T3

[alderney]

How to get my T3 restored which was stopped by my Consultant at the BRI Hospital because of costs,she told me to just buy overseas.My new Dr suggest I try PALS at the BRI too see if they can help,any suggestions much appreciated.

Regards

[buggles84]

Where is this guideline that states once established on T3 ot cannot just be stopped?

Do you have a link please?

[Wetsuiter]

someone on here only the other day had a document stating that every avenue should be explored before advising a patient to buy off the internet. Maybe that would apply here?

[alderney]

How do I make a formal complaint please.

[holyshedballs]

It sounds like your Endo is following old guidance that has been superseded. The whole thrust of the guidance is to switch as many patients on to T4 as possible. the major thyroid charities managed to get some amendments to mitigate the swapping. The document is here: sps.nhs.uk/articles/updated...

The new guidance states in Hypothyroidism

Patients currently receiving liothyronine monotherapy: See section 3.1.1 / 3.1.2 / 3.1.3:

Patients currently prescribed liothyronine, or levothyroxine and liothyronine combination therapy, for hypothyroidism should be reviewed to consider switching to levothyroxine monotherapy where clinically appropriate.

it then goes on to give reasons why patients should be switched.

The key words are "clinically appropriate". Cost does not come in to this guidance but some CCGs have used cost as an excuse not to authorise T3 therapy.

In your position I would complain firstly to the Trust the Endo works for and also to the CCG you GP works for. I would formulate an argument based on my clinical need e.g. list symptoms prior to T4 treatment, symptoms and changes during T4 treatment and the changes affected by T3 treatment.

Here is a letter I composed that you can copy and paste and alter to suit your own needs and circumstances. You may need to google the documents referred to in the text of the letter.

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.

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.

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.

Finally NHS England recommends that CCGs must make provisions for the prescription of liothyronine. I attach a copy with the relevant passages highlighted.

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)

[Limbolass]

Strange coincidence, I too went to BRI for my T3, she also informed me how expensive it was. I now get my T3/Cytomel from (PM me) which is a hell of a lot cheaper than it is in the UK! Levothyroxine does not work for me anymore, I cannot function without T3, literally knackered, bed ridden, nauseas, can't breathe properly...feel like I'm dying. PM me.

[alderney in reply to Limbolass]

Sorry I haven’t replied earlier I couldn’t get signed in.I was under <doctor's name removed by Admin> and she just said it was the cost but the BRI said there was no proof that T3 worked that was why it was stopped,I was told to just buy it abroad as you clearly need it,I would love to know where you get your T3 from.I have been advised to complain about my Consultant’s treatment in the hopes of getting it reinstated as it should not have been just stopped with no regard for your health.Regards Valerie

[alderney in reply to Limbolass]

Hi,

You suggested you tell me where you buy your T3, also have you had any success in getting the B R I to restore your prescription.I have been advised to make a formal complaint for stopping my T3 with out considering my well being.

Regards

[Limbolass in reply to alderney]

Sorry I don't come on here that often. Will PM you.

When I got T3 from BRI it was too low a dose to be effective anyway, she only gave me 10mg. After trial and error I found I need 35 mg daily with my 100mg T4. So I just bought it privately after that.