Thyroid UK
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NOT a win after all? Changes to liothyronine (T3) prescribing...

NOT a win after all? Changes to liothyronine (T3) prescribing...

This has just made my blood boil: prescqipp.info/component/jd...

Yes, they haven't withdrawn T3 completely from the NHS prescriptions but this document clearly states that the access to T3 will be severely restricted. How many NHS endos will be willing to prescribe T3? The majority of them refuse to prescribe anything but T4! Some info in this document is misleading e.g. "Levothyroxine is changed to liothyronine in the body". Well, for many of us here T4 doesn't convert nicely to T3. The blatant lies about the lack of evidence regarding the use of T3...and clearly stated financial argument. Our lives are not worth the price the NHS would have to pay to keep us alive and well... (it's better to fund Concordia's bosses fortune). That's money well spent.

lynmynott I do hope Thyroid UK won't settle in the false sense of safety with regards to T3 withdrawal yet.

All of you who agree that the FIGHT IS NOT over please SIGN an SHARE the ITT petition to stop withdrawal of T3 and improve thyroid treatment: change.org/p/itt-campaign-g...

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It is like some sort of a nightmare that you cannot awake from. These people who make decisions don't warrant a designation of 'doctor' or 'healer' because they are neither. They've lost or never had the vocation to heal sick people and do their utmost to do so.

The just want to climb the ladder whilst leaving behind a line of ailing and sick patients who were relying upon them to advise/help relieve disabling clinical symptoms.

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Kitten1978,

Read Lyn Mynott's post healthunlocked.com/thyroidu...

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Thank you Kitten1978 I was just coming to post about it.

I know I'm fuming this morning. We always knew we would have an up hill battle fighting the individual CCGs due to the cost, even with the consultation going our way. And hoped that having the consultation conclusion that it was wrong to withdraw it completely would back up our fight in enabling those who need T3 to get it prescribed by not just an endo but also by their GP. As this was concerning the prescribing in primary care after all.

But this, this has just made the findings of the consultation irrelevant.

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Kitti1,

The findings of the NHS England are not irrelevant for patients currently prescribed Liothyronine and for new patients who do get NHS endo referrals and recommendations for prescription of Liothyronine. If NHS England had said Liothyronine was to be withdrawn no one would be able to be prescribed it.

CCGs have always been able to make local decisions but they are also supposed to consult about the impact it will have on patients and public. If the CCGs who have withdrawn Liothyronine didn't consult with patients and the public their decision may be open to legal challenge. mills-reeve.com/files/Publi...

CCGs do not have the authority to tell GPs what not to prescribe. Individual GPs, not CCGs, could be found in breach of the General Medical Services contract if they do not prescribe treatment patients have been told "they need".

bmj.com/content/358/bmj.j36...

The GPC has warned that GPs would be in breach of the GMS contract and could get into legal trouble by following the orders and refusing to prescribe patients treatments they have told them they need.

gponline.com/gpc-warning-ig...

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This is interesting, because (not to be a bore) it ties in with my DHEA situation.

I know that DHEA is unlicensed and that probably changes things, but two endocrinologists said I should take it and my GP refuses to prescribe it, because he says he doesn't believe I "need it".

I wonder how the T3 situation will differ.

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Lady-eve,

It is different because Liothyronine is licensed for UK use. If your NHS endo initiates Liothyronine your GP should issue repeat prescriptions if endo and GP are in the same CCG. If your CCG has banned Liothyronine then you may need to take action. See details in my reply to Kitti1 above.

If your endos think you need DHEA then they should prescribe it for you. Your GP isn't, and can't be, obliged to prescribe unlicensed drugs.

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Righty-ho.

Unfortunately - and I think this is going to arise with T3 as well - it takes months to get an appointment with an NHS endo. I'm not sure what that means as far as repeat prescriptions are concerned.

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Lady_eve,

Repeat prescriptions shouldn't be a problem if the NHS endo has initiated Liothyronine. GP should issue the repeats.

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I spoke to my GP on the phone yesterday thinking now as I'd been prescribed T3 by an endo before that he could now put it back but he says no, the CCG won't allow him to. I have made a complaint but have to wait 45 days or maybe longer if they think it necessary. Meanwhile, as I became poorly on the T3 I bought from Germany I've had to go back on T4 alone.

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Summer64,

What do you have to wait 45 days for and who says you have to wait?

Well done for not just rolling over. Patients are going to have to fight for the correct treatment now.

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It says it is their policy to fully investigate and formulate a response for final signing by their Chief Officer within 45 working days of receiving the complaint and that some enquiries are more complex than others thus requiring more time. Once I have a definite no in writing I can then go to the ombudsman. I'd like to take it to a solicitor but I don't have the money. I will be making enquiries now though to see if there are any that still offer no win no fee.

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Summer64,

'They' being your CCG or Hospital Trust?

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CCG

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I'm sorry Summer64 but I'm glad you are going to put up a fight, not just accept an inadequate treatment. Many people are having to write numerous letters of complaint but some are having success with it. You are welcome to join the Improve Thyroid Treatment FB group if you are not a member yet: facebook.com/groups/ITTCamp...

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I've clicked on join so does that mean I'm in or do I have to wait to be approved?

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I honestly don't remember and I'm not an admin. Can you access the posts in the group? If you can you have joined, if not - you'll need to wait to be approved.

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Hi I am on t3 and when ordering repeats on my prescription says "as per consultants order"

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Clutter I think this is a lot worse than the poor and slightly contradictory wording of the NHS 'Next Steps' document. This is down right chucking out of all 18 that were on the list.

The NHS couldn't be seen to be doing it after the response to the consultation and all the media coverage, so they have left it to prescqipp to do it for them. Two faced bar stewards !

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This phrase sets it out clearly:-

In addition, liothyronine is extremely expensive, so it is not good value for money for most people with an underactive thyroid.

What does this mean i.e. "so it is not good value for money for most people with an underactive thyroid".

So, it is fine for people to remain very unwell and symptomatic. They cannot source cheaper T3s? Surely not!

The must think it is frivolous of patients (seeing the majority are female) to dare to even think that the addition of T3 or T3 alone will eliminate all their clinical symptoms and they can have a normal, healthy, happy life.

It sounds quite sadistic to me to allow patients to suffer unnecessarily so.

We are not machines - i.e. where we can buy a cheaper part to save money.

We are dealing with a whole body experience from head to toe, disabling symptoms, unable to work. Of course they will diagnose us as 'hypochondriacs. They certainly shouldn't have become Endocrinologists as they have no knowledge at all of the purpose of thyroid hormones.

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Well said shaws! The latest discussion around my still present hypo symptoms were passed off by my doctor as, "have you considered it's the menopause now!?" So there's another reason not to listen to me regarding hypo symptoms!

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Oh yes. They are quick to run off a prescription for anything but a decent thyroid hormone that makes us well. Often don't give optimum doses to keep TSH 'somewhere' in range. They appear not to understand we need it 1 or lower. They then tell us it is suppressed and tell 'tall stories' about heart or osteo.

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This report shows that the NHS reported to Jeremy Hunt following the consultation that 7 out of the proposed 18 would be 'blacklisted' . Lio not included. But this this is just making it impossible to fight the CCGs and makes a mockery of the CONsultation

independent.co.uk/news/heal...

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I'm afraid I rather expected something of the sort. Its doing the least that can be got away with.It confuses the idea that "routine" treatment by T3 is not recommended and that some people neverthless require it. Noone has pushed for routine treatment - most people do well on T4. The real problem is the suggestion to try to wean as many patients off T3 as possible and on to T4 only. When people get used to a treatment formula over years, it is virtually impossible to alter this drastically without severe and lasting consequences. The authorities have no clue about this and simply treat patients as if one could change petrol to diesel in a car without consequences - in this case a failed engine. All those threatened with change should bring this concept and danger to the notice of whoever is trying to change the patient's medicine and say that in the event of adverse health ensuing, they will be held responsible for that decision and if necessary reported to the relevant body overseeing proper medical treatment. I'm afraid the hidden fist has to come out if patients are to be listened to.

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Diogenes,

If my prescription for Liothyronine (which was initiated first by a NHS oncologist and second by a NHS endocrinologist) is withdrawn I will be reporting the senior partner at my practice (who is also the CCG leader) for breaching the GMS contract and denying me treatment I need.

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I think that's a wonderful idea Diogenes and love your statement:

ll those threatened with change should bring this concept and danger to the notice of whoever is trying to change the patient's medicine and say that in the event of adverse health ensuing, they will be held responsible for that decision and if necessary reported to the relevant body overseeing proper medical treatment. I'm afraid the hidden fist has to come out if patients are to be listened to.

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In my own little way I did this with my GP practise quite a few years ago and it worked. They dont like the idea of liability. However what really held water was which approach was most cost effective.

The truth is they've decided t3 meds are too expensive rather then challenging the ludicrous hike in the cost. They're treating its potential withdrawel like there is an alternative when there isn't. Its become a luxury item rather than essential!

When I challenged my practice I demonstrated that the consequences of t4 only treatment led to a raft of other medications required. T3 proved more cost effective. That held more sway then anyhealth consequences. Our only hope is that all pharma meds are being subject to these ridiculous hikes in prices because the NHS has not challenged them so bizarrely you may find that the other meds you will end up needing still end up costingmore then t3.

Personally I think its serving the government well as evidence that the NHS is not sustainable and gives them a great excuse to privatise, privatise, privatise like mad. They've already carved off great chunks into the private sector eg most physio is outsourced to private franchises in my area.

The only reason why the front image of the NHS is still there is because of public opinion. Behind the scenes as much as poss it is being dismantled with outsourcing to private companies. These companies are carving off the simple straightforward stuff leaving inadequately staffed NHS to deal with complex & therefore the most expensive end of medical care. Those resposible for carving off the chunks dont seen to recognise this as they work on number of cases rather than how much time & investigations/ treatment needed of complex cases.

Am not sure of the answer but I think there is power in the individual standing up & confronting when done on mass. Look at 38degrees.

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I agree. If we are properly treated and medicated (with what suits the patient as an individual) they would save thousands £s as we wouldn't need 'extras' to try to control disabling symptoms. Symptoms should disappear and be relieved when we were on the right thyroid hormones for us. Many members have lost their jobs and not been able to be well enough to get another. Also new bosses would be wary to take on someone who has been off often.

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The problem here is that the majority of patients taking T4 only and not doing well on it, have no fight in them. Only if one has read copious amounts on this forum, armed oneself with extremely complicated facts, and has a large amount of confidence, can one even begin to be assertive with an endo or even a GP. It's only over the last one year that I have been able to stand up for myself, as I had read copious amounts of complicated facts.

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Good point!

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Diogenes,

I'd "like" your comment a million times if I could!

This metaphor is brilliant: "simply treat patients as if one could change petrol to diesel in a car without consequences - in this case a failed engine". Maybe if we start using simple metaphors they will actually start getting what we are trying to say. Endocrinology is obviously too comlicated....even for some NHS endocrinologists.

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This T3 nightmare has come about due to the pharmaceutical industry wacking up the price of liothyroxine by 3000% in the uk. Cheap as chips in Europe.

So NHS England though they have finally taken them to court over price increases, their first reaction is to is to restrict and withdraw its use.

Jeremy Hunt get your act together and challenge the big pharma over their massive greedy hikes in prices! NHS is a massive organisation and should be able to get bulk pricing reductions.

The other day I was told that the NHS are charged £180 for 100 one grain WP Thyroid tablets -not enough for a one month supply for me!! Crazy!! . Its plain extortion and instead of making patients suffer the NHS needs to take on these companies. Can you imagine how much money it would free up for patient treatment if they did!!!! The big Pharmas are rip off merchants effectively plundering our tax payers money & robbing people of treatment -all down to their greed!

Sorry rant over.

I signed the petition!!

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The BTA and Endocrinologists seemed to be against the prescribing of T3 altogether previous to the increase in price , or NDT which used to be prescribed. It was also beset by rumours. So it was a perfect excuse to withdraw T3 altogether - they are happy as obviously their bodies have no need of it - and to blazes with, mainly women, requiring it to have a decent, symptom-free and normal life.

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So true Shaws!! ☹️☹️

Those of us who get our combination thyroid meds on the NHS do so despite them not because of them.

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I suspect he has shares in several big pharma companies and doesn't want them to become unprofitable.

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Hes probably not the only one in a powerful position who has shares.....lol. 😙☹️ As for the life of me I cannot understand otherwise as if they did take them on theyd score so many votes from the public -so politically a win win.

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I maintain that yes, Concordia was on a money making spree but it takes 2 to make a contract. Whoever in the NHS has agreed the contract, and moreover kept that contract running, without checking where T3 could be bought cheaper should be named and shamed and sacked . I suspect this happens all over the NHS - they are wasting OUR money, whilst taking away what we need.

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It worries me as well that there are others besides us

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Thank you waveylines for signing the petition ;) We desperately need more signatures so please sign and share it:

change.org/p/itt-campaign-g...

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lynmynott I think you need to read this post!

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Do PrescQIPP have any power? I would think their main aim is to keep themselves in jobs and prove how much they've 'saved' the NHS. They haven't got liothyronine banned altogether so now they're trying to frighten patients into giving up the struggle to keep/get it. I think we definitely need to keep fighting for more enlightened endos and to get the NHS to buy it more cheaply.

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I agree

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I don't think PrescQIPP's argument has much weight given the CMA "provisionally found that Concordia abused its dominant position to overcharge the NHS by millions for an essential thyroid drug".

"Overcharge" - so not value for money but cost needs to be negotiated?

"essential" - contrary to PrescQIPP's judgement.

The BFT supports the CMA's initial findings.

PrescQIPP did describe themselves as "non-clinical" at one point but they seem to have removed this from their website. They do, though, seem to be unable to reliably and independently examine medical evidence. Perhaps someone should examine whether PrescQIPP offers value for money. After all, all goods and services used by the NHS should be open to the same scrutiny.

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Yes, if PrescQIPP really wanted to save the NHS money they'd be looking at the drug companies overcharging, instead of punishing patients. I think I might write to them and ask why they don't.

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Quokka they're a community interest company and not for profit. I've had a quick look and can't see any Accounts, they're mostly NHS funded but it would be interesting to see where all their income comes from.

Take a look at this:

prescqipp.info/faqs#how-are...

Hmmm.

Edit: Council of Members, can't see any mention of who they actually are.

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Babette it appears that a 'community interest company' isn't answerable to anyone, just its own Council of Members. I agree with your comments and believe that PrescQIPP have (deliberately?) misinterpreted and are publishing misleading information.

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Presqipp are only parroting NHS CC advice england.nhs.uk/wp-content/u...

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lidoplace Prescqipp have a DROP-list with Liothyronine on it. I think they should be questioned again on their misleading terminology, DROP apparently means Drugs to Review for Optimised Prescribing. Most folk would assume that to mean 'get rid of'.

They have no acccountability, who is monitoring them to ensure they're giving out correct information?

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To back track a few years when we couldn't get T3 locally GP's were allowed to go out of the country to source it so why was/is that the situation. It's not as though they are saying all meds must be made in the uk! Can someone please explain and it sounds stupid to me.

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Have a nosey at their frequently asked questiions in link given above. One of the questioms asks if they can help to reduce costs of treatments. They say no but them go on to say that they help local QCC to get the best value for money! What??? That sounds like a contradiction to me. And yes I would like to know who they are accountable to.....thers nothing on who their board is comprised of or their processes.

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I'm sorry I've been a bearer of bad news but I'm glad this post attracted your attention and triggered discussion. If anyone hasn't signed the ITT petition yet, please sign it and, if possible, share it: change.org/p/itt-campaign-g...

So far we have just over 29,000 signatures. We need 100,000...A long way to go!

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Yes the withdrawel seems to be going ahead at ground level. Ive been summoned to see my GP as they want to talk to me about my ndt. Ive heard theyre planning to withdraw it.

Am posting this to bump this post up.

How are we to oppose this?

Im clearly going to argue my case....Not that I should have to after 10years of good results which clearly show Im safe on this treatment. And having previously demonstrated that other treatments are not effective.

What is Thyroid UKs advice to patients who are threatened witn withdrawel of this type of treatment?

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