Advice on getting CCG to pay for T3

[SAUK]

Hi all. I'm sure this has come up a few times, but I have recently been prescribed and purchased T3 from outside the UK. I am meeting my GP next week to discuss getting it on my regular NHS prescription. Does anyone have any advice on how to approach this? Thanks

[SlowDragon Administrator]

Is the private prescription from an NHS endocrinologist?

If not, you may struggle

Your private endo can write to your GP and firmly request that you are referred to NHS endocrinologist (needs to be a T3 friendly one) - get list of recommended thyroid specialists from Dionne at Thyroid UK or the private endocrinologist may know one

New NHS England Liothyronine guidelines November 2018

See page 6 on private versus NHS

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

Dossier presented to Lord O'Shaughnessy November 26th

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

[Ziburu in reply to SlowDragon]

Thanks for this info.

Amazing isn’t it. All of this angst, months of wasted man hours, by thousands of people is all brought about because a handful of greedy pharma companies have found a loophole and want to get rich at the cost of sick people.

Dealing with these kind of government backed organisations make it clear any future patient consultation will just be ‘for the gallery’ -’ a sham. The clever strategy they’ve come up with, a great bit of creative thinking btw, is to redefine what hypothyroidism is.

The starting brief for this report seems to have been “work out a plan to get people off T3, use your imagination”.

I’ve now seen it all - one get out clause being you have depression and anxiety, therefore we should treat your depression and anxiety (probably with lots of lovely meds). You patient, therefore will be ‘fine’ on bog standard levothyroxine.

So I get that they’re now saying most of the thyroid symptoms are caused by something else. Well that’s great for big pharma, because of course they’ll sell a heap load of other pointless, expensive meds.

Not good for patients though is it, as we are palmed off with the usual pile of rubbish and a bunch of new, side effect heavy, meds. : (

[SlowDragon Administrator in reply to Ziburu]

Stand your ground

Put it in writing and insist it’s on your medical record that you don’t want T3 stopped or reduced

It’s utterly outrageous situation

price is starting to drop - now £204 (was £258)

Anyone who has had T3 stopped by NHS should continue to kick up a fuss and reapply for individual funding request using all this information

[kissemiss in reply to SlowDragon]

Hi SlowDragon....I wonder where I can find the following information: "...price is starting to drop - now £204 (was £258)..." ?

[SAUK in reply to SlowDragon]

Thank you for the very helpful info. My endo who prescribed me T3 is in South Africa. NHS endo refused to acknowledge T3 benefit ( who is now retired). GP refuses to refer to another endo

[SlowDragon Administrator in reply to SAUK]

Roughly where in the Uk are you ?

Thyroid Uk has list of recommended endocrinologists - some are NHS or ex NHS

If GP refuses to refer - then you need to see one privately (GP can’t stop that)

Pick one off the list that is (or was) NHS too. Start on private prescription and then endo can write to GP saying you have clinical need for T3 and that you need referral to NHS for assessment /diagnosis and ongoing care. NHS has duty of care

Several others have successfully done this

[Ziburu in reply to SlowDragon]

I’m under nhs endo, who put me on T3 for clinical need.

But local CCG is refusing to pick up the ball. They say my GP is not qualified to monitor T3! Twisters hey.

[SAUK in reply to SlowDragon]

Thanks. I live in Surrey, England.

[Chillymortal]

The recent guidelines advise that patient welfare should come before cost. If you were originally prescribed T3 by the NHS and had it removed under changes to CCG guidelines there is now a clause stating that it should be reinstated if you were stable on it . Good luck.

[clubby29]

Hi my nhs endo knew I was buying t3 from abroad so when the CCG was put under pressure to behave he got permission for me to have it prescribed by my GP. Problem is I have been taking 25 meg and now have to drop to 20 because nhs t3 comes in that size. Also he has decided I have to get my tsh up to a detectable level or he will drop dose even lower. So the nhs approach is changing but not all for the good, much more arguing to come I feel until they learn that tsh isn’t the golden egg.

[holyshedballs in reply to clubby29]

Hi clubby29

Please bear in mind that the your doctor (GP or Endo) has to work in partnership with you. thy cant unilaterally decide what dose you should be on. This is made clear in the General Medical Council's doctors code of practice "Good Medical Practice" and "Consent: patients and doctors making decisions together gmc-uk.org/ethical-guidance...

This is the basic model from paragraph 5

If patients have capacity to make decisions for themselves, a basic model applies:

The doctor and patient make an assessment of the patient’s condition, taking into account the patient’s medical history, views, experience and knowledge.

The doctor uses specialist knowledge and experience and clinical judgement, and the patient’s views and understanding of their condition, to identify which investigations or treatments are likely to result in overall benefit for the patient. The doctor explains the options to the patient, setting out the potential benefits, risks, burdens and side effects of each option, including the option to have no treatment. The doctor may recommend a particular option which they believe to be best for the patient, but they must not put pressure on the patient to accept their advice.

The patient weighs up the potential benefits, risks and burdens of the various options as well as any non-clinical issues that are relevant to them. The patient decides whether to accept any of the options and, if so, which one. They also have the right to accept or refuse an option for a reason that may seem irrational to the doctor, or for no reason at all.

If the patient asks for a treatment that the doctor considers would not be of overall benefit to them, the doctor should discuss the issues with the patient and explore the reasons for their request. If, after discussion, the doctor still considers that the treatment would not be of overall benefit to the patient, they do not have to provide the treatment. But they should explain their reasons to the patient, and explain any other options that are available, including the option to seek a second opinion.

As you know, relaince on TSH is not logical so stick to you guns and tell the Endo

TSH is not a reliable marker for relief of symptoms

Lack of TSH does not cause osteoporosis or atrial fibrillation

You are aware of the risks of AF from too much T4/T3 for you as and individual

the Supreme Court has accepted that patients can be very knowledgeable about their conditions

the Supreme Court endorses patient support groups and the information they provide

you want to feel good without going hyperthyroid

you are aware of the signs and symptoms of over medication

you have weighed up the risks and benefits

You do not want to reduce your dose (if that is what you want)

hope this helps.

[clubby29 in reply to holyshedballs]

Hi thanks for that I wasn’t aware of this, always good to have some more ammo. Had appointment with go today so they are handling my prescriptions, had a long chat with older go today, he seems to understand issues and kept on prescribing a lady t3 after CCG told them not to. He still wants me to do as the endo asked so we have a base line to work from but he did say if I start to feel bad to phone him and go back for a chat.

[holyshedballs]

There are several guidance documents that state that patients who are already taking T3 should remain on T3. these are

The most important one is the NHS England document "Items which should not routinely be prescribed in primary care:

Guidance for CCGs" england.nhs.uk/wp-content/u...

In it, NHS England say:

"Advise CCGs that a local decision, involving the Area Prescribing Committee (or equivalent) informed by National guidance (e.g. from NICE or the Regional Medicines Optimisation Committee), should be made regarding arrangements for on-going prescribing of liothyronine. This should be for individuals who, in exceptional circumstances, have an on-going need for liothyronine as confirmed by a consultant NHS endocrinologist".

and

"The British Thyroid Association (BTA) advise that a small proportion of patients treated with levothyroxine continue to suffer with symptoms despite adequate biochemical correction.

In these circumstances, where levothyroxine has failed and in line with BTA guidance, endocrinologists providing NHS services may recommend liothyronine for individual patients after a carefully audited trial of at least 3 months duration of liothyronine".

As NHS England refer tot the BTA, the BTA position regarding T3 is here

The British Thyroid Association's PRESCRIPTION OF LIOTHYRONINE IN PRIMARY CARE

british-thyroid-association...

In it, they state "The BTA position statement on hypothyroidism should not be interpreted as a recommendation to not use Liothyronine or as an endorsement for its discontinuation."

and

"Patients already established on Liothyronine and experiencing symptomatic benefit should be allowed to continue with Liothyronine treatment prescribed in primary care. Abrupt change in treatment may impact negatively on well-being."

Even PrescQIPP state in their Bulletin 121: Liothyronine recommendations that patients should be treated according to BTA guidance. (This is ultra vires and against Good Medical Practice but that is another discussion). Bulletin 121 acknowledges the BTA statement advises "that some patients, who have unambiguously not benefited

from L-T4, may benefit from a trial of L-T4/L-T3 combination therapy.They should be supervised by

accredited endocrinologists with documentation of agreement after fully informed and understood

discussion of the uncertain benefits, likely risks of over-replacements and potential adverse consequences and lack of safety data".

and

"Review all patients taking liothyronine (alone or in combination with levothyroxine) for suitability for

switching to levothyroxine. Switch all suitable patients to levothyroxine. For patients under the care of a relevant specialist, involve them in the decision to switch to levothyroxine".

prescqipp.info/media/1423/b...

If I was in your position i would print out the guidance documents.

i would read them in depth so that I know what to point to when talking/writing to the CCG.

I would write to the CCG advising them of the NHS England guidance to CCGs about the need for established patients to remain on T3.

I would advise the CCG that the BTA also recommend that patients remain on T3.

I would advise the CCG that PrescQIPP state that all suitable patients should be switched to T4 is incorrect and in any case, you are not a suitable patient to be switched to T4

I would advise that T4 is not a substitute for T3 and therefore is not suitable for you, as your Endocrinologist has stated, also in line with PrescQIPP statements.

i would advise the CCG that their decision is contrary to the advice given by NHS England, the BTA and PresQIPP and therefore is irrational and illogical.

I would then request that the CCG reinstates your T3.

Dont forget to include the print outs and the letters from your GPs and your Endocrinologists.

Hope that helps.

[SAUK in reply to holyshedballs]

Thank you so much. I am just in the process of getting these all written up and printed off. All this information is so helpful.

[SAUK]

Hi all.

Just to update you that my GP agreed to refer to an NHS endo who will hopefully be willing to prescribe T3 on NHS. First step forward! So thank you for the advice.

My GP then gave me my recent blood tests and is worried I am now hyper. I do not feel hyper and never felt better. She still wants me to drop my levo dose from 100 to 75.

I am new taking T3 can anyone advice me if it is correct to drop my levo dose?

Currently on:

100mcg levo OD (once day) ; 10mcg T3 am and 10mcg noon.

My last bloods were:

TSH 0.05 (0.35-5.00)

FT4 10.8 ( 9-24)

FT3 3.9 (3.50-6.50)

Any advice is always helpful

[SAUK]

Hi all.

Just to update you that the Endo I was referred to agreed to prescibe T3. Only restriction is that I need to pick it up from the one pharmacy on a hospital site every 2 months, but this is a minor inconvenience consider he is willing and agree's prescription issues is straight down to costing rather than any health risk etc. Really great news!

Thanks again for all your help with this frustrating process