Reinstate T3 as a prescription drug available on the NHS

I introduced myself a few weeks ago as a group leader for a support group in the South Cumbria area and wanted to highlight an issue which not only affects people in Cumbria but actually nationwide. The Government has told the NHS to save money and in turn the NHS have instructed the CCG's to withdraw prescription of the necessary drugs to balance our thyroid hormone levels. Now as it stands patients can only receive this medication if they buy it themselves. Our support group has initiated a petition through Change.org to try and raise awareness. We would appreciate your support so please take a look at the link below. Many thanks.

change.org/p/the-secretary-...

128 Replies

oldestnewest
  • signed

  • Thank you for your support, marsaday

  • I have signed and there's also a similar one on Change.org but I was surprised to find only 11 people signed so far.

    change.org/search?q=liothyr...

  • Thank you shaws I was not aware of the other petition until I read your reply Our petition started off very slow but is now gathering pace. I hope that it will be the same for the other petition We have already wrote to the Health Secretary, Concordia International, 3 local MP'S, our local press, the CCG and our local medicine's availability committee. This petition was the next step in our mission to raise awareness of this unsatisfactory situation in Cumbria and other area's of the country

  • Lyn Mynot who began Thyroiduk.org.uk in her garden shed has been doing her best to change mindsets and it is a slow procedure.

    She also appeared as a witness when Lorraine Cleaver had her case before the Scottish Parliament and gave lots of assitance. If you look under Campaigns you can see what has actually happened/is happening.

    thyroiduk.org.uk/tuk/index....

    I did not improve on levothyroxine at all. Was in fact far more unwell. I improved when T3 was added but have recovered fully on T3 only.

    I do not believe we should only be given levothyroxine if it hasn't done the trick in removing all our clinical symptoms.

    Just think back to when women were eventually allowed to vote:-

    "When did British women get the vote?

    The problem with this argument is that only women who were householders over the age of 30 (6 million women) got the vote in 1918; women over 21 did not get the vote until 1928. Yet the 1918 Representation of the People Act gave the vote to all men over the age of 21 so the war did not bring women equality.!

    Are we now the new suffragetes asking for a simple hormone replacement that makes us well. Not to be restricted and allowed to trial alternatives other than levothyroxine? We don't listen to scare stories about dessicated thyroid hormones or T3 added to T4 or T3 only. The following is Lyn Mynott sad story.

    We are asking for a change in Association's attitude towards prescribing what is best for each person. Just as Dr Skinner did and died in the process. The Endocrinology would not listen to him and ignored his invitation to discuss the parlous situation of patients and one-by-one refused - was it because he was a Virologist who had the temerity to diagnose a patient due to their clinical symptoms who had been turned away many times by other doctors. People who travelled from all over the UK. Something is seriously wrong and we are all well aware of it.

  • Thank you shaws, Our group started out almost 20 years ago with 8 Thyroid patients sat round a kitchen table, We have achieved many goals during those 20 years and we hope that our petition will yield another result. Best wishes for a healthy and happy 2017

  • I do hope so. 20 years is a long time and the fact that the Associations don't listen to the patients, so hope in 2017 they will listen to patients' tales of woe as it's us who are unwell and we are only requesting options for thyroid hormones if levothyroxine isn't working for us. :)

  • shaws Well said!

  • I'd really like to sign this petition but feel it is counterproductive as it states the patients can't convert T4 to T3. This is not true as patients, myself included, clearly do convert and the converted T3 shows up in their blood tests. It's possible some patients convert a little less but this would be rectified by a very small amount of T3 whereas most patients require comparitively high doses (the petition suggests 40 mcg daily - deduced from the quoted cost). It's always tempting to put forward an explanation for why we need T3 but unfortunately advocating the wrong reason is shooting ourselves in the foot. It's easy for an endocrinologist to point out these mistakes and destroy our credibility.

    Liothyronine IS available on NHS prescription, by suggesting it is not we will further reduce its availability as doctors who continue to prescribe may come to believe it is no longer available. We hear of patients having their prescriptions stopped but just as many are being started on liothyronine, this graph shows the trend is stable openprescribing.net/chemica... .

    The way forward is to visit their MPs and get them to write to the Health Department and competition authorities. Petitions are a very easy (lazy) option, they make us feel good but are ineffective unless there are hundreds of thousands of signatures. A petition with a few thousand signatures only weakens our case unfortunately.

  • Very well explained jimh111.

  • I have written to my MP, Claire Perry, who forwarded a letter from me to the Health Minister, complaining at the price of Liothyronine, and from whom I received the usual specious and obfuscatory letter. I then presented Ms Perry with more information quoting the comparative prices of Liothyronine obtained from TPA:

    Sweden - 100 tablets of L-T3 = £21.10

    Finland - 100 tablets of L-T3 = £15.81

    Norway - 100 tablets of L-T3 20mcgs – NOK 254.50 = 27.51€= £21.65

    Denmark - 100 tablets of L-T3 20mcgs – Thybon 20 Henning = DKK 190 = 25.53€= £20.09

    Germany - 100 tablets of L-T3 20mcgs =30.15€

    Turkey - 100 tablets of L-T3 – Tiromel (25mcg) = £1.25

    UK - 100 tablets of T3 - Liothyronine = £922.44 (based on 28 tablets at £256.20)

    and asked her to forward this to the Minister and ask if any investigation has been undertaken into the possibility of curruption in the awarding of the NHS contracts for this medication, however she refuses to forward my letter to the Health Minister, basically saying she is too busy with other matters.

    Please do not tell me that we live in a representative democracy.

  • I think there used to be many more manufacturers of T3 in the UK but Mercury Pharma Group Ltd obtained a "sole licence of some sort" and all competition disappeared.

    I have had T3 added to my T4 with absolutely excellent results but I still have two problems with T3 tablets in the UK:

    1.The first problem is that the tablets are extremely brittle. They largely turn into powder in a pill cutter. I have a few photos available. I now cut mine using very gentle pressure on a scalpel blade under a magnifying glass on the bottom part of a pill cutter to hold the tablet in place. I still find it very difficult to break them evenly.

    2.The second problem is the outrageous price.

    I therefore suggest we consider:

    1.Getting some idea of the total number of patients in the UK on T3.

    2.Getting some idea of how many mcg of T3 are used in the UK per month or per year.

    3.Checking whether 20mcg is the ideal format? Many patients are commenced on 5mcg twice a day increased later to 5mcg three times a day or 20mcg 1/2 twice a day.

    4.Approaching some or all of the manufacturers to inform them of the price we have to pay in the UK and to request they consider making their product(s) available in the UK at a much more reasonable price.

    5.But before all this, we need to investigate the details of the history of T3 in the UK and who the major shareholders of Mercury

  • So far as I am aware, there has only ever been a single manufacturer of liothyronine/T3.

    Originally a Glaxo product called Tertroxin, that was sold on and, eventually, de-branded by Mercury Pharma in order to exploit a pricing loophole.

    I'd be very interested in any other products that have been on the UK market, ever.

  • The sole shareholder of Mercury Pharma (or, as I think they were, AMCO) is now Concordia International from Canada.

    (I'd like to have verified this and sent you a link but the security certificate on the site is broken and access can only be acheived by agreeing risks I am not willing to accept. companieshouse.gov.uk/ )

    If MP are charging £250 a pack, why would a competitor not offer their product at £249.99? Hardly a change which would be enough to influence prescribing.

  • This link may be of interest;

    tpauk.com/main/article/thyr...

    Incidentally, when I was moved by my consultant to combination therapy, I remember noticing that the dispensary wrote the price on the bottle label - I remember the GPs wanted to monitor how much (I / it / T3) was costing them - the common price was less than £60 for 28 of 20mcg! and the brand was not the same as I originally got from the Lloyds Pharmacy at the hospital circa 2009.

    It is to be assumed that when the 'experts' in NICE decided that MP would be the sole license holder for UK manufacture / supply to NHS, that the company decided to maximise its income. Another example of 'waste' in NHS due incompetent procurement.

    Also there are anomolies with permitted prescription, e.g. between CCGs. If one remembers when there were Liothyronine supply problems, I was moved to Armour thyroid + Actavis levo - the inconvenience was that only a hospital prescription could be used for the Armour thyroid, even though it was still 'free' - so I had to collect my meds from the village Lloyds and the hospital Lloyds!

  • Just as a side note to one of your problems lol! I used to try cutting it with everything but when out one day, realised that they break quite evenly and much better by just using your nails lol!!

  • Excellent idea for T3 inquiry.......it is unbelievable that NHS has let this slip and then continues to allow this , very similar to ME/chronic fatigue syndrome, where sufferers are too poorly to voice their own suffering.....their campaigns worldwide is called "missing millions" where you exist rather than live!!!!!!

  • I have posted this elsewhere, but in reply to item 1. I was advised by a Health Minister, David Prior, in October last, that 77,200 prescriptions were issued in England in the year 2015-2016, the cost of which to the NHS, (not deducting prescription fees), was £25,165,323.

  • I have found a work around. Via Boots and a cooperative GP I am now on the German T3 from Sandoz. The dosage is slightly different as like the Pfizer and most every other brand other than Mercury they are 25mcg tablets. The cost is about €20 for 30 tablets. They are larger former scored tablets. Easy to break even without a pill cutter. Most importantly I feel better and I'm losing weight.

  • Thanks for contacting your MP. Some are more helpful than others. Your MP seems to not like spending money on social services or the NHS despite claiming to support the NHS. I suspect suggesting an allegation of corruption might have antagonised her. If MPs are not supportive all we can do is bring it to media attention.

    I split tablets by snapping them between my forefingers and thumbs along the score line. If you use a knife I suggest you apply the knife at a forty five degree angle to one end of the score mark and gradually bring it down. This will split the tablet along the score, rather like cutting glass. If you apply the blade across the whole tablet it crumbles.

    Other manufacturers could introduce liothyronine but the problem is that it is so cheap to make. As soon as a competitor starts up AMCo would just drop the price to a few pence, they will continue to make a profit and the competitor would find the startup cost too great. AMCo would revert to the current price once the competition has been eliminated. The medication is too cheap so a competitor cannot enter the market. Also, other companies are aware of this monopoly and they have their own monopolies. There is an unspoken agreement that they don't tread on each others toes, it's not in their interest. They don't communicate with each other, it's the way big business works. They all know the score, it needs Government intervention to put a stop to it. The Bill going through Parliament might help but the danger is that it will be too weak and AMCo will just make a payment to the NHS budget and keep the price where it is.

  • jimh111* This is why we all have to play the system and the system is we complain to the Competition and Markets Authority about the price to the CCG for our area The Governmental Health Minister. Our Local MP and any body else we can think of Many of us including me are getting T3 prescribed at the moment but it only time before my CCG GP and Endo decide otherwise so it's no good sticking your head in the sand and for those that say no one takes notice or they don't accept petitions I say the louder and the more people shout the more you get heard

  • These figures make most interesting reading.

    Can I suggest that you write direct to the Heath Minister?

    I would also write to DrSarah Wollaston MP, chair of Health Select Committee

    Might I also suggest that you certainly flag up these enormous price differences, and absolutely ask if this could be looked into. Could I also suggest that inferring corruption may not be helpful?

    Please do not be offended by my comments, which are given in the spirit of encouragement.

    Good luck.

  • I should point out that my question regarding investigating corruption was posed after being effectively stonewalled in two letters from a health minister, So naturally I wonder why I cannot obtain straight answers, and please do not assume that corruption cannot exist in our political system, we are talking about human beings in whom greed exists.

  • I certainly do not assume that corruption cannot exist.

    I said that inferring corruption is not helpful, when writing.

  • Time and space precludes me copying all my letters and the replies I received. Rest assured that my question was not posed lightly, but only after a long and fruitless exchange of letters.

  • As the son of a medical professional, I would say that such pricing and allowing supply monopolies is most generally due ineffective, lazy, over-paid, non-audited government procurement officers, who wouldn't know how to negotiate a good deal with a street trader, let alone a multinational company and its lawyers!

  • HI SleepySusie, Thank you for your comment, We have wrote to the Health Minister, and also our local CCG. Our local MP's are very active and have taken up the issue of the enormous price differences We have also contacted Concordia International, our local press, and NHS England. Our petition was the next step in our mission to highlight this unsatisfactory situation

  • Well done. I hope things turn favourably for those who want to remain fit and well.

  • Thank you shaws

  • My pharmacist told me recently that she pays out £1,100 for 100 liothyronine which includes £10 delivery charge. So it costs £10 per 5 microgram pill. I was shocked by this exhorbitant price as, at the time, had been prescribed 2 x 5mg daily by GP. I am now reducing that amount by gradually switching over to privately sourced NDT.

    My body was not converting T4 to T3. My own research into worsening symptoms since Goldshield was bought out by Mercury Pharma led me to this conclusion which was borne out by blood tests via helpfully sympathetic GP.

    A Mercury Pharma representative stated categorically to me that the original Goldshield Levothyroxine they profuced was exactly the same. However, my body knew it was not hence the three years of worsening symptoms that ensued.

    In my opinion, there is something deeply at fault with the manner in which the NHS is being over-charged by pharmaceutical companies for liothyronine and other drugs. It is leading to the axing of medication prescribed by GPs and may ultimately precipitate the demise of the NHS Collectively, we need to voice our concerns, and the sooner the better!

    Thyrigia

  • Hi Thyrigia, Yes the price is exhorbitant but does seem to vary in many area's. One of the MP's we have helping us with our petition is looking into this problem and several other issues connected to the T3 shambles. Once I get more news I will update everyone. Thanks for your support

  • Wasn't one of the Big Pharmas fined massively for over-charging the NHS for cheap drugs just a couple of months ago?

    Why isn't the same thing being done here? I know my T3 is gob-smackingly expensive, and because of receptor uptake/resistance issues, I'm on x140 20mcg tabs/month. I think last time I checked the BNF, my T3 cost something well over a grand a month. Ludicrous.

    I know that GPs are being told to stop prescribing anything that's available OTC, simply because of the inflated prices that Big Pharma charges the NHS. E.g., and these figures are probably not exact, say a pack of x16 paracetamol costs 32p in Tesco's, the NHS are charged over a fiver or a tenner, or something equally indefensible, for exactly the same product. Prescription charges are huge as it is, but still don't come anywhere bear covering the cost charged to tge NHS by Big Pharma. (Mine are free, and I can't remember if that's because of my thyroid issues, or my adrenal insufficiency, so my GP's practice don't even get a standard prescription charge out of any of my prescription meds.)

    If they were successfully confronted before, why can't they be again? I fail to see how, when it's been prescribed by endos, GPs, etc, any medication can be suddenly withdrawn.

    The root cause of this potential withdrawal is very clearly down to Big Pharma being even greedier than usual, and charging exorbitantly for what they know is a medication vital to keeping alive those of us who need it. Effectively, they're saying the NHS couldn't possibly withdraw it because a lot of us would quite possibly end up dead without it. I think they're gambling on that.

    And re a previous intelligent comment about us not "not converting", yes, we must convert a little bit, or the tests for T3 pre-treatment would be zero. I've never seen a zero T3 result, but obviously even with a small amount converted, that amount still has to be picked upmand taken into the cell to be used. So I don't really think that's the salient point here, although I understand the poster's concern about the potential for medics to destroy any credibility thus far hard-won in the battle for T3 to be recognised as necessary for some of us.

    If I take T4, or even NDT, I go toxic within 20 minutes. I would NOT be able to take T4. I'd be in hospital inside a few days on T4 or without T3.

    There must be kick-backs involved in this somewhere along the line. Big Pharma are holding the NHS to ransom because they know how dangerous it would be if T3 was stopped.

  • Concordia International are being investigated

  • this PRICE EVIDENCE OF T3 Simple and clear cut.........this straight forward information would be good to send to health minister and all MPs and Sarah Wollaston. . And the simple question WHY IS T3 SO EXPENSIVE IN UK.?????! Absolutely well done for gathering this very valuable info.

  • I have since written to Dr Sarah Wollaston who, was, Chair of the Health Select Committee, after 6 weeks or so I had a reply, saying that as the election had been called, she could do nothing. That is now four separate members of this Government who have refused to take an interest in this matter, two health Ministers, and two MP's. I repeat, I am very suspicious of the way in which these contracts are awarded.

  • Agree with you totally. I have a DIO2 conversion problem and I'm prescribed 60mcgs of T3 per day. I don't want to jeopardise it in any way.

  • In my part of the UK even the endocrinologists are not allowed to prescribe it - mine tried, but the answer was "no".

  • We are fortunate in having an endocrinologist who is happy to prescribe T3, and the fact that I keep him advised of my letters complaining at the price may help.

  • It is like that in many area's let us all shout from the rooftops how unfair this is

  • Sorry pressed send before I finished should have said unfair it is that some can get it and others can't

  • If you want to change or add after your comment is posted, you click the down arrow across from the green Reply and select edit. You can then alter your post :)

  • Which part of the country is that? That's outrageous!

    I know things can vary from region to region - a friend of mine in Cornwall keeps having her request for a D3 test refused.

  • Nottinghamshire.

  • Idiotic how it can change from area to area. It's like living under different state laws!

  • jimh111* I see your point but IS it really available on the NHS the graph shows only an increase in the spending for T3 the items remain at a pretty even level. conclusion the trend is only upward on cost not on items. If all the people on this site are saying the gp's and endo's wont prescribe CCG's are advising medics to withdraw prescribing then the people in need of this medication are clearly not getting it. Also blood tests are not the Finite answer if the symptoms still persist. Whatever the reason some of us need T3 to control our symptoms if our bodies didn't needed it we wouldn't get the results we do and the relief from symptoms. The proof of the pudding etc.

  • The graph shows items dispensed not cost (you can click on the 'Spending' tab for cost). I posted this graph because it is easy to look at. There is more detailed information from NHS England showing the cost incresing dramatically with a faily stable number of tablets dispensed. I suspect endocrinologists are attempting a takeover bid, stopping prescriptions for therapeutic doses and starting many more patients on five or ten mcg daily, presumably because of the research showing the effects of DIO2 polymorphisms. My view is that the DIO2 polymorphisms have little effect (10 mcg would more than compensate) and that there are other causes which require higher doses of liothyronine to correct. So, the amount prescribed is stable but some people who need it are now being denied and others who may or may not need it are now getting liothyronine.

  • Again I have to disagree with you jimh111 as someone who has the DIO2 polymorphism (just the one).

    I definitely need more T3 than you suggest. I am currently on 50 Levo and 25 T3 and feel slightly underdosed. When blood tests confirm this in a few weeks, along with the symptoms and my daily BP, pulse, weight and temperature records, I won't be increasing Levo!!

  • Musicmonkey, your need for 25 mcg L-T3 is not due to the DIO2 polymorphism:-

    1. The thyroid produces around 6 mcg T3 daily. So assuming you were OK before you became hypothyroid you would only need up to 6 mcg L-T3 (there is 95% absorption of L-T3) to fully recover.

    2. Vijay Panicker's paper press.endocrine.org/doi/10.... demonstrated comparitively small cognitive impairment in those with the polymorphism (mostly those with the double polymorphism). The patients on these forums generally have severe symptoms, much worse than those in the study.

    3. The paper found no difference in fT3 between those with and without polymorphism "This polymorphism had no impact on circulating

    thyroid hormone levels". See table 4.

    I don't doubt you need 25 mcg L-T3, I need at least 30 mcg, it has nothing to do with the DIO2 polymorphism. You are lucky in that you have one polymorphism because it allows a doctor to rationlise prescribing (assuming you are getting prescriptions). The problem is that endocrinologists are now titrating L-T3 according to this research which means only patients with the polymorphism get treated and they are limited to 10 mcg. The DIO2 polymorphism is a minor issue and it is distracting endocrinologists from finding the real cause of the severe hypothyroidism many patients suffer, and their need for supra-physiologic doses of L-T3.

    This is a scientific point, I'm not doubting your need for L-T3, I'm in the same boat (and I've no idea of my DIO2 status!).

  • jim,

    I thought that recent posts/papers by diogenes had seriously questioned that 6 microgram figure? At least in so far as it can be quite variable between individuals.

  • True. Even if we double the 6 mcg it won't account for patients (many) who need large doses of T3 and have above average fT4s. Remember the Panicker study found no significant difference in hormone levels. Perhaps there is a small difference which requires a large study to show up.

  • Hi jimh111, I agree most patients do convert T4 to T3 however there are a small number who do not ( estimated 15%) however this number may be higher as not all GP's check T3 levels. In Cumbria T3 has been stopped being prescribed on a NHS prescription and is only available as a private prescription ( cost £516 for a months supply of T3 20 mcg pills.) We were told by Cumbria CCG that it was a national ban but this seems not to be the case as many area's are still issuing T3 prescriptions. We have sent letters out to the Health Department, NHS England, The CCG's, the local press and many other organisations to highlight this unsatisfactory situation and this petition was the next step in our mission to get this decision reversed. Our petition may be a waste of time but we must give it time to see what the results are and in the meantime get our thinking caps on to work out what the next step should be

  • Moyramm,

    I've never seen a completely zero T3 result. The point is that a lot of us don't convert T4 SUFFICIENTLY enough to produce adequate levels of T3, not that we don't convert at all. We just don't convert ENOUGH. I'm on T3 because I don't convert enough to be well. My T3 levels are low in comparison to my T4 levels.

    There's also receptor resistance, which causes poor uptake of T3. This used to be identified by a standard NHS test called a T3 Uptake Test, which I had done at my GP in east London back in 1995 ish. They then stopped it, saying it proved nothing because it was done in a test tube. Ridiculous logic. My RT3 is quite high, which means some of my T3 receptors are being blocked by the inactive RT3, so the amount of T3 I take is nowhere near what actually gets in.

    Anyway. I think it's diabolical that this is happening in your area, but find myself agreeing with others about the wording being inaccurate and therefore potentially damaging to the battle we all have with the NHS in general on thyroid replacement therapy anyway.

    Can it be changed?

  • Please advise on the nature of a letter to my mp and others, I am so tired that composing a letter is so difficult . You sound as if you have good ideas for raising awareness of this life sapping condition. Unfortunately I feel so many of us are so poorly we are unable to make a fitting plea for thyroid within the NHS.

  • Hi Mary76 mary76, I am sorry you are so tired it is one of the worst problems with Thyroid conditions. We have a template letter that you can send to your MP . If you go on our website www. cumbriancats.co.uk there is a contact form, so if you could let me have your e-mail address, I can e-mail you a copy Take care Moyra

  • You could send the text of the letter as a Private Message!

  • If you want to specifically insert a 'name' into your post, the person wont be informed unless you put a @ before the name and as you type the first couple of characters a list will appear below and you click on the name you want. moyramm :)

  • Hi, jimh111,

    Unfortunately you are wrong when you say all patients do convert T4 to T3. The majority of people may do, simply because they do not have a genetic problem with their DIO2 gene, but about 5% of people with thyroid problems , such as me, have a polymorphism which means they lack the enzyme necessary for the conversion of T4 into T3. The worst possible mutation in this gene is a CC allele, which I have, therefore Thyroxine makes me actually ill, as my body , unable to convert it into T3, stores it. It also increases the Reverse T3 which is bad news.

    Others might have only a single mutation, which might allow them to convert some of the T4, but not all.

    The usual blood tests are completely useless, as the hormones might circulate in the blood if you have taken the medication, but this does not demonstrate that it has reached the important tissues and organs.

    The trouble with these facts is that most endocrinologists are not aware of them. I saw 3 endocrinologists over the last 2 years, but none of them knew of the problem and insisted I should take Thyroxine. I then has some genetic tests done and it all became clear. Regards

  • Done

  • Thank you for your support Kimbkr

  • I think what is needed is for the price of T3 to be greatly reduced in the Uk.

    The scandal is the profiteering by the producer of T3 and its that which needs addressing.

    The Nhs is seen as a cash cow by many such organizations!!

  • False Statements have been made by the British Thyroid Association about the hormone replacements we all were prescribed before the introduction of levothyroxine and blood tests in the 60's. Why would False Statements be made? To ensure that only levothyroxine was prescribed. If doctors did as they were taught, i.e. diagnosed on symptoms and prescribed NDT if their patients weren't improving on levo, they lost their livelihoods and were pursued by the Authorities.

    Despite three yearly reminders to the Associations about the following link none were acknowledged before Dr Lowe's death.

    thyroidscience.com/Criticis...

  • Dr Lowe's dead? Wow. I've been out of the loop too long. I met him, and his wife Gina, when I was working with Barry Peatfield at Foxley Lane.

  • Yes, he fell and had a head injury from which he didn't recover. He is a great loss.

  • Poor John. When did it happen? Is Gina carrying on where he left off?

    He was just finishing the huge book about thyroid processes when he and Gina spent the weekend at Barry's in Surrey. It was published not long after. Nice man,

  • His widow is dealing with thyrogold and he is an enormous loss in his mainly (one man-fight) against patients not being allowed to try alternatives to levo if not recovering. This is an extract:

    stopthethyroidmadness.com/2...

  • I disagree, in the sense that it is the politicians and NHS contract providers who allow such profiteering to happen.

  • Quite so! But as one of the Big Pharmas was recently exposed and heavily fined for over charging the NHS, why can't the same be done here ?

  • Angel153,

    Concordia is under investigation by the CMS for price gouging. Results will be published in 2017.

  • Good!

    The sooner these greedy bxxxxxs are brought in line, the better!

    Thanks for that.

  • signed

  • Thank you for your support , sunny-64

  • your more than welcome ,

  • Hi, I have signed as I do not convert t4 to t3 as I have faulty DIO2 gene and can't get t3 from gp.xx

  • Thank you for your support, kayala68

  • This is incorrect information, people are able to continue with NHS prescription T3 as long as an Endocrinologist sanctions it.

  • Hi Suze, sorry but in Cumbria there is a blanket ban on T3, even when our patients manage to get an appointment with our local Endocrinologist they still can't get an NHS prescription for T3 but are offered a private prescription which costs £ 516 for a month's supply of 20 mcg (this is from a local independent pharmacy) some of the mutli national pharmacies may charge less. Since we launched the petition I have been contacted by patients in other area's who say it is the same story in their area. I understand that if you are waiting for, or have just had Thyroid surgery in Cumbria you may get T3 prescribed on a short term basis. The purpose of our petition is to raise awareness of this unfair situation

  • What we need is a carefully worded petition asking the government to investigate why the NHS is paying so much for T3 when other countries do not. It should clearly set out the amounts paid by other countries but whoever organises the petition should check their facts about these amounts so no-one can pick up on a small error and use it as a smokescreen.

  • Our MP is looking into this issue about the NHS paying too much for T3. This is the first time I have run a petition and a lesson I have learned from this is that no matter how much you check you facts there will always be small errors occurring as what seems to apply in one area does not apply elsewhere

  • I have just signed the petition but wish I hadn't. Please destroy any copies in print and take it off your website completely.

    I am on both T4 and T3 and agree wholeheartedly that GPs should continue prescribing T3 provided it is sanctioned by an endocrinologist - the same arrangement as for growth hormone injections. Some patients request a prescription for T3 to assist with weight loss but T3 should not be abused in for this or any other reasons.

    My concern is that this petition manufactures a problem out of something not currently a problem. It may just attract unwarranted attention to the detriment of all patients for whom T3 combined therapy is essential.

  • So sorry you feel that way about our petition. If you go onto the Change .org site you will see the link so you can remove your name. Our petition is only 1month old and we feel we need to give it time to see what response we get.If it is not working we will remove the petition and think of something else to highlight this unacceptable situation. Our petition is not about getting T3 as a slimming drug .It is about getting T3 reinstated for patients who need this medication in order to live a life and not feel so ill when they are denied it. The problem is already there and all we are doing is highlighting it

  • Moyramm,

    Sorry, I can't sign the petition because of the inaccuracies:

    1. Some CCGs and health authorities have banned prescribing of T3 but there is NOT a nationwide ban on NHS prescribing T3 which continues to be prescribed in many areas.

    2. Private prescription costs will depend on how much T3 is prescribed. Your example £516 suggests every patient requires 40mcg T3 which is not true.

    3. While some patients are poor converters and need some T3 it's inaccurate to say "There are a significant number of patients who cannot convert the T4 into T3".

  • Hi Clutter, You are correct some CCG's are still providing T3 on NHS but many are not. We were told by Cumbria CCG that this was a nationwide ban, but it seems this is not true. This point was raised when we first launched the petition and I did put an update on our website to clarify this. It seems that T3 has now become a postcode lottery. The private prescription cost I quoted is for one months supply of T3 pills 20 mcg dosage This is the cost at an independent pharmacy in Cumbria If you are lucky to live near a multi national chain of pharmacies you may get T3 cheaper, but many patients are not so lucky in Cumbria. Unfortunately there is a high number of patients in Cumbria who do have Thyroid problems and many of these simply can not convert T4 to T3, However the medical experts try their best to cover this fact up. I feel that this statement is correct as far as the patients in Cumbria go. Our petition was launched to highlight the situation that has developed in Cumbria but I am sure other area's are affected in the same way

  • I agree. The wirding could be tweaked for more accuracy. Maybe something like "many patients [and there needs to be a reference in there somewhere to back up a specific figure or percentage] fail to convert T4, the inactive thyroid hormone, into sufficient quantities of T3, the active thyroid hormone. Further, there are also many patients [again, a fully referenced figure needs to be put in there] with T3 receptor resistance and other T3 uptake difficulties who need supra-physiological doses of T3 daily just in order to survive. [feel free to quote me as an example, I need 100mcg/day, 60mcg in the morning, 40mcg at lunchtime. I crash massively if I go below this, and STILL my morning temperature is sub-normal]. These patients require far more than the currently recognised physiological replacement dose of 20mcg a day."

    I don't know, but something like that, maybe?

  • Wirding? Lol, WORDING!

  • Signed and shared on Facebook 😊

  • Thank you coffee_luvvie the more we highlight this matter the better it will be

  • I have no idea on whether I convert levothyroxine or not into sufficient T3. All I know is how very unwell I was which included umpteen visits to A&E. The addition of some T3 helped enormously but going onto T3 only resolved all the awful symptoms and gave me my life back. My GP did prescribe but then there was none available at all and GP wouldn't prescribe on a 'named' patient basis for Cytomel as they'd have to take responsibility on themselves.

    I decided then that I'd source my own and am lucky enough to be able to do so but others aren't so why cannot they allow the other T3s or NDT (unlicenced but 'grandfathered') to be prescribed. Also recent research has proven that some patients do need T3 to be added to T4 by two different research teams.

    How can doctors allow their patients to be continually unwell when there is a simple solution such as prescribing NDT, T3 added to T4 or T3 only. Instead of doctors prescribing for symptoms, i.e. anti-d's, pain relief, and anything else rather than hormones. Also NDT should not be restricted due to the statement made by the BTA et al.

    thyroidscience.com/Criticis...

    People are forced to source their own thyroid hormone replacements when before the introduction of levo were given NDTs.

    The 'powers that be' have put restrictions upon life-giving hormones to sick people due to False Statements made by those who are supposed to be 'knowledgeable' and also not listening to patients who cannot recover their health.

  • Are you going to sue the NHS for withdrawal of life giving medication. I think an investigation/criminal into the ongoing ridiculous cost of T3 to the NHS should be undertaken. We saw earlier this year a few prominent people "left" their jobs after Billy Kenber, The Times reporter first shook the tree so to speak. The fact remains that T3 from a well known pharma company in France is approx 2euros. Something is seriously amis when some faceless moronic bunch decide to withdraw the product from the market. My NHS T3 supply has been secured for 15 months, my GP told me that. However am more than happy to get involved if you intend to start a class action against the NHS. We should demand the NHS sources T3 from another source i.e. Aventis. I still want to know why there are no competitors in the UK market for T3. This question and many more should be asked and answered at the highest levels from relevant personnel within the NHS and civil service.

  • However well intended your actions are, the information you have posted is factually incorrect, and does us a disservice. Petitions are not the way forward. We need to get our local CCGs, multiple local MPs and the Health Minister involved to have any chance of success.

  • We have already done that and got some positives from all.the letters we sent .Our petition is the next step in Our mission to sort this unacceptable situation out If it does not work we will try something else The only thing that is incorrect is that we were told it was nationwide ban when it is not as it is a postcode lottery instead

  • The prescribing of T3 is not prohibited as it cannot be prohibited as it is the product used for those about to undertake RAI after surgery in order that readings can be taken before and after the RAI treatment to monitor what has happened. Without this fast action drug the patients would be forced to undergo a very long period without any T4.

    This may, however, simply mean that they want T3 to be used solely for this purpose rather than for hypothyroidism itself, but it is important to understand that it does have another use which should be acknowledged at all times (ie by mentioning it makes you look well-informed).

    It is possible that T3 is available in 20mcg tablets simply because that is the appropriate size relating to the RAI treatment. I took 3 tabs per day, spread out as far as possible.

  • It IS available on the NHS! I get it prescribed.

  • Yes in some area's it is and some not so it's a postcode lottery which is very unfair

  • The conclusion of private lab who first tested me said I did not convert. The dosage of T3 that I need is 40mcg a day. The dosage that is prescribed is 20 mcg a day. I buy the extra myself. GP wanted endo's opinion as to whether to carry on prescribing. The previous endo's letter to prescribe was not good enough. Endo did many tests - except he would not do a T3. GP's are told to cut down on referring patients and if they can treat things themselves they should do so. If TSH is within normal range or even a bit higher, GP's think it is easy to treat and they can treat it without the need to refer. So if endo's only can prescribe many patients do not even get as far as an endo, they are just told TSH is fine, so it cannot be your thyroid. Maybe GP will order more tests but more than likely decide the patient must be depressed.

  • Surely what is needed is to bring the cost down so that the right decision is made for the patient.

    Profiteering is whats happening. Why should the tax payer take the hit!

  • moyramm* I shared this link on Facebook and have had lots of people signing it so many thanks for sending it the more the merrier.

    P.S Perhaps some one can tell me I am I doing it right by copying the name of the person sending the message followed by * in order for them to receive the reply ?

  • Thank you for sharing the link eghjm100 you are right the more people we get to sign the better it will be. i am not sure about copying the name of the person ( not very good with all this computer stuff ) but I am sure someone will be along soon to help us

  • eghjm100 you need to type an @ symbol followed by the person's name. You will then see a blue box below with their name showing, simply click on this.

  • cinnamon_girl Thank you what a loon I am

  • have you asked Thyroid cancer and Thyroid Graves community's.

    May be extra numbers there

  • Thank you Thinlizzy 54 I had not thought about those links but will contact them now

  • sorry.how stupid am I.both are not in UK.

    ill get my coat 😒

    and they seem to be very quiet.

  • Thank you Moyramm!!!

  • Signed...and also added a rant :)

  • Signed.

  • It IS available on NHS script.

    I get it every month because I don't convert T4 to T3. I know I'm lucky with my surgery, but if you've been told it isn't available, whoever told you that is either lying or misinformed.

    I've been getting T3 on script since c.2004/5. I went to my then new doctor's surgery when I moved from London to Cambridgeshire, and Inshowed them tests I'd had done privately that showed reasonable/high end T4 and v low T3. The GP I was under then was, thankfully for once, arrogant enough not to need the say-so from and endo in order to prescribe it for me.

    Hope that helps,

    A

  • Hi Angel153, When we started the petition we were told by Cumbria CCG that there was a national ban on T3 and that is why they could not provide it on an NHS prescription any more. This information turned out to be untrue as many CCG's do still provide T3 on the NHS. However there are many area's where this ban is still being enforced. I have tried to correct any incorrect information as we have gone along as it is very difficult to alter a petition once it has been started.The good news is that Cumbria CCG have moved the goalposts and patients in Cumbria can now have an assessment with an Endo and if the assessment shows they need T3 they can get it on the NHS. We are continuing with our petition as there are still many patients who still can't get T3 . Take care x

  • moyramm , that's brilliant news, and well done for pushing things along and making that happen.

    So Cumbria CCG lied, then. That sucks. And as someone earlier in the thread said, the more often a lie like that is repeated, the more likely it is to be picked up by others and carried along as the truth, until it eventually does become the truth.

    Wording is still critical, though, because it can be detrimental to the objective.

    I had no idea this was going on until I fell across this thread kind of by accident today. I saw the title in the sidebar when I was looking for B12 info.

    You take care, too :-) Hypo life's tough enough as it is without having to muster resources against life-threatening lies. If Cumbria CCG lied about this, I wonder how many others are telling other lies? My lot stopped by B6 scripts recently, saying that they are no longer allowed to prescribe vitamins etc - really? So no D3 or iron or B12? Makes no sense at all. We're all at the mercy of whatever our GPs tell us, unless we dare to question them, in which case we get written up as "difficult", "non-compliant", or, of course, their favourite, "depressed".

    I hope this gets sorted out. It's high time someone reined-in Big Pharma's obscene greed.

    A.

  • Thank you Angel 153 you are right we are at the mercy of our modern GP's who do not listen to the patients you take care x m

  • Moyramm,

    I'm posting this link about switching T3 to T4 in case you've not seen it british-thyroid-association...

  • Thank you Clutter, I had not seen this link but think it will be very helpful to anyone effected by the T3 situation. I did see a link from the British Thyroid Foundation, but I think this is much better. I have good news about our petition as our CCG have moved the goalposts and are now allowing patients to still get their T3 on prescription from the NHS (free prescriptions). Patients need to be assessed by an Endocrinologist first but at least this is a step in the right direction.Take care

  • Moyramm,

    That's good news and it is right that prescribing is based on clinical need not affordability.

  • But Clutter , there shouldn't be an issue around affordability. This is drug company greed, pure and simple.

    A.

  • Angel153,

    Nevertheless there IS an issue around affordability for some CCGs caused by Concordia's greed.

  • Clutter Well, obviously, otherwise this thread wouldn't be running!

  • Yes you are right Clutter, we are still running the petition as there are still many area's where T3 is still not available, but hopefully the new guidelines may change that

  • I consider myself very lucky to still receive t3 on prescription from my (reluctant) gp after a few rounds of pointed correspondence between endo and gp.

    I'd like to point out that there are some of us who appear to convert well but remain symptomatic on levo alone. On levo I had an excellent low tsh and good (high in range) t3 and t4 but was bloated, constipated, breathless and depressed w thinning hair. I'm not talking about a slightly swollen ankle, but my whole trunk, limbs etc all swollen and my facial features altered. Despite having no previous gut problems I was taking soaked flaxseeds and laxatives on top of the seeds and my gut was still not working normally. When 10mcg t3 was added the fluid left my body within 72-ish hours and the gut and bloating issues resolved and generally all the leftover symptoms improved. My hair even came back eventually.

    I feel for you if you have a proven conversion issue but don't throw the rest of us under the bus. There may come a time when I find out why the t3 that is converted in my body from levo which shows up in my blood tests doesn't relieve my symptoms but for now I see no reason why I shouldn't take the medicine that helps me function better. Certainly cost should not be a factor as I used to buy a year's supply of Mexican t3 for about £60. The chiselling b******s who make money out of us are the problem that needs fixing, and taking my t3 away is not the way to fix it.

  • Hi, new to group..surprised to read this ? I am on T3 only (have Hashimoto's ) I live on the Isle of Wight, and have no problem getting my regular prescription ( NHS ) of Liothyronine Sodium ( T3 ) every 2 months ? .. have been taking T3 for over 3 years noww, but have had no improvement, so have just found a pharmacy that can supply NDT..am going to see my GP on the 16th to ask for a prescription for Nature-Throid NDT to give it a go....as have read very good things about it ? he has been very resistant to me even trying NDT before, but I am determined to get a prescription !!!

  • Hi soozie 1964, I am pleased that you can still get T3 in the Isle of Wight. The T3 situation is a postcode lottery with some CCG's allowing it to be prescribed and other CCG's not. T3 does not work for everyone just the same as T4 is not suitable for everyone NDT used to be used as a treatment years ago.then the big Pharma got in on the act and it was discontinued. Good luck with your GP appointment on the 16th love and hugs x Moyra

  • I've signed as for me T4 just makes rT3 ...I need T3 to feel normal

  • Thank you for supporting our petition Romany. This is a totally unsatisfactory situation and we need to shout it from the rooftops how unfairly we are being treated x Moyra

  • My GP in Co Durham has refused to Px T3 and will only Px Levothyroxine Where can I buy T3?

  • Hello, please would you pm me if you find a good supplier of T3,

    many thanks.

  • Hi Lydia8132, I am sorry I do not take T3 myself and can not advise you about supplies, but if you e-mail Louise at Thyroid UK, I understand she has a list available. Take care X Moyra

  • Sorry should have said Louise Roberts at Thyroid UK

  • moyramm,

    Neither Louise Roberts nor the charity Thyroid UK are able to give information about sources for prescription medications.

    If you have a private prescription, you can refer to this page on the main website for pharmacies that can fulfil your prescription thyroiduk.org/tuk/treatment...

    Anyone needing to obtain medication without a prescription should post a new request here on the forum, asking for recommendations from forum members.

  • So sorry RedApple I misunderstood the information I had seen posted on this site. Many thanks for updating me with the correct information X Moyra

  • Hi Hamsterley, Sorry to see you are having problems getting your T3. This situation is happening all over the country . If you contact Louise Roberts at Thyroid UK, she will be able to advise you.Hope that helps x Moyra

You may also like...