Taken off NDT

[FifiJules]

Hi there, my friend who has been well on NDT for many years now, has been taken off it by the endo who says he is no longer able to prescribe it. She has been given Liothyronine but is not well on it, and told her 'levels' are fine. She wants to look into getting a private prescription, but from my research into this years ago, I seem to recall it was an extremely expensive route to go down. Are other people being taken off NDT who were historically prescribed it? If so, apart from self-medicating, what options are there to explore in order to have the prescription reinstated? Thank you.

[SlowDragon Administrator]

Extremely difficult/impossible to get NDT on NHS

Armour only 1800 prescriptions in England in last year

openprescribing.net/analyse...

Most people either self source or get private prescription

Armour or Erfa are expensive

Thailand NDT slightly cheaper

List of thyroid specialists and endocrinologists who will prescribe NDT or T3

healthunlocked.com/thyroidu...

[FifiJules in reply to SlowDragon]

Thank you for your answer and thank you to everyone who replied. I've passed this on to my friend now.

[shaws Administrator]

She might need a small increase of T3 in increments until her symptoms resolve.

I assume NDTs have been withdrawn due to its source being from animals. NDTs saved lives from 1892 onwards. I assume before this date that people just died!

[waveylines in reply to shaws]

NDT has not been withdrawn from the NHS. Armour & Erfa are listed and available for a NHS prescription. More likely it the area health authority who have instructed it to be stopped prescribing. Hence postcode lottery... This used to be the local CCG but I believe this has changed recently?As she has had it on NHS prescription for years I suspect they are on very dodgy grounds if taking her off it jeapodises her health which it appears to be doing. If it were me I'd be taking legal advice over this. Shocking!

I believe she's been put on Liothyronine. Doesn't this cost even more!??

[SlowDragon Administrator in reply to waveylines]

Liothyronine is far cheaper if 20mcg tablets or capsules

20mcg T3 currently £40 per 28 tablets

So most people cut 20mcg tablets into 1/4’s to get 5mcg dose

Number on Armour 1,800

Total cost £834,119 = £436.39 average per prescription

openprescribing.net/analyse...

Number on T3 63,168

Total cost £8,618,364

£136.43 is average cost per prescription

Plus levothyroxine at £1 per pack

openprescribing.net/analyse...

[waveylines in reply to SlowDragon]

I find that hard to believe Slowdragon re Armour costing that much. I'm on what would be considered a high dose of NDT. And it certainly does not cost £436 per month!

Indeed it would be a little less than the Liothyronine you quote unless NHS is being totally ripped off.

You would also need to compare like with like to.... Armour contain 9mcg per tablet of T3. I take approx 34mcg per day of T3 content of the Armour. So that's roughly 1 3/4 tablets of 20mcg Liothyronine tablets per day. And I get a good wack of T4 at 38mcg per tablet. So that's a 142mcg of levothyroxine per day so you would need to cost that in too, to compare costings accurately like for like.

[SlowDragon Administrator in reply to waveylines]

Prices were just total price paid divided by number of prescriptions

Some prescriptions might be 2-3 months at a time

I get 2 months per prescription

Prices currently in Sept 2023

28 x 100mcg levothyroxine 77pence

28 x 25mcg levothyroxine 86pence

28 x 50mcg levothyroxine 77pence

28 x 20mcg T3 £42.48

No prices for Armour listed as it’s not classed as a generic. There’s little price control if it’s a “special “

[waveylines in reply to SlowDragon]

Yes but to compare with Armour I would be on nearly 2X 20mcg lithyronine. so £84.86 per month plus £1.55 approx for levo so £86 something per month. You've got me intrigued so will ask my boots pharmacist who order it in how much it is per 100bottle of one grain. On your prices above for levo Liothyronine you're right it would be more but not hundreds more. I've just looked online £156 for 100 one grain Armour tablets. (Really shot up in price) I'd need another 5 tablets so call it £166 permonth. Don't know how much an internal uk supplier would charge but yes twice the price. So I'm wrong. 😂🤣😅Oh well I guess some bright spark somewhere will decide it's a saving if I don't have Armour. I'll just simply point out all the other drugs I needed until I went on a NDT and their cost implications!! . 😂😊

[SlowDragon Administrator in reply to waveylines]

I know many people who get Armour on private prescription are all saying how much price has increased

Perhaps someone will come along and say how much they are currently paying

Personally I tried Armour years ago and it didn’t suit me. I find T3 more flexible but I do have to split as 3 doses through the day

When I was first prescribed T3 on NHS in 2017, U.K. only had one licensed supplier who deliberately exploited loophole and increased price by 6000% - it was £268 per 28 x 20mcg

Price Been dropping steadily since there’s now 4 licensed suppliers

[VSHchocolate in reply to SlowDragon]

Hi I pay £130 for 100 1 grain tablets of Armour from Smartway Pharmacy prescribed by private endo. No way will NHS in my area fund it.

[SlowDragon Administrator in reply to VSHchocolate]

And how many grains per day ?

It’s quite a lot more expensive compared to adding T3

Obviously if Levo plus T3 doesn’t work for some people then it’s necessary

[VSHchocolate in reply to SlowDragon]

I started on 3 grains but was over medicated. Reduced to 2.5. Just gone down to 2 grains a day as my T3 was just above the top of the range . I ended up going privately because I felt so ill . I think it was a combination of my 25mcg tablets being Teva ( couldn't get anything else) and my T3 being 4.1. The Endo noted all my symptoms and then wrote and said as my bloods were all within the normal range they would leave things as they were. I could have cried. To be fair they haven't discharged me yet even though they know I am on NDT. I am much better informed about things now thanks to this website, so I am going to ask if they will consider prescribing T3 for me alongside Levothyroxine. I would prefer not to have to pay for NDT, and I know they won't definitely won't fund it.

[SlowDragon Administrator in reply to VSHchocolate]

If you stay on NDT you can add Levo alongside

If you go back to Levo plus T3…… make sure to have brand of levothyroxine specified on your prescription

How to specify brand levothyroxine on prescription

[VSHchocolate in reply to SlowDragon]

I was thinking of doing that but I am having difficulty trying to work out dosage. I was previously on 125 mcg Levothyroxine 5 days a week and 150mcg for 2 days. Which if you use the weight x1.6 works out almost spot on . My T3 was 4.1 my private endo is aiming for 6.1 I am currently 6.9 top of the range is 6.8. My T4 was 14.1 and has remained much the same.

I was wondering about 100mcg Levothyroxine and 1/2 grain of NDT that would give me 6.25 mcg of T3 and 19 mcg of T4. I can get Accord 100 mcg tablets which I know I am fine on. In fact I still have plenty from before.

I have an appointment with the NHS endo on 11th October so I will carry on taking NDT for now to see how I feel I have only been on the reduced dose for a week. Then see what they say.

I would be interested to see what people think about how I should split the NDT /Levothyroxine doses.

[SlowDragon Administrator in reply to waveylines]

You've got me intrigued so will ask my boots pharmacist who order it in how much it is per 100bottle of one grain.

That will be fascinating……if they will tell you ….they may refuse

“Special prescriptions” use to have absolutely no price regulation

dailymail.co.uk/news/articl...

thetimes.co.uk/article/cost...

They have tried to close this loophole recently

[waveylines in reply to SlowDragon]

Interesting....Well for me NDT gives me eveness I could never get on levo/lio despite splitting the doses. And I take the full amount first thing job done.

I'll let you know if I ever find out!!

[pennyannie]

Hello FifiJules ;

Did your friend agree to come off the NHS Armour/Efra to trial aT3/T4 combo with the provision being made that the NDT would be reinstated if the trial was not successful ?

It's all very well ' looking good on paper ' according to someone else - but if s/he has not recovered as they expected I would like to think the NDT is reinstated - but in all honestly, it sounds like a stich up.

It's very hard writing through a third party - it would be better if s/he writes up their own post / experience and then we can try and help them better.

[tattybogle]

someone else in the same boat 2 wks ago :

healthunlocked.com/thyroidu... anyone-out-there-in-south-essex-recently-had-ndt-removed-by-their-endocrinologist

There was another post by someone else too but can't find it .

[pennyannie in reply to tattybogle]

There was one just yesterday  ScooterNoden79

[Pearlteapot]

Roseway Labs offer a prescription service. You get an appointment with their prescriber, £30 I think, and they will consider whether to give a prescription for NDT based on past medical history and results.

[Sparklingsunshine in reply to Pearlteapot]

I use Roseway for LDN and find them very good. I think I remember reading they can prescribe Armour, Erfa and T3 if required. No idea on costs though.

[Pearlteapot in reply to Sparklingsunshine]

their price for Thybon Henning is very reasonable. They do prescribe Armour and Efra and will compound as well.

[waveylines in reply to Pearlteapot]

Yes but that route she will have to pay for the NDT which is soo wrong.

The local health authority are causing her harm and she needs to insist the NDT is reinstated and take legal advice if they refuse.

[Pearlteapot in reply to waveylines]

Legal advice will cost more than a Roseway labs prescription. Plus, prescribing is in the Endo's discretion so a legal challenge very unlikely to succeed.

[waveylines in reply to Pearlteapot]

There are free sources out there. Some medical companies will take a case on if they Sue for damages...

It wasn't the Endo s decision. He said he wasn't allowed to prescribe NDT anymore. Quite different to a medical decision.

I have to say if this happens to me I doubt I could self fund. I'm on a pension. In my case I tried the synthetics first before moving to NDT.

This is a funding issue not a medical issue.

[waveylines]

By the way I'm on Armour on the NHS.... GP prescribes it after Endo advised. Been on it about 15yrs.

[Zaddwwed]

I'm sorry to hear about your friend's situation. It seems like she is experiencing difficulties with her current medication. While I can't speak for everyone, there have been cases where individuals prescribed NDT in the past have been taken off it by their doctors. As for options to explore, it would be best for your friend to consult with another endocrinologist or mayoclinicpatientportals.com/ thyroid specialist who may be more open to prescribing NDT. They can provide guidance on whether a private prescription is necessary and discuss potential alternatives or treatment options.