I've been on combination Levo and Armour for 20 years or so and well since 2016 when and NHS endo sorted out the levels and backed NHS prescribing Armour. On Monday the Armour was removed from my repeat script. I moved 2 years ago and the new GP's have written the script because I have the backing of the NHS Endo letter from 2016.
I spoke to the Dr yesterday. There was a meeting and it was decided to withdraw it due to the unlicenced nature of it and I'm being referred to an NHS endo of my choice (supposedly urgently but that could mean 6 months or more in the north of England). No one thought to tell me. He doesn't understand about TSH suppression (mine has always been suppressed) or about the inability to convert and freely admits I know more than him on the whole subject of Thyroid.
I begged an pleaded for the someone at the surgery who has happily prescribed for 2 years to continue until I saw the Endo as Armour is life giving to me. Or at least to give me time to organise a private script for my usual meds. I asked for combo T3/T4 whilst I waited to see Endo and he said he could only give me the option of monotherapy without guidance.
Is there anythng in NICE guidelines that says a GP should not suddenly withdraw a medication without notice when a patient has NHS backup to have it prescribed? This feels very unethical to me. Because of lack of eduction that the GP freely admits, I am to suffer badly - are there any protections agains this in UK law? Would you write to anyone above the young Doc and if so who?
BTW I know, I know, I know how lucky I am to have had Armour on the NHS for the last 20 years. I always knew this day would come!!!! Just unprepared for it coming out of the blue with no time to source it privately. If anyone was a quick route for this I would be immensely gratefu..
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YoginiDancer
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At the very least not giving you time to have ANY options to do something for yourself.
In a very different part of medicine, I am using an unlicensed medicine with the blessing of everything concerned. Their attitude to the status of medicines seems to be like roiling dice.
They'll keep rolling until they get the number they have already decided they want.
I rather look at it as a question. If the GP doesn't understand enough to prescribe it, how can they think they know enough to withdraw it?
Indeed, there are 21 pages of entries in the British National Formulary regarding treatment cessation across a number of medicines - many including the phrase "Avoid abrupt withdrawal."
Maybe try the hospital's PALS service. I know they often don't have much impact but it's possible that they could get through in a way that is difficult for an individual patient.
Thank you so much Helvella. I will wait until the practice have had their meeting on Monday then see if they change their minds after my reaction on the phone. If there is no change and the withdrawal continues I will do that and possibly just turn up on their doorstep everyday with the list of withdrawal symptoms and complaints from my employers when I can no longer work because of what they have done (let alone the potential cost if I end up in hospital as I did last time this happened 20 years ago)
But, I also noted that poster reported TSH suppression, and I am supposing the doctor may still argue that the withdrawal of the NDT is on this basis and link the TSH suppression to NDT causing harm.
The real ethical issue here is the prescribers lack of knowledge leading to potential harm.
I would complain on grounds of doctors professional standards. You’ll need to look it up to match it to their standards but “do no harm” is one. Another is that they’re obligated to work with patient and other professionals.
While they hide behind these group think decisions, it’s the Dr who delivered the news that has this risked a complaint to their professional body.
Also there’s an online tool to show how many prescriptions for Armour are made in your ICB area, if useful add this in too.
You’ll be having some symptoms soon so add those in. Good luck! Hope it’s resolved soon.
If you want to line up some emergency Armour, go to the Roseway Labs web site and book a phone consultation with the prescribing pharmacist. She's lovely and very understanding. Once you have a consultation she will issue a script for you for several months worth of tablets. Obviously you will have to pay for them, which is a pain as you had them for free, but this is what I and many others do and it's a quick, efficient and reassuring service.
OK so an important part of your bad news is that you are in the North of England. I do not hesitate to say that this is likely the worst part of the UK when you need to deviate from Levothyroxine monotherapy.
All the above suggestions are vitally important.
I especially like the ones Insomania makes. The GP who delivered the message is the one able to be named to the professional body. I like the ‘group think decisions’ comment very much too. Well spotted and articulated Insomania.
You have a fight on your hands and the sooner you get your head around this the better.
It is truly insane that you have been well for 20 years for this to happen. This total lack of common sense does not enamour us to our ‘alleged’ medical helpers.
The original reason for the GP wanting me to see an NHS Endo was to give him support to continue my current prescription when my TSH was suppressed. Ironically, it was the least suppressed it has been in the last 20 years (thanks to me understanding from instructions on here how to manipulate the test to get the highest TSH I could to reassure him).
He openly and freely admits he doesn't understand TSH suppression and that he is withdrawing the treatment after a team meeting in which they decided they could no longer prescribe an unlicenced medication, despite somebody at the practice doing it for the last 2 years (that's how long I've been in the new area).
He has told me several times that he doesn't understand hashimotos (and acknowledges that I know more than him) but as you all point out, he seems to understand it enough to withdraw the medication that's kept me happy and well for 20 years but it seems it it more ethical to admit to being uneducated than to follow the consultants advice because the letter is dated 2016 (the letter explains that it's ok for me to have a suppressed TSH)!!!!!! I have only requested that the prescription is written until I see the endo which originally I was only doing to please him, and enable him to continue with my script not because I wanted that.
I have been expecting this battle as I know there is no longer support for Armour in the NHS but my current objection is about the sudden withdrawal without notice, leaving me with a potential medical disaster on my hands since my body has got used to the drug over 20 years and to suddenly stop it now seems unethical at best and wholly irresponsible at worst. I'm sure they won't have any idea that the Roseway Lab is available quickly and efficiently as you have now taught me (thank you so much).
What annoys me is that they are treating Armour like a sort of little vague vitamin that might just be a bit nice to to take if I feel like it. But for me, not having it is the end of my sleep, brain fog will be back with vengeance, I will immediately suffer from word finding difficulty and debilitating exhaustion, resulting in daytime sleepiness, which means it won't be legal to drive and I may not be able to teach due to all of that. Taking me out means I won't be helping 250 people a week stay away from the NHS in my role as a health care provider. All because of a group think as you have all picked up so astutely!!!!!
I am an eloquent speaker when well and an outgoing, funny character with experience in the media. I am currently fantasying about how I can go public with this in some way (a media story, speak to the member of parliament locally, TV coverage - my outraged mind is going bananas...in the hope I could forward the cause on behalf of those of us who have paid into this system of the NHS all our lives (I'm 61) but are treated so shoddily, unethically with a huge dollup of disrespect, just because we are physically unable to force our bodies to react well to monotherapy and tick some Big Pharma enforced box!
My under treated thyroid brain however just wants to go back to bed and cry.
what about using these latest NHS guidelines for Lioythyronine ....it's not exactly relevant , as it's specifically about T3 but not NDT ,.... BUT it's the same basic principle ,,, T3 is a component of NDT after all.
this document refers to "liothyronine... in combination with levothyroxine" .. which is exactly what NDT is ... only difference is it's ready mixed thanks to a piggywig.
they will obviously try to argue that it's doesn't apply cos 'that doesn't say NDT blah blah' .... but it must surely add weight to your case for them to continue prescribing it until you are reviewed by endo.
according to this document the NHS clearly do not consider it safe to just stop T3 abruptly when it is used i combination with levo , so how can they argue it's safe to withdraw your T3 source abruptly just cos it happen to come from a pig and is ready mixed with T4?
i'd go with the argument that unless thye have evidence or superior knowledge to override this NHS advice about not stopping T3 abruptly, they should not be doing it , but instead they should wait for you to be reviewed by the endo.
( unfortunately the endo will almost certainly try and stop it anyway when you do eventually get to see one , cos removing it from 'anyone who has the audacity to move house' appears to be the direction NHS endo's are going this year ,,, but you probably already know that ..... )
"Liothyronine prescriptions should continue until the NHS consultant endocrinologist review has taken place.
Withdrawing and stopping liothyronine (including switching from liothyronine to levothyroxine)
After a review, if the decision is to withdraw liothyronine prescribed as monotherapy or in combination with levothyroxine, withdrawal should be gradual in line with NHS consultant endocrinologist recommendations and may take many months to complete.
Please note:
~ Liothyronine should not be stopped abruptly.
~ Dose conversion advice can be found in the BTA and SoC joint consensus statement"
oooh Tatty...how ace are you for coming up with this information. I can add weight to it with my heart condition and the inherent dangers of the doc causing a repeat performance when I ended up in hospital from a previous attempt at sudden withdrawal in 2015 (which is how I ended up with NHS approval in the first place). Though he has already acknowledged that I am simply expected to source it outside of the surgery which he will consider win win. OK, but at least give me time to source it.
As you say, I knew the day was coming. I would be prepared of course re-trial T3 if this was deemed necessary in the light of lack up NHS support for the very thing than makes us well, but these days I'm not sure it's the mission statement of the NHS to make anyone well, just line the pockets of the pharmaceutical giants instead.
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Increased anxiety…
Menopaused. Would starting HRT mean reducing NDT? Has anyone experience of this please?
I’m fine. Really?
Thyroidectomy or not? Thyroidmegaly and multi modular goiter. 
