"Unnecessary B12 shots costing Ontari... - Pernicious Anaemi...

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"Unnecessary B12 shots costing Ontario millions" In news today

Ritchie1268 profile image
15 Replies

That's expensive!!!

cbc.ca/news/health/unnecess...

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Ritchie1268
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15 Replies
Nackapan profile image
Nackapan

That's ridiculous compared to the price of other treatments and drugs.

JMN2017 profile image
JMN2017

"a recent graduate of medical school, remembered that little time was spent on the appropriate treatment of B12 deficiency.

"I recall there was one slide in my class that said you treat B12 deficiency with a pill or an injection. And that was it."

This is the only part of the article I believe ;) The rest sounds very doubtful to me.

"...and there are even potential risks of over-doing it [B12]"

"...which found an association between high intakes of vitamins B6 and B12 and hip fractures in older women."

Overdoing B12 isn't likely to be a problem but too much B6 can be problematic, as we know.

Not a good article, in my opinion ;) ... to say nothing of the cost!!! ;)

helvella profile image
helvella

Silverstein, a recent graduate of medical school, remembered that little time was spent on the appropriate treatment of B12 deficiency.

"I recall there was one slide in my class that said you treat B12 deficiency with a pill or an injection. And that was it."

If that is true, it is not at all surprising how difficult it is for those who need to get diagnosed and treated.

Plucky1976 profile image
Plucky1976

$530? Well, teach people how to self inject after first dose and problem solved. I get 3 injections per week and am no where near that amount for the year. I’ve been so annoyed lately with what doctors have to say about b12 that I cringe every time I’m about to read their comment. Just yesterday, I went for a pedicure and the lady doing my nails was saying how she was taking vitamin D and she asked me what I take. I mention b12 and the first thing out of her mouth is “oh be careful not to take too much.” The look on her face was priceless when I told her that I get an injection every other day. She had no idea that people don’t absorb it. I’m just tired of all of the explaining. I feel like a broken record.

deniseinmilden profile image
deniseinmilden in reply to Plucky1976

Thank goodness for your reply though - it makes the rest of us who feel the same know we're not alone!

Cherylclaire profile image
CherylclaireForum Support

Like Plucky1976 and deniseinmilden and many others, I have had to self-inject frequently to stop nose-diving into deterioration.

I am also sick of explaining myself to others - mostly others who should know better, should be helping not hindering my recovery, and are taking far too much notice of Katy Perry et al.: I'm talking about medical professionals.

For instance, an Inherited Metabolics Diseases consultant told me that he understood about the "euphoric effect" of self-injecting B12 !!!

Can I suggest that medical experts stop reading poptweets and read current medical research instead if they want information about B12 deficiency sadly lacking from their training ? After all, this is what we have to do in order to formulate valid arguments to protect ourselves from serious undertreatment or withholding of treatment altogether !

Katy Perry may be excused for being unaware that taking a water-based vitamin that she doesn't need will last as long as her first wee. Let her waste her money. Experts are expected to know better.

The large proportion of the cost of B12 injections can be eliminated by getting a nurse to teach groups of patients how to self-inject.

The only side-effect commonly experienced initially is a few post-injection spots, as far as I can see. This would probably bother Katy Perry a lot more than it bothers me !

Midnight_Voice profile image
Midnight_Voice

There’s a lot of good stuff under the Research link in that article, to :-

cmaj.ca/content/171/3/251?i...

Although it’s from 2004 (and says >20%, not the ‘about 20%’ quoted in the article that links to it), it has a lot of useful diagrams. Have we had this article in our armoury before?

The quoted 20% does not fly, as some simple maths on the figures above it gives 36% (100 - 64) as the number in the study who must have had confirmed B12 deficiency; and no doubt about the same percentage of those in the 64% who had not been tested (no split between ‘untested’ and ‘tested normal’ is given, I note) would add to that 36%. Sloppy journalism there :-(

The linked article does, I note, make an interesting distinction between PA and ‘food-cobalamin malabsorption syndrome’, as though these were two different things, but this distinction is not anything I have seen mentioned recently, and I think the authors were pushing the suggestion that this could be alleviated by the oral administration of ‘free’ cobalamin, whatever that is (tablets?).

A drum that the referenced article is also beating, suggesting that oral treatment would be much cheaper in Ontario, as if it could ever be as effective as injections, which most of us have found, I think, that it can’t.

Note that ‘food-related’ isn’t ‘diet-related’, a distinction they do make, Diet-related means not taking enough B12 on board; food-related means taking enough on board, but not absorbing it properly.

But ‘food-related’ versus PA is not a distinction anyone in the UK medical world is making today.

And we can only stare in wonder and envy at a place where every senior, B12-deficient or not, freely gets double the dosage that the NHS grudgingly metes out only to the most severe cases of B12d; and not in every case, even then.

fbirder profile image
fbirder in reply to Midnight_Voice

"distinction between PA and ‘food-cobalamin malabsorption syndrome’, as though these were two different things, but this distinction is not anything I have seen mentioned recently, and I think the authors were pushing the suggestion that this could be alleviated by the oral administration of ‘free’ cobalamin, whatever that is (tablets?)."

Sounds like good science.

B12 in food comes bound to proteins. To get absorbed it needs to become detached from those proteins (so that it can attach to Intrinsic Factor). One thing (there may be others) that can hinder this process is a lack of stomach acid, which gets more common in people as they age.

So it is possible to have problems absorbing B12 from food, even though you're producing lots of Intrinsic Factor. If you do fall into this group then taking tablets (containing free, i.e. unbound, B12) may, indeed, work where a high-B12 diet doesn't.

Cherylclaire profile image
CherylclaireForum Support in reply to fbirder

Salivary gland infection with saliva duct strictures (just looking at a menu could make my face go like a giant hamster's) mean that haptocorrin in saliva also trapped, leaving extrinsic factor (B12 in food) unprotected, compounding existing problems.

This additional consequence was confirmed for me by a senior ENT consultant - another specialist in this same area able to recognise B12 deficiency symptoms by sight (on examining mouth, tongue, throat). Shame this group do not teach GPs during training about some of the visible symptoms to look out for in B12 deficiency.

fbirder profile image
fbirder in reply to Cherylclaire

There was a person on HU a few years back whose B12 deficiency was attributed to a lack of saliva and, hence, haptocorrin to protect B12 from stomach acid. I'd never heard of it before then.

Cherylclaire profile image
CherylclaireForum Support in reply to fbirder

Could have been me, fbirder

- been looking for answers an awfully long time now.

Had the problem dealt with, by tiny balloon and a camera (yowch), but still have B12 deficiency, folate and ferritin problems. Was also given instructions to drink lime juice, eat salt & vinegar crisps and massage salivary gland area - does seem to stop recurrence.

So not the total picture, but no longer get hamster-faced when a menu is put in front of me - much to the regret of certain members of my family !

Midnight_Voice profile image
Midnight_Voice in reply to fbirder

It sounds like possible science.

The name Andrès crops up again and again, as a Google search shows, and it also shows that not much, if any, of this is recent,

And in 2015, the most recent citation I could find, even the authors recognised that FCM was still ‘controversial’.

The acid test, if I may use that expression, is to treat a group of people with this condition with oral B12, and a control group with IM injections of B12. And they got about 35% comparability; I.e. 65% of people did better on the injections. And this was based on blood levels, with just some anecdotal indications that some of the 35% felt better, or saw other improvements.

But since 2014, the BCSH has recognised IFab- B12 deficiency as PA, with the same injection treatment regime as when IF antibodies are present, and oral B12 as indicated only for diet-related B12d.

On the personal level, always anecdotal but closest to home, my wife, who tested IFab- after an initial diagnosis of, and treatment for, PA, was told by our GP that she didn’t have PA, but rather gastric atrophy, and wasn’t going to get injections any more.

So she tried oral B12, in suitably large doses, and it didn’t work at all. Going back onto injections, after a change of GP, did produce noticeable improvements. We think it’s almost impossible that she is actually IFab-; just that she is in the 50% who test negative, even though they are IFab+.

We wish oral did work, though; it would save so much hassle. But it hasn’t.

As ever, I must report that I am not medically trained, and I don’t pretend to understand the biochemistry of all this; but I do recognise when a drum is being banged for something, however genuine the motives of the person banging it may be.

And so I just go back to the BCSH guidelines, which don’t even consider FCM. And I’m glad they don’t, as the oral B12 treatment recommended would only take us further away from what is needed.

EllieMayNot profile image
EllieMayNot

I have stopped believing what I read/hear/see in mainstream media. They exist to sell ads. While you may gather a bit of truth from time to time, by and large I find that they offer little more than trendy hype.

fbirder profile image
fbirder in reply to EllieMayNot

But reports in the mainstream media that provide links to the original material, like this one, are a totally different matter. You can go back and check out the original research.

EllieMayNot profile image
EllieMayNot in reply to fbirder

Agreed, sources are good. The problem that I see is that anyone can cherry pick studies to suit an intended agenda and my trust in the media is quite limited. I have come to expect them to present only one side of any given argument.

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