Quick question........

[Ladystardust]

For those self injecting daily....just wondering what sort of dose you take?

[deniseinmilden]

I use 1.5 mg in 1 ml hydroxocobalamin ampoules daily.

I think most people use 1mg in 1 ml. Some people divide the dose and others occasionally use an extra one if required. I buy Pascoe brand ones which are "Depot" so should be slow release. Whether this works or not, I'm not sure but it seems to for me as 1 jab each morning seems to do the trick!

[fbirder in reply to deniseinmilden]

I don't think you can get a slow release solution for injection.

[deniseinmilden in reply to fbirder]

?

I don't understand why you have posted this comment on my reply: it doesn't seem like you are trying to be helpful and you don't appear to be asking for information to increase your knowledge, where it is lacking.

It's hard to reply without seeming to be argumentative - it is a fact there are lots of injectable slow release solutions, to treat a wide range of issues, including the B12 supplement one I use - and to not reply may seem that I am being less than friendly, which isn't so.

You have mostly been fair and positive towards my comments in the past - is there now something that you don't like or am I getting the wrong impression?

Hoping I'm just over worrying, best wishes, Denise

[PAS-admin Partner in reply to deniseinmilden]

It's not really slow release, like in slow release capsules or something, nor is it 'fast'. It's called a depot because if you inject it IM a small depot is formed in the muscle and it doesn't all go into the blood at once. In theory that is. If that actually works like that is the question and will probably depend on how you inject. In principle all B12 ampoules are sort of depot. But yes, it's says depot and it should sort of from one when injecting IM. Don't know about SC.

[deniseinmilden in reply to PAS-admin]

Thank you. Very interesting.

My understanding was:

Some "Depot" solutions are genuinely slow release with an active ingredient half-life of many days and are designed to provide an effective degree of treatment over several weeks.

Other products, designed for deep IM use and including some antibiotics, are in oil suspension, rather than solution, to limit their uptake from the muscle into the blood, as you describe. These are usually labelled as "Long Acting" and provide an effective level of drug supply for a few days.

Following on from this...

It strikes me that there must be a metabolism mechanism or immune system response or something similar that is going on the bodies of some of us which actively breaks down or removes the B12 which we are injecting, for some of us to use up so much so quickly.

For people like me, Gambit and others it is not just about a lack of absorption and probably not even a problem of metabolism at cellular level - there seems to be something else which is wrong, hence why we crash so quickly if we do not get frequent top-ups.

Gambit and others have kindly supplied some links to papers about this and I wish I could find more information on this!

[PAS-admin Partner in reply to deniseinmilden]

The text you gave is in general, and does not apply to B12 as nothing is added in the injection to make it slow. It's the same B12 as any other ampoule.

The B12 you are injecting does not get broken down or used up quickly. Then your blood level after injecting would still be low. It gets in the blood. The problem lies beyond, what your body does with it. One cause is not enough transcobalamin, the transport-protein, so you need to inject more to get in transported to where it's needed. Another, that is being researched now: It is not known how cobalamin enters the mitochondria in humans. Both active diffusion and passive diffusion have been suggested. There could be a problem in some people that the diffusion does not work completely and they need to inject much more to get some B12 inside. That is being researched now. To get into the cells B12 has to climb three 'walls' that are genetically determined. If there's a 'mistake' in one (or more) of them, you need to inject a lot to get enough in.

That's where the problem lies, it's (pretty much) never in getting it in the blood, it's what happens after...

[deniseinmilden in reply to PAS-admin]

Thank you very much!

As you saw in my first reply I was sceptical about some of the B12 ampoules being "Depot" as I thought B12 was a standard molecule.

As I didn't know for sure I remained open minded about it - I believe sometimes absorption is affected by molecular mirro-imagery for example.

It is probably the amount that I take that keeps me going for just over 24 hrs, whereas the 1 mg ones didn't.

Thank you for the extra information too. It is good to know they are still doing research.

If it is just genetic, do they know why we can have basic deficiency symptoms for many years but still be fairly OK without treatment and then suddenly not be able to survive without huge amounts?

Am I missing something vital or surely there must be some increase in breakdown or something else going on; otherwise taking very high amounts wouldn't be sustainable - you would continually increase the ratio of B12 to other components until your blood was almost all B12.

That must be the theory behind the BCSH guidelines - when your levels become high enough on EOD jabs, the neurological symptoms stop and then you can reduce the injection rate to 8 weekly because depletion doesn't happen.

It seems like I - and others - can't ever keep their levels high - hence why I am wondering if there is something else, which maybe as yet undiscovered?

I am really fed up with it being so hard to just survive with needing to take supplements all the time - if I go more than a couple of hours without something I need I crash again.

I have so many questions without answers, I very much appreciate the time and thought you have given me in your replies.

Thank you! Denise

[fbirder in reply to deniseinmilden]

If it is just genetic, do they know why we can have basic deficiency symptoms for many years...

As we learn more about genetics it becomes clear that it's much more complicated that first thought. Epigenetics is the study of how gene expression can be switched on/off by environmental factors and physiological changes. So you can have a genetic tendency for something that hangs about doing nothing until the right thing triggers it.

taking very high amounts wouldn't be sustainable - you would continually increase the ratio of B12 to other components until your blood was almost all B12.

The rate at which things are eliminated from the body normally depends on how much of it there is in the body. The more there is the faster it gets thrown out - like a holey bucket leaking faster as the water level increases.

But B12 is more like reaching the top of the bucket - water that gets poured in then just flows over the top.

B12 elimination is like that. All the B12 in the blood gets filtered out in the kidneys - which then reabsorb it. But the reabsorption process can only go at a set maximum rate - so only a certain amount can get reabsorbed.

[deniseinmilden in reply to fbirder]

Thank you very much - great analogies and even I can get my head round it with them! I so hate not being able to think properly anymore. I was never a rocket scientist type but I've lost part of me with the rotten brain damage stuff. It's better than it was last year but....!

Thank you!

Denise

[deniseinmilden in reply to PAS-admin]

When reordering my ampoules this time I noticed that Rotexmedica do both plain and Depot ampoules, with the plan ones being cheaper for otherwise the same thing.

Is there an explanation for this?

[PAS-admin Partner in reply to deniseinmilden]

The cheaper one is cyano, not hydroxo. There's the difference.

[deniseinmilden in reply to PAS-admin]

Ah - big explanation!!

Thank you very much. It's a bit unsettling as at one time I would have seen this and not made the other mistakes I've made too. I thought / hoped my brain damage had repaired better than that. I will recalculate my abilities and readjust my expectations.

Sorry for being dense and thank you!

[PAS-admin Partner in reply to deniseinmilden]

No problem, we all know the problem..

[ndodge]

Hi Ladystardust,

I SI (IM) 800mcgs which is 200mcgs shy of a 1 mg dose (1000mcgs) of methylcobalamin every other day. I would like to inject less frequently but right now I am still getting pins and needles in my arms and hands and the tinnitus which gets quiet comes screaming back if I don't inject every other day. So that's my story!

You asked a good question and I hope more people reply- it would give a clearer picture how much B12 people actually need if they have PA or a chronic B12 deficiency.

Thank you

[Ladystardust]

I was wondering if there might be an "average" amount and how that would tally with the NHS guidelines. I was on 500 hydroxo every day as suggested by Hugo at b12d.org, he thought the 1000 I had been taking was too much and that the frequency was more important than dosage. After 4 days I had several bouts of pins and needles, tinnitus and sleep issues reappeared so I went back up to 1000 again. I have lately had 1500 on 2 occasions I knew I was going to be super busy. I suppose long story short I am still experimenting what works for me. I have methyl coming from b12d.org soon, so that will probably lead to further dose jiggling til I find what works.

[PAS-admin Partner in reply to Ladystardust]

The average for injecting would be 1000 I guess as most people do fine on that.

[Ladystardust]

I was just curious how much more people were taking than the NHS suggest.