what are the most recent guidelines gps and Endocrinologists should be going off when looking at thyroid blood test results ?

[Merlio18]

Thyroid prescribing guidelines 2019-2020

[Lalatoot]

nice.org.uk/guidance/ng145

[Merlio18 in reply to Lalatoot]

Thanks so is there not optimal now as it doesn't state anything in that document just that it has to be in range but last year I read a document that stated the had to ensure it was under 1.5?

[Merlio18]

Just to add my recent results are showing my thyroid supplements aren't strong enough as my TSH is too high and T4 to low, I am going to the gp tomorrow to ask to refer me to another Endocrinologist as mine won't prescribe me liothyronine on a name patient basis and it is blacklisted in my area so I can't get the brand I need so I need to convince the GP that I need to get referred to this new Endocrinologist I want to be referred too and stress it's very important as my levels aren't optimal but I want to find the official document which states what they should be following so they have no option but to refer me as I thought they had to make sure a patient's TSH was under 1.5 when I am just being left to self source and no one is monitoring my levels or doing anything about the fact they aren't optimal ?

Last blood results were bk in Nov 19

TSH 3.84 (0.35-5)

T4 11.6 (11-23)

T3 5.4 (3.9-6.8)

Note I have only felt well when my TSH is suppressed usually between 0.5-1.5

And when I have managed to get my T4 to around 17 but I haven't managed to do this for a long time

Also What is optimal level for T4 when on NDT or metativive supplements would it be mid range around 14-19?

[Lalatoot in reply to Merlio18]

Your tsh is not suppressed at 0.5. It is suppressed when it goes under range so lower than 0.35.

The optimum level for t4 depends on the individual. Some need it well over half way through range and others can function with it low in range. It is only by trial and error that you find this out.

[Merlio18 in reply to Lalatoot]

I meant optimal not suppressed as in beyond 0.1 etc as that gives me hyper symptoms but when it's been between 0.35-1.5 I am sure I read a document were it stated that Gps and Endocrinologists should be making sure patient's TSH should be 1.5 or below as that is the optimal level has this changed ?

[Wetsuiter]

Maybe something from Leeds ? I cant a link to it, but remember it was quite specific (oooo, get me, REMEMBERING stuff!)

New guidelines have a bit about dosing that might help you

section 1.3.6 of NICE guidelines

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

You can use it to get an increase in dose of T4, then go from there.

Edited: Just realised, are you self medicating on T3 already? In which case Ive misinterpreted your results.

[humanbean]

As a result of the continuing fragmentation of the NHS I'm under the impression that some CCGs are developing their own guidelines for thyroid treatment that may use NICE guidelines as a starting point but they then diverge and make it harder still to get treatment.

I could have got the wrong end of the stick though.

[Merlio18]

Hi yeah I am self sourcing as my endo won't authorise the brand of liothyronine I need as I need free from brand and I can only get it on a green prescription and it's blacklisted in my area so he will only prescribe through hospital as he is covered on insurance so left me with no meds as I have had bad reactions to hospital liothyronine and started to develop allergic type reactions to levo so had no choice iav tried NDT but on metativive at the minute but still not great, you can't get the free from T3 offline so I am stuck as it's anus brand only through certain community pharmacies can order it In with a green prescription so I want to try get the GP to grant me a referral to another endo outside my area and to highlight that no one is monitoring my thyroid and that my TSH isn't optimal as it's 3+ etc that's why I wanted to try find the document as I was always between tsh 0. 3-1.5 on lio and levo combi so I thought might help my case as don't feel well with my TSH 3+ for me to get referred to another endo as my endo doesn't care and has even said I can refer to someone more knowledgeable as he doesn't want the responsibility and he is refusing to authorise it as it's blacklisted knowing I am on no medication and having to self supplement since 2018 but I can't seem to find the link were it states optimal TSH levels in the guidelines.

[fuchsia-pink]

Good luck with GP and a new green prescription x

[Merlio18]

Thanks it was pointless to be honest she said she didn't know if I could even get referred for a fourth opinion but surely you can as she said the CCG have to authorise it but due to the situation I am in the fact my endo won't authorise the brand I need as I have intolerances to the ingredients I need to get referred to another endo and even in his letter he said get referred as he won't help me but then if I have to be discharged and the fourth opinion rejects my referral then I will be left with no Endocrinologist even if he ain't giving me the brand I need one is better than non, the doctors have no clue anymore whats going on and she really didn't seem to show any sympathy she just said I would try and I have other patients to see ! I don't think when I asked if the whole of the uk had blacklisted she seemed to think they had but I am sure that is not the case so I am back to square one, no one is monitoring me self sourcing it's absolutely ridiculous and there is so many people out there on their own self sourcing how can the NHS get away with it they have a duty of care.

Surely there is someone higher we can rise this issue to as there is so many people struggling in the same boat and the treatment of thyroid patients is getting covered up.

[Miffie in reply to Merlio18]

As you are going to need to self source to get what you need, why bother with an endo. They can only be responsible for your health if you take what they recommend. Has an increase in levo been tried to reduce TSH? I would be tempted to self source and forget about referrals if I was in your shoes. It’s what I do.

[Merlio18 in reply to Miffie]

I am self sourcing been for past 18 months tried NDT and various supplements but nothing compares to the brand of liothyronine I tried and got my life bk on before they blacklisted it so never feel well hence why I went bk to the gp to demand a referral after the CCG report came bk to another endo as he did say he was happy to refer me as he wasn't gonna help me get the brand I needed he refused to fill out the CCG form, I can't take the liothyronine online as it has loads of inactive ingredients in so I wanted to go to get another referral incase this next endo actually acknowledged my situation and if he was confident in prescribing maybe he would authorise the form so I can get the brand I need but the GP isn't helpful at all saying they would have to get special funding for it! All down to costs it's absurd.

what brand of medication are you taking has it helped you stabilise your health?

[Miffie in reply to Merlio18]

Sorry you are having such a dreadful time. Yes, I believe money does count. I try not to ask too much as I have less need than so many on here. I currently take NDT Thyroid S. I was prescribed NDT for over forty years before being put on Levo. I was never right on levo so finally after asking for a referral ( tongue so swollen I could not eat, a symptom of things being very wrong) and being instantly refused I decided to take the matter into my own hands. I have way more experience of how NDT works for me than any health professional currently treating patients.

I sincerely hope you find a way forward as well.

[holyshedballs]

That's a good exam question!!

The law says that doctors must have "Due Regard" to guidance produced by National Institute for Health and Care Excellence (NICE).

However, NICE says that their guidelines must not replace the skill and judgement of a doctor.

NICE explains, in a document on the legal context of its guidance (2004) that: "Once NICE guidance is published, health professionals are expected to take it fully into account when exercising their clinical judgement. However, NICE guidance does not override the individual responsibility of health professionals to make appropriate decisions according to the circumstances of the individual patient in consultation with the patient and/or their guardian/carer".

Doctors have a duty to be "familiar with relevant guidelines and developments that affect their work" (GMC, Good Medical Practice, paragraph 12). This does not mean they cannot depart from guidance in specific situations when they consider it is in the patient’s interests to do so.

In the case of thyroid disease, relevant guidance comes from the

British Thyroid Association, Management of primary hypothyroidism: statement by the

British Thyroid Association Executive Committee 2015; PRESCRIPTION OF LIOTHYRONINE IN PRIMARY CARE 2017

NHS England - Items which should not routinely be prescribed in primary care:

Guidance for CCGs,

PresQuipp.Switching liothyronine (L-T3) to levothyroxine (L-T4)

in the management of primary hypothyroidism (updated but not fully published)

It would be very help full for the patients support groups to write their own guidelines (together) so they can be referred to in various court cases.

Montgomery v Lanarkshire re emphasises the Good Medical Practice duty to listen to patients and take account of their knowledge of their disease.

Paul Robinson has written 3 very helpful books on the management of thyroid disease but they cannot be considered as guidelines. But patients are able to refer to it in a consultation. His books are fully researched and reviewed by eminent endocrinologists. They just don't carry the "legal" weight that NICE guidelines do.

The general rules with guidelines is that they should be followed unless there is a good reason to deviate from them. (Ali v Lewisham) However, the above guidelines have major flaws in them so that is the good reason to depart from them.

[Merlio18]

Thanks for the reply that's really interesting as the endo knows I am sensitive to the ingredients I have photo proof and symptoms etc point to reactions tho when he wrote to the immunologist he failed to mention all my reactions were immediate with levo I wonder why ....and the immunologist just said to cut out and reintroduce the medications to see if a reaction occurs which it did yet still he refuses to acknowledge it and states he will only prescribe liothyronine through the hospital as he is covered by the insurance because it is blacklisted now he won't , and that he is happy to refer me to another endo but then I might be in the situation where they reject the referal.

So really guidelines are pointless as non of them follow the procedures as I wrote a report to the CCG and it was ridiculous they sent it to the endo I was reporting about for leaving me with no medication I could tolerate and all that happened was the endo tried to justify that he was prescribing me the medication through the hospital yet failed to report I was sensitive to the brand and the CCG said like you have mentioned that it's the responsibility of the endo but surely they can't just fob you off and say that as technically they are not following a duty of care guidelines which states that patients should not be without medications that they required especially if it's for a long term health condition yet for some reason with thyroid patients we seem to just be pushed to the side and expected to survive no matter what.

I have one of the books by Paul Robinson he must be able to tolerate the brand that the hospital's has a contract or some how he has managed to keep getting a prescription through the GP but that would only happen if the endo authorised a special form and my GP said now no doctors can give a green prescription for it it has to be a endo who authorises it from their end and I wonder how many of Endocrinologist are in the UK helping thyroid patients and actually authorising on a name patient basis for patients in this situation.......? I would love to know!

[holyshedballs in reply to Merlio18]

The guidelines that most endos and CCGs an re not helpful to patients at all in most cases. What CCGs and Endos do not see is that there is always a provision for the exceptional case. The BTA actually release further guidance to recommend that T3 is instated or continued for those who need it

British Thyroid Association Executive Committee 2015; PRESCRIPTION OF LIOTHYRONINE IN PRIMARY CARE 2017

liothyronine is not black listed and the NHS document makes it clear that those who need T3 should continue if clinically necessary.

In rare situations where patients experience continuing symptoms whilst on levothyroxine (that have a material impact upon normal day to day function), and other potential causes have been investigated and eliminated, a 3 month trial with additional liothyronine may be appropriate. This is only to be initiated by a consultant NHS endocrinologist. Following this trial the consultant NHS endocrinologist will advise on the need for ongoing liothyronine.

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

Current guidance is that Endos initiate T3 and GPs continue. its a pity that your Endo has "misread" the guidance.

if I was in your shoes, i would advise him that there is no blanket ban on T3, a blanket ban is unlawful, the guidance recognises that some people need T3 and he should prescribe the T3 that doesn't cause you allergic reactions. otherwise I will make a formal complaint for not following the guidance and Good Medical Practice.

[Merlio18 in reply to holyshedballs]

Hi thanks I thought I read that guidance to as I did a lot of research when I was ill but all the endo and the GP keep saying to is it's blacklisted and they won't do anything so I am kinda stuck as I went to the CCG to complain and they were no help saying the endo is responsible for your care and if he won't authorise a special case to find another endo how can that be right ? ? But the only other place I know of complaining and highlighting this situation too is the Ombisbun so not sure where to make a formal complaint for not following the guidance and lack of care because I that's what I was originally reporting to the CCG who basically masked over it and sent it to the local hospital trust who then got the endo to report on it which was ridiculous as he just justified his actions and left out a load of vital information so I am hitting a brick wall constantly as have no clue who to complain to above the CCG or endo.

[holyshedballs in reply to Merlio18]

Its NOT right!!

The Guidance is clear. Unfortunately, people are people and don't always do the right thing. they even dig their heels in even if they know they are wrong.

The Ombudsman could be the last port of call but you need to get your ducks in a row to prove your case. The Ombudsman's staff will ask an Endo what the procedures are rather than investigate them selves. They are not lawyers.

Here is a model letter you can copy and paste into a document. Please amend it to suit your own circumstances and download the documents to back up what it says.

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)

[Merlio18]

Hi thanks for the letter that's really good info I have already write emails to the endo about it and spoke to he gp about it and wrote the report to CCG so where's best to send this letter as the endo just replied with a letter bk to the gp after the CCG report saying he is happy to refer me to another endo so I am not sure if sending the letter to this endo is going to change his decision as he has already made it and stated it in the CCG report which the CCG have done nothing about just said its at the Endocrinologist discretion and is responsible for your care so they said if he thinks you don't need it and won't acknowledge your sensitives and won't fill out the form there is nothing you can do but find another endo so not sure where would be best to send the letter ?

[SlowDragon Administrator]

Which brand of T3 do you need

List of U.K. options here

thyroiduk.org/medications-f...