' think I was able to process it as well as I had been, because my adrenals were shot - in midst of family illness and stress. I was developing the same problems I had taking t4 only (= 20yrs or gradual reduced quality of life!) Migraines and Fibromyalgia along with the fatigue etc becoming a real issue again.

    Returning to my own, home, Gp and chemist - and having to chase prescriptions - Gp - discussing the issue, and chemist trying to source - ended up on a specific brand -was worried about fillers as 3x size of usual tablets. But all fibro/migraine went. Unfortunately, having told this to chemist, asking him to stick to this brand for me, he then reverted to 'un-named' brands.

    Have you responded to the article? I think we all need to...

  • I also was told by my Dr that my Endo "probably" discharged me as they were with many others as a cost saving exercise.

  • Would not be surprised!

  • There's a long article on the subject in the Guardian, although Liothyronine is not mentioned in there. I have posted a comment re T3/Lio underneath the article but there are many pages there already so could not manage to read all to see if anyone else had posted on it. theguardian.com/society/201...

    I did notice that the BBC article said this.....'The proposals could see an outright ban or tighter restrictions on some products being prescribed by GPs' - so maybe it could mean 'tighter restrictions' as there are some Endos who have been prescribing T3 for a long time. Of course in reality those restrictions have already been tightened by some CCGs.

    I have recently taken myself off T3 only after 4 years of it, and am trying NDT, but I could have carried on taking T3 only courtesy of the NHS although the Endo was wanting me to cut my amount, as he felt I was taking too much (due to the suppressed TSH). In cutting it, I developed some pretty horrible symptoms. Of course we all know that if I was taking T3 only then the TSH would be suppressed and no doubt will be on the NDT also. As I did get diagnosed with osteoporosis just after I saw him, I am playing safe for now to see how I get on with NDt which I have never tried (I did try T4/T3 briefly and was not great on it, but maybe didn't try for long enough).

  • Can restrictions get any tighter - a ploy to eradicate t3? Why would they brand a 'vital' drug as 'low value' amongst other things that are now more readily available over chemist counters and in local stores - they are not comparable. We cannot go to Tesco's shelves of pharmacy and ask for t3?

    No disrespect - being gluten intolerant in any form is not to be dismissed. However there are other option to the 'gluten free' options sold in shops.

    I repeat HypoT is 'potentially fatal' hence t3, like t4 is prescribed under an Exemption certificate.

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  • I have just received a questionnaire from 38 Degrees regarding my feelings on changes to the NHS, the possibility of charging for certain treatments and services and the withdrawal of medicines. In the field for comments I detailed my concerns over the potential withdrawal of T3. It may be worth people here filling in the survey and mentioning T3 and other medicines they are concerned about. The link is speakout.38degrees.org.uk/s...

  • I have just filled it in and made the point about T3.

  • Surely to goodness there are enough peeps on the various forums that we could start a petition?

  • You'd think so, but I think the problem is that it is the same few people on here regularly for a while and then 'life' or 'illness' takes over and I'm not wondering if enough people feel as strongly about it all. Trouble is when people are feeling so low, it is so hard to drum up the enthusiasm. And when you have been kicked when down as often as most of us have it is hard to keep standing back up.

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