NHS GP’s withdrawing Armour: I have looked for... - Thyroid UK

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NHS GP’s withdrawing Armour

celiar0
celiar0

I have looked for posts on this and can only find some from 3 years ago.

I noticed recently that Armour had been taken off my NHS repeat prescription and when I asked my GP he said he was happy to put it back on but was sure it would come up again.

I didn’t know what he meant at the time but after looking on the internet found that many people were being told by their GP’s that they couldn’t have it any more even though they had been receiving it for some time.

I have been on it since 2004. I had been suffering with hypothyroidism for years and the thyroxine they kept giving me and increasing in dosage, instead of making me feel better was making me feel very ill, although eventually within range for T4.

In the end I went private, had private tests and was found to be have low T3. My private doctor gave me prescriptions for Armour which worked brilliantly and I soon managed to get it on the NHS.

What on earth am I and many like me going to do when the rug is suddenly pulled out from under our feet and they take it off us, which I think will be sooner rather than later.

I am 70 and only on a basic state pension, I have been stable on Armour for all these years.

55 Replies
oldestnewest

I'm sorry that I can't answer your question, but I am curious about the testing that showed you were thyroxine resistant. Are you possibly able to elaborate?

celiar0
celiar0 in reply to SewinMin

I had private tests with a lab my private consultant recommended. Can’t remember the name of it now but it was well respected in the thyroid world.

SewinMin
SewinMin in reply to celiar0

If you happen to recall the specific test/s, I'd be really interested to hear. Cheers.

celiar0
celiar0 in reply to SewinMin

I’ve just recalled the name of the lab, it was NPTech. They were blood tests which the nurse at my GP surgery did for me. I sent them off and got the results back. Have an idea the tests were just for T4, Free T3 and T3 but not sure. It was a long time ago.

celiar0
celiar0 in reply to celiar0

Sorry I’ve corrected my post because I had low T3 not thyroxine resistance. The thyroxine took me into normal range but I still didn’t feel well. Turned out I had low T3 but NHS don’t recognise this and they wouldn’t give me T3. Hence me going to a private specialist.

SewinMin
SewinMin in reply to celiar0

Oh I see. Glad you had a good outcome.

celiar0
celiar0 in reply to SewinMin

Great outcome at the time but now they are about to take my Armour away from me!

I too have been in this situation and still looking for a solution I’m afraid. I had a reaction to Levo tablets and Armour seemed to hit me like a gun when it kicked it making things so much better...... I was even funding the meds myself with a private prescription which I also paid for and they still took this away from me ...... but just gone back over 20 yrs with my meds !!!!! Even local MP’s don’t help nor will my Endo .....so let me know how you get on !!!!

I’m presently looking for docs in my area that know about thyroid issues beyond the cheap Levo they normally prescribe as meds as it just doesn’t suit me.

Good luck and hope your doc helps you for as long as possible.

celiar0
celiar0 in reply to Bridgette68

I paid for mine for a few years but only paid £25 a pot then. Now my chemist is telling me he is having to pay £749 a pot! Can’t understand why the NHS is being charged that. I’m sure it’s not that expensive.

Interestingly I got a GP to prescribe it for me when the daughter of that GP was hypothyroid and still not doing well on thyroxine. After discussing it with her she did her own research and got her daughter on it. Unfortunately she’s now retired.

I am 68 and also on a state pension, but (like many others) I get my NDT on-line. It isn't ideal but if the NHS won't supply it, it is our only option.

celiar0
celiar0 in reply to Hypopotamus

I take your point but after paying my bills I’m struggling. Don’t know how much Armour is to buy but if it’s anything like the £749 my chemist tells me he has to pay for it I haven’t got a cat in hell’s chance.

Hypopotamus
Hypopotamus in reply to celiar0

We can't give specific details on the forum, but you can get an alternative NDT for much less than that. PM me or other members for details if you need to.

Hi celliar0

I’m sorry that you are such a predicament. I don’t claim to be knowledgeable about this side of things, but if i remember rightly, I read, possibly in a past post that you have to give your consent for a change in medication and they can’t change it especially if you have been on it a long time and done well on it.

so hopefully someone with more knowledge about that side of things than myself will come along and advise you.

Good luck x

MaisieGray
MaisieGray in reply to Tilley-2

No not really! If a Dr believes that you do not need a drug, or that it is doing you harm, or that there is a more effective drug, they don't need a patient's permission to withdraw it - that would be nonsense if say, the drug was causing them very real harm. It's good professional practise of course, for a dr to discuss changes in treatment but they don't need consent, and they certainly can change it - my T3 was withdrawn after 9 yrs and my T4 halved after 40 yrs. Then add to that, that NDT is an unlicensed drug in the UK, and Drs are generally required to prioritise the prescribing of available licensed drugs before unlicensed and specials; and that many CCGs have blacklisted or red lighted T3 thus making it difficult for Drs to prescribe even if they wanted.

This is from the tpauk site -

tpauk.com/main/article/stra...

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It's a shame they keep taking away medication that works for many because the medical professionals deem it harmful although to me it seems that cost is a factor mostly can you do prescription cost sharing with NHS or get a supplement insurance for prescriptions ? My mother has to get a supplement insurance in the United States she on Medicare which I think is simular to NHS medicare will only cover certain meds and they have a habit of taking away meds and replacing them without her knowledge until she picks up her prescription and for the sick person this problematic.

After long discussions with an NHS consultant he gave me a prescription for Armor which my last surgery charged me £20 to write and then approx £100 for 100 tablets. I have moved from Devon to Sussex haven’t seen a consultant yet but waiting to see what happens here. As I now have heart issues which thyroid could be to blame for not very happy

celiar0
celiar0 in reply to JUDYMSHAW

Why do you say Armour could have caused your heart problem? From the research I did at the time, as long as I monitor well and I keep my T4 as close to the lower range as I can and in the upper quartile for T3 there shouldn’t be any problem. I can understand that overdosing regularly and not monitoring can though.

I think JUDYMSHAW probably means that being undermedicated or messed around with her tablets could have affected their heart.

Ah ok. I read that wrong. Thank you for clarifying.

Yes that’s it and my cardio consultant seems to agree which really makes me mad about the way the NHS treats us!!

celiar0
celiar0 in reply to JUDYMSHAW

What they are doing is criminal. What’s happened to the Doctors Hypocratic oath of doing no harm?

celiar0
celiar0 in reply to JUDYMSHAW

I would love to find sympathetic endo’s in my part of the country West Midlands).

I agree with Hypopotamus, the last resort is to buy your own. It's a lot cheaper than I originally expected. If you want to find good sources make a brand new post asking memrbers to private message you.

The only other option is to fight, get your MP on board, etc.

Unfortunately my MP is about as useless as a chocolate teapot. I would like to know the current cost of 100x 1 grain tablets of Armour now though, if anyone knows.

I wrote you a long reply and my browser crashed and lost it :(

Armour is the most expensive one, the cheapest are Thai brands like Thyroid-S.

And then there are many inbetween. I take Nutri-Throid, which is another US brand, but about a third or a quarter of the price. Whichever you go for you'll be able to get it much cheaper than the NHS. They accept ridiculously high prices.

I'll look up what I pay for you.

Thank you, I’d appreciate that.

Sorry, I've named mine wrong, it's Nature-throid. Confusingly Nutri-throid is a completely different product!

vgvi
vgvi in reply to SilverAvocado

Something strange is going on with Thyroid meds. The powers that be are messing with us. I'm in the US and use Nature thyroid because it works and is cost effective but I keep having problems getting it. This is the second time in the last year they are out and my pharmacy can't get it for me. I got sick the first time and could barely get out of bed. Lost my health, finances and relationship. Now I'm finally feeling better and putting my life back together and they are doing it again, ...Just an FYI

SilverAvocado
SilverAvocado in reply to vgvi

Sorry to hear that :( It's amazing how heartless they can be.

celiar0
celiar0 in reply to vgvi

I empathise completely. I am dreading them taking my Armour away, I was so ill before I went on it, I couldn’t function at all.

I've sent you a private message, let me know if you have trouble finding it. It should come up as a red blob next to a picture of speech bubbles at the top of the screen.

Bridgette68
Bridgette68 in reply to celiar0

I have been unable to buy armour without a prescription which my Endo and doc won’t give me !!!! So have had to find an alternative myself ..... I was paying £150-£170 for 100 tablets via my prescription for 3 grain

Bridgette68
Bridgette68 in reply to celiar0

My MP hasn’t even bother to reply to several emails I have written !!!! So no trust in them or the docs

I don't know too much about the kinds of fight you can do, because I just gave up and bought mine.

There's definitely a lot of useful info on the forum if you can find it, or if you start a new thread asking just about how to fight and appeal

I know people have appealed directly to their CCG (clinical commissioning body), as they're the ones who make financial decisions.

Unfortunately it's vanishingly rare to be prescribed NDT in the UK, so it may be hard to build any case besides that you've been well for a long time.

Another side to the question is what your GP will offer instead of the NDT. If you're offered T3 or T4 and T3 combination it's possible you might do well on it and always worth a try.

And another thing worth trying is to accept the prescription they give you, and take half of that while buying half the NDT you need and mix and match that way. This can keep down the cost you're paying out of your own pocket, and you may still do well.

What's 'special' about NDT is both that it contains a mixture of T4 and T3, and that it contains these as part of the more complex molecules that help them get transported around the blood, and many other trace chemicals a healthy thyroid makes. No one fully knows what all these extra bits do, but it might be that you can get the benefits even if they aren't included in your full dose.

If they offered me T4+T3 I’d snatch their hands off but I think we all know the chances of that are very slim if not non existent. Do you mind telling me how much you pay for your Nature-Throid?

I've sent you a private message with the details. Discussing specifics of where to buy from is against the forum rules, and I thought that was a bit close.

Let me know if you can't find the message and I'll re-send it.

Apologies.

Would you send me the same info please as I too lost my Armour prescription from my doc and sourcing alternatives other than. Levo. As I have a bad reaction from it.

Thanks but I can’t seem to find your private message.

I've resent it. Hopefully it will turn up, now :)

celiar0
celiar0 in reply to celiar0

I went on Armour in the first place because I couldn’t get T3 from the NHS.

celiar0
celiar0 in reply to celiar0

I went on Armour in the first place because I couldn’t get T3 from the NHS.

Dear celiaro,

Maybe, I have Misread your Post, but didn't your Doctor say that he Could Re-Prescribe this Drug? If this IS, the case- especially Longer Term- do you have a Problem? Surely this particularly, the case, if you React to/ do not Tolerate, alternative drug(s).

I confess that I don't know, about your Condition specifically, so maybe there is, 'Something' that I Don't Understand. Sorry if I am Completely Wrong, this though just Struck Me.

AndrewT

My GP is quite happy to go on giving it to me but he has to do as he is told and will ultimately be told not to give it to me any more.

LAHs
LAHs in reply to celiar0

Grab the prescription while you can. It's harder to get a prescription than buy the Armour. Many on-line sources will sell you Armour but only if you have a prescription - and you have that. Shop around for a reasonable price.

celiar0
celiar0 in reply to LAHs

Oh I will but I can’t bury my head in the sand and say it will never happen. I want to be like the Boy Scouts and be prepared.

LAHs
LAHs in reply to celiar0

Similarly, when you think positively and keep hammering on towards your goal relentlessly and tenaciously you usually get what you want regardless of your setbacks. Join the fight, write to your MP, write to your newspaper, call the manufacturer and ask them how the hell can you buy what they are selling. Get tough. Don't worry, Amour comes from the US, they are used to pushy customers and their religion is selling and making money, they are unlikely to tell you, "Sorry, you can't have it!". YOU'VE GOT A PRESCRIPTION, GO FOR IT GIRL, YOUR LIFE DEPENDS ON IT!

celiar0
celiar0 in reply to LAHs

Thanks for the motivation LAHs

I was prescribed Armour on the NHS in 2009. They took it away from me at the request of the CCG in 2014. I now get a private prescription from my NHS consultant (which he does not charge me for) but have to pay for the tablets myself. Armour is the most expensive although you can save money by buying the biggest tablet. In my case I take 3 grains a day and the single tablet for that costs £1.85 from a UK chemist. I have to factor that into my cost of living.

I did try Nature Throid as it was cheaper but I became unwell and my TSH rose to 10 so it either does not seem to be working at the moment or I need to take more of it, which is a false economy. I am therefore, going back to Armour.

Of course it does not help that GBP has been 20% lower than normal since the Referendum. I am hoping that once Brexit is sorted out, the pound may rise against the dollar and Armour becomes a bit cheaper again.....

celiar0
celiar0 in reply to claudiasmum

I hadn’t realised they’d been taking it away from people for that long! I take 1 and a half grains a day so I’ve been getting prescriptions for 1 grain tablets and cutting the half. Whereabouts in the country are you claudiasmum?

In Kent. Many people had their NHS Armour taken away before I did.

Guess I’ve been lucky up till now then. I’m wondering if anyone has tried to get thyroxine and T3 from their GP’s as an alternative.

I'm in the states and was on Armour. Suddenly a few months back in the news they said that they were taking it off the market because they had discovered it didn't really have the amount of hormone in it that it was supposed to. Supposedly it was being manufactured improperly. I call BS on this and my doctor agrees. First they took porcine thyroxine off the market and now this. Both of these meds you really have to get from Naturopathic doctors here. Mainstream doctors insist on ordering synthroid or Levo here. I think it's big Pharma trying to dictate to us that we have to buy their meds and it's only going to get worse. This may be trickling over to Europe, and may be why you're having trouble getting it ordered. I hope I am wrong, but I can't get it here.

I think here in the UK it’s more down to cost. As far as I know Armour is standardised.

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