Help! Local NHS refusing me T3: My local NHS... - Thyroid UK

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Help! Local NHS refusing me T3

HashiFedUp profile image
19 Replies

My local NHS Commissioning Group have decided to make T3 on the NHS a red drug and so my GP won’t prescribe it. My endo is happy to do so but I don’t think my GP is ‘allowed’. I had it previously but unfortunately things have changes (as we know).

What are my options? How can I get hold of T3?! Thanks.

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HashiFedUp profile image
HashiFedUp
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19 Replies
SlowDragon profile image
SlowDragonAdministrator

Guidelines on T3 is initial 3-6 months trial of T3 is prescribed by endocrinologist via hospital pharmacy

Assuming trial goes well, endocrinologist formally writes to request your GP take over care and cost of prescription

Roughly where in U.K. are you

Over 60,200 prescriptions for T3 in England in last year

Typically 6 prescriptions per person per year

Searchable by sub ICB area and also by GP practice

openprescribing.net/analyse...

HashiFedUp profile image
HashiFedUp in reply toSlowDragon

the endo has written to my GP and my GP contacted me to say they can’t take over prescribing because in South Gloucestershire, the drug is on the ‘red list’!

SlowDragon profile image
SlowDragonAdministrator in reply toHashiFedUp

Bristol and S Gloucestershire one of the worst

But there are a few prescriptions - 269 in last year

Typically 6 prescriptions per person per year

openprescribing.net/analyse...

Suggest you take the issue to your MP

theyworkforyou.com/search/?...

bristolpost.co.uk/news/bris...

Impove Thyroid Treatment group on Facebook have letter templates and info

Meanwhile a private prescription enables access to Thybon Henning 20mcg tablets via specialist U.K. pharmacies at 50-60p per tablet

HashiFedUp profile image
HashiFedUp in reply toSlowDragon

very useful thank you x x

SlowDragon profile image
SlowDragonAdministrator

Essential to test vitamin D, folate, ferritin and B12 at least annually, especially with Hashimoto’s

What vitamin supplements are you currently taking

And are you on gluten free diet and/or dairy free diet

helvella profile image
helvellaAdministrator

First, get their definition of "Red Drug". There is nothing universal about such things.

Could mean absolutely anything and you simply cannot rely of guesswork and assumption. And if that was defined when T3 was almost five times the price it now is, it might not hold water. If necessary, put in a Freedom Of Information request to get that.

HashiFedUp profile image
HashiFedUp in reply tohelvella

I’m not relying on guess work as the GP contacted me to tell me the drug is on the ‘red list’ so she can’t prescribe it!

helvella profile image
helvellaAdministrator in reply toHashiFedUp

But do you have their definition of "red list"?

HashiFedUp profile image
HashiFedUp in reply tohelvella

yes it means they are not allowed to prescribe t3. My nhs endo - who I saw just yesterday - confirmed it too 😞 and is not allowed to prescribe it either

tattybogle profile image
tattybogle

Don't know how much of this you know already .. so putting this up for benefit of others who read it later.

Have a read of the Thyroid Trust T3 report mentioned in this post . healthunlocked.com/thyroidu...

It contains a link to 'report issues in your area' which will help them if you use it .

it also contains links to reports of which area is doing what ( or NOT).

I've followed what's happened this year by reading the minutes of meetings in my CCG / ICB area....... Lancashire and South Cumbria Medicines Management Group recently reviewed it's RAG ( red /amber/ green ) position for 'liothyronine for new patients' .. it is now 'Amber 0' (ie. allowed if initiated by secondary care after a trial) ..... previously it was 'under review' ( grey ) which effectively meant 'do not prescribe to any new patients'. healthunlocked.com/thyroidu.... (heads-up-for-patients-in-lancashire-and-south-cumbria-wanting-a-t3-trail-liothyronine-for-new-patients-now-allowed-by-lscmmg-review.)

Note~ not all areas use exactly the same key for their colour codes, so you always need to find details of exactly what red / amber etc mean for your area.

HashiFedUp profile image
HashiFedUp in reply totattybogle

Wow lots of really good info here thank you. Will be forwarding to my GP, although I probably won’t get anywhere, and my current T3 tablets run out in a week 😞

TiggerMe profile image
TiggerMeAmbassador in reply toHashiFedUp

What T3 are you taking at the moment? Thought you were on NDT?

HashiFedUp profile image
HashiFedUp in reply toTiggerMe

I was but stopped ERFA NDT as dodgy batch made me quite poorly. Tried an old batch of T3 from my old endo and feel amazing ! Have endo appointment in January amazingly quick so hope to discuss things then.

TiggerMe profile image
TiggerMeAmbassador in reply toHashiFedUp

I'm glad you got sorted, you sounded in a bit of a fix, I was going to say that I think we are quite local and if you needed any.... 🤗

TaraJR profile image
TaraJR

I help run ITT Improve Thyroid Treatment, a Facebook group. We helped write the T3 Prescribing Report that tattybogle send a link to. Thyroid Trust, Thyroid UK, ITT and Thyroid Support Group Norfolk compiled that report together.

The CCG data was from earlier this year and could have changed a little.

Every ICB (used to be called CCGs) make up their own colour codes - whatever they fancy. Email your ICB and ask, or it's probably online. HashiFedUp what area are you on? I'll search for you.

Things should on theory be getting better as the T3 price has lowered greatly. And all national guidance says you should have it if you need it.

ITT has template letters you can use with all these details on there if you join us.

HashiFedUp profile image
HashiFedUp in reply toTaraJR

hi. I am currently taking t4 Levo Accord and my old t3 is Liothyronine brand not sure. Says morningside healthcare iraksin on packaging. How do I look it up? Thank you. X

TaraJR profile image
TaraJR in reply toHashiFedUp

Sorry, what do you want to look up?

HashiFedUp profile image
HashiFedUp

I’m in South Gloucestershire. My endo has written a letter to my GP and said they are fine about prescribing T3 (they are in Bath, a different area, and do prescribe T3). But because I live in South Glos, the endo wrote to the GP and asked them to take over T3 prescribing, and my GP said they can’t because the drug is ‘red’ according to the commissioning board.

radd profile image
radd in reply toHashiFedUp

Assume this reply is for Tara so will tag ... TaraJR

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