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Folate and Active B12

Claire67 profile image
9 Replies

Good evening I have just received a test back saying my Folate level is very low 6.84

Ref range was - 8.7 - 62.62

Can someone please advise, do I take the 5mg(5000mg) a day first and how long should I do this for. I am looking at buying some folate soon if so which type?

I have been looking at seeing the GP about my Active B12 which came back at 40.9 pmol/L - Range -36.38 - 37.5 ( which I didn't understand at all as it said it was normal)

I have been feeling very unwell 🙁

Thanks for listening. x

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Cherylclaire profile image
CherylclaireForum Support

When my I was found to be B12 deficient, my folate level was also very low at first, along with ferritin and vitamin D. Thyroid can struggle too. B12 deficiency should be sorted out first:Active B12 (HoloTC) test: I would say that your level is low. Depends where you are looking for information, but general consensus appears to be that the cut-off point is somewhere between 30 and 42.48 pmol/L, although the range can be seen as 21-640, 9-123 etc etc.

Yes, very confusing I agree. It is a good idea to ask for a printout of your results which should show unit of measurement, local range and any additional advice from the laboratory.

If active B12 is low, there may well be a build-up of methylmalonic acid (MMA) in your bloodstream so perhaps this test would settle any doubt your GP might have regarding useful B12 level.

MMA will build up if your B12 is low because the two link up, meaning the MMA without B12 to pair up with will be unable to continue process, and left hanging around in your blood. This can right itself very soon after B12 has been administered.

There are other reasons for a rise in serum MMA: renal problems which can be ruled out with a blood test, and small intestine bacterial overgrowth (SIBO)- bacteria which can rob you of other vitamins including B12. This can be ruled in/out by a series of breath tests taken over the course of 4 hours.

My folate level was 5.5 ug/L, my ferritin somewhere between 35-45 ug/L. Both of these were within range but low.

Folate deficiency can be resolved usually by folic acid tablets and 5mg is really not necessary unless prescribed for a short period and monitored by GP, and only after B12 deficiency has been addressed first. There can also be adverse symptoms if folate is too high.

Ferritin (if found to be low): GP needs to monitor this too, as no-one should take ferritin if not needed, and can cause more problems if too high. You can have deficiency symptoms if below 60 ug/L.

My GP thought that my hair loss and bleeding gums were due to low folate/ferritin rather than just more B12 deficiency symptoms. I was given 3 months' treatment of both folate and ferritin initially because of this. Later, when I had problems sustaining a healthy level of both, I bought my own - but both still get checked roughly annually. It took a couple of years before stabilising at a good level.

Vitamin D I get on prescription because I was found to have osteoporosis of the spine.

Keep a daily record of your symptoms - that way, once you are given B12 treatment, you can see if it is effective or not. You will also have amassed some evidence if you aren't given treatment and are getting worse. For that reason, I would not only log what symptoms you are experiencing and how often, but also include severity. It can take a while to feel better.

Hope this helps and wish you well.

zazou profile image
zazou in reply toCherylclaire

Hello Cherylclaire, I got my blood result and in addition to B12 deficiency, my ferritine is very low (below range). My doctor said that no supplement was necessary and instead to eat a lot of iron content green vegetables to correct it. How your doctor corrected your? Thanks, I'm still new at this and are in gathering mode.

Cherylclaire profile image
CherylclaireForum Support in reply tozazou

Your doctor probably thinks your diet is to blame for your low ferritin level. It would be better to get the ferritin you need from iron-rich food if this is true, but my GP said to me that you'd need to eat about 5 bags of spinach to equal a 1/4 of a steak in iron content. But I've been a vegetarian for over 40 years now, and remained for the most part very fit and healthy.

My GP gave me three months course of tablets (ferrous sulphate) but ferritin proved difficult to maintain at a good stable level even after that. So I took a good multivitamin and mineral tablet daily and when necessary additional folate or ferritin as GP advised. She continued to monitor levels of both, vitamin D and thyroid - now annually. Everything seems to be fine at the moment, and I've stopped taking the multivitamins. My osteoporosis means I have to continue with prescribed vitamin D and Raloxifene has now been added by a rheumatologist.

Have a look at your diet and see if you can improve it. If you do end up getting tablets, make sure you are monitored by your GP - too much iron can also cause problems.

zazou profile image
zazou in reply toCherylclaire

thank you so much. I'm not vegetarian and eat well including moderate meat. I suspect absorption problem as I take metformin for diabetes and I have also a deficiency in B12 and many gastric problem. My GP said that ferritin is not so important since iron serum is still in range even if very low. He doesn't want to test other vitamin for me even folates, it was a one time shot as a was so exhausted. Thanks for the suggestion of Multivitamins. I will try to convince him to monitor my ferritin and iron in 3 months again as my B12.

Cherylclaire profile image
CherylclaireForum Support in reply tozazou

Yes, do as if not a dietary issue, there is not much you can do to prevent return of B12 deficiency - and without a known cause, GP could not guarantee that either.

Claire67 profile image
Claire67 in reply toCherylclaire

Hello, thanks for the reply,

Folate was 6.84nmol/L.Ref range was - 8.7 - 62.62 and they said it was LOW. My Ferritin was 38.4ug/L

Ref range was - 12.3 - 155.3 and they said it was NORMAL.

Vit D was 115 nmol/L

Ref range was 48.5 - 180.25 and said it was NORMAL

I am so confused with it all don't know where to start :(

Cherylclaire profile image
CherylclaireForum Support in reply toClaire67

Folate is below the range you have been given and could do with being in top 1/3 of range.Ferritin while within the normal range could really do with a boost and over 60 would be unlikely to give deficiency symptoms.

Vitamin D at least is looking to be fine.

I'm not a medical professional, but the advice above came either from my GP or from people here who have had to work out optimal levels.

A good multivitamin and mineral daily might be all you need to bring levels back up, if not a dietary problem. But only useful if your GP is willing to monitor, so you can work out what to take without going under or over.

Any B12 deficiency should be addressed before folate,

Sleepybunny profile image
Sleepybunny

Hi,

Some links about B12 deficiency and folate deficiency that might be useful....

Link about "What to do next" if B12 deficiency suspected

b12deficiency.info/what-to-...

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

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

Symptoms of Peripheral Neuropathy (damage to peripheral nerves)

nhs.uk/conditions/periphera...

Peripheral neuropathy can be associated with B12 deficiency and sometimes with folate deficiency.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord

pernicious-anaemia-society....

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

UK B12 documents

BSH Cobalamin and Folate Guidelines

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

Summary of above document

pernicious-anaemia-society....

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

stichtingb12tekort.nl/engli...

BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat patients who are symptomatic even if their B12 level is within range.

BNF Cyanocobalamin

bnf.nice.org.uk/drug/cyanoc...

BNF Hydroxycobalamin

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

NICE CKS B12 deficiency and Folate deficiency

cks.nice.org.uk/anaemia-b12...

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

B12 article from Mayo Clinic in US

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

Table 1 in above article is about frequent misconceptions about B12 deficien

B12 books I found useful

"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 hydroxycobalamin link.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

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

Very comprehensive with lots of case studies.

"Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Link has letter templates covering a variety of situations linked to B12 deficiency.

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

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

I am not medically trained.

I have read that receiving treatment for folate deficiency without treating a co-existing B12 deficiency may lead to neurological issues.

Article about Folate Deficiency (aimed at health professionals)

patient.info/doctor/folate-...

I've written other detailed replies in threads listed below.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

Some people like myself cannot convert the regular folate so have to take methyl folate which is cheap to buy, google to see if this may be you as the difference is noticeable very quickly

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