What is the reason that people who have had severe long term B12 deficiency need to take injections so regularly for the rest of their life?

[VellBlue]

I take Hydroxocobalamin injections every four days to avoid B12 deficiency symptoms. This works well for me, but is there any research as to why those of us who have had damaging long term deficiency need to take such regular injections - i.e. be swimming in B12 to function.

Like most of you, I have a sceptical and difficult doctor.

[Nackapan]

PAS are reserching this . Just keep well

[VellBlue in reply to Nackapan]

Good to know.

[fbirder]

Nobody knows.

At the moment the PAS are helping with a study to see if there is any difference between - normal people; people with PA who are good on 3-monthly injections; people with PA who need more frequent injections.

They announced some preliminary results saying that there was a difference in the bacterial profile of those who needed frequent jabs and the other two groups. But that was nearly 19 months ago. We have heard nothing since. pernicious-anaemia-society....

Try giving your doctor a copy of this - bmj.com/content/369/bmj.m13...

It's a response to an article in the BMJ from a retired GP. He has PA and gets a return of symptoms in 5-6 weeks. So he self-injects.

[VellBlue in reply to fbirder]

Thanks for the links and interesting that they are finding a different bacterial profile...

That letter is great. It definitely makes sense to find out whether is okay to inject subcutaneously.

[Nackapan in reply to fbirder]

Interesting the comment by John p Warren on sc injections. The German box of b12 has it written on.

Suitable for IM and Sc.

I also thought I'd read somewhere it initially was given sc.

It changed as the thought was it wouks stag in the system longer IM.

Btw I've not found this . That doesn't make sense but ive tried.

All I personally have noticed the IM one goes into the system alot quicker.

[Lotterypip]

Pernicious anemic, deficiency in the body's ability to absorb B12 lack of intrinsic factor. B12 injections are water soluble in other words the body pee away what is not needed. But Pernicious anemic can be deliberating in your mind and your body. It amazes me how B12 injections are not used more offen, especially with the elderly. Some call it the Gold Shot.

[VellBlue in reply to Lotterypip]

Okay.

Am not sure my B12 deficiency is strictly "Pernicious Anemia" as I don't think I have an inability to absorb it and have not had my levels of "intrinct factor" investigated. Does Pernicious Anemia just apply to that, or all kinds of B12 deficiencies?

[Nackapan in reply to VellBlue]

We all as we get older we absorb less nutrients from our food. If on medications some inhibit absorbtion. PA is when you cant absorb B12 at all as you lack intrinsic factor in the gut to process it. It's an auto immune condition.

The intrinsic body antybody test shows up about 50% of those that have PA.

Other things are ruled out.

There is a good explanation on PAS I formation. Or on Tracey Wiley b12

If you are not a vegan not on medications not got a worm infestation. Not got crohns . The list goes on.

If you cannot absorb b12 tablets. The most likely cause is PA

If you are deficient and ill and tablets do not work. Nothing else found. You need b12 injections for life.

At the frequency that keeps you as well as possible.

[VellBlue in reply to Nackapan]

Yeah, pretty sure mine is not PA. Don't think I have an absorption problem.

I know this is a PA forum, but long term B12 deficiency causes the same problems I guess.

I have a history of fluoroquinolone antibiotics damaging my system and they are known to strip out B12. (However I didn't know about this until much later).

Now if I don't take an injection of B12 every four days I will get headachey, exhausted and pins and needles and then that will progress quite rapidly to cognitive problems, weakness and then being mentally not good as well.

[fbirder in reply to VellBlue]

Pernicious anaemia is a specific, autoimmune, condition that totally prevents absorption of B12. There are other things that can inhibit the absorption of B12. There is no easy way to tell one from the other at the moment.

[VellBlue in reply to fbirder]

Yeah, I don't think my issue is PA. Have taken antibiotics which have made me very ill and are known to strip out B12.

But I guess long term deficiency causes the same damage to the system whatever the cause of the deficiency. The symptoms people describe on here are the same as mine.

[Nackapan in reply to VellBlue]

Yes you must have an absorbtion problem . That's why you need injections. If you could absorb 12 tablets would do the job.

Yes you are right whatever the reason if you lack b12 the symptoms are the same.