Folate deficiency

[Rosiehorn]

Hi everyone, I’m new to this page. I have had very low folate for the second time and I am currently taking supplements still. I am a young, healthy teacher who eats a very good diet eating lots of food with folate in it. I don’t drink alcohol and no idea why my folate is so low, apparently my b12 levels were ok. I’ve searched online and can’t seem to find much out about it.

[Sleepybunny]

Hi,

I hope you find the answers you need.

I've posted a lot of information below so I suggest you take a week or so to sift through it.

"apparently my b12 levels were ok."

Best advice I ever got was to always get access to or copies of test results and check for yourself.

I am aware of forum members who were told everything was normal/no action and they found abnormal and borderline results when they got copies/access.

Accessing Health Records (England)

patients-association.org.uk...

Some people access test results and medical records with NHS app.

nhs.uk/nhs-app/nhs-app-help...

It's possible to have severe B12 deficiency with serum B12 levels that are well within normal range. I speak from personal experience.

UK guidelines indicate that people with the symptoms of B12 deficiency should be treated even if serum B12 is within normal range.

Link about "What to do next" if B12 deficiency suspected or recently diagnosed

b12deficiency.info/what-to-...

UK B12 documents

BSH Cobalamin and Folate Guidelines

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

pernicious-anaemia-society....

Summary of BSH Cobalamin and Folate Guidelines

pernicious-anaemia-society....

Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.

stichtingb12tekort.nl/engli...

BNF Hydroxocobalamin

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

NICE CKS B12 deficiency and folate deficiency

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

Vital that if a person is receiving treatment for folate deficiency that any co-existing B12 deficiency should be treated at the same time.

Treating a folate deficiency without treating a co-existing B12 deficiency can lead to neurological problems.

Coeliac disease

Guidelines below suggest that anyone with unexplained B12, folate or iron deficiency should be tested for coeliac.

NICE guidelines Coeliac Disease

nice.org.uk/guidance/ng20/c...

More info on Coeliac UK website

coeliac.org.uk/home/

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Two useful B12 books (both mention folate deficiency)

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).

BNF treatment info in book is out of date. See BNF hydroxocobalamin link in this reply.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)

Very comprehensive with lots of case studies.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

Testing for PA

pernicious-anaemia-society....

Misconceptions about B12 deficiency

Blog post that mentions misconceptions about B12 deficiency

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

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.

[Sleepybunny]

Local Guidelines

Each CCG/Health Board in UK is likely to have its own local guidelines on treating B12 deficiency. Worth tracking down local guidelines and comparing them with BNF, BSH and NICE CKS links.

Should be local guidelines on treating folate deficiency as well.

Worth knowing what you're up against as some local guidelines in UK are unhelpful.

See blog post below which discusses a UK area which has a poor reputation on this forum for how B12 deficiency is managed.

b12deficiency.info/blog/202...

To find local guidelines for your area....

1) Search forum posts using term "local guidelines" as some have been posted on this forum.

2) Try an internet search using "name of CCG/Health Board B12 deficiency guidelines"

3) Submit a FOI request to CCG/Health Board requesting a link to and/or copy of local guidelines on B12 deficiency

If you do manage to find the local guidelines for your area, keep an eye on them as they get reviewed every few years and aren't always changed for the better...

Links below are to forum threads where I left detailed replies with lots of B12 info which you may find useful eg causes and symptoms of B12 deficiency, more B12 books, B12 websites, B12 articles and a few hints on dealing with unhelpful GPs.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

I am not medically trained.

[nellie237]

Hi Rosiehorn,

You're right, there isn't much info re low folate out there. The only info I have been able to glean from researching is...............you don't want levels too low, or too high, and the odd mention of heart health.

I recently got online access to my blood results, and found that on the few occasions it was tested, I was either under range & prescribed folic acid for a couple of months, or I was right at the bottom of the range and it was ignored.

I now supplement with a B complex every other day, which is working for me.

I am hypothyroid & coeliac, not PA.