NHS Changing Prescription: Finally, a diagnosis... - Thyroid UK

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NHS Changing Prescription

psue profile image
psue
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Finally, a diagnosis after 30years of worsening Hypothyroid symptoms. Initially, treatment with NDT alone, then T3 was added. Whilst undiagnosed and untreated I was progressively becoming seriously ill and unable to function, with treatment I got my life back. Slowly over time the myriad of symptoms have either improved or resolved completely.

It is now 10 years or so since the NHS provided its support with prescriptions of ERFA Thyroid (NDT) and T3 or Liiothyronine; as I don't convert T4. I have thought myself incredibly lucky and ridiculously grateful for these NHS prescriptions; why should I but anyway?

My worst fear has come true. I've just received notice from my GP's surgery, that the CCG have instructed them to stop prescribing NDT (ERFA Thyroid), because 'it is ineffective'. Thyroxine is the only alternative option the CCG are willing to prescribe. Regarding T3, this, they say, can only now be prescribed by an Endocrinologist.

I will jump through the necessary hoops in the hope I can get T3 on NHS prescription. Regarding NDT it seems there is no hope and that the drug companies have finally got their way.

Has anyone else been affected in this way and how have you resolved the problem? Does anyone have details of how to get hold of NDT and or T3. I am happy to have private communications regarding this matter. I have been a member of this group for a long time, generally offering support to others but on this occasion I am hoping you can offer me help. I would hate to be forced to endure that Zombie state again.

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psue
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Clutter profile image
Clutter

Psue,

The rising cost of NDT and T3 seems to have prompted many CCGs to decide that there is no good evidence that either are effective or safe. Many people finding their prescriptions withdrawn are buying online and self medicating.

lc1973 profile image
lc1973

Hi Psue

This is sadly a common theme.

In the area i live in the CCG are still allowed to prescribe it but only if the Endo says it is needed. MY Gp prescribed it for me as we/I felt i had a conversion issue but it has now been taken away from me as the Endo says there is no evidence to suggest a conversion issue. My options are to increase levo only which i dont think will work or to self medicate T3.

If you put up another post asking for reliable sources of T3/NDT and for people to reply by private email you will get responses as i did. i am still pondering on what to do but at the moment i have a months or so's supply of NHS T3 to diliberate with! My GP has said they will continue to monitor my bloods if i self medicate but i dont know if that includes monitoring the all important FT3...i'll cross that bridge when i come to it i think. Good Luck.

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