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B12

Milley2 profile image
18 Replies

Quick question

Daily or alternate day b12

Is it advisable to take methyfolate along side the days you inject or a certain amount that week

My folate is 17.6 without supplement of it

I do not want to take folic acid as it made me quite sick admit I took big dose silly Facebook

But even on a small dose I was poorly ?

Thoughts or advise please

Been looking at the meth folate version

Along side folate foods

As I inject frequent the 2 work together ?

Correct ?

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Milley2 profile image
Milley2
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18 Replies
Gambit62 profile image
Gambit62Administrator

You don't seem to have a folate deficiency so not need to supplement more than a daily amount that would be in a multivitamin - or if you can get what you need from your diet - its the best source for folate.

Whilst it is common for people to have both folate and B12 absorption problems there isn't any need to supplement unless you are deficient or have an absorption problem.

Some people don't respond well to methylfolate, so no guarantee that it would work well for you.

As you don't appear to be folate deficient probably best to avoid supplements if you are having a reaction to them - you should certainly avoid the sort of doses that are used to treat a deficiency unless you are deficient.

Milley2 profile image
Milley2 in reply toGambit62

I was defiency in the beginning level was 3

So was given folic acid

I had absirbtion issue hpylori

That’s fine now but has damaged my tummy no ulcer just mild sores

fbirder profile image
fbirder

As your folate id quite high there should be no need to take any supplement. Keep eating folate-rich foods (leafy green veg, nuts, seeds and pulses) and it may stay up there.

A very few people find that methylfolate works better than folic acid.

Injecting B12 doesn't increase the body's demand for folate.

Milley2 profile image
Milley2 in reply tofbirder

I thought it did

I assumed the two work hand in hand. I’m in dsily b12 injections as bern SO poorly then I’ll go alternate ive absorption issue fron the h pylori

Was always under the impression injections start to use up the folate demand

I can’t eat that well as was so poorly fron ppi meds

So lost over a stone and my appetite hasn’t returned

Does methyl folate not agree with people then ?

If so what issues is there with it ?

fbirder profile image
fbirder in reply toMilley2

Yes, the two are involved in one reaction (the conversion of homocysteine (hCys) to methionine (met). The body runs that reaction at the speed it needs to. As long as it has enough B12 and enough folate it can run at full speed. It will not run any faster if it has more of one. Indeed, it cannot as it runs out of hCys.

You might equally say that taking folate supplements means you need more B12. Or that taking zinc supplements (it's also involved in that reaction) means you need more of both.

In the same way as both petrol and oil are required for my car to work. My old car had an oil leak, so it needed topping up with oil every week. But, no matter how much oil I put in, it never affected the amount of petrol I needed.

Or, it's like when I used to make cheese sandwiches for the cricket team. I needed to make 30 sandwiches for tea. So I would get 60 slices of bread and 30 slices of cheese. One day I accidentally brought 80 slices of bread. Does that mean I have to go out and buy another 10 slices of cheese to make another 10 sandwiches that I don't want? No. I take the extra bread home.

Injecting B12 doesn't increase your body's need for folate, zinc, sulfur, nitrogen, oxygen, carbon, NAD, FAD, ATP, phosphorus, or any of the dozens of other things involved in that one reaction.

fbirder profile image
fbirder in reply toMilley2

What are the issues with methylfolate? A very few people have problems with methylating agents. It can give unpleasant side effects.

Milley2 profile image
Milley2 in reply tofbirder

What are those side effects please

Milley2 profile image
Milley2 in reply tofbirder

Folic acid made me sick

Was also in ppi meds

So as you know ppi reduces tummy acid folic acid was going in and I was heaving sick

Even before ppi also

Made me heave on a 400 ug pill

fbirder profile image
fbirder in reply toMilley2

In that case, spinach, cornflakes, lentils, chickpeas, chia seeds, are things you should think about eating more of.

Milley2 profile image
Milley2 in reply tofbirder

Also with symtoms

When you inject is it normal for symtoms to increase ?

Like go up and down through out the day

More pains etc or ear ringing mine went down a bit earlier now it’s back again a bit stronger earlier I thought healing then now I’m thinking what’s going on here it’s stronger again or am I using to much b12 and worsening the effects ?

CupCake5 profile image
CupCake5 in reply tofbirder

fbirder sorry but I'm confused now...

I thought I had read on here that that’s exactly what happens, as you inject more B12 it then uses more folate & ferritin in order to process the B12 which can deplete folate/ferritin levels below the range & that folate & ferritin should be checked after the loading doses.

On that basis I asked for mine to be checked after the loading doses & both ferritin & folate were both below range so I was prescribed both... so why would that be if you’re saying it’s not the B12 increasing the demand?

I’m trying really hard to understand as much as I can about all of this but I have to admit I’m finding it quite tricky! That’s been made all the more difficult as my GP, having spoken to a neurologist, is still adamant that the guidelines are unclear so she is sticking to insisting that I’m not anaemic, just deficient & although she has offered to re-do the loading doses & then allow me two monthly thereafter rather than three monthly, she will not agree to the initial ongoing alternate day injections for my neurological symptoms... I don’t understand why! I have written to her & listed my symptoms & quoted NICE guidelines/BNF information but because it all comes under the heading of pernicious anaemia she will not budge! I’ve tried arguing that everything relating to B12 deficiency ends up being directed to the guidelines for PA but to no avail. She has suggested referring me for nerve conduction tests though.

Cherylclaire profile image
CherylclaireForum Support in reply toCupCake5

Nerve conduction tests - that's a good thing.

If the electric nerve tests, this will only test the main nerves though. I had hands and feet tested and nothing untoward was found. For minor nerves, the test involves a biopsy I think - and is quite painful. I didn't have this done because neuropathy was not ever a really big issue for me luckily. I know some people here have had this test, when nothing showed up from major nerves.

I never really understood why B12 treatment, where nerve repair is required, is often given so little time to prove its efficacy, when long-term nerve damage repair is generally such a very slow process.

The only place where numbness and tingling now occurs for me is outer shins. When really overdoing it, feet get floppy, causing tripping if not careful. If I get cuts in this outer shin area they take forever to heal even though I can't feel them. This is a very rare occurrence now - I am getting better and I am more aware of my limits.

I was also lucky in that my GP restarted my loading dose (at 2 injections per week) when my initial B12 deficiency (and folate, ferritin and vitamin D) had been treated but my symptoms were still worsening. MMA was tested and found to be still raised, giving me a diagnosis of Functional B12 deficiency confirmed by the lab. She suspected this to be the case because she had had one other patient with this condition 10 years previously. So, unusual but possible. I had injections at this frequency for 6 months, and was doing okay- until I deteriorated again. I was sent to many consultants; much elimination but no real answers for me.

I now self inject -after starting with every other day injections, which I believe is what I needed, it took over 2 years for me to improve to a stage where I could reduce this to every three days. I have recently tried reducing this to once a week -with little success so far. M R Turner and K Talbot (2009) suggest treating Functional B12 deficiency with frequent injections- and this is all the research on treatment that I can find.

I do not think it is easy for a GP to request an MMA test - my GP had request returned three times before she got a major hospital lab to agree. Most local hospitals perhaps not able or equipped for this. However, haematologists tested my MMA 4 times - always still raised. Finally came within range last year - tested for the 6th time by DNA consultants.

Still it might be worth having this test too perhaps, as if high would indicate that a problem still exists, despite receiving B12 injections at a conventional frequency ?

Of course if found to be "normal", this could reinforce your GP's position.

Otherwise, you might have to wait for the current PAS research to be completed which is investigating why some people with PA need more injections than others. I'm hoping that these results will also hold true for those of us who have B12 deficiency but do not have Pernicious Anaemia diagnoses. If not, we remain in limbo !

Your GP is probably just afraid of "overdosing" you - although my GP requested that I have 2 injections a week indefinitely, there was some resistance from nurses at the practice I remember. One of them told me she'd Googled "B12 and toxicity" - and was fine about it after that. She will have found, as I did, that B12 is used in very high doses as an anti-toxin !

Has your GP ever told you what she believes is the cause of your deficiency ? Perhaps try this approach. Although right now, GPs are not really that approachable, are they ?

Milley2 profile image
Milley2 in reply toCherylclaire

Do you take anything else ?

Milley2 profile image
Milley2 in reply toCherylclaire

Along side b12 co factors etc

Cherylclaire profile image
CherylclaireForum Support in reply toMilley2

Yes:D3 tablets on prescription (for osteoporosis of the spine)

K2 spray (although GP thinks it's unnecessary)

Daily multivitamin and mineral

- which must now be working for me, as I've just had the best blood results I've ever had since this started 5 years ago.

It took a couple of years (and supplementing on top of multivit where necessary) to get folate and ferritin to get to healthy levels and stay there. This is why these are still regularly tested.

Milley2 profile image
Milley2 in reply toCherylclaire

Which multi vit

Cherylclaire profile image
CherylclaireForum Support in reply toMilley2

Currently trying Immunace Original; seems to be working for me.

fbirder profile image
fbirder in reply toCupCake5

"I thought I had read on here that that’s exactly what happens, as you inject more B12 it then uses more folate & ferritin in order to process the B12 which can deplete folate/ferritin levels below the range & that folate & ferritin should be checked after the loading doses."

When you have loading doses the body will use up more folate and iron. Not to 'process the B12' but because some cell production mechanisms go into temporary overdrive. But the body has fairly large reserves of folate and iron, so any drop will be small and unlikely to cause problems. Once the loading doses are complete reserves should build up again.

Assuming that the body can absorb folate and iron.

If you have PA then your body is likely to find it more difficult to absorb folate and iron from food. That's why it's good to have your levels checked.

If you've been prescribed 5 mg of folic acid then you shouldn't take it for more than a month or two. Very high doses of folic acid may be harmful. ncbi.nlm.nih.gov/pmc/articl...

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