Send the Joint Document to your MP and ask for ... - Thyroid UK

Thyroid UK

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Send the Joint Document to your MP and ask for his support!

lynmynott profile image
lynmynottPartnerThyroid UK
11 Replies

We are pleased to tell you that Thyroid UK has been working with ITT (Improve Thyroid Health) and TPA (Thyroid Patient Advocacy) on a joint report entitled

"Improving T3 Prescription in the UK – a Joint Campaign on behalf of Thyroid Patients"

which has been sent to Mr Simon Stevens, CEO of NHS England and Professor Sir Malcolm Grant CBE, Chair of NHS England Board.

We now need your help. ITT recently met with Vince Cable, party leader of the Liberal Democrats, and he has offered to try to get a members debate on the subject of T3.

We need you to contact your MP and send them a copy of the joint report along with our briefing note which explains things in summary (so that they definitely read it).

You can do this by going to our website and downloading the documents from here: thyroiduk.org/tuk/T3-Campai...

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lynmynott
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UrsaP profile image
UrsaP

Brilliant Lyn.

lynmynott profile image
lynmynottPartnerThyroid UK in reply to UrsaP

Thanks UrsaP!

UrsaP profile image
UrsaP in reply to lynmynott

Just sent mine to MP. Not convinced after previous responses but will hope!

Rottie6 profile image
Rottie6

I sent the joint report and briefing note to the CCG and MP on 5th April 2018. No response from the MP and this from the CCG:-

" Somerset Clinical Commissioning Group (CCG) aims to achieve the best clinical outcomes for its patients, in the most cost effective and evidence based manner, within the available resources for commissioning health services. For medication, we do this through the Somerset CCG Prescribing and Medicines Management Committee and the Somerset Prescribing Forum which issues guidance to prescribers across primary and secondary care and ensures that due processes are followed to implement cost effective, safe and evidence based medicine. Through these forums, a Somerset Prescribing Formulary is developed based upon the British National Formulary (BNF), National Institute for Health and Care Excellence (NICE) and best practice evidence.

The situation regarding liothyronine (T3) is that Somerset CCG has historically agreed and commissioned its use in acute trusts as a short term rescue therapy for patients with severe hypothyroid episodes, due to the rapid response of liothyronine. Somerset CCG has never approved the use of liothyronine as a long term maintenance therapy, a position which was agreed with local specialists. The latest guidance from the Royal College of Physicians states:

Overwhelming evidence supports the use of thyroxine (T4 or tetra-iodothyronine) alone in the treatment of hypothyroidism, with this usually being prescribed as levothyroxine. We do not recommend the prescribing of additional tri-iodothyronine (T3) in any presently available formulation including Armour Thyroid, as it is inconsistent with normal physiology, has not been unequivocally proven to be of any benefit to patients, and may be harmful.

There are potential risks from T3 therapy, using current preparations, on bone (eg osteoporosis) and the heart (eg arrhythmia). We note that the extract marketed as Armour Thyroid contains an excessive amount of T3 in relation to T4. Over-treatment with T4, when given alone, has similar risks.

Somerset CCG reviewed its position on liothyronine following recent guidance from NHS England and decided to maintain its non-formulary position."

I also suggested PALS would do well to obtain and read this excellent booklet and received the same response.

"Impaired Sensitivity to Thyroid Hormone (Thyroid Hormone Resistance): A Cause of Heart Disease, Cancer, Autoimmune Conditions, Women's Health Issues, Strokes, ... Fibromyalgia, Depression and Other Issues by Hugh Hamilton"

in reply to Rottie6

Hello I would love to see the overwhelming evidence... I may FOI for it... on the T3 health concerns see the great post from Diogenes on the bone density study... A lot of myths to dispel x

lynmynott profile image
lynmynottPartnerThyroid UK in reply to Rottie6

Which RCP guidance is that then? Why use that guidance I wonder? It was superceded by the BTA guidance. This is soooo wrong! I think this should be added to our templates that we are working on at the moment.

Rottie6 profile image
Rottie6 in reply to lynmynott

Of course it's wrong. This is Somerset - most things have been superseded elsewhere! Would you like me to send the clutch of emails back and forth?

lynmynott profile image
lynmynottPartnerThyroid UK in reply to Rottie6

No don't worry unless you think it adds anything I think their main email says it all. :-(

Pamela0106 profile image
Pamela0106

I love that ITT, TUK and TPA are all working together now on this stuff. Strength in numbers will surely see us make huge progress. Thanks especially from me to Helga from ITT and yourself Lyn who pulled a lot of this document together. I'm in Scotland so a lot of the NHS England points unfortunately don't apply here but we have our own Scottish Parliament and NHS battle going on too. It would be great if these documents could be made suitable for all parts of the UK x

lynmynott profile image
lynmynottPartnerThyroid UK in reply to Pamela0106

Thanks Pamela. I've spoken to Lorraine Cleaver about this but need to firm up an action plan.

Hillwoman profile image
Hillwoman

Thanks for these pro forma documents - very handy, as I'm foggy and debilitated at present. When I've altered the letter slightly I'll email everything to my MP, Laura Pidcock (North West County Durham).

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