For those with a thirst for knowledge, a very good article on B12 deficiency attached

aahs.org/medstaff/wp-conten...

[coetzeegisela]

With thanks for the info source - surprisingly difficult to come by straightforwardly, other than to have to have to run a gauntlet of prior extemely expert knowledge.

[Hidden in reply to coetzeegisela]

So true. Not an easy task when one is befuddled with brain fog either. But knowledge really is power when it comes to chronic illness.

[PinkNinja]

Thank you. A very interesting article. I will have to read it again to take it all in but I found the first read very interesting. It satiated my thirst for knowledge for a while

Thanks again.

Carolyn x

[Marz]

Very timely as a close friend had an episode on Friday. She is having B12 injections but I can only think she had mis-judged the timing of the next one. She thought she was having a stroke. B12 injection purchased this morning in the village Pharmacy and administered in our 24 hour Health Centre - again in our village ! This is bankrupt Greece for you !! Do hope she will now begin to understand the importance of B12.

Hampster1 - please could you advise me as to the tests she needs to rule out PA and Parietal Cell AB's. We have done Thyroid ones some time ago....within range but low T3. Have looked at the PA website but you have to join to learn more....

Thank you for the link - will need to print off and have a good read.

[Hidden in reply to Marz]

I would recommend reading the forum anyway over on PAS - you don't have to be a member to read it.

PA itself is very difficult to diagnose these days, since they stopped doing the Shilling test. I think they will only definitely call it PA if you test positive for Intrinsic Factor (IF) antibodies. If you have IF antibodies, you have PA. However, the absolutely huge problem with this is only about 50% of PA sufferers test positive, so a negative result does not rule out the condition.

Parietal Cell (PC) antibodies are much more commonly found in PA sufferers, something like 80-90%. However, it is not specific to the condition - you can be positive for other reasons. I personally disagree, since PC's make IF, so if your PC's are under attack you won't be making any IF. And why would you have any IF antibodies, if you don't actually have any IF!

Sounds to me like you and your friend have the right idea, the problem needs to be addressed with large doses of B12 regardless of the cause, and ideally shots need to be spaced out in such a way as to occur just before symptoms return. Keeping a symptom diary is a good idea to work out your own personal frequency, everyone is different.

H x

[Marz in reply to Hidden]

Thank you that is so helpful and ....informative. M x

[nightingale-56]

Thanks for more B12 info Hamster. Will be forwarding this info to my son's endo in the hope that he is still interested in B12 info. Have not heard back from my e-mail to him a week ago, but will post if I do. Janet.

[nostoneunturned]

Thank you for this, Hampster, for this extremely interesting article. As one who used DIY sublingual (not oral which means swallowing tablet) treatment when GP was completely uncomprehending (and by the way had never heard of methylmalonic acid) I was particularly interested in the observations (Page 158) that MMA was lower and B12 higher in those treated orally compared to a group treated parenterally.

For those who have a thirst for yet more knowledge download Kevin Byrne's Professional Version of his paper

"The Enterohepatic Circulation of Vitamin B12" from the Pernicious Anaemia site. In it he carefully explains, among other matters, the difference in absorption afforded by oral versus sublingual administration.

[Hidden in reply to nostoneunturned]

I think it's got something to do with the fact that oral sublingual route is daily, whereas injections are more spaced out. I think it would prob be the case that people on more frequent injections wouldn't have that discrepancy. Just my opinion anyway, treatment offered currently is a shambles whatever way you look at it.

[nostoneunturned]

Interesting thought of yours about dosage frequency influencing responses. Perhaps I should write thanking the GP for his incomprehension!

[Hidden in reply to nostoneunturned]

Well, looking at the article the study was based on a 4 month period, with 7 injections in the first month followed by monthly injections thereafter. So by the time they retested the subjects they were on monthly injections. It stands to reason this wouldn't be frequent enough for some people.

I definitely think you should post your GP articles every time you find them! Have you ever told him that the sublingual B12 route worked for you? What was his reaction?

Out of interest, have you ever looked into the genetic defects side of the methylation cycle? I think that's probably the way medicine needs to go, to tailor B12 treatment to individual patients. It's something I'm planning on trying to get to grips with, because I know I really do well with the hydroxo injections, but I also do get something out of the methyl subs. But I have to say, if I had to choose between the 2 it would be the injections. My symptoms return without them, despite taking the subs. One size really does not fit all.

[nostoneunturned in reply to Hidden]

He is a trifle sensitive, might react badly to informative articles as he was incandescent when I took printed information from b12d.org plus PA society to him in an attempt to get injections - no good, he would not even take them from me when I asked him to read them. Oh, yes, he certainly knows the subl method worked and reacted with a lying letter to me claiming that he "had documented that you refused treatment". !!! Then he refused to have anything to do with me!

Priceless! A complete mess, to think such people are supposed to be looking after our health - were it not for the knowledge gained from the PA Society/b12d.org I would have sunk without trace.

But your "One size really does not fit all" comment really emphasizes to me how lucky I actually was in that my system was (and is) receptive to subl supplementation and there is no trace of my 28 or so symptoms.

No, I have not looked into the genetic defects side of things so far, but will.

[infomaniac]

I started taking sublingual B12 a little while ago and like Biotin, it gave me acne (I am a lady of a certain age who didn't even have spots as a teenager!) Does anyone know how I can get round this?

[Hidden in reply to infomaniac]

There is mention of acne here (scroll down near the bottom):

b12d.org/b12-deficiency-5-b...

And quite a few mentions on the PAS forum (type in "acne" in the search box):

pernicious-anaemia-society....

I don't know how you get round it, if it's a detox symptom you could try a really small dose of B12 at first (break the sublingual in quarters?) and then build up the dose very very slowly.

H x