Liothyronine : I have endocrinologist he... - Thyroid UK

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Liothyronine

Denne profile image
12 Replies

I have endocrinologist he prescribed 5mg Liothyronine morning then night bout 5yrs ago. Gps have cancelled my prescription with no notice,passed me round all gps in practice all giving different stories.

- 1gp said she can’t justify spending x amount of public money on me.

-2nd gp said if I want this prescription,go private,I’m NHS patient.

3rd-gp said I could have the liothyronine until my next appointment with endocrinologist,it was stopped with no notice.

-4th gp now saying the ccg whoever they are have stopped liothyronine and it’s out of his hands.

I have most of my under active symptoms back,dry eyes,cold,spiked temperatures,crying to name but a few.

I am on 100mg levothroxine only now. Gp yet again is ringing me tonight to bamboozle me again with medical jargon,last night reason for withdrawal of liothyronine was,liothyronine has side effects and I shouldn’t be taking it,however he would ring the ccg and see what he could do.l am recording consultations now.

Who took the liothyronine off me ?

What is the real reason it has been took off me ?

Can whoever took it off me do this ?

Can I get it back ?

I don’t know what to do,I just know I’m ill without it.

Can anyone help please.

Sorry this post is so long,many thx.

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Denne profile image
Denne
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12 Replies
SlowDragon profile image
SlowDragonAdministrator

See or ring Practice Manager

A GP should not alter T3 prescription - should ALWAYS refer back to endocrinologist

pulsetoday.co.uk/news/clini...

It’s entirely cost driven

If NHS endocrinologist says you have clinical need you should be prescribed. You should however be referred back annually to endocrinologist

NHS England Liothyronine guidelines July 2019

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

Which CCG area are you in?

Search here to see current prescription rates in England. You can search via CCG area too

openprescribing.net/analyse...

british-thyroid-association...

Denne profile image
Denne in reply to SlowDragon

I don’t know what ccg is,I’m from Sunderland.

SeasideSusie profile image
SeasideSusieRemembering in reply to Denne

Sunderland is your CCG. Just stick Sunderland in the box and data will come up when you click "show me the data"

SlowDragon profile image
SlowDragonAdministrator in reply to Denne

It’s your local health area

sunderlandccg.nhs.uk

Shows there were 230 prescriptions in Sunderland CCG area over last year

openprescribing.net/analyse...

Jenny583 profile image
Jenny583 in reply to SlowDragon

"It follows guidance originally published in 2017, which set out how to reduce prescriptions for a number of routinely prescribed items in primary care - and after a period in which the price of liothyronine rose dramatically.

When NHS England issued the guideline at the end of 2017 the document said: ‘In most circumstances, the primary care prescribing of liothyronine is not supported for any patient.

‘Initiation for patients with hypothyroidism should only be undertaken by consultant NHS endocrinologists.’

However, CCGs were incorrectly using the guidance to tell GPs to end prescriptions for the drug, according to former BMA GP Committee prescribing lead Dr Andrew Green.

The cost of liothyronine increased by almost 6,000% in a decade - from £4.46 in 2007 to £258.19 by July 2017, as revealed in an investigation by the Competition and Markets Authority." ___

Think maybe the above ££££££ may have some bearing on the plight of people (mainly women) in the west, in particular (Great Britain)?

Blot profile image
Blot in reply to Jenny583

You are right Jenny. Leothyronine charges have for some unaccountable reason gone up very suddenly in the UK. The supplier/manufacturer determines the price. The NHS mostly refuses to supply it. You can appeal but this is difficult. If you can find a doctor in a European country and your own doctor agrees to follow you up afterwards , that's fine. the cost of leothyronine is the same as it used to be in the UK before the pharmaceutical companies raised the price 200% elsewhere. However, it would need to be ongoing. It is possible. Any country has this T3 formulation. Take your medical data and good luck.

We are not the only country to make leothyronine.

GosportNancy profile image
GosportNancy in reply to SlowDragon

Wow!...Apparently only 8 prescriptions of T3 in my CCG in March this year. That explains how I have to buy mine on-line.

SlowDragon profile image
SlowDragonAdministrator in reply to GosportNancy

But you should fight to get prescribed on NHS

GosportNancy profile image
GosportNancy in reply to SlowDragon

I should take care of myself and my terminally ill husband. I buy my meds on-line and am stopping the T4. I really don't see why I should be asking the NHS to pay for my T3 as it's my choice to take it.

TaraJR profile image
TaraJR

Sunderland DOES allow endos to initiate T3, followed by GP prescribing "Drugs which should usually be initiated in secondary care, or by a specialist clinician, but can be safely maintained in primary care with very little or no monitoring required."

formulary.sunderlandccg.nhs...

Write a letter to your GP surgery, copied to endo and hospital endocrinology department, and quote that in your letter.

Plus ... quote some sentences from NHS England Consultation guidance to CCGs November 2017 (updated June 2019) page 25 I think.

england.nhs.uk/wp-content/u...

Plus ... quote some bits from RMOC Regional Medicines Optimisation Committee guidance June 2019

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

Plus ... BTA British Thyroid Association 2017

british-thyroid-association...

and

british-thyroid-association...

All these documents state that some patients need T3, so your surgery is going against national guidelines from various official bodies. Good luck!

Blot profile image
Blot

Ask your endocrinologist to write to your GP and ask to have a copy of the email too so you know what he has said. If the GP ordered the consultation for you to see the endocrinologist he should abide by his recommendation.

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