Liothyronine Prescribing Survey

[lynmynott]

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.

[Hidden]

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

[lynmynott Partner Thyroid UK in reply to Hidden]

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.

[MissGrace]

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

[Hidden]

Not in Wales either?

[LouiseRoberts in reply to Hidden]

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

[Hidden in reply to LouiseRoberts]

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).

[LouiseRoberts]

Have pinned it.

[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.

[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.

[lynmynott Partner Thyroid UK 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...

[Tibbytoots in reply to lynmynott]

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

[m7-cola in reply to penny]

Yes, it should!

[JennyC2]

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

Thanks

[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.

[Goldengirl01]

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.

[lynmynott Partner Thyroid UK in reply to Goldengirl01]

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.

[Caggie61]

Hi Lyn,

I've been trying to access the survey this evening to complete it but Survey Monkey tells me it's closed. There should be another 2 hours yet as it doesn't end until midnight. How can I access it please?

Thanks

Carol x

[RedApple in reply to Caggie61]

Still just under 90 minutes to go before midnight, but as you say Caggie61, it's definitely closed:

This survey is currently closed. Please contact the author of this survey for further assistance.

[lynmynott Partner Thyroid UK in reply to Caggie61]

Not sure what happened but I definitely scheduled it to close at midnight. I'll take a look and see if I can open it for a little while.

[lynmynott Partner Thyroid UK in reply to Caggie61]

I scheduled it to close at 12.12am so it's possible it's a time difference problem (they don't tell you that). I'm afraid I can't open it again as it may interfere with the analysis.

[Caggie61 in reply to lynmynott]

Thanks for trying x