B12 from the liver to the body?

[zonn44]

I have PA and was diagnosed in April after MRIs and Nerve conduction tests ruled out other neurological conditions.

I have anti-bodies to Intrinsic Factor but NOT to Parietal cells.

I understand that i can only get B12 into my system via injections.

Here is my question.

Once the B12 injections replenish the B12 store in my liver , by what process(es) does the liver deliver it to my system?

As any release via the bile duct into my gut system would also rely on Intrinsic Factor is there a back channel of bloodvessels that directly draw B12 from the liver without the need for Intrinsic Factor?

Thanks

Zonn44

[engels]

No. Forget about liver stores if you have a B12 absorption problem for whatever reason as the process for recycling B12 from the liver is the same as for absorption from food so won't work.

[Gambit62 Administrator]

As Engels says - the process for remetabolising B12 stored in the liver involves bile draining through the ileum where you already have a problem that prevents absorption ... so you aren't going to be able to recycle B12 any more either.

[zonn44]

engels and Gambit62 , thanks for your replies.

My Doctor said 1 injection every 3 months would be enough to 'refuel' my liver and last me for that period.

I am starting to doubt that that is enough.

So then if the liver stores are effectively useless how often should I get injected?

Is B12 stored elsewhere in the body?What type of specialist would know the answers?

Thanks Zonn44

[engels in reply to zonn44]

Finding the specialist who knows how frequently you need injections is very easy - just look in a mirror. We are all different in the amount of B12 that we need and the type of B12 that works best for us and nobody knows your body better than you do.

[Gambit62 Administrator]

You can no longer absorb or recycle B12 so in order to get enough you need the injections - it does take a while for your body to get rid of the excess B12 but just how long varies from person to person. Don't think anyone has ever managed to trot out any scientific evidence for 3 months for hydroxocobalamin - nearest people can get is a study in the 60s that showed on average people retain hydroxo 2x as long as cyano but the study also said that there was so much variation that you it would be wrong to say that everyone retains hydroxo 2x as long ... and some people actually processed hydroxo quicker than cyano.

Unfortunately the guidance neglects to mention that decay rates on B12 levels vary a lot from individual to individual and even with form of B12.

I don't think there is a good specialist to be referred to as generally its very hit and miss as to how much any medic really knows about B12 - which is a pity as it isn't an uncommon problem and consequences of not daignosing and treating correctly are pretty dire - must be thousands out there who are suffering without a diagnosis but ...

If you want to be referred to a specialist then I think it really depends on what your main symptoms - could be gastro, haemato or neurologist.

Unfortunately, unless you have a GP who is willing to listen and work with you - somewhat rare these days - I think you will just have to accept that your GP is ignorant and you probably need to take responsibility for your own treatment. B12 isn't toxic so there is plenty of room to manoeuvre ... and plenty of potential ways of supplementing that aren't injections (sublingual sprays and tabs, nasal sprays, skin patches). Flooding the gut with B12 sometimes helps as 1% of B12 is absorbed outside the ileum. Its also possible to source B12 ampoules from outside the UK and self inject.

[mikeg71 in reply to Gambit62]

Hi Gambit, I would love to read that report from the 60's. Do you have any idea what it's called/who authored it?

[Gambit62 Administrator in reply to mikeg71]

It is referenced in Martyn Hoopers book mentioned by Wedgewood. - Pernicious Anaemia - The forgotten disease - you can order it from amazon and think there is a link for the PAS website proper - you might find it worth joining PAS - there are also other good sites out there B12d.org, and B12deficiency.info

[wedgewood]

Dear zonn44,as you are new to P.A. you don't yet realise that the medical profession knows very little about it. Yes that is standard treatment---1 injection every 3 months. For some lucky patients that works, but only, I suspect if, they are diagnosed early enough. So many patents are diagnosed with depression and are given ant-depression tablets month after month. No research is done by the 'big boys' with the money i.e. pharmaceutical Industry as there as not enough profit to be made out of vitaminB12 as it cannot be patented(natural product). You will read on this site how badly P.A. pateints are served . I have been privately to a Haematologist, who dismissed me out of hand, saying that he wasn't interested in P.A. as it was so easily treated. (I had totally numb feet at the time) You will find that you have to treat yourself, if one injection every three months isn't enough to keep you feeling well. If that is the case, come back here and we will tell you how to get the ampoulles. (Can't get them in U K. without a prescription. You can get them from Germany) Hydroxocobalamin is the usual form of B12. If you have neurological symptoms Methycobalamin is good-it's one step nearer being absorbed than the Hydroxo.

You should also know that folate(B9) is also important in the process, or better still, a B complex supplement. Better than that a good diet paying special attention to the Bs. The best folate is Metafolin Much better than folic acid. It's unfortunately expensive.

So as to your question----there is unfortunately no specialist for Pernicious Anaemia.. we have to be glad that B12 deficiency was discovered. Not so very long ago we would have been on our way out(hence pernicious) There is some light, and its the Pernicious Anaemia Society, and God bless Martyn Hooper for founding it! He does so much for us, it's unbelieveable!! . All the very best to you!

[zonn44]

Thanks so much for the replies and information.

I live in Australia and believe I can buy the ampouls over the counter with no prescription .

I guess Learning to self inject into a muscle is in my immediate future.

Many Thanks

Zonn44

[illnesswhatillness]

The problem is getting it into the liver in the first place . If you have had nitrous oxide gas ( gas and air) at all through your life , it may have switched off your B12 synthesis and this can sometimes be permanently . If you have no or low intrinsic factor , you will not be able to absorb it through the gut . If your synthesis has been switched off by nitrous oxide your body will not be able to convert hydroxycobalamin which is an inactive form and so you will need Methylcobalamin , the active form of B12 which is already in a converted state . Unfortunately , predictably , Methylcobalamin is not available on the NHS even though it is available in the rest of Europe . Please sign my petition and pass it to as many as you can ; Medicines and Healthcare Products Regulatory Agency : License Methylcobalamin B12 for injection on the NHS

[Serendipity16 in reply to illnesswhatillness]

Hi I had 7 general anaesthetics in my life, could this have caused b12d? would nitrous have been involved? Do you hav refs for this and is there a way I can find out? I get hydroxy injections. Thanks

[Mark123]

Hi Zonn44

My husband has PA and was diagnosed just under 3 years ago. We learnt very early in his treatment that we had to take control and do it ourselves as our local GP thought the same way as your doctor. We purchase the ampoules over the counter at our local Chemist and they also have a system of recycling the syringes/canisters. We normally don't tell people we do the injections ourselves though just to stop any further questioning as they don't really understand the condition. You can also purchase the B12 ampoules online from places like Chemist Warehouse and you can buy up to 6 boxes (each box has 3 ampoules) at a time. We usually do this in winter as B12 is not supposed to reach over a certain temperature. Self injecting really isn't as bad as it sounds. You get used to it. We have found this forum invaluable and refer back to it anytime we need a hand with something. In the early days we were very new to it all but without everyones help on here my husband would not be as well as he is today. He went undiagnosed for many years and lost the feeling in his legs and hands (which was his spinal cord separating from his spine from being undiagnosed for so long). He had blood test after blood test but they still didn't pick up on what he had. He was at the stage of suicide at the time that he was finally diagnosed because his mind was not getting the messages it was supposed to be receiving. He had lost 10kg within a few weeks and his skin and hair had gone grey. Thank god a specialist (not our GP) picked up on his condition! We are still feeling our way through but we now know it is something that we can deal with. I say "we" because I feel we are both going through it together. If there is anything you need a hand with please let us know! From your fellow Aussies.