T3 Questionnaire

[lynmynott]

Thyroid UK, along with the other thyroid groups, had a meeting with the British Thyroid Association yesterday to discuss the joint consensus on liothyronine.

The meeting went well and we think, in one or two instances, our concerns were accepted.

We have some next steps, one of which is to collate people's experiences in regard to being prescribed (or not) liothyronine.

It was agreed that the questionnaire created by The Thyroid Trust is an excellent way to collate this information so, if you want to add your experiences please go to:

thyroidtrust.org/liothyroni...

[TiggerMe Ambassador]

Can they not just grab this information from openprescribing.net?

[pennyannie in reply to TiggerMe]

Well that will not show the number of people having been refused the appropriate treatment and resorted to self medicating -

and I think the more we can show - how dire the situation is -

the better as it's a scandal that hopefully breaks in a newspaper in 5 years time which is too late for many of us.

[TiggerMe Ambassador in reply to pennyannie]

I thought they were looking to highlight the postcode lottery... the fact that mysteriously some counties have no patients in need of T3... I agree it is much harder to find the true numbers of private and self medicating folk

[pennyannie in reply to TiggerMe]

I don't know what they are really doing either but more numbers hopefully means more headlines -

One can dream of an even playing field !!

[SarahJane1471]

done ☑️. Although probably not helpful as I self medicate T3 🤷‍♀️

[pennyannie in reply to SarahJane1471]

I'm also self medicating for around 5/6 years now - but have filled in the form.

[TiggerMe Ambassador in reply to pennyannie]

I'm thinking it's folk like you and  SarahJane1471 that they really need to hear from, you are the great unknown

[SlowDragon Administrator]

Definitely they need to know the vast number of thyroid patients that get T3 on private prescription or self medicate

[WitchingHour2point0]

I've filled it out! My T3 is on a private prescription.

[Bertwills]

Hello, I looked at the questionnaire but unfortunately it didn’t allow me to complete it with the way I got my T3 prescription. I think there may be a missing question or 2.

I only discovered that I need T3 when I started to read & post on this forum. I learnt that private testing was vital & that I don’t convert T4 to T3 well. After advice here I ended up taking T3 only.

My point is that along with the info about private testing etc comes the message that the NHS won’t prescribe T3. So I never tried to have it prescribed by my GP. I obtained a private prescription immediately. The circumstance of being so put off trying to obtain an NHS T3 prescription that we never even try isn’t represented in the survey.

Just FYI I recently asked a GP if after 5 years of T3 only could I return to NHS T4 , which I was prescribed for 2 decades, I was told that I would have to spend a month without any hormones at all so I could be tested again. I declined & will buy my own but I was appalled at the idiocy of this. Did he think my atrophied thyroid had miraculously restored itself to fully functioning?

Thank you for the opportunity to fill in the questionnaire & highlight the NHS problem just sorry that I couldn’t tell my story in it.

[Zephyrbear]

Done!

[lynmynott Partner Thyroid UK]

People who are self treating is something we want to look more into once I have more staff. I think the research is skewed because they are not including them.