Could I draw your attention to a 38 degrees petition I just found asking NICE to license NDT for use on the NHS.
It looks like its been kicking around a while, so sorry if this is old news. Anyway it looks close to target and as this is an issue that affects quite a number of us, getting one more petition across the line can only help...
Surely it is licensed already as it has been prescribed. The issue is the extra cost, hence the insistence by the medical profession that thyroxine if fine and there is no reason to prescribe NDT.
Even in the USA, Armour and Acella are not licensed - these are from the official FDA site DailyMed:
ARMOUR THYROID- thyroid, porcine tablet
DISCLAIMER: This drug has not been found by FDA to be safe and effective, and this labeling has not been approved by FDA. For further information about unapproved drugs, click here.
DISCLAIMER: This drug has not been found by FDA to be safe and effective, and this labeling has not been approved by FDA. For further information about unapproved drugs, click here.
Unapproved prescription drugs pose significant risks to patients because they have not been reviewed by FDA for safety, effectiveness or quality. Without FDA review, there is no way to know if these drugs are safe and effective for their intended use, whether they are manufactured in a way that ensures consistent drug quality or whether their label is complete and accurate. Unapproved drugs have resulted in patient harm, and the agency works to protect patients from the risks posed by these drugs.
Thanks for that. But in the end, it will still come down to persuading the medical establishment that they have been wrong about NDT, and them then being allowed to prescribe it instead of thyroxine despite the extra cost.
Were there UK licensed desiccated thyroid products, I think prescribing would become easier. To begin with, quite possibly mostly on private prescriptions. In time, maybe NHS would follow.
The lack of a licence is significant to many doctors.
I think the issue is in the detail. It's a while since I trawled the net for the reasons, but I believe the problem is that there is not a licensed NDT provider in the UK and NDT is on the "should not be prescribed" list. This despite NDT being approved (by virtue of it being a historical drug that predates the approval system, much like aspirin). This situation means all patients receiving it on the NHS have to go down the Named patient route to get it from a "foreign source" and very few GP's / Endos are willing to do that.
NICE needs to change this by licensing a provider, which would avoid this "named patient" situation and give the green light to GP's and Endos, especially as NDT is a lot cheaper than Liothyronine and also a better tolerated source of T3.
But this is half the story, really the Endocrine society needs to be petitioned to educate their members. I've seen three local Endos, one privately (who incidentally is considered to be the top one locally) and they all say that NDT is old fashioned and unreliable, despite each one confessing that they have not had any direct experience at all, ever. Built in prejudice for the sake of prejudice through and through.
Although it is possible I have simply missed them, I am not aware of any UK products which are sold under a grandfathering arrangement. Indeed, I am not aware that the UK followed that route - ever.
I have several times posted about the death knell of Thyroid BP:
helvella - The end of Thyroid BP
A published letter which highlights the attitude regarding desiccated thyroid shortly before it was dropped from the British Pharmacopoeia.
I wholly endorse the desirability of a fully licensed UK desiccated thyroid product - or more than one!
We should also ensure that it is of the same potency as the USA products (which was not the case in the past). Thus permitting us to supply the USA, and the USA to supply us. Even if only used in an emergency, it would simplify changes between products, were they necessary. As we know, patients actually can often identify differences between products, but they should aim at being comparable.
I will certainly sign (if I haven't already). I have been on NDT for 3 years now and it has certainly changed my body for the better. I have also shared this.
Perhaps we should bombard the Pharmaceutical companies with emails and letters and try to convince them that there is a market for NDT. Probably wouldn't work but might be worth a try.
NDTs was the very original replacement from 1892 and has had a very good response and it saved lives from then on.
Unfortunately, for some unknown reason to us, the patients, it was withdrawn in the UK without any notice for those who were well upon it and then there was panic of what option would be able to help them remove clinical symptoms.
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