Current status of NDT in the UK and what to say... - Thyroid UK

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Current status of NDT in the UK and what to say to my Dr.

wysewoman profile image
6 Replies

Hi there,

Its been a while since I've been on here - its good to see some of the old names still hang out though :)

OK I'll try and make this brief - I had Thyroid Cancer and had my Thyroid removed. I have now been on Levo for about 4 years. On the surface, I am now fairly happy with it but something is niggling me... I used to read loads of books but since my op and being on Levo I dont seem to be able to focus quite like I once did. I wouldn't say I have brain fog - I did experience that in the early days - and I wonder if it may be hormonal (I'm now 45) or my age... but I'm feeling quite tempted to just try the NDT's just to see if there is any difference in me afterwards...

I know that I can buy it online but I would quite like to ask my Dr first as I do have a medical exemption certificate. So essentially, the purpose of my post is what is the current state of being able to get this in the UK on prescription? I know a few years ago when I looked into this, it was tricky and few doctors would prescribe it. Is it still the same?

I noticed that on thyroid UK thyroiduk.org.uk/tuk/treatm... they list two online pharmacies that now supply it with a prescription but presumably, my script must say NDT and not Levo on it in order for me to get the former and not the latter?

Cheers,

Melissa

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wysewoman
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Clutter profile image
Clutter

Wysewoman,

You're less likely to get NDT prescribed today than 4 years ago :( Few NHS doctors are prepared to take the personal responsibility for prescribing an unlicensed drug. If you are able to get a named patient basis prescription you should be able to take it to any pharmacy to be dispensed but the larger chains like Boots or Lloyds will probably be most helpful.

wysewoman profile image
wysewoman in reply toClutter

That's pants then!

Of the various NDTs that one can ermmmm 'obtain' is there any particular one that is currently standing out as consistently good and are there any brands to avoid?

I know Armour often used to get mentioned as good and was popular in the USA and then there are those Thai ones...

Cheers,

Melissa

Clutter profile image
Clutter in reply towysewoman

Wysewoman,

It's all suck it and see. Armour is the most expensive brand and the Thai NDT are the cheapest. As you've not tried NDT I'd be inclined to start with Thyroid-S or Thiroyd. If Thyroid-S doesn't suit usually Thiroyd will and vice versa.

How much Levothyroxine are you taking?

wysewoman profile image
wysewoman in reply toClutter

I'm on 150mcg Levo.

I've been doing some looking - if anyone can find it for less than £50 please PM me! I'm sure it was nearly half that price a few years ago! - guess that's down to Inflation / brexit / life!

Cheers!

Clutter profile image
Clutter in reply towysewoman

Wysewoman,

150mcg Levothyroxine is equivalent to 2.25 grains NDT (135mg). You can halve your Levothyroxine dose and introduce 1 grain (60mg) NDT. After two weeks you can stop Levothyroxine and increase NDT to 2 grains and then two weeks later increase to 2.25 or 2.5 grains. Hold at 2.5 grains for 6-8 weeks and have a thyroid test including FT3 before increasing further.

I doubt you'll find it <£50 for 1,000 tablets thanks to inflation, Brexit, low £ to $ etc.

wysewoman profile image
wysewoman in reply toClutter

Thanks for that info, that's exactly what I need to know.

I have now managed to find it a bit cheaper - just got to check that websites reviews before committing...

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