Letter to a doctor who wants to remove your T3 - Thyroid UK

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Letter to a doctor who wants to remove your T3

holyshedballs profile image
15 Replies

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)

Use of liothyronine (T3) in hypothyroidism: Joint British Thyroid Association/Society for endocrinology consensus statement 2023

Items which should not routinely be prescribed in primary care: policy guidance 2023 updated October 2024

NHS England prescribing advice on liothyronine 2023

Handbook to the NHS Constitution 2023

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 Integrated Care Board/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 delete any other health improvements you have since taking T3)

• 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

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

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

Items which should not routinely be prescribed in primary care: policy guidance 2023 updated October 2024

T3 is in the list of items that should not be routinely prescribed. But the document DOES says:

liothyronine:

• follow NHS England prescribing advice on liothyronine when initiating or reviewing the prescribing of liothyronine

• the recommendations do not apply to patients who have already been reviewed by an NHS consultant endocrinologist

• all other patients currently taking liothyronine should be reviewed by an NHS consultant endocrinologist to determine future treatment plans

• new patients with overt hypothyroidism whose symptoms persist on levothyroxine may be prescribed liothyronine after a 3-month or longer review by an NHS consultant endocrinologist

NHS England prescribing advice on liothyronine says:

• Liothyronine should only be initiated by an NHS consultant endocrinologist when being prescribed for the treatment of hypothyroidism.

• Liothyronine should be prescribed only if no alternative intervention or medicine is clinically appropriate or available for the patient.

• Patients taking liothyronine for the treatment of hypothyroidism who have not already been reviewed, should be reviewed by an NHS consultant endocrinologist.

it also says:

• Patients currently prescribed liothyronine

• Patients who have already had a review by an NHS consultant endocrinologist should continue to be prescribed liothyronine under existing arrangements.

it also says:

• In all cases, the patient and the prescriber should take a shared decision-making approach to reach a decision about the most appropriate treatment for the patient, taking into account the patient’s values and preferences.

The British Thyroid Association in Use of liothyronine (T3) in hypothyroidism: Joint British Thyroid Association/Society for endocrinology consensus statement says: “We suggest that for some patients with confirmed overt hypothyroidism and persistent symptoms who have had adequate treatment with levothyroxine and in whom other comorbidities have been excluded, a trial of liothyronine/levothyroxine combined therapy may be warranted”.

The guidance clearly shows 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

Integrated Care Boards have a legal duty to have regard to the NHS Constitution. The 2023 Handbook to the NHS Constitution says:

If an ICB, 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 ICB here) has not had regard to the NHS Constitution and would have realised that a blanket ban is unlawful.

Case law to say that blanket bans are 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. Further you have not consulted with me to arrive at a shared decision. 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)

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holyshedballs profile image
holyshedballs
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15 Replies
DippyDame profile image
DippyDame

T3 treatment is beyond disgraceful....it's verging on criminal!

I need high dose T3-only and have to buy it and self medicate

Without it I fall off my perch!

I'm in Scotland

Best of luck with this.

arTistapple profile image
arTistapple

Thank you for all this work on our behalf Holy. I can’t get T3 at all but I will definitely study this more closely with a view to adapting it to my possible use.

Your brain seems to be working just fine. Interestingly I was just listening to a PaulRobinson video this morning where he maintained that was the first thing that improved for him on commencing T3.

Maybe that’s another reason doctors don’t want us to have T3. Turns out we might be just as clever as them and we know they hate to be challenged.

PercheronLove profile image
PercheronLove

WOW! That is SUPER helpful. Massive thanks for your time and insight.

Tina_Maria profile image
Tina_Maria

This is great and can be very helpful for people having T3 withdrawn.

Arlie123 , this could be of help for your situation?

Star13 profile image
Star13

Getting your MP involved is key too, it certainly was in my case.

TaraJR profile image
TaraJR

Wow! Brilliant work!

ITT Improve Thyroid Treatment has just updated its template letter to send to MP, ICB, Healthwatch, etc etc if your T3 is refused or removed. It contains all national guidance and parliamentary statements on T3.

ITT is on Facebook only at the the moment, and you can find the letter there. I can make a separate post on this.

holyshedballs profile image
holyshedballs in reply toTaraJR

Please do and if possible post the letter here as well. the more information patients have, the better.

TaraJR profile image
TaraJR in reply toholyshedballs

I've just done that. But I can't copy it onto the post as it's too complicated.

ITT certainly didn't have your examples of case law, which are excellent.

Would you be ok if I shared yours with the ITT group please?

holyshedballs profile image
holyshedballs in reply toTaraJR

Definitely. Anybody can copy share amend and especially update anything I post.

I like what I've seen of ITT but its Facebook based which I don't do.

TaraJR profile image
TaraJR

That's very kind. I know some people don't 'do' Facebook. ITT is working at a website, but we're not quite there yet.

Lily905 profile image
Lily905

Amazing, well put together letter. I'm on T3 Only. I hope I never have to use it. Thank You

Musicmonkey profile image
Musicmonkey

Very pleased to see this useful letter with legal case references. It would be great to hear of patients having success with this letter. Please update here if you get success with this letter.

holyshedballs profile image
holyshedballs in reply toMusicmonkey

Thank you Musicmonkey.

This letter is composed using my experience of dealing with complaints about local authority services. The first thing an Ombudsman will do is compare what has happened against the actions of the LA and any case law that they know about. I have followed the same method in this letter i.e.

what is the guidance,

what are the deviations from that guidance

was the deviation justified

is harm going to result from the guidance.

My personal experience is that this letter is the start of a journey. Some doctors will read it and understand what it means and change their approach to their patient. Others will dismiss it and carry on regardless. Other doctors will mount a defence. Some doctors are so professionally arrogant they don't think the law and logic apply to them.

Musicmonkey profile image
Musicmonkey

I'm hopeful, given the thorough way your letter has been set out, addressing all the relevant issues, that any physician prepared to defend their position must be extremely arrogant, mad or stupid!

holyshedballs profile image
holyshedballs in reply toMusicmonkey

You hit the nail on the head. Most doctors want to make their patients better, but some are as you have said...

Some patients may say mad bad or dangerous to know...

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