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B12 and folate: dietary folate vs folate supplements? How much do you need?

RoMello profile image
5 Replies

I self inject B12 2 or 3 times a week and know that you need folate levels to be 'adequate' to use it properly.

It's a few years since I had the intermittent pointless blood test that GPS ask for to check (inj supplemented) B12 levels and iron, vit D and folate by the by. All was supposedly 'normal' except vit D.

I now no longer get gp 8weekly inj and fessed up recently to the (horrified!) pharmacist meds review that I wasn't willing to get significantly iller with neurological symptoms to prove oral supplementation doesn't work and lots of arguments to get injection reinstated. She reluctantly agreed she could see why I chose this. So, I won't be getting blood tests done any time soon for folate etc.

I now use a vit D spray which really helps my winter energy levels.

I notice a lot of people on here taking folate supplements and asking about doses and levels, with or without blood levels info.

I eat (and grow) lots of folate rich green veg, and try to eat them 3 or more meals a week.

Does anyone know what an adequate dietary portion and frequency needs to be not to need to take (extra expense) supplements?

I've searched this site and can't find any information.

I'm sure someone here is bound to know?... Tnx

(Tag folate)

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RoMello
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5 Replies
Nackapan profile image
Nackapan

Folate is best from foodUp yo to 400mcg folic acid as a maintenance dose is recommended by the NHS for all women of child bearing age.

It's usually the dose on a basic multivit I take.

So even if you not in that group 200-400mcg seems an average maintenence dose.

I personally don't need 400mcg a day but do have allotment veg and was never deficient.

Whereas my daughter has more greens than ne but needs 400mcg folic acid daily

She obviously can't absorb enough from food. So it varies

You can still request vit d iron levels ect via your gp.

I do by letter. An electronic form produced or paper.

I'm glad I get checked as do go by bloods

RoMello profile image
RoMello in reply toNackapan

Thank you for this useful info.I might try out modest supplementing my folate for a few weeks to see if it makes any difference...

Sleepybunny profile image
Sleepybunny

Hi,

I was very concerned to read your comment "I now no longer get gp 8weekly inj ".

Do you mind me asking what reason your GP surgery gave for stopping your B12 injections?

I'm glad that you have the option to treat yourself.

It may be worth having one more go to get injections reinstated by GP surgery.

I am not medically trained just someone who suffered for years from undiagnosed B12 deficiency.

Have a look at the links below.

If you have a confirmed diagnosis of PA or suspect you have PA, might be worth joining and talking to PAS who can offer support and pass on useful info.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS website has lots of useful leaflets/articles including "Treatment is for Life" and "Treatment changed – What can you do?"

pernicious-anaemia-society....

There is also a PAS page for health professionals that your GP might want to read.

pernicious-anaemia-society....

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Link above has letter templates to help people write letters to GP.

Point 1 is about under treatment of B12 deficiency with neuro symptoms.

Point 5 is about being symptomatic for B12 deficiency with an in range serum B12 result.

Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.

Best to keep letters as brief, to the point and polite as possible. It's harder to ignore a letter in my opinion.

Keep copies of any letters sent or received.

CAB NHS Complaints

citizensadvice.org.uk/healt...

MPs

Local MP and devolved representatives may be worth talking to.

Going to the Press/other media...

Works for some although likely to permanently affect GP/patient relationship

Newspaper article about patient struggling to get B12 treatment in Scotland

eveningtelegraph.co.uk/fp/i...

And a positive follow up story

eveningtelegraph.co.uk/fp/b...

PAS news story about contacting NHS England about B12 treatment problems in pandemic

pernicious-anaemia-society....

PAS news story about BSH guidance on B12 treatment during Covid-19 being changed

pernicious-anaemia-society....

Article has 104 comments underneath.

Blog post from B12 Deficiency Info about help if B12 injections are stopped

b12deficiency.info/are-your...

Tracy Witty of B12 Deficiency Info has been campaigning to get injectable B12 available over the counter in UK.

Link to petition on Change.org

change.org/p/dr-june-raine-...?

B12 Deficiency Info blog posts about petitions to get injectable B12 available OTC in UK.

b12deficiency.info/category...

UK B12 documents

BSH Cobalamin and Folate Guidelines (whole document)

b-s-h.org.uk/guidelines/gui...

Summary of BSH Cobalamin and Folate Guidelines

pernicious-anaemia-society....

BNF Hydroxocobalamin

bnf.nice.org.uk/drug/hydrox...

NICE CKS B12 deficiency and Folate deficiency

cks.nice.org.uk/topics/anae...

Each CCG (Clinical Commissioning Board/Health Board/NHS hospital trust in UK is likely to have its own local guidelines on treatment/diagnosis of B12 deficiency. Might be worth tracking down the local guidelines for your area of UK and comparing the info in them with BNF, BSH and NICE CKS links.

Some local guidelines have been posted on forum so try a search of forum posts using terms "local guidelines" or try an internet search using "name of CCG/Health Board B12 deficiency guidelines" or submit a FOI (Freedom of Information) request to CCG/Health board asking for access to or a copy of local B12 deficiency guidelines.

Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.

Some links may have details that could be upsetting.

Some of the info will be specific to UK.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

RoMello profile image
RoMello in reply toSleepybunny

Thank you for your concern! I have been a PAS member for a few years now, and greatly appreciated being able to call for advice in the past, before I decided to SI.

I feel bad that by not fighting for reinstatement of injections, it lends weight to the lie the nurses believe that lots of people who don't really need injections will stop wasting appointments. I was quite angry when I heard this trotted out, along with 'the liver stores it for 6 months, and most people have a placebo effect...'

I remonstrated that I didn't think not falling over on getting up, two days after an injection was placebo but neurological improvement. She said I was in a tiny minority of patients in her experience and that she still thought there was a likely placebo effect for me!

And that if I took oral supplements I could have another blood test after 6 months and it would show if I wasn't absorbing it by mouth. I said hell would freeze over first before I would do that to myself to make myself iller, after years of finding every which way to improve and it was no surprise that people resorted to self injection and were basically driven underground. I left in stoney silence.

I was already doing SI and only kept up the 8-weekly injections at the surgery to ensure I was 'on the record'. So I sadly decided I didn't need the stress of a fight. The pandemic, isolation etc, was already testing me enough!

I am pleased it is now on my record that I self inject, after my annual drugs review with the pharmacist. She actually had more idea of what I was talking about than any GP or nurse I have ever spoken to as to why I resorted to SI. She agreed that falling over, sore skin and muscle twitches were indeed neurological, and that a GP may send me for tests if I reported this. I pointed out that was pointless because my blood levels would be high, and we would waste everyone's time so I would just continue as I am. She said it would be noted as mitigated harm though not their preferred course of action. I was pleased she did check where I obtained my B12 and syringes and that I used a sharps bin.

So. It does seem that it will lend weight to the myths believed by misinformed GPS and nurses.

But, I am satisfied I am managing my condition as well as possible, despite everything.

Thank goodness for the information and understanding from this wonderful community. You are all splendid caring human beings!

Sleepybunny profile image
Sleepybunny

"it lends weight to the lie the nurses believe that lots of people who don't really need injections will stop wasting appointments. I was quite angry when I heard this trotted out, along with 'the liver stores it for 6 months, and most people have a placebo effect...'"

Did they say all those things to you?

I would find it difficult to restrain myself verbally.

See links below in case you ever get any more of that rubbish trotted out.

B12 article from Mayo Clinic in US

ncbi.nlm.nih.gov/pmc/articl...

Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.

Misconceptions about a B12 deficiency

(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)

stichtingb12tekort.nl/engli...

Blog post that mentions misconceptions about B12 deficiency

b12deficiency.info/a-b12-se...

BNF treatment has changed since this blog post was written.

Diagnosis and Treatment Pitfalls(From B12 Institute in Netherlands - units, ref ranges, treatment patterns may vary from UK)

b12-institute.nl/en/diagnos...

Sadly, it's not just nurses, it's GPs and specialists as well. I have a letter from a haematologist who mentions a placebo effect to B12 injections.

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