After years on thyroxine and bed bound ,I fought for 2 years too get t3 from my endocrinologist, he gives my one month at a time which is awkward as I have too get my career too go to the hospital every month..I rang Friday to have my prescription renewed and the secretary said I need to come in and see him as she thinks t3 is being taken off of me!! I’d like to be abit prepared as obvthis has made me feel extreamly vulnerable and scared as to what to do... has this happened to anyone else? Is there anything I can do?
Many thanks,as always
Tanya.
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Tanyaking
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This has happened to lots of people, sadly. In the UK T3 is many, many times the price it is elsewhere, and CCGs are refusing to supply it. They don't care that they are condemning many patients to a life of pain and misery.
Read all three of the first links on this page for more information :
You could fight it, but unfortunately I don't know how an appeal is done and what grounds you could appeal on. SlowDragon and SeasideSusie (both admins) probably know.
Some people give up on the NHS and go private - but of course, that involves spending a lot of money on seeing someone privately and getting a private prescription, and finding a private consultant who will agree to prescribe T3 is difficult and not guaranteed. Neither of those two things are cheap, and I don't know how often you would need to see a private consultant for review.
Even once you have a private prescription, filling the prescription is very expensive in the UK and many people send their prescriptions to Germany and possibly some other countries. German T3 is much cheaper than UK T3.
The other option you have is that of buying T3 online. It is legal, but finding a reliable source is a bit hit and miss. There are scammers around who will take your money and then not send anything. But there are some reliable suppliers around.
If you go through the self-medication route, create a new post and ask for reliable suppliers of T3 to be sent to you via the private message system. You can ask the Admins (again via private message) if they have ever heard of any problems with the suppliers you get told about. Don't forget you need to understand how to pay the suppliers. Because of various issues with credit card companies and Paypal it can be quite difficult to get the money to the supplier.
Another thing to bear in mind is that T3 is usually, but not always, sold in doses of 25mcg per tablet when coming from outside the UK, unlike UK T3 which is in doses of 20mcg per tablet.
If so after 3 moths initial T3 trial, via hospital Endocrinologist, ongoing care should then be transferred to GP for ongoing care and prescription. Referral back annually to endocrinologist
Which CCG area are you in?
Some are more difficult than others
Clearly it's entirely about cost, not clinical need
Yes it’s an NHS endocrinologist and I’m in north Somerset...he hasten giving it too me for the last year and I see him every 3 months,my gp wouldn’t take over prescribing it.
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.
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Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
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