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Pernicious Anaemia Society

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Get From Medisave + Video Description of B12D

B12again profile image
7 Replies

I have just started SI, IM but going SC. Apart from 6mm needles at Amazon, you can get everything from Medisave: 1.5”x 21G, green needles, 100 @ £3.21+vat for drawing liquid into the syringe, hypodermic syringe 2ml, 100 @ £4.18+vat. Sharpsguard 1ltr sharps (needles) bin, £1.59+ vat, cotton wool balls (pack of 200 £2.14+vat)) if you need them and have access to rubbing alcohol or get a box of wipes sachets (do not know cost but cheap). Below is a very short but excellent and simple video showing, diagrammatically, what Functional B12 Deficiency is. It highlights why when one is tested for B12 deficiency and all shows normal, that is not the full story and why you will still need treatment. Thanks to the member who posted this in an earlier thread, it cleared up some confusion for me.

youtu.be/q5cyMLt6N7Q?si=A40...

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B12again profile image
B12again
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7 Replies
wedgewood profile image
wedgewood

A very well explained video EXCEPT that the narrator suggested that the Intrinsic Factor Antibody ( IFAB) test would show positive if the patient did indeed have Pernicious Anaemia . We all know ( to our cost ) that this is not necessarily true - The antibodies do not show up in about 50% of P.A. patients . This ought to be pointed out . It is a source of huge concern for P.A. patients , and leads to many patients not getting the treatment that they desperately need, as doctors believe the IFAB test to be accurate .

Well actually it is accurate , but the dratted I.F. antibodies do not always show up . …..Try convincing your doctor to keep testing for Intrinsic Factor Antibodies till they decide to appear!!! …. …………………. Diagnosis must always take symptoms into consideration.

Other wise this is an excellent video for patients who have no medical knowledge , like me . Thank you B12again .

B12again profile image
B12again in reply towedgewood

That’s what’s so great about the forum, gaps get filled in and not only from knowledge but also from experience and not always happy ones either. Thanks wedgewood. 🙂

MEguy profile image
MEguy in reply towedgewood

what is the treatment if you can't get B12 from the blood into the tissues?

wedgewood profile image
wedgewood

It seems that if B12 comes directly by way of an injection , and not from the stomach , the b12 is absorbed . That’s my understanding anyway . Other wise , there would be deaths from P.A. ( by the way , I’m no expert , I just pick up information by reading posts )

B12again profile image
B12again

This may help….

In Functional B12 Deficiency, the issue often lies in the body's inability to properly use or metabolise vitamin B12, rather than a problem with the delivery of B12 to body tissues. B12 injections are typically used to bypass any absorption issues in the digestive system, such as Pernicious Anaemia, which can hinder the absorption of B12 from food.

When B12 is injected, it goes directly into the bloodstream. From there, it can be transported throughout the body and taken up by cells and tissues that require it for various biochemical processes. The issue in Functional B12 Deficiency isn't with the distribution of B12 within the body but with how the cells utilise it, which may involve problems with B12 metabolism or enzymatic functions.

The injection ensures that an adequate amount of B12 is available in the bloodstream for uptake by cells, even if there are issues with the normal absorption of B12 from food in the digestive system. Once in the bloodstream, it can be used by cells and tissues, albeit with some impairment in Functional B12 Deficiency cases.

Put simply: In Functional B12 Deficiency, the problem is not with how B12 gets to body tissues but with how the body uses it. B12 injections deliver B12 directly into the bloodstream, making sure there's enough for your body. The issue isn't delivery but how your cells work with B12, which can be affected in this condition. The injections help bypass problems with getting B12 from food.

Treatment will need to be tailored to the individual as some may need injections more frequently than others dependent on how efficiently the body’s cells and tissue absorb the B12. Ergo, ‘Functional’.

Cherylclaire profile image
CherylclaireForum Support in reply toB12again

I believe that "functional B12 deficiency" is more generic a term - and includes more than just how the transported B12 is eventually utilised at cell/tissue level.

There are many processes and pathways that B12 has to go through in order to get sufficient B12 into cells and tissues. If there is a malfunction at any of these crucial pinch-points, the result can be that insufficient B12 gets through to where it is needed most.

"Once in the bloodstream, it can be used by cells and tissues..."

If the link between B12 and MMA is malfunctioning, this causes a build-up of both in the bloodstream, so here a serum B12 test and a serum MMA test would both give high readings. Whether the cells and tissues are able to absorb it or not, an insufficient amount would be on offer in these cases.

This much is known: my GP was able to diagnose functional B12 deficiency on the results of these two tests - after B12 deficiency was found and treated yet I continued to deteriorate. This diagnosis was confirmed by the testing laboratory because renal problems had already been eliminated as a cause for raised MMA. Later also SIBO.

Adult Inherited Metabolic Diseases consultants tell me that if a genetic cause is able to be found after examining a patient's DNA, the advice to GPs in their report is to administer 2 injections a week for life. Sadly, in a few cases, the patient has had to return due to a practice not following the advice given. This must be disheartening for the consultants and devastating for the patients.

There is still a long way to go before there is a complete understanding of the transportation and utilisation process of B12, what the potential flaws are and where they may be found. This committed team of consultants are still open to learning from their investigations.

My MMA took three years of frequent injections before eventually dropping into range on the sixth serum MMA test. It was never monitored after that.

Symptoms continue to be largely controlled by frequent b12 injections (now self-administered). Some remain a daily nuisance. Memory and cognitive difficulties have been the worst and most life-changing problems for me. In seven years of trying, I have found no measurable pattern by which I could improve this.

Mixteca profile image
Mixteca

Thanks for sharing that. It's a very easy to understand and clearly described explanation.

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