Anyone get their NDT on the NHS?

[Peekay]

Does anyone manage to get their NDT on the NHS? If so what brand do you get? Did you get a choice of brand?

[Hidden]

I get armour on the NHS but only though an endo, and he is now looking into getting cheaper brands and an option between lactose and gluten free. But it was a 6 year struggle to get where I am now,

[TupennyRush]

I can't get ndt in my area on the NHS as the NHS endos think it is 'snake oil'. I got a private prescription for it, managed to get this signed off by the NHS endo (my letter from a private, well respected, Prof meant she did even though she told me I was putting my health at risk, ndt was dirty and unreliable) and now get a private prescription for ndt from my NHS GP.

I object to the fact that I have to get a private prescription and that it's not available on the NHS but I feel so much better with it that I'm never going back to just levo (I have Dio2 gene anomaly so need t3)

[leoopard in reply to TupennyRush]

It's crazy you can't get it with the DIO2 gene,. I so get your frustration.

[Hypopotamus]

I get ERFA, but am not offered an alternative. It also took me six years to convince the endo to let me have it.

[Jefner in reply to Hypopotamus]

Hypopotamus

Interested in your comments. What improvements have you noticed taking NDT. I have been on Levo for 10yrs and added a small amount of t3 in June. I am still feeling no better and wondered whether my body needs a complete change since post menopause

[Hypopotamus in reply to Jefner]

I got a general improvement, but perhaps most noticeably, I felt warm inside for the first time in 30-40 years, within 48 hours of starting on NDT (Armour before it was reformulated). I had been on T4, the T3 for seven years.

[Jefner in reply to Hypopotamus]

Hypopotamus

Had you managed to keep decent levels of t3 before you switched? Were you still getting symptoms before you switched?

I am just wondering how long to give my trialing t3 because I don't feel any better on it although I am only on a small amount

[Starfish123]

Hi,

I don't get NDT through my dr but I do know of others that do. I've heard of Efra being prescribed but the dr prescribing is not covered by their insurance, hense the hesitation to prescribe. There was a list of Drs surgeries that do infact prescribe NDT and T3 on another forum but that was a few years ago. You could ask at the chemist if any surgeries in the area prescribe it, this does not break any rules as it's just a guide.

Good luck in your quest for health.

[helvella Administrator Thyroid UK]

Full prescribing statistics for England are readily available - you just have to look in the right place!

A couple of years ago, by far the majority of NHS desiccated thyroid prescriptions were for Armour Thyroid, with a handful for Nature-Throid and Erfa. Think there might have been one for NP Thyroid (Acella).

You will almost certainly get what your doctor writes on the prescription. As even the dosages vary (e.g. 60mg vs. 65 mg), and exact thyroid hormone content is very slightly different, precise like-for-like substitution is not always readily achievable even if allowed.

Note: Even the sum total of all desiccated thyroid prescriptions was a tiny number.

[LindaC in reply to helvella]

helvella - do you still have that link to the print off of all regions prescribing NDT and T3 within this country? I'd greatly appreciate it and think many others might if they saw how far and wide it HAS been prescribed. Thank you

[helvella Administrator Thyroid UK in reply to LindaC]

Still available on the same link!

healthunlocked.com/thyroidu...

Someone posted a link to a website dedicated to presenting prescribing information where it is easy to "ask your own questions" - can't for the life of me remember the site's name.

[LindaC in reply to helvella]

Thank you - much appreciated!

[Serencoch]

I receive Armour from my Endo on a special script, the Meds have to come directly from the hospital pharmacy, I'm not given the prescription to pick up at a chemist as they won't have it.

I take 2x 60mg daily and feel a lot better than when I was on Levothyroxine or T3 which was also prescribed to me by the NHS. I think I've been pretty lucky in being able to obtain the Meds I want.

[Jefner in reply to Serencoch]

Serencoch

Interested in your comments. What improvements have you noticed taking NDT. I have been on Levo for 10yrs and added a small amount of t3 in June. I am still feeling no better and wondered whether my body needs a complete change since post menopause

[jimh111]

I believe there was about 4,500 prescriptions for NDT in England last year. You can see the details in Prescription Cost Analysis England. Here is a link to the 2015 data content.digital.nhs.uk/cata... . See page 200 for NDT. The column 'NIC Per Quantity' is the price per tablet. (Note that the price for liothyronine on the next page is out of date, it is now £9-22 a tablet.)

[Hidden in reply to jimh111]

I was interested to read the cost analysis, thank you for that. The costs involved in prescribing NDT is expensive so many people will have to suffer needlessly while the NHS wastes million being inefficient.

I remember when I lived in the UK a friend of mine who was an under manager told me the costs involved per person. 1) to visit the walk in centre. 2) to visit the GP. 3) to visit the A & E dept,

Guess which was the cheapest The Walk in Centre. Guess which they closed down. Yes you have guessed correctly. The Walk in Centre.

[Margo]

I am interested in the replies to your question too Peekay. I am currently buying my own Naturethroid and am hoping to get it on the NHS, as I feel tons better.

I previously was taking T3 only and was wondering what is cheaper N.D.T.or T3. Do you or anyone else know please?

[jimh111 in reply to Margo]

The Prescription Cost Analysis England link I posted above shows NDT is roughly half the price of L-T3.

[Jefner in reply to Margo]

Margo

Interested in your comments. What improvements have you noticed taking NDT. I have been on Levo for 10yrs and added a small amount of t3 in June. I am still feeling no better and wondered whether my body needs a complete change since post menopause

[Margo in reply to Jefner]

It has been a slow slog jefner. I had my thyroid removed in 2003 due to cancer, and was immediately put on Levo'. Nothing but problems, then tried Armour, couldn't get on with it. Then tried T3 only, seemed to feel better, but wasn't if that makes any sense. I now buy Naturethroid x 2 grains and have just been adding a small amount of T3 and I think I feel better. However, sometimes this happens, I am fine for a while and then it all goes peek tong. fingers crossed after 13 years I have found the right formula for me. I must also add that we are all so very different so what might work for me may not work for somebody else.

Hope this helps jefner.

[Margo]

Sorry jimh111, what is L - T3?

[helvella Administrator Thyroid UK in reply to Margo]

LT3 is levo-liothyronine. (Like levo-thyroxine can be called LT4.) Levo rather than dextro - left rather than right. How the actual molecule is twisted. However it is relatively unusual to see it referred to other than as T3 or liothyronine (or a make/brand).

[Margo in reply to helvella]

Thank you helvella.

[Jefner]

AnfMac

Interested in your comments. What improvements have you noticed taking NDT. I have been on Levo for 10yrs and added a small amount of t3 in June. I am still feeling no better and wondered whether my body needs a complete change since post menopause

[daniela15]

How much do you guys pay for a private NDT prescription. I am on Levo since an year and feel awful.

[daniela15]

I am on levo since an year and have the samo symptoms + I am on a strong diet and still gain weight , my hair got so thin ... so on . I feel like this is not my body .. really . What NatureThroid did you buy from USA . Is there a link I could have a look online. x

[shaws Administrator]

I hope her doctor will do so but he may not want to stray from the guidelines otherwise he might get the treatment Dr S did.

[Jefner]

Anfmac

Thanks hun. I have high cortisol as well as depression, anxiety, fatigue and no signs of improvement. My gp doesnt even know what ndt is

[AnfMac in reply to Jefner]

Hi Jefner. Ask to see an endo if no improvement. I have no idea what cortisol is or what my own blood test results are but after reading posts here I realise I can ask for a print of them! I'm told they are normal but I know I don't feel right! Your symptoms that you mention are ones I've suffered too.

[Jefner in reply to AnfMac]

I have seen an endo, he was crap too

[Peekay]

Please can you pm me with where to get it? I can't afford to pay a huge amount and probably need to take it for a while before I can convince my GP that I'm better on NDT and that he should prescribe it. Probably he'll only do a private prescription even then ...

[TupennyRush in reply to Peekay]

Hi there

I get my ndt private prescription filled at a pharmacy in Essex that is listed on the thyroid UK site. I'm on 1.5 grains of Naturethroid and 100 days supply (ie 100 1 grain and 100 0.5 grains) costs about 110 quid delivered by post.

I think the pricing is around 50 quid for the 0.5 grains and 60 for the 1 grain so hopefully you can do a comparison for your dosages.

It does seem to go up quite frequently; when l started it 2 years ago it was about 90 quid for the same amount.

As I've said previously I have Dio2 gene anomaly; for my symptoms it cleared up my hormonal migraines, stopped the afternoon exhaustion but the main change was in brain fog; because levo had made me able to think again I hadn't realised i was still mentally impaired because I felt so much better but as I took over 6 years to diagnose from first symptoms I was in a terrible state when I was finally diagnosed. Ndt suddenly made my brain actually work; it was like I'd been looking at the world through thick net curtains that were whisked aside...

I still have some issues around cortisol but I'm dealing with those as I now feel well enough to tackle the final, more minor effects that either caused or were caused by my condition...

[ThyroidThora]

Hi,

Armour is the only NDT approved on the NHS and you need to get an endocrinologist to prescribe it. I was put on Armour after the synthetic stuff didn't work but it was withdrawn in June by my endo due to cost and the cancer hospital (Armour is my cancer medication) refused to prescribe it. I was put back on the synthetic stuff and became so ill in the few weeks I was on it that I've opted for a private prescription from my endo and I've started on another brand of NDT that's cheaper than Armour and I'm much better on this, probably due to the lack of fillers and stuff.

Good luck in your endeavours.

TT x

[helvella Administrator Thyroid UK in reply to ThyroidThora]

I am not sure quite what you mean?

Desiccated thyroid products other than Armour Thyroid have been and, I think, still are prescribed.

I have personally witnessed a GP prescription for desiccated thyroid (that actually was Armour Thyroid - as it was the only one he knew).

It is dreadful that people cannot get the medicine on which they do best.

[ThyroidThora in reply to helvella]

Armour throid is approved on the NHS but the other brands are not. If you want another brand you need a private prescription and have to buy it yourself.

The system stinks and I think it's back street privatisation of the NHS.

[helvella Administrator Thyroid UK in reply to ThyroidThora]

Not entirely the case. Towards the end of 2015 I analysed the prescribing information for England and the listed desiccated thyroid products had the following characteristics:

Levothyrox/Liothyronine_Tab 18mcg/4mcg

Levothyrox/Liothyronine_Tab 19mcg/4.5mcg

Levothyrox/Liothyronine_Tab 38mcg/9mcg

Levothyrox/Liothyronine_Tab 73mcg/17mcg

That means at least two and possibly three or more different makes are prescribed. Obviously makes which have identical T4/T3 contents cannot be distinguished on this data.

(It was my complaint to the statistical bods that resulted in them changing the category for desiccated thyroid from "levothyroxine" to the somewhat more accurate Levothyrox/Liothyronine.)

The system does stink.

[ThyroidThora in reply to helvella]

Really! My endo is the secretary for the British Thyroid Association and he told me that Armour is the only NDT available on the NHS. I wanted to try the WP Thyroid but he couldn't prescribe it. Perhaps the data you've listed above is different strengths of Armour thyroid.

I'm signing off now because I don't feel well (flu like symptoms) and I need to go to bed.

Night, night and God bless.

TT x

[helvella Administrator Thyroid UK in reply to ThyroidThora]

Good night!

For anyone who interested, the prescribing information is available here:

openprescribing.net

I plugged in an analysis of all Levothyrox/Liothyronine products listed and produced this mess of a graph!

openprescribing.net/analyse...

Unfortunately, no manufacturer names.

[dashi2208 in reply to helvella]

Hi Helvella, my GP writes a script for NDT and he doesn't specify a brand thereby giving me the opportunity to choose any make I want from the Pharmacy that I use. If you would like specifics let me know

[daniela15]

Thank you for your reply. Could you please send me pm.

May I ask why this should not go public, I really do not know. Most probably I have not read enough information . xx

[daniela15]

Thank you , can you please pm me your source xxx