NICE guidelines liothyronine

[Flecmac]

Am I mistaken in thinking I have read in NICE guidelines that GPs can take over prescribing Liothyronine under NHS endocrinologists instruction? I cannot find this now.

Thank you

[SlowDragon Administrator]

Correct

Initial trial must be initiated by NHS thyroid specialist endocrinologist and is prescribed via hospital pharmacy for 3-6 months

Assuming trial is successful, endocrinologist writes to GP to take over ongoing care and cost of prescription

NHS England Liothyronine guidelines July 2019

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

[Flecmac in reply to SlowDragon]

So is RMOC guidelines part of NICE guidelines? Can I quote these as NICE guidelines?

Thank you.

[TaraJR in reply to Flecmac]

NICE craftily buried the RMOC guidance in their own guideline. It was easier to find if you download the PDF, rather than read it online (how many drs would do that?!)

NICE committee were strongly divided on the use of T3 so I assume RMOC was hidden away for that reason.

However NICE does include a reference to RMOC and the understanding is that, if NICE references something, then NICE supports it.

I wrote a description of how to prove NICE supports RMOC.

Some Drs and CCGS are refuting that NICE supports T3, so use this if helps:

NICE NG145 ‘Guideline: Thyroid Disease Assessment and Management’, published in November 2019, refers commissioners and clinicians to RMOC ‘Guidance - Prescribing of Liothyronine’. There are two links to RMOC.

Link 1

- nice.org.uk/guidance/ng145

- Download guidance as PDF

- Page 34 Managing primary hypothyroidism.

- Recommendations 1.3.3 to 1.3.7

- To Page 35 ‘Why the committee made these recommendations’

- At end of first paragraph, “NHS England’s specialist pharmacy service has produced advice on prescribing liothyronine” which links to RMOC Liothyronine Guidance June 2019

Link 2

NB When reading online, the link is only in the NICE Rationale and Impact section

- nice.org.uk/guidance/ng145/...

- Section: Managing primary hypothyroidism

- Recommendations 1.3.3 to 1.3.7

- Why the committee made the recommendations

- Thyroid hormone replacement

- At end of first paragraph, “NHS England's specialist pharmacy service has produced advice on prescribing liothyronine” which links to RMOC Liothyronine Guidance final

[Flecmac in reply to TaraJR]

Thank you. Where is your description of how to prove NICE supports RMOC please?

[TaraJR in reply to Flecmac]

It's in my reply in italics. Do you need any more info?

[Flecmac in reply to TaraJR]

Ahhh sorry wasn’t sure if the whole of the italics were yours. I may need more help at some point, it’s all very complex and knowing what to give them as evidence is really hard. I’m sure they won’t want to wade through hundreds of pages. I had already sent my letter when info started coming through. Thank you ☺️

[TaraJR in reply to Flecmac]

I wrote out how to describe how to find RMOC in NICE, as it was hard to remember it every tome I wanted it!. All the italics are mine, but anyone can use them. Are you on Facebook? If so, do join ITT Improve Thyroid Treatment, where we have template letters containing all the national guidance that applies to T3.

[Flecmac in reply to TaraJR]

Thanks.Yes I joined couple of years ago. I tried the template letters but there seemed to be too many links. I started writing in January and it became a real chore so I decided to rewrite without putting all the links, some of which didn’t seem that relevant really. I have told CCG that I have evidence.

It’s unlikely that my CCG will allow T3 but I think it’s important to try.

[TaraJR in reply to Flecmac]

Do check back with ITT, and send the latest letter. CCGs go strictly by national guidance which is why all those inks are included. They can barely argue against all those. Which CCG are you under?

[Flecmac in reply to TaraJR]

Nottingham and Nottinghamshire, which doesn’t agree with prescribing T3. However my endocrinologist is in Coventry where T3 is prescribed where needed.

[TaraJR in reply to Flecmac]

I know Nottingham is one of the bad CCGs. Can you get it from Coventry? If so, will the endocrinologist keep on prescribing, rather than pass it over to the GP?

[Flecmac in reply to TaraJR]

He has already extended my trial and cannot prescribe further.

[TaraJR in reply to Flecmac]

I'm so sorry to read that. Please use our ITT template, as it is designed to prove they are ignoring ALL national guidance.

[Flecmac in reply to TaraJR]

I can’t find the letter on ITT now. Has it been updated since last year?

[TaraJR in reply to Flecmac]

Yes, a couple of months ago. If you give me your name I can tag you in the right place. Send me in a private message?

[Flecmac in reply to SlowDragon]

Unfortunately my NHS endocrinologist has not asked them to take over prescribing in his reports as he said he would last year.

[SlowDragon Administrator in reply to Flecmac]

Roughly where in U.K. are you

Some CCG areas are worse than others re funding

Prescription numbers in England, searchable by CCG area

openprescribing.net/analyse...

How much T3 are you prescribed?

Which brand?

[Flecmac in reply to SlowDragon]

I am in Nottingham but my NHS endocrinologist is in Coventry.No brand on the bottle.

I take 10mcg Liothyronine.

[helvella Administrator Thyroid UK in reply to Flecmac]

There is only one make of 10 microgram tablets licensed in the UK - Morningside.

My document says that, and has identification information (tablet markings).

When a pharmacy dipsenses a prescription , they must supply a Patient Information Leaflet - if requested. And that must be the correct one for the tablets dispensed (same make, same dosage).

Also, always ask for the batch number and expiry date.

helvella - Thyroid Hormone Medicines

I have created, and try to maintain, a document containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world.

From Dropbox:

dropbox.com/s/shcwdwpedzr93...

From Google Drive:

drive.google.com/file/d/12N...

[Flecmac in reply to SlowDragon]

Nottingham is in the middle of the graph so not good. Coventry is at the top!! What a shame I don’t live there!!

[CabbageCat]

Am I right in thinking that, according to everything I've just read, T3 CAN be prescribed to NEW patients if determined valid?

[Thyroidgirl1236]

Yes this is true. That’s what I did but had to see a private Endo for a year first. Got there in the end though and just started T3 treatment and hoping for improvements

[Flecmac in reply to Thyroidgirl1236]

My Endo is NHS in area that agrees to T3, however the area I’m in won’t allow, although they should as NHS Endo has been prescribing for a year now and he can’t understand why this is.

[Thyroidgirl1236 in reply to Flecmac]

You can buy them online from abroad but you will need to ask your Endo what dosage you need. It’s a hard fight for the right treatment unfortunately. When I was first diagnosed my tsh was 194 so mine was particularly bad, I don’t know if this has somehow helped in my case. I hope you manage to get the treatment you need.

[Flecmac in reply to Thyroidgirl1236]

Thanks, yes it certainly has been a very long battle, which has been made harder with being ill for at lest 15 years. It’s a postcode lottery and so unfair!