Liothyronine not being prescribed on the NHS - Thyroid UK

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Liothyronine not being prescribed on the NHS

Loutraki56 profile image
39 Replies

My case has just been covered by our local newspaper as when I approached both my G.P and an endocrinologist it seems they are unable to prescribe me Liothyronine even though it shows in my blood test results that my T4 isn’t converting to T3. It seems I would have to get the Liothyronine from my Greece [my husbands Country]. Can anyone advise any different please. Thanks

echo-news.co.uk/news/174334...

39 Replies
MaisieGray profile image
MaisieGray

This is not a new issue for those of us who don't do well on Levothyroxine, or on Levothyroxine alone, and need Liothyronine - for instance my own T3 was withdrawn 19 months ago. The definitive guidance regarding the NHS prescribing of T3 is in this 2018 document: sps.nhs.uk/wp-content/uploa...

Loutraki56 profile image
Loutraki56 in reply to MaisieGray

Thank you will have a read, sorry to hear your T3 was withdrawn it’s so wrong. I can’t understand how Concordia have been allowed to put the cost up so much.

in reply to Loutraki56

Try a private prescription and get cynomel by sanofi aventis from France. Take it to your chemist and they'll order it in for you. You can shop around to check out prices. Or go to France and get it there with your prescription. Good luck

PS, it's very cheap in France

Loutraki56 profile image
Loutraki56 in reply to

Thank you so much.

bluepettals2 profile image
bluepettals2 in reply to

i contacted them- sanofi-- and they said there were not supplying or manufacturing it ???

in reply to bluepettals2

Really I've just gotten a years supply

bluepettals2 profile image
bluepettals2 in reply to Loutraki56

concordia was actually found guilty of overcharging i got a letter frm my mp but nothing was obviously done about it!

holyshedballs profile image
holyshedballs in reply to bluepettals2

The case is still pending and had been expanded to include other companies.

bluepettals2 profile image
bluepettals2 in reply to MaisieGray

yes mine was withdrawn about a year ago and i am like a wet weekend!

helvella profile image
helvellaAdministrator

It is good to see more publicity. Thank you.

Loutraki56 profile image
Loutraki56 in reply to helvella

Thank you. I couldn’t let this go without giving my opinion :)

MissGrace profile image
MissGrace

Great article. Great publicity. Thanks for getting the word out - we need as much of this as possible. 🤸🏿‍♀️🥛

Loutraki56 profile image
Loutraki56 in reply to MissGrace

Thank you.

SlowDragon profile image
SlowDragonAdministrator

If an NHS endocrinologist says you have clinical need for T3, you SHOULD BE PRESCRIBED on the NHS. Initially a three months trial via hospital prescription. Assuming that goes well, on going care and cost continues via GP

british-thyroid-association...

New NHS England Liothyronine guidelines November 2018 clearly state on pages 8 & 12 that TSH should be between 0.4-1.5 when treated with just Levothyroxine and to test vitamin D, folate, ferritin and B12

Note that it says test should be in morning BEFORE taking Levothyroxine

sps.nhs.uk/wp-content/uploa...

Dossier presented to Lord O'Shaughnessy November 26th

drive.google.com/file/d/1c2...

Liothyronine gender inequality

england.nhs.uk/wp-content/u...

Recent media coverage

thyroidtrust.org/media-cove...

medscape.com/viewarticle/90...

thetimes.co.uk/article/mill...

en.m.wikipedia.org/wiki/Vij...

theyworkforyou.com/search/?...

If your endocrinologist refuses to provide NHS prescription, they should provide private prescription

A private prescription for 100 tablets x 20mcg Liothyronine would give access to cheap T3 from Germany

31 Euro for 100 tablets

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

Loutraki56 profile image
Loutraki56 in reply to SlowDragon

Thank you so much x

Hashihouseman profile image
Hashihouseman

They can prescribe it they just don’t want to. They follow internal market / clinical guidelines to suit their budgets not the patients whom endocrinologists are almost at war with. Complain to PALS locally amass your personal evidence via frequent blood tests for at least free t3 and free t4 and tsh at same time of day and well away from peak absorption of levothyroxine and keep a symptom diary, read this published paper, it says it all!......

ncbi.nlm.nih.gov/pmc/articl...

Loutraki56 profile image
Loutraki56 in reply to Hashihouseman

Thank you will have a read of this!

in reply to Hashihouseman

Why do they bother to produce T3 at all if they don't want us to have it. It's just all about the money. T3 is cheap, they have blown the prices up and they are all a bunch of cartel dealers.

Hashihouseman profile image
Hashihouseman in reply to

Yup, and the nhs can’t be bothered to fight the cartels. Because a bunch of endocrinologists have decided anyone wanting T3 is a neurotic hypochondriac. The truth is the clique of endocrinologists in the nhs establishment can’t be bothered to read the research papers or think through the emerging science with any objective logic. They are stuck in their own archaic paradigm. Rebellion is the only way forward.

in reply to Hashihouseman

True. Also I've found NHS uk T3 to be the worst and I wouldn't want the NHS to payout the extortionate prices to keep fueling this problem. There are plenty other brands of t3 from other countries that are far better that I've tried. And come hell or high water I get them.

Hashihouseman profile image
Hashihouseman in reply to

Uk nhs has its own T3!? My prescription gets fulfilled by my independent pharmacy obtaining German product in 5mcg pills, which is perfect for my replacement before they found that I was having uk compounded horse sized pills for 2.5mcg doses so full of fillers etc they made me sick. The endocrinologist initially gave me a script for 20mcg pills the size of a pin head and told me to cut them! He couldn’t be arsed to find out what was available, secretly I think he wanted the treatment to fail and knew a big dose or inconsistencies would undermine the treatment (which is also why most of the research data on combined therapies has undermined the position).

in reply to Hashihouseman

Yes, well you got them well sussed. 😊

Loutraki56 profile image
Loutraki56 in reply to Hashihouseman

Where & how could I get T3 from Germany if I need it please? Sorry I’m very naive, would l need a private prescription written out for a certain brand of Liothyronine? Or can it just say liothyronine? My endocrinologist suggested I have 5mcg pills if I can find them.

Hashihouseman profile image
Hashihouseman in reply to Loutraki56

I’ll take a picture of the pot and send it when I get home. You could even try my pharmacy. St Leonards Pharmacy, Exeter, Devon.

Loutraki56 profile image
Loutraki56 in reply to Hashihouseman

Great thanks 👍

Hashihouseman profile image
Hashihouseman in reply to Hashihouseman

I couldn’t post the photograph into a reply so I created a new post, with the picture. I hope you can find it

Hashihouseman profile image
Hashihouseman

I have read it many times and it still provides fresh revelations, [perhaps I’m not as clever as the authors (almost certainly;) but if you’re like me it’s worth really getting to grips with and following up its leads.

In the meantime you could try splitting your levothyroxine dose; if it’s large enough to flood your system with temporarily higher than physiological levels it could well be reducing t3 production and splitting it could ameliorate the negative feedback effect t4 has on diodinase 2 enzyme activity. ........

holyshedballs profile image
holyshedballs

All the guidance in Slow dragon's post says that those patients who need T3 should be prescribed T3. Plus the courts have said that CCGs shoudl implement blanket bans.

i have composed a letter for use by patients who have been told that they cant have any more T3.

Please adapt this to suit your individual needs.

Your Address line 1

Your Address line 2

Your Address line 3

Your Post Code

Dr. name here

Surgery name

Address line 1

Address line 2

Address line 3

Dr.s Post Code

Dear Doctor (insert Dr’s name here)

Refusal to prescribe liothyronine (T3)

British Thyroid Association Management of primary hypothyroidism: statement by the British Thyroid Association Executive Committee 2015

PrescQIPP Bulletin 121 Recommendations 2016

BTA Prescription of Liothyronine in Primary Care 2017

NHS England Items which should not routinely be prescribed in primary care: Guidance for CCGs 2017

Health Act 2009

I write following my consultation with you on (insert date here ??/??/????) during which you informed me that you could no longer prescribe T3. You told me that the reason was the Clinical Commissioning Group/Health Trust had banned prescription of T3. I believe that this decision is irrational and unlawful and therefore I request that you continue my prescription of T3. I have a clinical need, guidance on prescribing liothyronine allows for a clinical need and several judicial reviews have declared blanket bans to be unlawful.

I have a clinical need for liothyronine.

I have seen (insert doctor’s/Endocrinologist’s name here) at (insert surgery’s/hospital’s name here) who has recognised my need for T3 and has advised that I am prescribed T3 because my health did not improve on T4 alone.

(You may include additional information about how you did not thrive on T4 mono monotherapy)

Since taking T3, my signs and symptoms have resolved or partially resolved. (amend the points below as necessary)

•My “brain fog” has cleared

•My face is less puffy

•I feel less fatigued

•I feel less irritable

•I am able to exercise more regularly

•My blood pressure has gone down

•My pulse rate has increased

•I am able to work better

•My relationships with my friends and family have improved

(amend remove or add any other health improvements you have since taking T3).

I have demonstrated that I have a clinical need for T3 that was not met by T4 monotherapy. My health will deteriorate if I do not take T3.

Banning liothyronine is irrational

I have attached the documents detailed above to show that they accept that there is a cohort of patients who do not thrive on thyroxine alone. All of them allow for an exception where the clinical need is clear.

In summary;

•The BTA is a group of expert Endocrinologists who recognise the need for some patients to take liothyronine in their Management of primary hypothyroidism: statement by the British Thyroid Association Executive Committee 2015. I attach a copy with relevant passages highlighted on pages 6 and 10 .

•PrescQipp is a group of pharmacists tasked with reducing the cost of medicines to the NHS who have also recommended that some patients will need liothyronine in their Bulletin 121. I attach a copy with relevant passages highlighted on pages 1 and 4.

•The BTA became aware that their guidance was used to promote a ban on liothyronine and issued direct guidance asserting that some patients clinically need liothyronine I attach a copy with relevant passages highlighted on pages 1 and 2.

•Finally, NHS England recommends that CCGs must make provisions for the prescription of liothyronine. I attach a copy with the relevant passages highlighted on page 8, 19 and 20.

The documents clearly show that despite a drive to reduce the numbers of prescriptions of liothyronine, some patients will still have a need for it to be prescribed to them. To completely ban liothyronine is clearly irrational in the face of those recognised exceptions in the guidance and recommendations above and particularly when a blanket ban is contrary to the advice from NHS England.

Blanket bans are unlawful

Clinical Commissioning Groups have a legal duty to have regard to the NHS Constitution. The 2019 Handbook to the NHS Constitution says:

If a CCG, a local authority or NHS England has decided that a treatment will not normally be funded, it needs to be able to consider whether to fund that treatment for an individual patient on an exceptional basis…In addition, decisions by the courts have made it clear that, although an NHS commissioner …can have a policy not to fund a particular treatment (unless recommended in a NICE technology appraisal recommendation or highly specialised technology recommendation), it cannot have a blanket policy; i.e. it must consider exceptional individual cases where funding should be provided.

By instituting a blanket ban and not considering exceptional individual cases, (insert your CCG here) has not had regard to the NHS Constitution and wold have realised that a blanket ban is unlawful.

The courts are clear that blanket ban of drugs are unlawful. The courts have said that even if a drug is to be restricted on the NHS provisions must be made for clinical exceptions.

The cases stated are:

•R (Elizabeth Rose) v Thanet Clinical Commissioning Group (2014). CCGs should not deviate from guidance just because they don’t like it.

•Regina v Secretary of State for Health ex parte Pfizer: 51 BLMR 189 1999 Guidance should not take the place of a doctor’s (and now patients following Montgomery v Lanarkshire Health Board 2015 and Consent: doctors and patients making decisions together) judgement

•R v Cambridge Health Authority, ex p B [1995] 2 All ER 129, [1995] 1 WLR 898 Authorities must take ALL factors into account when limiting access to treatment. The decision should not be "so absurd or outrageous in their defiance of logic or morality that no reasonable person addressing the question would have come to the same conclusion".

•R. v North West Lancashire Health Authority, ex parte A, D and G [1999] All E.R. (D) 911 Authorities must not establish a blanket ban and must take into account patients individual circumstances

•R v Swindon NHS Primary Care Trust, Secretary of State for Health, ex parte Rogers [2006] EWCA. Civ 392 The concept of exceptionality cannot be too narrow to the extent that no case would be exceptional.

•R. v Barking & Dagenham NHS PCT, ex parte Otley [2007] EWHC 1927 and R. v West Sussex Primary Care Trust, ex parte Ross [2008] EWHC B15, Health Authorities must include divergent expert opinions when considering scientific evidence

•R. v Salford Primary Care Trust, ex parte Murphy [2008] EWHC 1908, Authorities must evaluate exceptionality holistically

Conclusion

I have demonstrated that I have a clinical need for liothyronine, that banning liothyronine is contrary to guidance and recommendations and that a blanket ban is unlawful. I respectfully request that you restart/initiate my treatment. I am afraid to say that if you do not, I will have no alternative but to make a formal complaint regarding your decision.

Yours faithfully

(Sign here)

(Type your name here)

Loutraki56 profile image
Loutraki56 in reply to holyshedballs

Thank you so much for this and taking the time & trouble to compose this for ppl like me and many others in need of support!

appyalison profile image
appyalison in reply to Loutraki56

Best of luck. GP took me off T3. I felt so ill again. Endo was furious and told GP to represcribe. What a relief!

Loutraki56 profile image
Loutraki56 in reply to appyalison

Pleased Endocrinologist spoke up for you, hope you stay well!

Marz profile image
Marz in reply to holyshedballs

Could this be a Pinned Post - for easy access ?

holyshedballs profile image
holyshedballs in reply to Marz

Of course but I don't know how to pin it. I didn't even know it could be pinned. if anybody can do it please go ahead.

Marz profile image
Marz in reply to holyshedballs

I am on a phone and if I scroll down and down I come to Pinned Posts. On a PC they are top right of page !

I will tag Admin and ask if they can do it 😊

SlowDragon helvella SeasideSusie

SeasideSusie profile image
SeasideSusieAdministrator in reply to Marz

Best to ask LouiseRoberts or lynmynott about pinning a post. Hopefully they will respond now I've tagged them :)

Marz profile image
Marz in reply to SeasideSusie

Thanks Susie ! Do love efficiency ! :-)

Black_puma profile image
Black_puma in reply to holyshedballs

My Endo has told me he doubts I would benefit from T3, after my request it be prescribed, so no chance for me to even get it then, time to change Endo!

debsmitch60 profile image
debsmitch60

I have been on Liothyronine from my endocrinologist and never had problem getting it.

Good luck x

Loutraki56 profile image
Loutraki56 in reply to debsmitch60

Thank you x

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