Trying to access liothyronine!

[Humphre]

Finally managed to write my emails as suggested by my endocrinologist, mainly to my MP, Health Secretary & Chair of the East Lancashire NHS Trust to ask why I'm unable to do a trail on liothyronine to see if it will help me etc. I've also asked my endocrinologist if he can provide a prescription via the private route, so fingers crossed something good will happen but I won't hold my breath.It's a postcode lottery there are a few other NHS trust that do not supply liothyronine due to cost mainly.

I'll come back with any information I get.

Otherwise I'm managing reasonably well so far thanks to taking betaine HCL which helps my stomach hopefully helps absorb the loads of vitamins I take.

[helvella]

Please everyone take this as encouragement to do such things yourselves.

It isn't easy writing decent emails like this, but if they get through to the appropriate people they can help - both you as individuals and others if policies are changed at least partly as a result of them.

[tattybogle]

can't remember if i've told you before Humphre, but TaraJR is looking for people who have been refused T3 on nhs in the last 12 months, i've tagged her so she'll see this post now.

[Humphre in reply to tattybogle]

Thank you erm no I don't think you did but mind. At moment having probs with email addresses have come back will individually see it that works MP has received but very slow at responses. I look forward to hearing from TaraJR ☺️

[tattybogle in reply to Humphre]

this post : healthunlocked.com/thyroidu... evidence-needed-please-in-the-past-year-have-you-been-told-your-t3-will-be-removed-or-you-cant-start-t3-due-to-national-local-policies

[TaraJR in reply to tattybogle]

Thanks for flagging this up again   tattybogle

Thyroid groups, including Thyroid UK, are collecting info regarding how many areas are still refusing to follow national guidance. Patients can send their stories to Thyroid UK or The Thyroid Trust, or to ITT Improve Thyroid Treatment group (a patient led Facebook group who are actively campaigning for change on this)

[TaraJR in reply to Humphre]

Humphre I'm sorry to hear you're battling this - like so many other patients unfortunately. (see also my comment to tattybogle )

If you're on Facebook, do join us in ITT Improve Thyroid Treatment. We have template letters to send to MP, ICB, endo, Healthwatch etc which detail all national guidance and even parliamentary statements on T3. I'm in the process of updating the one for England.

[Hypopotamus]

I can't see that Liothyronine can cost any more to produce that thyroxine. It's about time that this fiasco is brought to an end.

[Humphre in reply to Hypopotamus]

True but big pharma out there loves their money I've sn idea levothyroxine is pence to make but liothyronine I don't know🤷 just need to get endocrinologist all working together mine had expected a fight at a meeting was pleasantly surprised when the trust agreed 🤞one can only hope🙏

[helvella in reply to Humphre]

For many years, liothyronine in Greece was a little over one pound a pack. (I think the manufacturer had major argument with Greek government about this.)

Liothyronine in Turkey isn't much more than that.

Even the German make Thybon Henning is only about 31 euros - for 100 tablets.

The difference between levothyroxine and liothyronine, in terms of manufacturing costs, can't be anything like what the UK companies claimed.

Advanz/Mercury Pharma were claiming they had to pay for a new factory. But that was complete nonsense. Their product is made under contract manufacturing by another company. And, as a customer, you don't pay up front - front current sales - for a whole factory to make quite small quantities of one product.

And there are many people getting medicines that cost £50 or more for a month - almost forced at them by doctors.

[Humphre in reply to helvella]

Oh my it's minefield out there. Thanks for the information 😁