NHS England Makes its Decision on Liothyronine

[lynmynott]

NHS England gave its decision at a board meeting this morning about whether liothyronine will be deprescribed by the NHS:

Liothyronine

15. Of those respondents who either agreed or disagreed with the recommendations,

only 16% agree that CCGs should be advised that prescribers in primary care

should not initiate Liothyronine for any new patients.

16. The main recurring theme – particularly from patients and organisational bodies -

is that this is an effective treatment which can, in the appropriate circumstances

contribute to patient wellbeing, quality of life and condition management. The

impact on particular cohorts of patients was also highlighted - notably those who

are unable to take Levothyroxine-T4, or whose metabolic pathway is impaired in

some way.

17. The joint clinical working group therefore recommended the prescribing of

liothyronine for any new patient should be initiated by a consultant

endocrinologist in the NHS, and that de-prescribing in ‘all’ patients is not

appropriate, as there are recognised exceptions. The recommendation would

therefore be changed to advise prescribers to de-prescribe in all appropriate

patients.

Thyroid UK is not happy with the word "appropriate". They have not explained who would be "appropriate" to remain on T3. The definition of "Appropriate" is very subjective and NHS England should have gone further and explained that patients who do not do well on levothyroxine should be given a trial of T3.

The section of liothyronine (starting on page 40) is very interesting and shows that not just thyroid patient groups wanted to see liothyronine continued.

I would like to say a big THANK YOU and WELL DONE to everyone who supported our campaign and who took part in the consultation. Now is the time for patients who have been de-prescribed to go back to their GP/Endocrinologist and show them the NHS England decision and push for having it represcribed again.

Patients who are not well on levothyroxine now need to push for an endocrinologist appointment for a trial of T3!

This doesn't mean that Thyroid UK will stop campaigning as we really want T3 to be tested as routine in all patients and trials of T3 given more readily. Then, of course, there's the fight to get the price of T3 reduced!

You can read a transcript of the meeting here: england.nhs.uk/wp-content/u...

[Clutter]

Phew! That's a relief, Lyn.

Thanks for posting, I'll read the transcript later.

[Marz]

I feel getting past the Endos could be an issue - especially as they were rarely pro T3 even before the price hike .....

[Clutter in reply to Marz]

Marz,

So many hurdles, the first being getting your GP to make a referral to a NHS endocrinologist.

[Marz in reply to Clutter]

So true !

[ChronicTonic]

Thank you Lyn for all your hard work - sounds like the NHS is finally beginning to listen!

It’s great this is better than previously, but I really appreciate how frustrating it must be for you to be in the frontline with so much still to be done.

Thanks again for your continued energy in trying to get the message through on our behalf,

Abi.

[amala57]

Great news!

[SlowDragon Administrator]

Well done Lyn, and everyone who worked so hard to fight this.

Brilliant news

Next step is to get more endocrinologists to understand the benefit of T3. But also just how common dire vitamins levels are that stop T4 and T3 working. Low vitamins are so often the reason they get poor response from adding T3, then they dismiss it as ineffectual or even dangerous

[Clutter in reply to SlowDragon]

SlowDragon,

I think it is GPs who need better understanding of vitamins/minerals as it's not just thyroid patients who are impacted by deficiencies.

[lucylocks in reply to Clutter]

I agree Clutter, when I first saw an endo. and mentioned the importance of supplementing vitamins and minerals, he said if you are eating a balanced diet then you should get all the vitamins and minerals you need. He even said not to take iron as it can stop levo. from working, I of course corrected him, saying yes that is why you have to take it four hours away from your levo. He just stared at me.

[Clutter in reply to lucylocks]

Lucylocks,

Nutrition isn't taught in medical school so GPs and endos are pretty ignorant about vits/mins but I believe that will be changing and nutrition is going to be included on the curriculum.

[SlowDragon Administrator in reply to Clutter]

Hardly any GP's or endo's think vitamins or minerals are in any way relevant, despite it being clearly listed that low vitamin D, folate, ferritin and B12 impact thyroid function.

There is complete disinterest in looking at the whole picture and considering the affect on the gut, or of the gut.

Box one towards end on this link clearly lists these vitamins are important reasons for non resolution of thyroid issues.

onlinelibrary.wiley.com/doi...

Hippocrates knew the importance of the gut over 2000 years ago

[Lillie23 in reply to Clutter]

So true!! Spoke to my doctor sister today and she said that she had a chat with her pharmacist who suggested her getting a filter that filters out fluoride and chlorine in the water, apparently where she is had a lot of it too. She didn't know that it stopped absorption of iodine. And obviously nor did her endo or GP! I know because of research and being on these sites, so I tend to educate her haha. I now use fluoride free toothpaste, when I saw dentist for check up, he was horrified and said but it's so good for you teeth! To which I replied but not for my thyroid! Conversely when I picked my T3 up the other day the pharmacist didn't know about the CMA news last week!! I repair sometimes!! Going to go to my 1st PPG meeting next month which should be interesting.......

[marigold22 in reply to SlowDragon]

I think it is so incredibly appalling that endocrinologists (even Professors of Endocrinology) simply do not know what T3 is and does in the body. What is their salary? One cannot really call them Specialists in Endocrinology..... because they are not.

[Nanaedake]

I don't think it will help me, with only 1 Endo accessible in a rural location who is a diabetic specialist. Don't think they will accommodate.

[Pascha1 in reply to Nanaedake]

Nanaedake You could find an Endo that is thyroid specialist who is sympathetic in another area if you are able to travel , Gps can refer you to other Areas ask in a new post and ask if you can have the list of sympathetic Endocrinologists that prescribe NDT or T3 and see if you can find one not to far away

[Nanaedake in reply to Pascha1]

Yes, got the list but no-one for miles and miles and GP will not refer. I'm a lot better now than previously and slowly getting my fitness back again.

[lucylocks]

It does give us some hope.

Thank you for all your hard work.

[Scazzoh]

My Functional Doctor and GP have adopted a 'twin pronged' approach to the CCG for me and, based on a report I had done last year by an Endo, who suggested a trial of Liothyronine, I have been offered such and am now in possession of some Teva. I am 'washing out' the T4 and will start the Teva on Saturday. All because I approached my G.P. when getting Nature Throid became an issue.

[SlowDragon Administrator in reply to Scazzoh]

I have not tried a Teva T3, but there is extremely noticeable difference between Mercury Pharma T3 and Morningside Healthcare T3. So if you don't get on with Teva, try another.

[Scazzoh in reply to SlowDragon]

Thanks, I'll bear that in mind.

[Bettan in reply to Scazzoh]

The very great news about Teva t3 is that it does not contain the filler Lactose.

[diogenes Remembering]

I'm very pleased with the tacit admission that T3 treatment is necessary for some patients and that T3 should be made available for those patients. The kicker is "what do you mean by some patients". Is this an assumption that all patients requiring T3 as a supplement to T4 are presently properly treated? It is good that at least the treatment is there. Its a scandal that it is so parsimoniously doled out to far too few patients who would benefit. I estimate only about 10000 patients at most take T3 in some form in the UK, where even by accepted frequency, over 40000 should be eligible, and by assuming only 10% of patients need T3, 100000 at least are in need. Still a long way to go.

[lynmynott Partner Thyroid UK in reply to diogenes]

Exactly! Although they do state, "

Industry respondents support the continued prescribing of Liothyronine in accordance

with NICE guidelines which state that T3 is not initiated in primary care but “may be

considered by endocrinology specialists… in people who have persistent symptoms

despite compliance with Levothyroxine treatment and a TSH value in the normal range.”

(cks.nice.org.uk/hypothyroid...

I guess it depends on which parts of the document clinicians and CCGs will take note of!

[SlowDragon Administrator in reply to diogenes]

Just over 3% of the UK population are prescribed Levo

ncbi.nlm.nih.gov/pmc/articl...

"From the above data, one can estimate that slightly over 3% of the population of England were prescribed regular Levothyroxine during 2007"

Population of UK= 65.64 million

3% is 1,969,200 so 10% of that = 196,920 who would likely benefit from T3

DIO2 gene is a common variation. 16% of the population according to this research

academic.oup.com/jcem/artic...

That might suggest that 16% of those on T4 would benefit from addition of T3

It would strongly suggest NHS should be undertaking this DIO2 gene test for anyone who is struggling on T4 only

[diogenes Remembering in reply to SlowDragon]

I read that Dr S Pearce of Newcastle estimates only 6000 patients get T3, and he's in a wax because the NHS decision means more endocrinologists have to be trained to cover the extra work. I would say, "retrain them all, old and new, to get uptodate with the latest facts re T3 requirements".

[SlowDragon Administrator in reply to diogenes]

Strongly suspect Prof S has case of sour grapes.

Instead he should be welcoming positive steps to improving the woeful current thyroid treatment.

[Kitti1 in reply to SlowDragon]

Thats the problem tho SlowDragon people like that don't think there is anything wrong with the current treatment.

Such an uphill battle

[Hidden in reply to SlowDragon]

Just out of curiosity I will be having the test when I return to the UK. I cannot take Levo it makes me ill.

I am now taking NDT with T3 and I am better but I am curious to find why.

[lynmynott Partner Thyroid UK in reply to Hidden]

Hi Bunnyjean,

It could be one of a few reasons. Some people's bodies just do not assimilate synthetic medications very well; some people are intolerant to one of the fillers or binders in the tablet such as lactose; for some they can't convert very well and need T3 or NDT.

It can be a long process to find out why...

[Katykaz in reply to diogenes]

I'm in agreement with you my doses of Levi have been up and down for 8 years. I've seen one specialist at the beginning of my journey of hypothyroidism I'm constantly fobbed off about my tiredness and lack of energy.. it should be available for all as a test case to see if it helps more people. My Levothyroxine goes from anything between 125 to 200mg depending which doctor gets to my blood results

[Babette]

Thank you Lynn and everyone who provided feedback for the consultation, wrote to their MP, submitted a form to the CMA... I think the powers that be realise we won't take this lying down!

Whilst I firmly believe that NHS prescriptions should be challenged to ensure value for money, the way this has been done has caused an unacceptable amount of stress for quite a lot of people.

[Quokka]

Thanks to everyone for campaigning!

[Kitten1978]

Thank you Lyn. What they've come up with is definitely NOT a perfect solution. It is a step in the right direction though...

[Hennerton]

Thank you Lyn and the rest of your team for all your hard work and for keeping us advised of events as they occur. This is great news but I am puzzled that thyroidectomy patients get no mention, when we have completely lost the ability to make 20% of our daily T3 requirement. There are studies to confirm this huge problem and I cited it in my reply to the petition. Did anyone else?

[lynmynott Partner Thyroid UK in reply to Hennerton]

I mentioned thyroidectomised patients in my submission. It seems common sense to me that patients with no thyroid need T3 but often common sense flies out of the window when dogma is involved....

[Hidden]

Thank you Lyn and your team for all your hard work on our behalf. Still a long way to go but on track.

[galathea]

This is worrying.... they just dont understand how thyroxine is inactive unless it is converted into triodothyronine. (Liothyronine is a synthetic version of triodothyronine).

Maybe the problem all along has been that they think liothyronine is just an expensive version of thyroxine?

Page 27. :

Liothyronine is used to treat Hypothyroidism (when the thyroid produces less thyroid hormone than it should). It has a similar action to Levothyroxine but is more rapidly broken down in the body and has a more rapid effect.

[lady_eve]

First, I want to say thank you and well done for the invaluable work you have done on this. I know it doesn't end here.

On the surface, this looks like good news. But I have a bad feeling, particularly around the fact that T3 prescribing will become the responsibility of secondary care practitioners - hospital endocrinologists.

How will this work in practice?

Either patients will have to wait weeks (months) for repeat appointments to secure ongoing treatment long-term, or the endo will simply issue a letter of prescribing recommendation to the GP. In which case the GP, who probably answers to another CCG, will be at liberty to refuse on grounds of cost or unspoken personal objections to T3, because the responsibility for 'safe prescribing' rests with him/her.

I hope I am wrong and missing something. Community, please tell me I am wrong.

[galathea in reply to lady_eve]

Well, they are going to need many many more endocrinologists for a start! Its not been thought through has it!

[shaws]

The following are two excerpts which I'd like someone to explain more clearly particularly No.17. I am reading that it is up to the 'prescriber' and not the patient who makes the decisions and I know where that will end up.

16.

The main recurring theme particularly from patients

and organisational bodies is that this is an effective treatment which can, in the appropriate circumstances

contribute to patient wellbeing, quality of life and condition management.

The impact on particular cohorts of patients was also highlighted - notably those who are unable to take Levothyroxine T4, or whose metabolic pathway is impaired in some way.

No.17

The recommendation would therefore be changed to advise prescribers to deprescribe in all appropriate patients".

[lynmynott Partner Thyroid UK in reply to shaws]

What No 17 means, in a terribly written, possibly on purpose way, is that prescribers should only deprescribe in patients that they think are appropriate to have their T3 deprescribed. As I said in my post, I am not happy with the word "appropriate". What do doctors do to decide which patient is appropriate to be deprescribed? Do they ask the patient, "Did you feel ill on T4?" and "Are you feeling well on T3?" and then decide?

Patients need to make a note of all their symptoms, along with the impact on their lives before and after T3 and hand it to their doctor and ask them to place it in their medical file so that it's in their records for any future possible changes.

[shaws in reply to lynmynott]

Thanks Lyn

[Kangagirl]

Thank you very much Lyn for all your hard work on our behalf. At times I don't know what I would have done without the advice gained from this site and the wonderful people here.

[lynmynott Partner Thyroid UK in reply to Kangagirl]

Thank you Kangagirl! Our admins work really hard to help people. x

[silverfox7]

Just been pointed in the direction of this thread. What really upsets me is that they don't realise the importance of testing T3. Why can't they see it's important!

Just want to thank you as well well for all your hard work. We have to keep nibbling away until the barriers fall.

[Chillymortal]

I’m concerned. Since moving to a new area and subsequently new GP and health authority I have had my Liothyronine prescription removed. I really don’t cope well on levothyroxine only even with an increased dose. Spring - autumn 2018. It’s been refused by the GP, CCG and consultant.

[Chillymortal]

If this is the case now, why have I recently had my prescription for Liothyronine refused by the local CCG? I have been stable on combination levothyroxine and Liothyronine for 15+ years, but moving to a new area has raised this hurdle.