Tablets

[Roses46]

Hi My friend has some spare B12 Methylcobalamin tablets, 1500mcg that she's offered me - is this a recommended dose? I've been having the injections (10 weekly for past two lots, 3 months prior to that) but have some Neuro symptoms (pains in feet & stiff, painful fingers) so considering supplimenting, to see if it makes any difference. Ive not been brave enough to go down the self injecting route yet, still thinking about that. Thanks

[Nackapan]

Have you had that type of b12 yet?

If you can absorb it some say it dosent suit them. If you look through recent posts.

You can only absorb so much in one hit passively or otherwise so it's not the dose i personally would be concerned about it's the type. All elementary if you csnt absorb them??

I self inject subcutaneously for

reference as I coukdnr face IM either.

[Roses46 in reply to Nackapan]

I havent, no. I'll give it a try though. GP says there's nothing in notes about my diagnosis so I had intrinsic factor test 8th july, as well as bloods for my stuff fingers (I got him to confirm I wouldn't be taken off injections if it was negative as he knew they are unreliable tests). I had to chase the results myself and all cane back 'no action'. So im now having to keep ringing to get a gp apt as all the apts are booked up for 3 weeks! Wouldve been nice if the gp had followed this up himself with me

[Nackapan in reply to Roses46]

Yes. I had bloods . Got the same response. Wanted more guidance with what itin to take or not to take! Continuity with doctors saves so much time

[fbirder]

First step is to contact your GP. Ask why you're not being treated as recommended in the British National Formulary (BNF - your doc will have an online copy). bnf.nice.org.uk/drug/hydrox...

Pernicious anaemia and other macrocytic anaemias with neurological involvement

By intramuscular injection

For Adult

Initially 1 mg once daily on alternate days until no further improvement, then 1 mg every 2 months.

Also ask for a recommendation to see a neurologist.

If you have PA then the tablets will make no difference as they will not be absorbed. If you do not then the tablets might help. Either way they cannot harm (well, there's a small chance of side effects like anxiety and irritability). So you may as well try them.

[Roses46 in reply to fbirder]

Thanks for this, I'm going to ask about this when I can get to speak to him (see prev reply) but i did ask to have injections more often and about loading doses and he replied no because basically I'd be overdosing as the liver stores some! I couldnt remember all the advice about that at the time and also felt it wouldn't get me anywhere so didn't bother arguing. I have the details of the agency who deal with feedback for the gp so want to write to them but funding the time, with all the overwhelming info, is hard, plus I'm worried about then getting obstructions to sorting my treatment out.

[fbirder in reply to Roses46]

Ask him how much B12 is an 'overdose'. Then print this out, wrap it around a brick, and hit him over the head with it - stichtingb12tekort.nl/weten...

[Roses46 in reply to fbirder]

Lol thanks, I'll print it out. Then find a brick 😄

[Nackapan]

Yes so 10 weekly not often enough. Push for more frequent Injections as suggested.

Meanwhile hope the supplements suit you and help you.

[Nackapan]

So annoying . So many being under treated.

[Nackapan]

I didnr get that we should be able to store b12 in the liver.

I was told that.

However I cant explain but others can.

Basically even if you can store a little and your body releases it from your liver you cant use it for the same reasons you cant from food. The process diesnt work anymore. So toh can only use it when I jected directly into tour bloodstream. I think that is correct .

I'm sure if not someone that understands it better will explain.

That's the understanding I got

[Nackapan in reply to Nackapan]

That would tie in with stores bring depleted to get low in the first place even although lots going in. ??

[fbirder in reply to Nackapan]

In normal people (who can make Intrinsic Factor) B12 in food is bound to IF in the duodenum. The B12-IF passes down the small intestine to the ileum, where special cells grab hold of the IF and carry it (along with the B12) inside themselves. Once it's in those cells the IF is split from the B12 which is then pushed into the blood.

Some of this B12 will be stored in the liver (attached to a different protein - HC). Some of this HC-B12 is removed from the liver, into the bile, where it passes into the duodenum. Enzymes there remove the HC, leaving the B12 free to bind to any IF present. The IF-B12 then gets absorbed as before.

The B12 goes round and around this enterohepatic (gut-liver) cycle, with just tiny amounts lost each cycle (which is why you need 2.4 mcg a day, to make up for the losses).

If you have PA then you do not make IF. All of the B12 excreted in the bile is lost forever. The liver might store it, but you cannot make use of any of it.

[Nackapan in reply to fbirder]

Is this the crebb cycle?

[fbirder in reply to Nackapan]

No, the Krebb's Cycle (or the citric acid cycle, or the tricarboxylic acid cycle, depending on when you learned it) is a cycle that takes place inside the cell, converting glucose to carbon dioxide, water and energy.

[Nackapan in reply to fbirder]

Thank you. It just popped into my recovering brain lol. Puts that 'to bed'

No idea when or why I've read that in the past !

[Nackapan in reply to fbirder]

Thank you . I've written it out on paper .

[Roses46 in reply to fbirder]

Thanks this is really informative. I'll print it out

[Roses46 in reply to fbirder]

Well, just an update. My IF test was negative so "you've not got PA", the DR said (a different DR). Tried to discuss it all and, though she was very nice and willing to listen, she asked if I'd tried supplements and that B12 treatment is likely to be under review as times have moved on and research is more advanced. They're finding that a lot of people on injections don't need them.... I don't feel qualified enough to have argued so, not sure where this leaves me, moving forward. Im being referred to muscular/skeletal for the hand stiffness as the arthritis tests were negative. She added that I've not been tested for IF previously so she doesnt know why the DR previously said I needed injections for life. I didnt think to suggest that perhaps he'd found that i hadn't been absorbing the tablets that I was previously on.....