Liothyronine Prescribing Survey: NHS England... - Thyroid UK

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Liothyronine Prescribing Survey

lynmynott
lynmynottAdministrator
18 Replies

NHS England updated their guidance on the prescribing of liothyronine (T3) in July 2019 - sps.nhs.uk/articles/updated...

The new guidance states that T3 can be prescribed to hypothyroid patients who have unresolved symptoms on the standard medication, levothyroxine, but that it should only be initiated by a thyroid specialist.

However, we are aware that in some instances, patients have not been able to access T3 and in a recent meeting with Lord Hunt, he requested that we gain information about Clinical Commissioning Group’s (CCGs’) prescribing practices since the updated NHS England guidance.

Thyroid UK has been working in partnership with other thyroid organisations to design a survey asking various questions about the prescribing practises of your CCGs.

NOTE: This survey will end at midnight on 19th November 2019 as we want to analyse the results and send them with our comments on the draft NICE guidance on thyroid disease.

Please complete this survey by following this link:

surveymonkey.co.uk/r/M58J8VS

Please share this survey as far as you can. It may make all the difference.

18 Replies
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Meggietoo

Lyn can I do this even though I'm in Scotland?

1 like
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lynmynott
lynmynottAdministrator
in reply to Meggietoo

I'm afraid not. The guidance relates to England only so we wanted to show how many CCGs are not allowing prescribing. We may well do another separate one for Scottish Health Boards though.

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MissGrace

Thank you for all the work on this. It is great to see some progress. 🤸🏿‍♀️🥛

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Jnetti

Not in Wales either?

3 likes
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LouiseRoberts
LouiseRobertsAdministrator
in reply to Jnetti

Not at this time I'm afraid as this is specifically regarding the NHS England guidance.

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Jnetti

I can't ask for T3 yet anyway, only just had a levo increase which may hopefully be enough this time, after over a year of fighting for more (Like Oliver Twist, lol).

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LouiseRoberts
LouiseRobertsAdministrator

Have pinned it. :)

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penny

I buy my own T3, and have done for years. Recently a new GP told me that I’d better keep doing so as I can get it cheaper than the NHS! That isn’t really the point, though, is it. The NHS should be buying it for at least as cheaply as I can.

3 likes
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Tibbytoots
Tibbytoots
in reply to penny

I am seeing a private Endocrinologist in the hope of treatment for a lifetime of CFS/ME. Saw my GP today who warned me that she might prescribe T3 !!! Which was an interesting comment. At nearly £280 a pack if I am prescribed it I will be looking for help to buy it online.

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lynmynott
lynmynottAdministrator
in reply to Tibbytoots

If you do get a private prescription it's much cheaper to access it from one of the pharmacies listed on this page - thyroiduk.org/tuk/treatment...

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Tibbytoots

Hi Lynn, Thanks for the information - I forgot I had posted this on the forum - great info and appreciated -

1 like
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m7-cola
m7-cola
in reply to penny

Yes, it should!

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JennyC2

What if you used to get an NHS prescription but now get a private prescription which means you buy T3 from abroad?

Thanks

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Babette

I'm not eligible for the survey as I started on liothyronine nearly 6 years ago.

At my appointment in September, the endo said that the national (presumably NHS England) position was that they can't initiate it for any new patients unless they submit details of a special case and it's approved. Apparently feeling ill on levothyroxine isn't a strong enough reason. I'm happy to provide details of the consultant, etc if that helps.

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Dustpan

Thanks Lyn, went to see endo yesterday, said he is happy for me to source t3 but he can’t prescribe it as he is not allowed to and says they don’t believe t3 helps. He says it’s like having a cup of coffee you get a buzz for a short while then go down again and it can affect heart and bones.

1 like
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lynmynott
lynmynottAdministrator
in reply to Dustpan

That does happen to some people (feeling better initially) but for a lot of people they continue to feel better. More research needs to be done on why this is happening. It could be because it's not a slow release T3 which would be nearer what the body actually does.

2 likes
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