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Pernicious Anaemia Society

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What do you think about this PAS article?

Sleepybunny profile image
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PAS advice to GPs on how to manage PA during pandemic

pernicious-anaemia-society....

Just wondered what you all thought about this article. I have heard that this GP has promoted oral treatment for PA and B12 deficiency in the past.

I suppose I'm concerned long term that if GPs think oral treatment is effective for PA and other causes of B12 deficiency during pandemic, it might give them incentives to use it after pandemic is over.

She states that about 1% of B12 from a B12 tablet can be absorbed passively in the gut but I don't think this is something that can be relied on.

I do think that if patients try oral treatment and it doesn't work, it's vital that patients let GPs know that it's not working. I suggest a polite letter to GP.

Oral supplements do very little for me although they help a little bit and when I use them I use high strength ones. I need far more B12 than UK guidelines suggest.

Some forum members have reported being prescribed low dose cyanocobalamin tablets ; I think 50 mcg strength. I thought that these were only recommended for dietary deficiency.

This UK link below suggests that 50 mcg cyanocobalamin can be used for treatment of PA if injections not possible and suggests at least 6 of these tablets a day (300 mcg).

medicines.org.uk/emc/produc...

Just noted that the cyanocobalamin tablets contain lactose so be wary if you're lactose intolerant.

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fbirder profile image
fbirder

I made a comment that I though it a really bad idea that the PAS is advocating replacing injections with pills.

I was told my comment was not allowed because the PAS are not advocating replacing injections with pills.

So I asked what I was supposed to do when my GP says "You don't need injections. The pills you can buy yourself are good enough. Look that's what it says on the PAS website."

Here is the relevant bit

"Prescribe 1,000 mcg cyanocobalamin tablets, to take 1-2 tablets daily. In patients with Pernicious Anaemia, oral B12 cannot get absorbed through the intrinsic factor route, because they do not have any. However, there is a second, much more limited route of absorption, passively through the intestinal mucosa. About 1% of any oral dose is absorbed this way. Therefore of a 1,000 mcg dose, c. 10 mcg gets absorbed, which is enough for the daily requirement.However, some patients report that this does not work well for them, and they experience a relapse in their symptoms. Particularly in patients with any bowel condition (e.g. Crohn’s, coeliac disease, small bowel overgrowth, bile acid malabsorption, short bowel) this may not work. "

Note the obvious absence of people with PA in the list of those for whom this might not work.

How can people with no IF absorb it passively, but people with bowel conditions can. It is passive absorption! It makes no difference to the B12 molecule what sort of membrane its crossing. And if the 'leaky gut' theory has got any substance to it at all it should be easier for B12 to 'passively diffuse' for some of those people.

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Gambit62 profile image
Gambit62Administrator

The article clearly states that careful monitoring of symptoms is required if someone is being prescribed high dose oral B12. This would actually make it a far from ideal solution in the current situation where the aim is to maximise the availability of NHS staff to focus on COVID-19

The PAS does not advocate use of high dose oral tablets in preference to injections and, personally I don't think that is the aim of the article.

Gambit62 profile image
Gambit62Administrator in reply to Gambit62

The list of conditions mentioned in the article that may have particular problems with passive absorption are those who have conditions that tend to affect the integrity of much larger areas of the gut than just the specific area targeted by PA.

The article has been written by one specific GP who works with the PAS. If you have specific concerns or comments on the article then please contact the PAS using the email suggested at the bottom of the article (though I realise that the article does specify it as a contact point for health care professionals - which I presume is because it is intended to be part of the sub-site aimed specifically at health care professionals)

info@pasoc.org

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