Case Details with Clear Evidence that NHS England Guidance on Prescription of Liothyronine is not Being Followed by CCGs

[lynmynott]

As you may know, Thyroid UK, along with other thyroid groups including the British Thyroid Association, has worked on a dossier that was requested by the Lord O’Shaughnessy, the Parliamentary

Under-Secretary of State for Health and Social Care. He wanted to see clear evidence that NHS England Guidance was not being followed by CCGs in respect of the prescribing of liothyronine and this is what we were able to give him.

A joint press release has been published to raise awareness of the dossier. The dossier can be found here: bit.ly/LiothyronineDossier2018

If your MP was sympathetic or interested in this issue, please send them a link to the dossier and ask them to contact Lord O’Shaughnessy for an update.

A meeting is now being organised with NHS England so hopefully, the dossier has given enough evidence to make change. We’ll keep you informed.

[fibrolinda]

Thank you Lyn

[shaws]

Thanks for posting Lyn and we await with bated breath but thanks to all of you who went to The Lords and making some others aware of the crisis of withdrawing replacements hormone that allows us to have a 'normal' healthy life.

[mfinn]

Thank you for all your hard work Lyn. I realise that this dossier is about the withdrawal of T3 but I hope that the dialogue between TUK and the BTA will open their minds to the fact that when a patient is on T3 the precious TSH can become very low and it doesn’t mean that person is hyper or will get heart disease or osteoporosis. If they don’t understand that then how is a GP supposed to? Perhaps I’m mistaken but it seems to me that the BTA, despite taking part in this dossier to make T3 more widely available, still don’t understand why T3 levels should be included in NHS testing. I wonder if there are people going about their business with a low T3 and feeling fine?

[sy28]

I discovered my local CCG is following NHS England Guidance on Prescription of Liothyronine. Having researched, I realise the Consultant Physician I attended is not following NHS England Guidance on Prescription of Liothyronine.

[sy28 in reply to sy28]

I echo Fibrolinda, thank you Lyn

[MissGrace]

Thank you for fighting this fight on behalf of all of us. Not only those who are having their health affected by having their T3 withdrawn, but also for those more recently diagnosed who will never have the option of T3 on the NHS in the first place. All we want is to be healthy functioning citizens. So many of us could be, if we were treated as we need to be as individuals, rather than being at the mercy of arbitrary ‘normal’ ranges and big Pharma profiteering.

[holyshedballs]

Thanks for all the work you and the others have put in to this document. I also hope that this is the start of a new chapter in BTA/Thyroid patient relationships following up on the collaboration on this issue.

[EllaRuby]

Thank you Lyn. It's v much appreciated

[Rapunzel]

healthunlocked.com/api/redi...

It's the same story, every time. The misery of the 20%

i) Incredible fight to find an iota of wellness on T4 against intransigence from medics, clueless more often than not .

ii) Guided, mostly from own/TUK/ITT/TPA research to T3/NDT which brings relief and turns around life

iii) Withdrawal - return to walking death

iv) It's the economy, stupid.

How did we get to this point? Because the purchasing powers of the 8th largest employer in the world lovemoney.com/gallerylist/6... presided over a massive sleep walking exercise, signing off payments that became 6000% larger and thought nothing of it until it was too late and cost too much.

These stories are heart breaking and I had to give up in the end; it's a broken record.

All hail to those who trod this sh*tty path before us because a shed load of us would be dead by now, without you 😘 'Dr Google' say the medics, curling a collective lip. My freaking saviour, Dr Google...

Ave Thyroid posse.

[Marz in reply to Rapunzel]

Am thinking of setting up an Ashram for The Terminally Bewildered - here in Crete - so we can at least invite the local GP around for Coffee and more. Just so he keeps giving us prescriptions for T3 - or brings them along to save us the donkey ride to the Pharmacy .... Please respond by PM as this must remain an Exclusive Club x

[Aurealis]

Lyn, my heartfelt thanks, I will sleep easier at night just for knowing this document exists. I haven’t even read it all yet ...

I just read the last paragraph on page 5 ... shocking

By page 47, I’m feeling very sad, emotionally this is a very difficult read, sincere thanks to all who contributed, its very well organised and presented

Thank you x

[TSH86]

Thank you Lyn and thank you to all who contributed. Thank you is probably not enough for the work that has gone into this.

I too will sleep easier for knowing this document exists. It is so sad and painful to read the cases. I identify with some of the symptoms people have described in their cased and how badly (to put it mildly) we have been treated or should I say treated and then untreated.

I'm very grateful to everyone who helped to get this far.

Hoping and praying for a good result.

Thank you again.

[Dohway]

Thankyou Lyn and all those who have contributed to this work. I read the submission and identified with so many if the case studies. I am still (just about) receiving NHS prescriptions to liothyronine but under threat from my local CCG (Gloucestershire). My GP has been trying to get me an appointment with a local Endocrinologist but in the most recent attempt they just cancelled the appointment with no reason given. There is obviously politicking going on behind the scenes. I now have a third appointment arranged with another Consultant for March and just hope that your national work will have produced some positive results and pressure on CCGs by then to abide by the National guidelines.