Cheap T3 am so angry

YOU ARE NEVER GOING TO BELIEVE THIS FOLKS. I AM SHELL SHOCKED NEED SOMEBODY TO CONFIRM BY FRIDAY BEFORE I SEE SARAH WOLLASTON MP.

After talking with Fiona Kennard with respect to her obtaining Aventis -Sanoffi T3 on a named patient basis on the NHS, where I had previously been refused I just contacted my local Lloyd's Pharmacy and asked them how much they would charge me for Aventis liothyronine. You have to ask them to go through their IDIS account. Am really cross with my local pharmacist as Aventis actually advised me to do this last year when Times exposed scandal. Pharmacist rather than admitting he didn't know how or couldn't be bothered he just said it wasn't possible.

SIT DOWN NOW.

£49.79 for 50 tablets. I am currently bouncing off the ceiling

In anger. If this is true, I asked pharmacist to double check, so no reason to doubt it. The £21 million paid to get rid of Mercury T3 can't write anymore I am so angry.

69 Replies

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  • Airmed,

    If you have a named patient basis prescription for 25mcg then your local pharmacy should have been able to obtain Sanofi Aventis Cynomel via IDIS or another specialists medicines wholesaler. Perhaps your pharmacy was unaware this could be done.

  • The point I'm trying to make here is that NHS T3 is and has been available on NHS script, regardless of the bureaucracy involved on how it's obtained, for just over £50 a month for my script as opposed to £600. This is just scandalous. We probably wouldn't have been mentioned in Consultation and be hounded by the NHS England, NHSCC CCG's etc after all we now know it's all about cost and not necessarily efficacy.

  • Airmed,

    The consultation mentions that Liothyronine is clinically effective but that Levothyroxine is a cheaper alternative so no-one's hiding that is all about cost.

    The other thing is that even though Sanofi Cynomel is vastly cheaper than Mercury Pharma GPs can't be compelled to write named patient basis scripts for unlicensed medicines as it involves them taking personal responsibility for any harm to a patient prescribed an unlicensed drug.

  • Well something needs to change then doesn't it Clutter and that's what we need to make happen. At the end of the day this isn't rocket science. The cost of a license for Sanofi is minimal in fact the NHS should issue license free of charge and get it in the market overnight as already licensed product and used in the Uk. It's just pedantics really

  • Airmed,

    The people who need to sort out price gouging and licencing of alternative suppliers are DoH, NHS England and MHRA.

  • That's exactly what will tell Sarah Wollaston

  • Fine? No not at all!

    Claiming T4 is a fix all alternative simply isn't true for a considerable minority of hypo patients, numbers of whom are already being forcibly de-prescribed onto T4.

    It is not just about cost, it's also about the deeply questionable notion that T4 fixes all. And thus extends beyond de-prescription to prescription refusal to patients manifestly

    remaining symptomatic when medicated with T4 up to the eyeballs!

  • MikeM46,

    I didn't say anything was fine and I'm perfectly aware that Levothyroxine monotherapy doesn't work for everyone as I take Levothyroxine and Liothyronine.

  • Apols Clutter, the reply is intended for folk reading your response who may not be aware of the difference between the two, T4 & T3. The fine etc. is aimed at the assertion in the consultation ... should have made that clearer!

  • Isn't the obvious solution here a system whereby the patient signs a pro forma stating that the risks have been described and understood?

    (I'm grateful for a bit of background about IDIS, though, as it's relevant to my ongoing situation.)

  • Lady_eve,

    What risk?

    Contact details for IDIS are in thyroiduk.org.uk/tuk/treatm...

  • I was referring to this "GPs can't be compelled to write named patient basis scripts for unlicensed medicines as it involves them taking personal responsibility for any harm to a patient prescribed an unlicensed drug" part of your comment above.

    I didn't mean to suggest that T3 was risky. I know there's no risk with T3 (just as I am satisfied that there is no risk with DHEA at the level I am taking it) but there has to be a way around the "personal responsibility" argument that doctors are hiding behind, and a straightforward pro forma just seems like such a simple fix.

  • Lady-eve,

    This is the problem with doctors as 'gatekeepers' to medication. I'm not sure patients signing disclaimers would absolve doctors of causing harm if any occurred.

  • Obviously the disclaimer would need to be worded very carefully.

  • Lady_eve,

    I doubt it is possible.

  • I'm perplexed and disappointed that you think that. To me it seems such a clear way forward. Perhaps I haven't quite had all my optimism beaten out of me ... yet.

  • By the way, I was extremely angry when the Medical Innovation Bill was tanked by the Lib Dems two years ago.

    As I'm sure you know, part of that was the intention that the patient gave consent for the novel treatment, and such consent was recorded in the patient notes.

  • funny, not a single GP ever worries about any other medicine on the market needing a disclaimer, its all about "them" wanting people sick, not getting well with alternative medicine, in a nutshell

  • Well let's hope it works both ways. If they stop my T3 having had it recommended by an endo due to poor conversion, I will be seeking legal advice for professional negligence and hope others do the same.

  • I admire you, that is a great idea, good luck!!

  • Thanks for the contact details. That's very much appreciated.

    I notice that IDIS are now part of the Clinigen Group. However, they are apparently gaining NHS contracts to supply unlicensed and imported medicines to various trusts under the banner of IDIS Managed Access and IDIS Global Access. On their website, they say: "Idis Global Access (GA) is the global leader in providing ethical, compliant access to unlicensed or unavailable medicines, meeting the demands of pharmacists and physicians around the world treating patients with unmet medical need."

    There's more at clinigengroup.com/idis-glob..., where they say "Patient awareness and knowledge of available treatments has been heightened by the internet and global patient forums. The patient knows what they want and the medicine not being available at their ‘point of care’ is not a barrier to them."

    I wish they'd tell the doctors that last bit!

  • Hi there... I'm new on this forum and I hope somebody may shed some light on what I can do...? This week to my horror I have been denied T3 by both my GP and Proff Ray my endocrinologist... I have been taking 10 mg am and 10 mg pm of T3 for the last 6 years... along with 125mg of T4. I have been on T4 for the last 20 years which doesn't work for me on its own...( TSH levels yo-yoing) felt ill all the time......Since taking the combination of T4 + T3 I have had consistently stable TSH levels and felt on the whole so much better... I am distraught as the drug has now been withdrawn and the only alternative is T4 on its own. On researching it looks like the reason for this is the cost of T3 rising to over £300 for 28 tabs 20 mg from Mercury pharma.... ( license owned by the Patel brothers who discovered a loophole and rebranded the drug allowing it to be recategorised as A from C - which cannot be price capped - therefore prices spiralling out of control and making the Patel brothers very rich) I have also read that the loophole has now been closed up finally, with a new law being passed in April..... Although, To little too late....therefore, T3 along with many other types of drugs that the same loophole has been used to exploit.... Have all been withdrawn as the law only covers licences going forward.... My question is..... As this Company and a couple of others have been profiting out of tax payers money & people's poor health....Why can't the NHS procure the T3 and other drugs from another European manufacturer, which from what I have read are producing the drugs for a lot less... More like £5 for the same dose...? Presuming that's not possible legally...?Also does anyone else agree that there is a lack of 'duty of care' as none of us have been written to by the NHS with an official statement of why it has been withdrawn which I find scandalous!

    Any good advise would be very gratefully received....

    Thankyou...

    Px

  • Sorry to hear it is scandalous. You can go back to you GP/prof and appeal decision through CCG ask them if they would prescribe on a named patient basis. If not contact your PALS. Patient Advice Liason service. If they cannot help Health ombudsmen. I also agree with negligence/duty of care. You should also go and see your MP.

  • Thanks Airmed..... Very gratefull for your input....I will get onto it on Monday... I am self employed and going down hill fast.....Please remind me we are NOT living in a third world country!

  • It seems like it doesn't it. Also tell your prof and CCG on appeal that the Henning Thybon, manufactured by Sanofi Deutschland is more than 10 times cheaper than Concordia and is 20mcg. See Helvella's post. Adiitionally you may want to write to Jane Dacre who is the president of the RCP (Royal College Of Physicians) tell her what is happening to you since T3 withdrawn. As the RCP advise Jeremy Hunt and disagree with cost and efficacy of T3 are probably largely responsible for withdrawal. I don't know that for sure but best guess. I have read somewhere that RCP do not recommend a patient currently stable on T3 be removed. Google "RCP and liothyronine " You could perhaps use their statements as part of your appeal to CCG.

  • Where did you source the info saying it was the Patel brothers profiting from T3 please?

  • Billy Kenber journalist for The Times uncovered story June 2016

  • Have you signed the T3 Campaign which is self-explanatory on the Pinned Posts on the right-hand side?

    Also doctors are not supposed to withdraw T3 if we have a 'clinical' need and most of us do have a clinical need for T3 otherwise we woudn't be on this forum, I feel sure.

  • Clutter and Airmed,

    We see pharmacists continually imploring us to discuss medicines with them. We see doctors telling us that pharmacists are the experts on medicines.

    They simply have no right to be ignorant.

    The problems with this approach have always been:

    1) Getting a doctor to write a suitable prescription (e.g. 25 micrograms);

    2) Getting a pharmacy to accept it.

    And that is it. With a presumption that doctors should always write prescriptions for licensed medicines when they are available, and pharmacists dispense them, it isn't always easy to persuade them to go even slightly off that beaten path.

  • Thanks for that Helvella it just doesn't sit with me very well at the moment with the threat of loosing NHS T3. I don't really care how they sort this out but they must. Now I have this info I feel in a much stronger position to argue case to keep T3. The CCG's are quick enough to advise doctors not to prescribe so I am now going to ask MP for them to direct whatever is necessary to have Aventis T3. My world is so simple😃

  • If they prescribed 20 microgram tablets (i.e. just like usual), the pharmacy could supply Henning Thybon (from Sanofi Deutschland).

  • I'd much prefer Sanofi every time.

  • Why?

  • Because am not completely sure about Mercury, now Concordia's manufacturing skills. I asked if they had recalled last batch expiring in October. Next batch out expires in Jan. New batch, 3 month expiry pull the other one. Asked why. Explanation sounded complete clap trap and asked if they had recalled and re labelled. They said not. Bearing in mind I don't take any meds cept T3 and that's only because no thyroid, not even an aspirin. Bit like working in a chocolate factory, never eat chocs. Same for me only Pharma. More faith in Sanofi dealings in past.

  • Sorry - I had thought you meant you preferred Sanofi (France) Cynomel to Sanofi (Deutschland) Henning Thybon. :-)

  • Helvella is the only reason Cynomel Can't be prescribed is because scripts are for 20 mcg and it is 25mcg? Could we ask our pharmacist for Henning Thybon instead?

  • Pharmacies have always had the ability to dispense products other than MP Liothyronine.

    As a result of this current unavailability, patients taking this medicine may have had their prescription filled by an unlicensed product (imported from the EU) under the direct personal responsibility of a prescriber. The interchangeability of Amdipharm Mercury liothyronine tablets with liothyronine tablets that are not currently licensed in the UK cannot be assured because they may not be bioequivalent.

    gov.uk/drug-safety-update/l...

    The underlying assumption is that a pharmacist will always dispense the licensed product unless there is a special reason to do otherwise. I have seen, for example, Aliud levothyroxine dispensed in order to comply with a prescription for lactose-free levothyroxine. (Before Teva new formulation came out.)

    A prescription for a non-licensed dosage (whether 5 or 25 microgram tablets) also forces their hand.

    You could ask for Henning Thybon to be dispensed against a standard 20 microgram prescription - it would depend on the pharmacist and their willingness to comply.

  • Thank you Helvella. Seeing MP tomorrow need to get facts right.

    If HT was cheaper than Mercury T3 why wouldn't that be dispensed preferentially.

  • Simply because the dispensing pharmacist can see no advantage to themselves of sticking their head above the parapet.

    If, indeed, they have any idea Henning Thybon even exists, etc. I.e. ignorance.

    We have heard (whether true or not) that MP have bemoaned how difficult it is to make liothyronine. Quite what grounds considering it was on sale in almost 60 years ago - from Glaxo. If true, why didn't they simply persuade Sanofi or someone to package an existing product?

    You can see how many companies do that within the USA here:

    dailymed.nlm.nih.gov/dailym...

  • Thanks Helvella you have come up trumps once again. So have got local pharmacist checking price of HT for me so will ask why the hell NHS are not ensuring script s are filled with HT preferentially. I am with you. You know background Pharma. Sanofi don't seem to have a problem with manufacture. I have told everyone who will listen to me that manufacture should be more simplistic as old tech in Pharma terms. As you rightly say kicking around in the 50's. The difference of course is Aventis -Sanofi are real Pharma companies in my book with huge technical resources. Contract manufacture is limited. Thanks again have a good evening

  • My latest TSH is 44 - currently having the battle from hell with this whole issue - in all of this where is the attitude to "act in the best interests of the patient, to provide the best possible health outcomes for patients"? I have given up with trying to get help in prescribing anything other than Synthetic T4 and am awaiting a recent order for NDT . I have come to the considered opinion that hypothyroidism is one of the least understood and badly managed conditions of our time ..... This is all very sad and just for note - the NHS has spent lots of money on me trying to diagnose the cause of certain conditions when all along it has been the T4 ........ (for over 15 years) ((( *** sigh *** )))

  • A travesty we will keep fighting for our right. So much money wasted because arrogance and ignorance.

  • Hi!

    I do hope you have already, or intend to respond to the NHS online consultation which ends 21 Oct.

    If you have not yet done so & intend to, please give them a detailed description of what you have been through & all the investigations & treatments involved and challenge them on how this removal from prescribing and de-prescribing

    is going to be cost effective when the change in the law to prevent the rip-off NHS cost of T3 can now be dealt with?

  • No I only joined this excellent source recently - can you please send me links to respond to the online consultation - I will most certainly do so. Thanks

  • What exactly is a "named patient basis"? Aren't we all named on the prescription?

  • Jewiemax15

    Yes, by default we are all named on the prescription but this is a different thing.

    There's info about named patient basis on the main Thyroid UK website here thyroiduk.org/tuk/treatment...

  • A long, long, time ago... gov.uk/government/news/gove...

    Francis Maude said:

    It is bonkers for different parts of government to be paying vastly different prices for exactly the same goods. We are putting a stop to this madness which has been presided over for too long. Until recently, there wasn’t even any proper central data on procurement spending.

    Obvs. not bonkers enough for the nhs to do anything about it, Airmed

    We have to sail on in this ship of fools and as you have found, may your God help you if you are chronically unwell. At least we don't live in North Korea, what what? Ave and forge on xx

  • Think I read a post where you mentioned you could submit a private prescription for your thyroid meds at the same time as a NHS prescription. Do you have to pay for the private prescription or is it covered by agreements with NHS?

    It is unfortunate where cuts actually are harming thyroid patients, as T3 should be prescribed if a clinical necessity. Somehow a government blanket response seems to indicate that T3 is no longer necessary. It is true that the majority of thyroid drugs are made in India and in Malaysia and far flung countries where there is not the same standard of quality control. There is no over seer to test the standard of the drugs so it may be possible to either omit or substitute cheaper copy brands of the drug which can affect the patient. They are distributed under a British label, or through European, but there is no guarantee these drugs are high quality drugs and will be effective.

    There must be middle men making a fortune out of imported drugs all taken from public tax payers money for NHS.

  • Think I read a post where you mentioned you could submit a private prescription for your thyroid meds at the same time as a NHS prescription. Do you have to pay for the private prescription or is it covered by agreements with NHS?

    It wasn't me. If you have a private prescription from a private consultation you pay whatever it costs to purchase/dispense.

    It is true that the majority of thyroid drugs are made in India and in Malaysia..................They are distributed under a British label

    Not to my knowledge

    There must be middle men making a fortune out of imported drugs all taken from public tax payers money for NHS.

    Perhaps. A pox on any such middlemen - who must then meet the exacting standards of the MHRA - nhs doesn't import any old tush, you know. :D AMCo were manufacturers and made a fortune price gouging T3 before selling the company to Concordia.

    As you can see from the posts above it is a more efficacious use of nhs funds to import from Europe than prescribe/purchase/dispense UK T3.

    IMO :)

  • AMCo were not manufacturers. I think all their product manufacturing is contracted out. Pretty sure the bit from Goldshield never manufactured anything other than invoices.

  • Thought your comment about" NHS doesn't import any old tush" funny.

    As there are 28 member states in the EU including Croatia Estonia Lithuania Slovskis Slovenia Bulgaria, and transcontinental links with EU union have increased with countries such as Russia Turkey Ukraine Romaia Azerbayjan Macedonia Montenegro Serbia Monaco Bosnia Herzogovenia Luxembourg, the route of manufacture is hard to track.

    Concordia repack neo mercazole from imports from France and through Ireland with a UK firm based in Basildon Essex.

    As you mentioned Amd pharmaceuticals formerly owned Concordia.

    Boots now distribute neo mercazole thyroid drug another giant US owned

    company with tentacles across the world.

    In comparison of drug approval process in US and Europe written in the Journal of Pharmaceutical Science written by U Nitrim Kashpar and Visnal

    Gupa Hv Raghunandan Mysore Karnataka India - the drug link from India

    is apparent in the authors loation.India exports generic drugs to the US and get a huge boost to the economy to the tune of 15 billion dollars a year. New substances which are not mandatory under centralised procedures can obtain marketing authorisation under nationalised procedures.

    Nirenda Modi prime minister of India in an article December 15, was

    wanting to increase export of Indian drugs to Africa. She said that the US is the main importee, and has a higher standard of quality control with

    drugs including thyroid drugs, but inspectors have identified substandard drugs that are toxic and do not work. These may be exported to poorer countries such as Africa. The fact is that authorities are allowing more Indian firms to make new varieties of cheap generic drugs still on patent.

    Unlicenced products are flooding the market.( Voanews.com).

    There are 22 Indian thyroid drugs coming into the Uk via the round circuit

    of English Companies with links to India. Eltroxin Glaxo Smithkline Beecham Roxin S.K.B Synox Neon |Labs Thyronorm Abbot India (UK link)

    Thyrosec Taj Pharmaceuticals Thyrowin Piramil Healthcare Thyrox Mcleods Pharms These are generic brands of levothyroxine.

    Carbimazole is also distributed by Concordia through international sources

    and as a US based main company, can legally distribute generic drugs made in India and distributed through Europe.

    That is not to say that most of these drugs are substandard. However there have been problems of drugs coming into Greece from Serbia and Montenegro, and distributed worldwide.

    The proportion of drugs made in the UK alone is small. Indian drugs are cheaper than other generics. Is it fact that people are complaining that their drugs aren't working as well as before? Is it fact that many of these drugs are imported from India and repackaged, coming in from France, or Ireland?

    I am not convinced that the NHS cuts are relying on cheaper imports to cut down N.H.S bills.

  • How many people in the UK get any of those levothyroxine products you listed?

    All UK licensed levothyroxine tablets appear to be manufactured within the UK. Or are you referring to products supplied via "underground" routes, or that we are being lied to about manufacturing locations?

  • My response was to Rapunzel who suggested it was better to have drugs from Europe, as it was more efficacious.

    I was saying that as there are so many countries in the EU and

    other countries which belong to the European Council, with close affiliations to member states and US based companies who import drugs especially from India, that it is hard to track where generic drugs are coming into the country.

    It is the repackaging of drugs of drugs made abroad which may not be properly labelled or have the name or origin of the manufacture in the repackaging.

    Information from India in an article suggests that the authorities sell drugs which pass quality control standards to Us, but those that don't pass are sold to poor countries such as Africa, which has 50 different countries.

    The Us authorities agreed that some drugs were not being monitored enough. I am not commenting on any false information that might be circulated, I am just questioning how

    it is possible to control the point of entry for foreign drugs which might be parallel imported. Perhaps the bbc will do a documentary on the subject of unlicenced products, slipping in

    under branded generic company names?

  • My response was to Rapunzel who suggested it was better to have drugs from Europe, as it was more efficacious.

    I said no such thing.

  • Hi Rapunzel - I quote your post -

    As you can see from the posts above it is a more efficacious use of NHS funds to import from Europe than to prescribe/purchase/dispense UK T3.

    As your example Concordia is based in Ontario, and has a distribution network through France, and through Ireland in the UK the drugs are already under the UK banner, so the drugs are already imported from Europe.

    I don't understand your point of view as NHS funds are already importing drugs under the UK agreements.

    With Brexit, it is crucial that we are not paying twice for drugs to be distributed in the UK, from drugs crossing borders, and being sold, and billed from one country, then paying another tax on top

    for the same drugs in the UK.

    No reply is necessary.

  • I'll decide if a reply is necessary, thank you. I wrote

    ...a more efficacious use of nhs funds

    I did not write that drugs from Europe are more efficacious. I very much object to being misquoted and won't be responding to further replies.

  • I thought you meant importing drugs from Europe -

    it wasn't a misquote as I did not quote your phrase

    to anyone. I think you are misunderstanding

    my comments to a third party. I can't understand your point of view about importing drugs from Europe when we are still in Europe until Brexit.

    No reply necessary.

  • On the basis that you posted:

    They are distributed under a British label, or through European, but there is no guarantee these drugs are high quality drugs and will be effective.

    It looked very much as if you were questioning the manufacturing location of UK thyroid hormone medicines. As this is Thyroid UK we do tend to concentrate on the UK.

    If any sub-standard medicines are being distributed within the UK, it would be appropriate to raise the issues with the MHRA, department of health or anyone else you can get to take an interest.

  • "It is true that the majority of thyroid drugs are made in India and in Malaysia and far flung countries where there is not the same standard of quality control.!"....... Does that include Concordia's Liothyronine??? That may explain the short shelf life of only three months.

  • No it does not.

    Just look at the Patient Information Leaflet. CP Pharmaceuticals in Hove (I think that they own several factories not all in Hove).

  • Helvella I rang Custom Pharmaceuticals who as you know are the contact manufacturer for Concordia, as you do, to see if they were manufacturing liothyronine, the active ingredient in our tablets or were they bringing it in as a raw material and then just mixing and making the tabs. Can't understand why but they didn't want to talk to me and referred me back to Concordia who wouldn't say. My personal opinion for what it's worth is a) Custom are trying to make in in house and having trouble or more likely they are buying in from abroad and quality varies. Hence last batch with 3 month expiration date. Sometimes I wish I was still at work could have had a ligitimate poke around. In fact would have offered to contract manufacture and used myself as quality control. 😂.

  • The lack of information that is obtainable is a major pain.

    We can, and do, speculate forever. Hard facts are unlikely to reflect any worse than our worst suspicions.

  • The only way you could detect if Concordia was being imported from the state s would be to read the patient info leaflet which in the USA does not have to give the colour of the tablet in its description, whereas European patient info Concordia leaflets would have to describe the colour of the tablet in its information leaflet. Where a customer has no leaflet at all, then there is no way of knowing where the drug was made. As you know Concordia is an international company

    which imports their tevothyroxine drugs from India. Amerian imports are usually of a higher standard than those which are distributed in India to Africa.

  • To add insult to injury my friend who lives in Spain for the past 15 years get, 100 x 25mg T3 for (truth) 2 Euros! Explain that one.

  • That's what we don't understand.

  • I don't mean to add insult to injury as I am going mad here for my own reasons (!) but I'm in the US , on cytomel... my doctor happily prescribes 150mg cytomel/day and would prescribe more if I asked, I pay $50 for 180 25mg tablets (because I take brand cytomel not generic which would be $10 for 180 tablets). HOWEVER, this is because I now have insurance which in the US isn't a guarantee. I didn't have it for 3 years ... and was paying $300 for my 180 tablets then. But just like in the U.K. In seems doctors here are terrified to prescribe it - my doctor is a STAR, and a Gem - in his 70s and so wonderfully knowledgeable (and still willing to learn) - but I had three Endocrinologists prior to him put me on synthroid - one telling me to eat 800 calories a day (and to drink my coffee 'like a woman' which according to her is black) and telling me that 5 mg of cytomel would 'quickly kill me'. So the ignorance is wide spread. But is there a way U.K. Patients can phone consult with US doctors and fill prescriptions here? Even without insurance it sounds cheaper than the U.K.!

  • And it's also very cheap in Turkey and Greece.

  • Hi there...please help...! How do I get my GP to do me a prescription on a named patient basis....? For this cheaper brand that you talk about...? I know about the scandal and am eager to help fight this in any way I can...however... My immediate objective is to obtain T3 urgently....any practical advice would be very gratefully received..and please forward any info on how I can help expose this scandal further....

    I am distraught!

    Thankyou..

  • I think the problem may be that only one T3 is licenced in the UK. Although there is one other which can be prescribed it has to be on a 'named-patient' basis, meaning that it is the GP alone who is responsible if patient has a reaction. Some don't want to have this responsibility.

    thyroiduk.org.uk/tuk/treatm...

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