Just a heads-up here. I am on lio only as, after many years of levo, I developed reverse T3 and had to take more and more levo to control the thyroid symptoms, which resulted in atrial fibrillation. This is under control and indeed absent as long as I take lio only. My cardiologist was incensed recently when a GP asked me to trial levo again and said I was not to take it under any circumstances. My endocrinologist concurs.
Today, after a routine GP appointment, I learned that the government is proposing to stop all prescribing of liothyronine as it is on their list of "items of limited clinical value" since they say it has no beneficial effect and there is no evidence that anybody needs it! Ultimately, if their plan is approved, no GP will be able to prescribe it on the NHS since it is a costly medicine (£700 per 28 tablets).
The only way around this for people like me would be to go to the approved endo (at my own cost, privately) , get them to approve the necessity of prescribing and receive it as a private prescription, for which I would obviously have to pay.
I am therefore alerting any others in similar positions that this is not yet the law but may well come about. The document can be found at:
Scorpio, thanks for this. We've been hearing increasingly that only endos should prescribe T3 over the last year or two.
I can't see that the document is a Government-wide initiative though - it seems to have been printed specifically for the East of England NHS - and it was published last June. I don't think this has anything to do with clinical effectiveness either (they've used some dubious studies to justify their claims) and has everything to do with cost. If liothyronine cost pennies per tablet, as it does in much of Europe, this would not be an issue.
Maybe T3 takers should converge on Downing Street...
I would be there, I have been on liothyronine only for years and am living with the threat of having my prescription stopped. Maybe all thyroid sufferers should converge, it's not just about T3. It's about getting a diagnosis in the first place, it's about getting the correct treatment once you get diagnosed, it's about GP screening for associated diseases, it's about gps understanding what bloods to test and then understanding the blood results so we can be medicated appropriately, it's about being treated with respect and dignity, and not being treated like a time waster or a hypochondriac, it's about not being told "you're bloods are fine" so therefore the reason you are not fine is your own unhealthy lifestyle, It's about being told we are depressed when we are actually just unwell, it's about being told we should lose weight, when it is impossible to do this whilst being under medicated, it's about being told we should exercise when we can hardly drag our ass of the sofa. It's about being listened to and not being patronised it's about all of us deserving a decent standard of health, so we can live our lives and go to our jobs with a spring in our step, and cast of the lead boots most of us wear......... I would be there
Hi Pixie. I am lucky with my GP. She too is underactive and so she is very clued up indeed, hence her telling me before this becomes a "thing". But I have been through the whole sorry saga of "it's your age, it's your job, it's in your head" in the past. One GP many years ago, when asked why I was eating so little and yet still gaining weight, said "There were no fat people in Belsen" rather than consider that I might be talking sense and actually have a problem! I gather from this that T3 costs much more than T4 and this is the reason for the proposal. We shall see.
You are lucky...... My new GP didn't know how to read my results, my t3 was under range and I'm only treated with t3 and my TSH was nearly 5 can't remember exact number 4.85 or something and she told me I was fine.... When I clearly was not so had to increase my meds by 10mcg myself. I did say to her " surely the fact that I'm treated with t3 alone means my t3 should at least be in range" but she was only using THS which was high anyway any higher and it would be over range. Sometimes I despair!!
This is terrible news. Here in France we have the Haute Autorité de la Santé which is the body which autorises or not the reimbursement of medications by the equivalent of the NHS. Here is the link for Cynomel T3:has-sante.fr/portail/jcms/c...
I will not translate the whole document but at the heading "important" it says :
"The medical usefulness of Cynomel remains important for the treatment of peripheral thyroid hormone resistance". That says it all!
For those of you who understand French, click on the PDF version which goes into great detail.
Thank-you so much for alerting us to this. Clearly this has no official backing and is just a local advisory document. It is rather iniquitous that they make up an acronym DROP consisting of drugs which they regard as low priority. As well as quoting dodgy references (the UKMi reference doesn't work, the RCP are dropping their support) they confuse liothyronine with Armour (and wrongly assert Armour has a variation in hormone content).
If anyone should try to use this document it is important to challenge them, with a formal complaint if necessary. Also ask them what THEY are doing to obtain liothyronine at a fair price, what action they have taken to contain costs and ask them to get the authors to contact you directly to discuss it. It's important that these people are made to take responsibility for their actions. A number of their recommendations are designed to shift the cost onto patients, some of whom will be elderly, confused and in poverty. The NHS would be better off without these paracites.
See my reply above - it is now a national document. If approved, it will apply to everyone. It's my fault that I cannot locate the document the GP had but this has substantially the same material, hence the inclusion.
Yes, you are right this document is subscribed to by CCGs thoughout the UK, but not everywhere. The document has no authority whatsoever, it is the opinion of a group who have set themselves up to 'advise' CCGs and charge them for the privilidge. Public money would be better spent on medicine.
Over here in Finland you have always had to pay for T3.
Well basically you have to pay for all medication. At certain point you get your meds free for the rest of the year but for example those who use T4 never reach the point and pay for thyroxine as well.
I don't understand that 700£ /28 pills. How can it cost that much for them? What else is included in that price? It doesn't cost that much if you go and buy it by yourself does it?
Sounds like I don't believe it but I mean how come the costs of it are so high when you can buy it relatively cheap elsewhere?
I recently asked at my local lloyds pharmacy how much a private prescription of liothyronine would be and she quoted £250 for one pack of 28 tablets. I take 3 a month so my monthly cost would be £750. I think the reason is we only have one company that is licensed in the uk to supply liothyronine so they can basically charge what they like........ In uk anyone who is hypothyroid can get a medical exemption certificate that entitles us to free prescriptions, other wise the prescription charge is about £9 per item ( don't know the exact cost as I don't pay)
That cost is enormous! I am horrified. I'm not sure whether the free prescription thing would continue to apply in the case of a medicine removed from the official prescribing list. Need to research.
Until recently liothyronine was £198-62 for 28 tablets. It now appears to be £258-20 for 28 tablets mims.co.uk/drugs/endocrine/... .
I've just noticed the above link does not let you in. However, if you Google 'liothyronine mims' and then click on the link it does let you slip through the security and see the price.
However the spend in the areas listed on the DROP-List shows there is a significant opportunity to promote self care and reduce prescribing for drugs of limited clinical value or switch to an alternative product which offers better value for money.
That does appear to be firm backing for those who follow their advice, adopt self-care, and buy their own. With such a statement, I don't see how they could duck the responsibility for providing continuing care (e.g. blood tests).
I don't think they would stop providing the continuing care eg bloods. But they WILL if this is approved, stop prescribing T3 on the NHS. Which means that a private prescription every month could cost between £25-£50 depending on whether the prescribing doctor charged for writing the prescription. And I would have to see the approved endo at a cost of some £200 before I could get authorisation for the private prescriptions in the first place!
If the system is not willing to provide a very much needed medicine, in my view, that system has abdicated all right to control access to that medicine. So you would have to forget the consultant for getting a prescription and source your own without a prescription.
The end result of NHS not prescribing liothyronine will be that the product will become ever harder to obtain even with a prescription. At some point, I guess, MercuryPharma will simply stop making it. So being one of the handful with a prescription would become almost a liability.
On a more widespread basis, possibly. We need someone who understands sufficiently and has the money needed to get a non-UK product licensed. I don't think it is that difficult a process but it does require financial backing. After all, there are many, many UK licensed medicines that come from abroad.
I suggest you all come to Crete on holiday and I will drag you around as many pharmacies as my back will allow - whilst you stock up on T3 at 1.15 euro a packet of 25mcg x 30. As long as you either book my Guest Villa or Studio of course .....
Are these ridiculous price hikes in readiness of the privatisation of the NHS so the Insurance Companies will pick up the tab ....
As I say, it isn't agreed yet and I am going to check out further info ASAP. But if the plan goes ahead, I shall be organising an online petition and I'll post it here too.
Sorry I called you Scorpio instead of scorp1o. Strangely I have a dear friend Scorp. She doesn't have thyroid issues though. I nearly died from anaphylaxis to thyroxine and I was getting more and more ill. Liothyronine was the last resort. So, it's onwards and upwards now. 👍
The latest BNF says it's £150 for 28 tablets. Still not great and a huge disincentive to prescribe when levo is £4.00 for 28 tablets...
I have just spoken with Boots Pharmacy and a private prescription for 28 tablets of T3 at 20mcg is £329. I take 2 per day so I'd be paying over £750 plus the cost of the actual prescription.This cannot be allowed to happen. Whoever this manufacturer is, they are holding the entire country to ransom and I am not having it!!
I plan to obtain a photo of the actual advisory document, then construct a letter to my MP, which I will post on this thread so anyone can adapt it to their own use. Then we'll get thinking on petitions. We shall need to rally our forces people. More later.
The point is, whatever the consultant approves, if they cease prescribing you will only be able to get it as a private patient as I understand it. I get it free now but it would cost me over £10k per annum!
I'm going to try to contact the CCG next week to determined the provenance of this document. Then I'll see where I go next and post an update. Hang on - nothing imminently going to change so we have a bit of breathing space.
I attached the document which caused me concern here earlier and some people said it was a local East of England initiative, which I didn't and still don't understand, as there is nothing on it to say so and it has an NHS strapline. We are also getting it in Staffs. I have now tracked down the organisation Presquipp as follows: prescqipp.info/
Their website has open sections and registered user-only sections but they describe themselves as "We are an independent, not for profit social enterprise and our mission is to support quality prescribing in the NHS.
We help to make sure that treatments prescribed to patients are safe, effective and good value for money.
We do this by providing information, guidance and support on prescribing to a large community of NHS professionals. We also help them to share their experiences and learn from one another.
"
Their relationship to NICE is as follows "The National Institute for Health and Care Excellence (NICE) is responsible for producing national guidance and advice to improve health and social care. This includes guidance on safe and effective medicines. Many PrescQIPP resources compliment NICE guidance and help it to be implemented. NICE is represented in PrescQIPPs governance structure as a member of the Strategic Oversight Group."
None of this says local to me. It appears national and this would tally with the GP reaction. It would appear to be a quasi-official resource which CCGs can use to reinforce their desire to streamline/cut/manage effectively their use of prescription treatments (supply your preferred term.) I haven't yet been able to determine whether they are under pressure to do so but it wouldn't surprise me.
I am still waiting on a CCG pharmacist advisor response and will post when I get it. I am approaching this as a "worried patient" rather than in my other guise as a health activist as I think I may get further.
Meanwhile I have had some helpful recommendations for reliable suppliers without prescription abroad, so if push comes to shove I can purchase from Europe at a fraction of the cost - though I'm trying to avoid that. Someone really needs to address the monopoly of supply in the UK, since this appears to be at the heart of the problem.
Hello everyone, my name is Kate and I work for PrescQIPP C.I.C. I can see that there are some real concerns based on perceptions of our work, and so I want to explain properly who we are what we do as I hope that I will be able to put some minds at ease.
Firstly, let me make it absolutely clear that we do not propose that liothyronine is taken off prescription.
To clarify who we are - we are an independent Community Interest Company (a type of social enterprise) which means that we run on a not for profit basis for the benefit of NHS patients, organisations and commissioners.
We do not represent the NHS, do not buy or prescribe any treatments ourselves and are not any other kind of governmental organisation.
We help local NHS commissioning organisations like Clinical Commissioning Groups (who are responsible for funding local health services) to ensure that treatments provided to patients are safe, effective and good value for money by looking at the most recent evidence on a range of conditions and treatments, and providing recommendations for them to consider.
We understand as well as the NHS organisations that we support, that patients should be at the heart of their treatment and their needs fully considered as part of any medicines review.
We do not have the power, nor any desire to enforce changes in relation what is prescribed through the NHS at a national level.
The NHS organisations that subscribe to our services, are under no obligation to use the resources that we produce and will always consider the needs of the patients in their area to decide whether or not to use them. They will come to this conclusion in conversations with local clinicians such as GPs. This means that just because we will publish some information or recommendations, it does not necessarily mean that it will be implemented.
The PrescQIPP DROP-List is an acronym that stands for 'Drugs to Review for Optimised Prescribing’, and the emphasis on all the items in this list is that they should be reviewed on an individual patient basis.
Items may be on the DROP-List for the following reasons:
- They have a limited robust evidence base to support their use in routine practice
- They are drugs which the National Institute for Health and Care Excellence (NICE) has recommended should either be discontinued or not used routinely within the NHS
- They are drugs where there are safety concerns, or
- They can be purchased over the counter and should be considered as self care treatments.
The DROP-List document that has been referred to in this forum is a summary document. We produce item specific documents as supporting resources and these contain much more information around evidence, suggested actions and advice.
Liothyronine (T3) containing products were added to the DROP-List because:
- There are safety concerns associated with the treatment (particularly in combination therapy)
- There is limited high quality evidence available to support the routine use of this treatment
- Some of the products available are not licensed medicines in the UK
- There is a growing concern that the only licensed medicine available in the UK is currently priced at £258.20 for 28 tablets (NHS cost). The NHS currently spends over £20 million on liothyronine products nationally.
Our guidance on liothyronine was updated in February 2016 to reflect the updated BTA guidelines. We support their position that liothyronine should not be routinely prescribed for the treatment of hypothyroidism. We also suggest healthcare professionals and patients read their FAQ document available at: btf-thyroid.org/images/docu...
You can see the much more detailed PrescQIPP Liothyronine document at the following link prescqipp.info/files/respon...
Feedback from the clinical commissioning groups that we support, suggests that some patients have been taking liothyronine without a confirmed diagnosis. For these patients we would not recommend continued prescribing without further tests. For individual cases, we support local discussion between consultant and GP. Again - we are not proposing that liothyronine be taken off prescription.
We do support the review of individual patients on liothyronine, with a view to:
- Stopping treatment in those where it is inappropriate
- Reviewing patients who haven’t previously tried levothyroxine
- Reviewing patients who have not had their diagnosis confirmed
Any medicines review would mean engaging with patients in a discussion about their treatment. It is also worth noting is that our recommendations only apply to the use of liothyronine in the management of primary hypothyroidism.
I hope that this serves to correct any previous misconception about our work in this area. You can find more information about us on our site and may find it useful to read some of our FAQs at prescqipp.info/faqs.
Kate, Thank you for trying to allay our fears but I am afraid I am unconvinced. You say the recommendations are for primary hypothyroidism. Where do people who have had a thyroidectomy fit into your scheme? Did you look at any studies on TT patients to assess their different needs, since an absent thyroid is not producing any T3 and many TT patients find they cannot convert enough T4 to T3 to keep themselves euthyroid. Did you simply look at a few studies from the BTA and follow their line of thinking? I would appreciate your views on this. Many thanks.
PrescQIPP - a 'community interest company' read quango, emperor's new clothes. Next you'll be telling us that you and your directors, who aren't clinicians apparently (lolz), only take a minimum wage salary whilst charging CCGs many thousands of pounds each year for your services.
Genuinely interested as to how often you and your colleagues actually talk with patients. Can you provide any figures?
I actually find it a disgrace you can come on here and write all of this. You have no idea what its like to live with an illness like this, so to turn round and say there is no evidence its beneficial is completely wrong. You should look at the people who currently depend on this drug, and how its changed their lives. For me personally I would probably be dead without it, but that's ok as long you can save the country some money.
I understand removing cold flu remedies/paracetemol etc. but not a drug that our lives require.
and FYI Mercury Pharma used to charge a lot less for this drug. only 4 years ago it was £52 for 28 Tablets. Rather than trying to convince the NHS to remove it, why don't you go to the Pharmacies and ask them to put the prices down again... would do us all a favour
Firstly, thank you for coming onto the forum to help clarify your organisation and purpose. I believe that I have represented you accurately, and I did quote from your site.
However, I am not yet reassured. Your document makes the following statements in relation to Liothyronine: "There is no robust evidence on the use of liothyronine
either alone or in combination with levothyroxine and
it is not licensed for long-term use.
• The prescribing of additional liothyronine is not
recommended in any presently available formulation
for primary hypothyroidism, as it is inconsistent with
normal physiology, has not been unequivocally proven
to be of any benefit to patients, and may be harmful.7-9
• The variation in hormonal content may lead to
increased serum levels of T3 and subsequent
thyrotoxic symptoms, such as palpitations and
tremor."
This sounds much more negative than your explanation above suggests.
Under the heading "Circumstances in which use might be appropriate" it clearly says NONE FORESEEN, which definitely reads as withdrawing to me.
The only suggested alternative is levothyroxine, which provides no comfort to me and many others, since I have become intolerant to it and am forbidden by my cardio and endo to use it since it causes A Fib. On T3 I do very well.
My GP is in no doubt that, while her copy of the document (presumably supplied by the local CCG) is just a discussion, it may well be/is likely to be implemented. In this case, she said I would have to buy my own meds as a private patient. This cost would be exorbitant since Boots are quoting £360 for 100 x20 mcg tablets and I take 40-50 per day.
Hence I am still pursuing this matter, as are others, because it is my experience that staying silent until a decision is made results in losing the battle. So, sad to say, I am not persuaded that your motives are as innocent as you would suggest, or, at the least, that the CCGs who use your material have a balanced outlook. If your material had acknowledged the existence of patients for whom T3 is a necessity I should be less worried. But it doesn't and I know they exist because I'm one of them.
I will only say that, should T3 be withdrawn, the cost to the NHS would undoubtedly be greater since I would have to have T4, would consequently be suffering acute AFib and need medical intervention and operation (ablation) and would be inhibited from doing all I presently do to keep myself healthy, since exercising in a 9 hour AFib attack is not a possibility. All ways round, it's a money waster and a great worry.
- A link to the FAQS on our site which provide further information about us, who we are and what we do prescqipp.info/faqs
I’m very mindful as has already been highlighted, that this is a forum for hypothyroid patients so please be assured that I have no intention of taking it over. And we are certainly not spying! We had just received some direct communications from people who were worried by what they had read here so we thought it would be helpful to share information that might address some of the concerns at source - particularly for those who may be worried though not contacted us directly. We also wanted to ensure that you had sight of our latest guidance.
It would obviously be wholly inappropriate for us to comment on individual cases or treatment. To reiterate - all the guidance and recommendations that we publish are subject to consideration, approval and implementation by the CCGs and their local clinicians, and should always be subject to consideration of what is best for the individual. If any patient is unhappy with their treatment or what they are being prescribed for any condition, we would always suggest discussing this directly with their clinician.
As far as the pricing of treatment is concerned, while I certainly appreciate the frustration, we’re not a lobbying organisation, and the remit of our work is focused on helping commissioners to work with the treatments that are available in the UK.
Might I just say that, whilst you may not be spying on us, it would probably be beneficial to your understanding of the problems with treatment if you read a few of the posts. So many people are suffering when just a little dose of T3 could make them well. So, I do not see how anybody can consider it to be unnecessary.
And as to it being dangerous... words fail me. That just shows a total lack of knowledge of the thyroid and how it works.
Who was it said that the only specialist of an illness is the patient? Probably a lot of people, but it's time more doctors and decision-makers - and people who do jobs like yours - took notice of it.
Except that your recommendation to stop the prescription of Liothyronine (T3 hormone) is not evidence based.
The BTF guidelines are not supported by evidence. They are "expert" recommendations. Furthermore, the BTF refuse to consider any information that conflicts with their "expert recommendations".
It is a fallacy to believe that anything published by a medical organisation magically becomes accepted as "evidence". The BTF guidelines are a classic example of this and PrescQIPP have simply copied and pasted inaccurate information from the BTF guidelines and presented them as facts (which they are not).
There is no shortage of evidence that supports the prescription of Liothyronine for secondary/central Hypothyroidism, specifically, a shortage of T3 hormone, which is a very serious problem for those of us that have it and Liothyronine (T3) is essential to our well-being.
I am grateful for the updated newsletter (although the link to the BTA document does not work) but once again it pre-supposes that all patients shall be switched onto levo. Nowhere does it acknowledge that there are patients who cannot prosper on levo, either alone or in combination. This is a serious flaw in your advice and will disadvantage patients who are unable to tolerate T4 and whose GPs are insufficiently experienced or knowledgeable to stand firm. It is my experience that few are well-versed in matters thyroid and there remain many misconceptions around the condition and its effects.
For example, you cite as a reason to discontinue lio that its half life is very short. This is a major advantage to those, like me, who suffer Atrial fibrillation, since we can rapidly respond to changed circumstances and obtain relief. With levo, that is impossible.
The main thrust of your latest newsletter is still the presupposition that lio should not be prescribed and patients should be moved to levo. That is neither reassuring nor comprehensive. Unfortunately, many CCGs will take it as gospel I am sure.
I currently live in Hungary (lived in the UK for nearly 20 years prior to moving here) and - although T3 is not licensed here - my GP prescribes it for me and I get it through a pharmacy here that does an international service so they get my Trijodthyronine Sandoz. And yes, a whole year supply comes to about £250, so the complete and absolute BS prices the NHS claims the T3 costs, is just nonsense! They need to employ someone that can get a better supply chain and simply reject idiotic pharmaceutical companies that try to charge hideously stupid prices! Has no one in the government or JH's office or any big wig in the NHS thought of this?! They'd rather deprive patients of vital meds and then pay out huge amounts of money for treatment of conditions related to hypothyroidism, than actually find a cheaper supplier?! Bunch of lazy, stupid morons! Arghhhh! 😤😖
have sent the following - am thoroughly disgusted with the behaviour of these people profiting from the suffering of thyroid patients.,....
Hi
I'm writing to express my disgust at your treatment of thyroid patients. Your pronouncements are not evidence based and appear to be cut and pasted from a BTA document which is not backed up by scientific literature but rather relies on the pronouncements of self-proclaimed "experts" who don't themselves have any experience of using and taking the drugs they make their pronouncements about . This is grade E evidence and should not be used to disadvantage and harm patients as you are doing. You at PrescQIPP should be ashamed of yourselves.
As you state your being paid to work with commissioners to screw patients over and to profit from the disability and suffering of patients who need the drugs that they take.
I wonder how you and your colleagues sleep at night screwing patients over for a fast buck
Perhaps if you had any experience of this disease and the issues with the treatments provided you wouldn't be so fast to ruin so many people's lives.
And while we're at it - let's have some transparency here. How much money are you taking from CCGs and the NHS to produce this pile of unevidenced tosh that harms patients and ruins their lives?
I was appalled to read your post yesterday; I have had Hashimotos for 16 years and have been on combined T4/T3 for 12 of those, having continued to display hypo symptoms even at very high T4 dosage.
My previous endocrinologist was very supportive of treatment which worked for the individual but he retired 15 months ago and it has become obvious that the current endo believes that the only necessary thyroid medication is levothyroxine. He has systematically reduced my T3 over the last 9 months and by the time I saw him in 9 weeks ago I felt dreadful and was unable to work or study. I managed to pressure him into raising the T3 slightly and started to feel quite a bit better almost immediately; I raised it a little more a few weeks ago and now feel almost normal, for me.
It was only two weeks ago that I took on board the fact that he had been lowering the T3 without increasing the T4 to compensate, so I was only on just over half my usual combined level of medication. I can't believe I didn't realise this before, especially as I'd put on a significant amount of weight, although I suppose it was an indication of how poorly my brain was functioning.
In view of this, I came onto the forum yesterday to see if I could track down a more sympathetic endocrinologist in the area!
I don't know if the price of liothyronine has dropped since you originally posted; around a month ago it became unavailable for a few weeks and I was ringing round other pharmacies to try and track some down. The pharmacist in my local Sainsburys looked it up and said the price had shot up to £700, which he put down to it being in short supply. I didn't think to ask him what the price had been before.
My doctor called me while I was writing this, and said that the price quoted in her most recent book was around £200.
No I think the price is just as high or higher! I can't recommend anyone I'm afraid (I saw Barrie Durrant-Peatfield ages ago but I hear he's been unwell) but I have had a reliable source of T3 from abroad, which I shall use if supply on the NHS becomes an issue. Ask for a referral to another endo. I'm sure you're entitled. Hope you get sorted and feel better.
Hmmm my endo priced up my liothyronine and it was £54 a month - as opposed to about £1.50 for levo. However for an NHS on its bare bones I can see why they would like to cut that down and put up with me being ill once more
Actually it is much, much dearer than that. The crucial point is that it isn't elsewhere in Europe and it wasn't here until they awarded the manufacturing contract to a sole supplier. The costs have rocketed astronomically ever since. So this isn't a case of the NHS being prudent with funds - it's exactly the opposite. If they sourced in bulk elsewhere, there would be no problem. In this instance they propose to punish patients instead of sorting out their supply chain.
Update. Have been rung by the surgery today to say that they have made the decision no longer to prescribe liothyronine. They can refer me to a private endo and of course that means I shall have to pay. I have an appointment to see them next week but it will simply be to inform me, not to offer any other solution, despite the fact that I can't tolerate levo.
I'll report back after I've been and after that I guess it's letter to CCG, MP etc though none of it will do any good. To say I am appalled would be an understatement.
I was told by my pharmacy last week that South Norfolk CCG will soon be stopping paying for Liothyronine. I will literally have no life without it. I currently take combination t4/t3 as t4 only made me more hypo than before I started any meds! Thyroid care in this country is a disgrace. Endos don't even understand how to treat Hashimoto's properly and there is no autoimmune care. They don't understand thyroid hormone resistance that t3 helps me with, so they don't prescribe enough t3 anyway and quite frankly I feel my thyroid care under the NHS is unsafe. Taking Liothyronine away is just another negligent aspect of thyroid medicine in the UK.
Tell them to put in writing that they're stopping t3 for you and why. It's detrimental to your health if they stop it and they can be sued. They are causing you pain suffering and possibly death. Don't give up.
I can't disagree. I'm currently awaiting an endo appointment. If s/he recommends lio then the surgery say they will continue to prescribe (hmm) but if not, they won't.
I have been told the same. I have been taking it for over ten years now. The cost quoted me was £200 per 28 tablets. My endo said she doesn't approve or prescribe and that if I wanted it, get my GP to refer me to a consultant that does. I have no chance as I couldn't pay privately. I read in one article that the medication only costs £68 per 28 tablets, but I can't find that article now. I was told that it can cause heart problems and everything else I had was just coincidence.
Hi all. I am in the same boat. My new GP reviewed me last year, and wanted me to try an upped dose of Levo and cut my Lio. Fended her off for about 6 months, then she pushed so I agreed, after she promised I could be reinstated if I wasn't happy. Well, its now 12 months later and I am fighting to get back on to my previous dose as all my symptoms are returning. She refused to prescribe and insisted I saw an endo (NHS) which I've done, and he's recommended I go back onto the Lio/Levo combo I was on previously. GP is now refusing point blank, as the practice sees "no evidence of benefit". She now blatantly lied to me, saying she never "promised" as she doesn't guarantee things. Pure fallacy. I wouldn't have come off T3 unless that was the case. I am furious beyond words. I am lost as to what to do. there seems to be such little understanding at GP level what we go through and what they do to us. I've called my endo to ask the way forward. I am hoping either he prescribes directly, or demands the GP practice to... but I am not hopeful of that from your stories above.
I'm sorry to hear this. I wis contact the pharmaceutical advisor to the CCG and ask their policy on prescribing T3. Of they're against it totally, I don't see much alternative than to buy abroad but if they approve in circumstances such as you've described, then that should help. Leg me know how you get on - I shan't be at all surprised to find myself in the same boat when I return from holiday. Good luck.
Thanks scorp1o. I'll give it a try. I actually checked the prescriptions history database (linked to in another post) for my ccg and discovered my practice IS prescribing t3 to at least one person. So I remain hopeful. I am awaiting response from them and the endo. I'll let you know how I go! Keep your fingers crossed for me
What about the DIO2 gene test. Would GPS take that test into account that you actually need t3 because of a faulty gene or genes from parents or parent.
We pay into nhs all our lives and now we are ill and need something back from the system we've paid into they are not there to help. Well looks like they're gonna have a pretty big fight on for causing pain suffering and death.
Is there any news on if Endo's are prescribing T3 and the cost of it? I have my first appointment on Thursday and I'm hoping to get some on prescription
I think you will find that it depends on the policy of your CCG. I suggest you ring the CCG and ask to speak to the Pharmaceutical Advisor and ask them what their policy is re prescribing T3. Mine said they were no longer prescribing to new patients and existing patients could continue if they saw an endo who recommended continuation. I saw one and he did, so prescription has continued. The cost to buy is eye-watering in this country but can be obtained more reasonably abroad. Good luck and let us know how you get on.
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but I mean how come the costs of it are so high when you can buy it relatively cheap elsewhere? 
