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abnormal folate but normal b12 - diet related?

Artemis2 profile image
28 Replies

my husband has been feeling unwell/cognitively impaired. He had some blood tests and his folate was abnormally low but his b12 was in the middle of the range. I’m just wondering if it is diet related wouldn’t his b12 be low too? I looked up a list of folate rich foods and we eat most of them. Not sure if this is the right place for this question but his doctor just sent him a text saying there was a prescription waiting for him so he didn’t get a chance to speak to him. Here are his results:

16 Nov 2023

Serum folate

Result

2.6 ug/L

Normal range

2.9 - 50

Abnormal

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Artemis2 profile image
Artemis2
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28 Replies
Jillymo profile image
Jillymo

Hello and welcome,

Yes indeed your on the correct forum.

Has your husband been prescribed folic acid by any chance ? Do you know if they checked his B12 ? If not request that they do so.

I was prescribed folic acid which masked my low B12. I became very lathargic, lost my balance and much of my cognitve function. Others will answer your post and offer information.

Pop his B12 results on here.

Artemis2 profile image
Artemis2 in reply to Jillymo

yes he has been prescribed 5mg of folic acid a day for three months. His b12 was tested and is in the middle of the range. I’m confused because if his deficiency was to do with his diet wouldn’t his b12 be low too?

He has been getting his words mixed up and is very tired and finding work mentally difficult (he is 52).

Here are his b12 results 2023 going back to 2018:

431 ng/L • Normal

Normal range: 160 - 925

16 Nov 2023

535 ng/L • Normal

Normal range: 160 - 925

8 Dec 2022

496 ng/L • Normal

Normal range: 160 - 925

12 Jul 2021

501 ng/L • Normal

Normal range: 187 - 883

6 Aug 2018

gerrycrilley1 profile image
gerrycrilley1 in reply to Artemis2

Hi Artemis.Sorry to hear what you're husband is going through.

Am in the same boat M54

And over the last few months have been experiencing memory and cognitive issues. Very frightening.

I two have low folate levels and am going to start supplementing today.

My b12 levels came back really high near the beginning of August 1399.

Going to be investigating this more fully.

However recent tests 23th November came back normal it was a Vitamin Active test. From medichecks.

There is evidence that your b12 levels even if normal or high can actually be a b12 deficiency in some cases due to absorption issues.

B12 deficiency can most definitely result in neurology issues i.e memory loss, confusion and cognitive decline. And if this is due to your B12 needs urgent attention.

Am hoping that this might be true in my case. And I am going to see a private GP tomorrow to investigate my memory problems. Whether getting more blood done, memory tests. Cat Scan whatever it takes to find out what is happening. I also have thyroid issues which could be the culprit.

Please ask more knowledgeable members of the forum about when a normal b12 result can actually be a deficiency especially SlowDragon as she has been most helpful.

Know it is a mindfield trying to figure everything out but hang in there, plenty of good people in the forum that can help.

Please if you think that what is happening with your husband could be in anyway related to what I am going through don't hesitate to pm me.

Gerry.

Artemis2 profile image
Artemis2 in reply to gerrycrilley1

Thanks Gerry and good luck with the supplementation.

My husband looks healthier even though he has only been taking folic acid for a few days (although it could be a coincidence). He has been prescribed three months worth. If he doesn’t feel better in a couple of months he’s said he’ll go back to the GP.

The cognitive issues are scary - hopefully they’ll improve with the supplementation

gerrycrilley1 profile image
gerrycrilley1 in reply to Artemis2

Thanks Artemis and best of luck. Let's hope the supplements really help.

Gambit62 profile image
Gambit62Administrator

Folate is found in fruity veg. B12 is found in animal products - meat, fish, dairy egs - so dietary sources are very different, so having a dietary deficiency in one doesn't mean you should be deficiency in the other.

Your body doesn't really hold stores of folate whereas it does store quite a lot of B12. This means that a dietary deficiency in folate will manifest quite quickly but for B12 it can take years or even decades.

B12 deficiency is quite difficult to identify from a single point test using serum B12. Levels tend to be quite steady in an individual at some point in the range but will start to drop if there is an absorption problem.

If you really don't think the deficiency is dietary but an absorption problem then that increases the likelihood that he also has a B12 absorption problem - as they are both absorbed in the ileum but the mechanisms of absorption are quite different.

Has your husband ever had gastric surgery affecting the ileum or gallbladder?

Artemis2 profile image
Artemis2 in reply to Gambit62

Thanks for the replies. He has never had surgery. He had a lot of stomach problems (I thought maybe he had IBS) when he was a teenager and in his 20s but he says it’s improved a lot.

I’m surprised he has a deficiency because we eat a lot of food containing folate (but maybe not enough as my folate is low too). He hardly ever eats fortified food eg bread or cereal.

I’m not sure how low 2.6 ug/L is - ie are most people clumped together at the low end of the range or is there an even spread?

He was tested a couple of years ago because of tiredness. His folate was low then (I think 4ish) but no action was taken. I think the GP put his tiredness down to his thyroid which was/is borderline.

He has only been taking the folate for a few days but the colour in his face looks a lot healthier (he has been looking really ill).

I’m wondering if there’s more to it than his diet. I’m also worried that he might have the beginnings of dementia or that something else might be going on with his brain. He had concussion a few times as a child.

Gambit62 profile image
Gambit62Administrator in reply to Artemis2

surgery can damage the ileum which is why I asked.

As you get older stomach acidity tends to reduce which can also affect your ability to absorb micronutrients, including folate.

If his colour is coming back that is good. It suggests that the problem probably was folate - it can affect blood and it can also affect memory, mood etc. Hope he feels improved soon.

Artemis2 profile image
Artemis2 in reply to Gambit62

That’s reminded me - his blood tests have always come back abnormal for years but the GP says that it’s normal for him so no action is required.

I think his red blood cell count is consistently low and haemaglobin too. He has been feeling tired for years but it was only when he started mixing up his words that he got really worried. Maybe a lot of these things are related.

Gambit62 profile image
Gambit62Administrator in reply to Artemis2

folate deficiency would have resulted in larger rounder red blood cells - smaller is consistent with iron deficiency but being low in range or even just below the range may not always mean there is a problem

Artemis2 profile image
Artemis2 in reply to Gambit62

Thanks - that’s useful to know. His cognitive issues might be down to something else.

Artemis2 profile image
Artemis2 in reply to Gambit62

Thanks. Here are his results:

16 Nov 2023

Red blood cell (RBC) count

Result

4.25 10^12/L

Normal range

4.3 - 5.6

Abnormal

16 Nov 2023

Red blood cell distribut width

Result

12.8 %

Normal range

11-16

Normal

His RBC and Full blood count have always been abnormal since 2012.

Even yesterday I noticed he was getting his words mixed up. His GP said he has a lot of mental congestion (he subsequently ordered the tests).

I think it might be to do with the folate but I’m going to suggest he asks for some other investigations in case it’s something else.

Forestgarden profile image
Forestgarden in reply to Artemis2

He was tested a couple of years ago because of tiredness. His folate was low then (I think 4ish) but no action was taken. I think the GP put his tiredness down to his thyroid which was/is borderline.Has his thyroid been tested again recently?

Artemis2 profile image
Artemis2 in reply to Forestgarden

Yes. It’s still low/ underactive but not enough to medicate.

Forestgarden profile image
Forestgarden in reply to Artemis2

Do you have the actual test results with ranges? Were freeT4 and freeT3 tested as well as tsh?

Artemis2 profile image
Artemis2 in reply to Forestgarden

he only had T4 and TSH tested:

16 Nov 2023

THYROID FUNCTION TESTS

16 Nov 2023

Serum TSH level

Result

5.07 mU/L

Normal range

0.27 - 4.20

Abnormal

16 Nov 2023

Serum free T4 level

Result

14.3 pmol/L

Normal range

11.9 - 21.6

Normal

Technoid profile image
Technoid in reply to Gambit62

small correction on folate stores

"Your body's store of folate is usually enough to last 4 months."

nhs.uk/conditions/vitamin-b...

Sleepybunny profile image
Sleepybunny

Hi,

If he's symptomatic for B12 deficiency, my understanding is that he should be treated even if his serum B12 is normal range.

Symptoms of B12 Deficiency (folate deficiency also mentioned)

pernicious-anaemia-society....

b12deficiency.info/signs-an...

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

b12-institute.nl/en/symptom... (B12 Institute Netherlands)

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.

Blog post about being symptomatic with normal range serum B12.

b12info.com/your-serum-b12-...

Might be worth looking into Functional B12 deficiency. This is where there is plenty of B12 in the blood but it's not getting to where it's needed so person develops deficiency symptoms.

MMA, Homocysteine and Active B12 (holotranscobalamin) may help to diagnose functional B12 deficiency.

What to do next if B12 deficiency suspected

b12info.com/what-to-do-next/

If PA is suspected, worth joining PAS (Pernicious Anaemia Society).

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS membership is separate to membership of this forum.

Testing for PA

pernicious-anaemia-society....

Unhappy with treatment?

How to write to GPs about B12 deficiency

b12info.com/writing-to-your...

Link to thread about Patient Safety, has useful links for those in UK having difficult health experiences with B12 deficiency.

healthunlocked.com/pasoc/po...

UK B12 documents

NHS article about B12 deficiency and Folate deficiency

nhs.uk/conditions/vitamin-b...

BSH Cobalamin and Folate Guidelines

This is aimed at health professionals.

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

BNF Hydroxocobalamin

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

NICE CKS B12 deficiency and folate deficiency

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

NICE are developing a new B12 deficiency guideline to be published in 2024.

nice.org.uk/guidance/indeve...

In someone who has both B12 and folate deficiencies, B12 treatment would be started first. Starting folate treatment without treating a co-existing B12 deficiency may lead to neurological problems.

BNF Folic Acid

bnf.nice.org.uk/drug/folic-...

See Cautions section in above link which says that folic acid should never be given on its own for PA (Pernicious Anaemia) or other megaloblastic anaemias caused by Vit B12 deficiency as this may lead to SACD, subacute combined degeneration of the spinal cord.

Coeliac disease

Has he been tested?

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

nice.org.uk/guidance/ng20

More on Coeliac UK website

coeliac.org.uk/information-...

I urge UK forum members to track down the local B12 deficiency guideline used by their ICB (Integrated Care Board) or Health Board in Wales/Scotland and compare them to NICE CKS link.

Two useful B12 books

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

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

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

Very comprehensive with lots of case studies.

Wrong ideas about B12 deficiency

Many of us have met health professionals with poor understanding of B12 deficiency.

Misconceptions about a B12 deficiency

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

stichtingb12tekort.nl/engli...

Diagnosis and Treatment Pitfalls

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

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

Help for GPs

1) PAS website has a section for health professionals

pernicious-anaemia-society....

2) Club B12 is agroup of researchers and doctors looking into B12.

club-12.org/

3) Good article to pass to GP

B12 article from Mayo Clinic in US

The Many Faces of Cobalamin (Vitamin B12) Deficiency

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

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

I'm not medically trained just someone who suffered for years from unrecognised and untreated B12 deficiency.

Artemis2 profile image
Artemis2 in reply to Sleepybunny

Here are his b12 results going back to 2018. It seems to be 500 ng/L on average:

431 ng/L • Normal

Normal range: 160 - 925

16 Nov 2023

535 ng/L • Normal

Normal range: 160 - 925

8 Dec 2022

496 ng/L • Normal

Normal range: 160 - 925

12 Jul 2021

501 ng/L • Normal

Normal range: 187 - 883

6 Aug 2018

They’re similar to my levels. We both have low folate (his abnormally low) and mid/highish b12 levels so maybe it is to do with diet.

Sleepybunny profile image
Sleepybunny in reply to Artemis2

I had severe B12 deficiency symptoms including dementia type symptoms, spinal symptoms and many neurological symptoms with most serum B12 results between 300 - 500ng/L.

If he has the symptoms, my understanding of NICE CKS link and BSH Cobalamin and Folate guideline is that he should be treated.

NICE CKS link states

"Note: clinical features of vitamin B12 deficiency can occur without anaemia and without low serum levels of vitamin B12."

BSH Cobalamin and Folate guideline summary states

"In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment"

pernicious-anaemia-society....

Artemis2 profile image
Artemis2 in reply to Sleepybunny

So your levels looked ok going by the blood tests but the deficiency was masked somehow?

Did your symptoms go away after you took b12? (Sorry for all the questions. I have a hard time persuading my husband to go to the GP when he’s not feeling well so just want to make sure I understand).

Did your GP prescribe the b12 or did you buy some yourself?

Is the idea that if you take folic acid you should always take b12 too?

How would you find out that you’re deficient in b12 if the blood test is normal? Could his cognitive problems just be down to his abnormally low folate levels?

Thanks for the reply.

Sleepybunny profile image
Sleepybunny in reply to Artemis2

Might be good to take several days to read this so it's not so overwhelming.

I'm not a health professional so I can't give medical advice. I sometimes suggest people read articles that I found helpful or interesting.

Some links might have upsetting details.

I did have a previous serum B12 result that was well under range.

I was only given 5 or 6 loading injection then nothing else. I think they stopped giving them partly because my serum b12 had risen to about 300 ng/L and I suspect they thought everything was okay as B12 serum levels had risen.

At the time I had dementia symptoms, spinal symptoms, neurological symptoms, mental health symptoms, mouth symptoms etc etc...all typical of B12 deficiency.

At the time I trusted my GPs knew what they were doing....that was nearly my undoing.

It was only after spending many hours researching info online that I realised I had not been treated correctly and that practically every symptom I had could be explained by B12 deficiency. Folate and iron were I think within normal range but not that far up the range.

I was refused further B12 treatment on several occasions and raised the issue with every specialist I saw, they weren't much better apart from one neurologist who at least thought B12 deficiency was a possibility.

After realising I was going to end up in a home with dementia and paralysis due to spinal damage if I didn't do something, I chose to treat myself. I did eventually get some NHS treatment.

It took weeks even months to see improvement because I had been left untreated for so long.

"How would you find out that you’re deficient in b12 if the blood test is normal"

If serum B12 test is normal range then following tests might help to diagnose Functional B12 deficiency.

MMA

labtestsonline.org.uk/tests...

stichtingb12tekort.nl/engli...

Homocysteine

labtestsonline.org.uk/tests...

Forum thread about tests for PA and B12 deficiency

healthunlocked.com/pasoc/po...

This PAS page discusses diagnosis of PA and B12 deficiency. It states

"The clinical picture is the most important factor in assessing the significance of test results assessing cobalamin status since there is no ‘gold standard’ test to define deficiency."

pernicious-anaemia-society....

Cobalamin is the scientific word for B12.

Have a look at the right hand side of this diagnostic flowchart.

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

stichtingb12tekort.nl/engli...

It suggests that doctors should consider continuing B12 injections in someone who has responded to the injections (improvement in symptoms) even if tests such as MMA, homocysteine, Active B12 are "normal" range.

"Is the idea that if you take folic acid you should always take b12 too?"

That's not how I understand it...I'm not medically trained.

My understanding is that if you have both folate deficiency and B12 deficiency, B12 treatment should be started first. Treating folate deficiency without treating a co-existing B12 deficiency could lead to neurological problems.

This next link states in section "Is there anything else I should know"

"If a patient is deficient in both vitamin B12 and folate, but only takes folic acid supplements, the vitamin B12 deficiency may be masked. The anaemia associated with both may be resolved, but the underlying neuropathy (nerve damage) will persist and may deteriorate."

labtestsonline.org.uk/tests...

Have a good look at his Full Blood Count. There can be clues on this.

High MCV result is suggestive of possible macrocytic/megaloblastic anaemia. In this type of anaemia, red blood cells are larger than normal.

Macrocytosis

B12 deficiency can lead to enlarged red blood cells (macrocytosis) - so can folate deficiency.

Iron deficiency can lead to small red blood cells.

In a person who has both B12 deficiency (and/or folate deficiency) with iron deficiency, they may appear to have normal size red blood cells on FBC (Full Blood Count) because the effects of iron deficiency can mask the effects of B12 deficiency/folate deficiency.

Things can get complex in someone who has deficiencies in B12, folate and iron at the same time.

Macrocytosis

Aimed at health professionals

patient.info/doctor/macrocy...

Full Blood Count and Blood Film

labtestsonline.org.uk/tests...

patient.info/doctor/periphe...

This link outlines when a person with B12 and/or folate deficiency should be referred to

a neurologist

a haematologist

a gastro-enterologist

Scroll down the page in link to Referral section.

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

Has he been referred to any of these?

If GP won't refer (referrals are expensive for GP surgeries) then maybe you can ask GP to write a letter to a neurologist etc for advice on treatment.

Contact with a specialist does not guarantee better treatment.

SACD, sub acute combined degeneration of the spinal cord

This is a potential consequence of delayed or inadequate treatment of B12 deficiency.

B12 deficiency can cause damage to the myelin layer around nerves.

It can also happen as a result of delayed or inadequate treatment of folate deficiency although I think this is not as widely known.

pernicious-anaemia-society....

The reason I end up posting so much info is mainly the lack of understanding of B12 deficiency and folate deficiency that some health professionals have ...even specialist doctors...

See articles I posted about misconceptions and wrong ideas when you have the time so you're prepared in case you meet health professionals who lack understanding.

I spent a couple of years educating myself...my brain was so foggy that I could only take in small amounts of information.

Apologies if I haven't answered all your questions.

Might be useful info in pinned post "various B12D/PA resources.

Artemis2 profile image
Artemis2 in reply to Sleepybunny

Thanks. I’ve ordered some B12 vitamins for him to take along with the folic acid. His folate levels are abnormal. Folate can also cause cognitive issues

Sleepybunny profile image
Sleepybunny in reply to Artemis2

If you haven't looked at it already, I suggest reading the link below about what to do if you suspect B12 deficiency.

b12info.com/what-to-do-next/

Might also be worth keeping a symptoms diary for him if he's happy with that.

Maybe track up to ten symptoms daily or weekly. Score severity each day or week.

Could be useful evidence of improvement or deterioration to show GP.

Artemis2 profile image
Artemis2 in reply to Sleepybunny

Will do. Thanks

Sleepybunny profile image
Sleepybunny in reply to Artemis2

If you keep a symptoms diary, I suggest noting any treatment given and any relevant blood test results. Look for patterns in the symptoms.

Artemis2 profile image
Artemis2 in reply to Sleepybunny

Thanks 👍

Artemis2 profile image
Artemis2

Thanks again for all the replies.

I’m puzzled about how much folate rich food you would have to eat to get to the mid range or even healthy range. I looked at a list of the top 15 foods and I eat all of them apart from two and my husband eats a lot of them.

That’s why I was wondering if most people have a lowish number for folate.

Our (grown up) daughter eats vegetarian food most of the time and her level was 4.6 ug/l but her GP uses a different range:

Serum folate:

4.6 ug/l

Normal range:

2.99 to 26.8

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