NDT on NHS: Hi everyone 😊 I just wanted to ask... - Thyroid UK

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NDT on NHS

birtie profile image
birtie
•20 Replies

Hi everyone 😊

I just wanted to ask if there was anyone out there who gets their NDT prescribed by the NHS?

I am having the argument with my GP at the moment, as I don’t convert, but just wanted to know if anyone out there had managed to get it from their NHS doctor.

Thanks

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birtie
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SlowDragon profile image
SlowDragonAdministrator

Welcome to the forum

Hardly anyone gets NDT on NHS

Much easier to get T3 prescribed alongside levothyroxine but must be initiated via thyroid specialist endocrinologist

How much levothyroxine are you currently taking

Which brand

What vitamin supplements

Can you add most recent TSH, Ft4 and Ft3 results and ranges plus vitamin D, folate, ferritin and B12 results

Is your hypothyroidism autoimmune

SlowDragon profile image
SlowDragonAdministrator

Liothyronine T3

Over 62,800 prescriptions in England in last year

openprescribing.net/analyse...

armour NDT 1,700 prescriptions in last year

openprescribing.net/analyse...

Erfa NDT 300 prescriptions in last year

openprescribing.net/analyse...

birtie profile image
birtie• in reply toSlowDragon

Hi , many thanks for your reply, and for the info .

I already take NDT via a private prescription.

But it is very expensive, and I have been going through treatments for breast cancer for the last year or so , and as I am self employed my earnings have been hit hard.

I took levothyroxine for 15 years , and was exhausted for 15 years , but NDT has been wonderful.

I really don’t want to go back to levothyroxine, particularly as I have read some papers linking it to increased cancer risk .

I know it’s a long shot, but I am going to give it a go 🤞

SlowDragon profile image
SlowDragonAdministrator• in reply tobirtie

List of thyroid specialists and endocrinologists who will prescribe T3 or possibly NDT…..some are NHS and private

healthunlocked.com/thyroidu...

birtie profile image
birtie• in reply toSlowDragon

great , many thanks for all your help 😊much appreciated

Lalatoot profile image
Lalatoot

The problem is that NDT is not licensed for use in the UK . Any doctor prescribing it therefore has to take personal responsibility and liability for its prescription. Not many doctors are willing to do that

birtie profile image
birtie• in reply toLalatoot

Thanks for your help 😊

Catlover3 profile image
Catlover3

Hi. Up until nature-throid became unavailable I was getting mine on a nhs prescription. I knew it wouldn't last though as it became very expensive and when it was withdrawn from sale that was it. I now have to buy my own ndt unfortunately.

birtie profile image
birtie• in reply toCatlover3

Thanks for your help😊 sorry to hear that , I wonder why it is so expensive?

pennyannie profile image
pennyannie

Hello Birtie and welcome the forum :

I was refused both NDT and T3 by my surgery and hospital in early 2018 and now self medicate and have settled on NDT.

As I understand things NDT is still being prescribed to people well established on this treatment option where it is deemed that they would be negatively impacted if they were to be switched to T4 :

You can look up your surgery and CCG/ICB area and see if anyone else is getting it prescribed on the NHS - openprescribing.net - and go into analyse - and type Armour as the drug box -

Might help you especially if you see your surgery actively prescribing - sadly you can't find out which doctor signs the prescriptions - didn't help me - but you might be more able - I was too ill and fighting the system simply exacerbated my symptoms at the time.

birtie profile image
birtie• in reply topennyannie

Thank you for your help , sorry to hear that fighting for the right medication for you made you even more I’ll . It’s seems so illogical to treat people this way , it probably will only cost them more down the line . Best wishes

I get mine from a private prescription but I noticed it had gone up last year, I get mine from Thailand now, which was recommended to me by a lady on here.

birtie profile image
birtie• in reply to

Thanks for your help 😊 is it much cheaper? Would you mind letting me know where you get it from ?

SlowDragon profile image
SlowDragonAdministrator• in reply tobirtie

private messages only

Sanshia profile image
Sanshia

I’ve been on levothyroxine for 15 years and I’ve never felt any benefits Whatsoever I’ve just recently been to see somebody who has given me Thyroid natural glandular by allergy research group is this going to be a suitable alternative for me? Does anybody know?

birtie profile image
birtie• in reply toSanshia

I am sorry, I don’t know . I take armour thyroid, nd get it privately (removed by admin) For me it has been wonderful

Happyfairy09 profile image
Happyfairy09

Hi, I currently do and have done for a few years, one of the lucky ones, what is the reason your gp won't prescribe ndt ? Is it the fact it's on the blacklist ?

birtie profile image
birtie• in reply toHappyfairy09

Thanks for your help 😊

Yes , he say’s it is unlicensed, but he is taking me through an appeal process. So glad to hear someone is getting it ! Do you know how much it costs through the NHS ?

SlowDragon profile image
SlowDragonAdministrator• in reply tobirtie

on open prescription….

openprescribing.net/analyse...

Armour

£812,025 spent on 1,787 prescriptions = Approx £450 per prescription

Erfa slightly cheaper

£132,189 spent on 315 prescriptions = Approx £419 per prescription

As another poster pointed out …..as NDT doesn’t have U.K. license medics may find it difficult to get their indemnity insurance to cover prescription

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