Folic Acid: Hi I am new here but would... - Pernicious Anaemi...

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Folic Acid

Sk1ppy profile image

Hi I am new here but would just like to ask a question on this post. My Doctor has prescribed me 5mg of Folic Acid for 3 months, they said my Folate is too low at 2.4 I have never had any B12 or any other meds for this type of problem. I am however worried that this high dose is too much your help and advice would be greatly appreciated thank you.

I do also have bad numbing/tingling down both my arms and halfway down my back to my waist it is like my arms are just a lead weight and cant move them for about around 1 to 2 minute.

39 Replies

5 mg is a huge dose , but OK for 3 months , but no longer . You can overdose on folic acid , but not on B12 . Have you had your B12 tested ? I feel that it should be tested as you have symptoms of possible B12 deficiency .

Sk1ppy profile image
Sk1ppy in reply to wedgewood

No I havnt had my B12 tested. I have just had a 3 part MRI on my neck, and full spine. I have numbing and tingling down both shoulders/arms and to my lower back. I also have these white blotches as were mentioned in a post. All these and other factors like tummy problem like hiatus hernia, trouble swallowing and now lost 14lb in weight.. I am thinking there seems to be too many things in connection here.

wedgewood profile image
wedgewood in reply to Sk1ppy

Yes i have those white blotches on my legs too ! Vitiligo . i had numb feet for a very long time , which i now know was caused by P.A My doctor was useless i had very low B12 i found out much later but was sent on my way . I went to a private doctor who diagnosed Pernicious anaemia

(. positive Intrinsic Factor Antibodies test ) A negative test does not disprove P.A. That’s incredible that you have had MRI scans but no B12 evaluation !

P.A starts in the gut . Do not do any supplementation of B12 before you get B12 tested as it could skew the result .Get tested asap ! Just beware . — The medical

profession is extremely ignorant about P.A.

Very best wishes .

Sk1ppy profile image
Sk1ppy in reply to wedgewood

They havnt said anything about my B12 but I have found 1 of my old bloods from 2019 and it says Serum vitamin B12 - 273pg/ml

Gambit62 profile image
Gambit62Administrator in reply to Sk1ppy

What is your diet like in terms of folate? If it is good then that would suggest an absorption problem. If you have a folate absorption problem that makes it more likely you will also have a B12 absorption problemHow quickly did your symptoms develop. Folate isn't stored in the body so is much more responsive to a dietary deficiency or absorption problem and symptoms develop uite quickly.

B12 is stored in large quantities in the liver, and this is used to regulate the levels in the blood at the point that is right for a given individual. If you have an absorption problem then the release mechanism is also affected so levels drop but this can take years or even decades so symptoms come on much more slowly and often aren't noticed until they start to snowball. Serum B12 is also a difficult test to interpret from a single result - but can be used to see if levels are dropping significantly or there is a downward trend over time which would indicate an absorption problem. Unfortunately the test isn't very accurate and results vary by 20% on the same sample so you would be looking for drops outside this range to confirm an absorption problem. This is one reason why evaluation of symptoms is so important.

Sk1ppy profile image
Sk1ppy in reply to Gambit62

I love my veg I was told I cant absorb the folic acid because of taking Omeprazol for my stomach.

coat2003 profile image
coat2003 in reply to Sk1ppy

if you have any Gps merrily prescribe xxxprazols, you certainly will have a b12 deficiency.my late husb and suffered all his life with a bad hiatus hernia. Try to solve the absorption issue. taking med even 1 daily has the absorbtion of vit Bs. I am horrified so many people with this probs and medics not interested.my late hubby had a blood issue, and anemia hasn't helped. It was a serious condition he passed on, but won't mention precisely. Be extra careful if any parts belonging to lymph system YOU DO NOT HAVE.He was missing all but spleen. GPS merrily prescribe xxx prazoles, but NOBSY CARES a side effect.malabsorption of vit b in general.and Bs are extremly important for nervousb system well functioning, skin....

You seem to be well informed and have obviously taken the trouble to read extensively through this site - great!

I thought in the UK (it certainly has applied in my area of East Anglia for about a couple of years) that if you have a test for folate they automatically test your B12.

This really should be the protocol across the board as while high folate per se (caveats to come) is not a problem in itself, it is able to mask the symptoms of a B12 deficiency which, if left untreated (as in your case) has serious and damaging consequences.

It is therefore vital/essential/imperative that treatment to rectify a B12 deficiency is started before folic acid is given.

Now for my caveats! 😃

Last one first - in theory B12 supplementation should be given according to symptoms and at the moment very few medics are aware of this. B12 is not toxic and has no official upper intake limit. Few medics know this either.

Some people have absorbtion and metabolism problems with B12 meaning that they must have high levels of injected B12 to reduce the symptoms of B12, even when oral supplementation is able to increase the blood serum levels to "cure" the B12 deficiency on paper. This is also little recognised within the medical profession - hence our problems and this wonderful group.

Next...

Technically folate is food-derived vitamin B9 and is not a problem, except in extreme cases of intolerance. It is used in the body as 5-methyltetrahydrofolate and is available in this form as a supplement. If you take too much methylfolate it can give you a headache from hell.

Normally if vitamin B9 supplementation is needed then folic acid is used. It is usually available in 400mcg from pharmacies, or 5mg tablets from Drs. If high levels are used for a long time it is possible to get an excess of unmetabolised folic acid building up in your body.

I just need decent Doctors, they havnt tested my B12 grrr.😡

hats off to you, you know your stuff!monika x

Jillymo profile image
Jillymo in reply to wedgewood

I was prescribed 400 twice daily and have been on them for a while now but wasn't aware you can over dose on it until reading some of your replies.I went on to be deficient in B12 and now on injections - make sure they test yours because low B12 makes you feel awful. Good luck

The taking of PPIs ( Proton Pump Inhibitors )over an extended period , like Omeprazole is one of the reasons for VitaminB12 deficiency . They annihilate stomach acid which is essential for the absorption of the most difficult to absorb Vitamin B12 ( which also requires the Intrinsic Factor ) Its astonishes me that your doctor has not thought of this , but you have had all those MRI scans, but not the more simple B12 assessment!

Was your b12 found to be low?

Sk1ppy profile image
Sk1ppy in reply to Nackapan

They havnt said anything about my B12 but I have found 1 of my old bloods from 2019 and it says Serum vitamin B12 - 273pg/ml

Nackapan profile image
Nackapan in reply to Sk1ppy

Good you have a reading as a baseline.So when tested yiu csn see

Sk1ppy profile image
Sk1ppy in reply to Nackapan

Is that a good reading or bad? I thought it was extremely low.

Nackapan profile image
Nackapan in reply to Sk1ppy

Oh I thought in range .

There shoujd be an 'in range' on the right of your result on the form in brackets

Mine was regarded low at 106pg/mL

Range 200 -900ng/mL

I will never know what number I was well at .

No baseline as first ever test.

Same goes for my daughter whose number was much lower thsn mine .

First exer test!!

So annoying nit more routinely tested.

We all seem to operate at different levels but there is a cut off.

It has up to a 20% variant on the same sample but thats taken into account.

At least when you have another you can see what's happening. Main thing is going on Symptoms

Some have no symptoms on your number others alot.

Did you get treatment with b12?

And are you doing okay?

Always interested in how others are doing . .

We learn from each other

Sk1ppy profile image
Sk1ppy in reply to Nackapan

Good day,Ive not had B12 injections.

Im ok just woke got stiff fingers with numb shoulders and arms, but least I had a sleep 😜.

My print out of last test they have just started writting (Normal for patient) which annoys me because I have no idea what is (Normal) 😡

Hope your well this fine day stay safe x 👍

Do bear in mind that you can have a normal B12 reading , but still have P.A. / b12 deficiency ( but does your doctor know this fact? ) . SYMPTOMS should be treated , not test results . A course of 6 injections over 2 weeks would be a first move . B12 injections are very cheap . Cheaper than several MRI scans ! b12 injections are harmless if you do not actually need them . It may be that Omeprazole has caused your problems . But that doesn’t rule out P.A. of course .

Hi,

A few links that might be helpful.

"My Doctor has prescribed me 5mg of Folic Acid for 3 months, they said my Folate is too low at 2.4"

Treating folate deficiency without treating a co-existing B12 deficiency can cause neurological issues.

From personal experience, I can tell you it is possible to have severe B12 deficiency with an in range serum B12 result.

My understanding of UK guidelines is that a patient with normal range B12 who has the symptoms of B12 deficiency should be treated.

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....

SACD can be associated with B12 deficiency and I think more rarely with folate deficiency.

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PA tests

Intrinsic Factor Antibody (IFA) test

labtestsonline.org/tests/in...

Parietal Cell Antibody (PCA) test

labtestsonline.org/tests/pa...

PCA is not recommended as a diagnostic test for PA in UK.

It is still possible to have PA with a negative result in IFA or PCA test.

About 50% of people with PA test negative on IFA test.

About 10% of people with PA test negative on PCA test.

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

UK B12 documents

BSH Cobalamin and Folate Guidelines

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

Summary of above document

pernicious-anaemia-society....

One of the bullet points in above 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 "

I take this to mean that if you have the symptoms of B12 deficiency you should be treated to avoid neuro damage, even if test results are normal range.

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 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...

BNF Folic Acid

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

Coeliac disease

Have you been tested?

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

NICE guidelines Coeliac Disease

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

Coeliac Blood Tests

coeliac.org.uk/coeliac-dise...

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.

Two B12 books I found useful (both also 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 B12 treatment info is out of date. See BNF links 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.

I've written some very detailed replies in the threads below which may have B12 info you might find useful eg causes of B12 deficiency, books, articles, UK B12 documents, B12 websites along with a few hints about managing unhelpful GPs.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

I am not medically trained.

Sk1ppy profile image
Sk1ppy in reply to Sleepybunny

Oh my gosh Sleepy, Thank you for taking so much of your time in replying to me. When I have time I will certainly read up on these many thanks 👍 x

Hi, your B12 would have been tested the same time as your folate levels. On a blood test form it's under the same title that is ticked by the doctor "B12 & Folate". Is this the first time you've had this? I've just had my 3rd blood test for it and received a text saying that they need to discuss results with me, so can guarantee I have it for a 3rd time! I have no idea why it keeps going low. 😏 Take care x

Sk1ppy profile image
Sk1ppy in reply to FudgeJessy

Yes its the first time.

Have you also got results for ferritin or other iron tests and full blood count?

Blood tests

b12deficiency.info/b12-test...

Macrocytosis

patient.info/doctor/macrocy...

Full Blood Count and Blood Film

labtestsonline.org.uk/tests...

patient.info/doctor/periphe...

Folate Deficiency

patient.info/doctor/folate-...

Iron Studies

labtestsonline.org.uk/tests...

Sk1ppy profile image
Sk1ppy in reply to Sleepybunny

I havnt got new 1s yet. I asked Doctor for ALL my medical records but Im having a hard time getting them ☹️ Im going to try again tomorrow (Monday) I also have an appointment for my knee injections Wednesday and will bug them again 😁

Nackapan profile image
Nackapan in reply to Sk1ppy

I finally managed to get the NHS app.might be worth a try . Had blood results on .

helvella profile image
helvella in reply to Nackapan

Only available in England - not the other three nations of the UK.

Sk1ppy profile image
Sk1ppy in reply to Nackapan

Well done Nackapan, I hope you have filled a form in at your Doctors for all your medical records so you can share them with the NHS site. I finally got all mine cept for some tests they wont show like MRI/CT/Xrays etc but most else are showing. Hope they keep updating things fingers crossed 👍

Good luck hope yours are all there😜 x

Hi again,

I asked Doctor for ALL my medical records but Im having a hard time getting them ☹️ Im going to try again tomorrow (Monday)

Might be worth putting the request into a formal written letter as probably harder to ignore.

When GP surgery receives this sort of request, I believe it has to be signed off by your GP which may take a few days if your GP is absent/part-time.

GP surgery can refuse the request if they believe that to give you the info could cause harm to someone but as far as I know they would have to inform you if they felt this way and I think you can appeal.

Suggest you look at links below....

Under GDPR legislation, GP surgery has a set time to respond to this type of request. I think there may be some flexibility due to pandemic in how long GP surgery can take.

Retention of UK medical records

bma.org.uk/advice-and-suppo...

Don't rely on there being evidence of a past diagnosis of PA (Pernicious Anaemia) or other cause of B12 deficiency in current medical records.

If you get proof of PA diagnosis or evidence of B12 deficiency eg positive Intrinsic Factor Antibody test result/letter from specialist confirming diagnosis/ test results showing low serum B12, low active B12, raised MMA, raised homocysteine, raised MCV, raised MCH etc keep copies in a safe place in case needed in the future.

Accessing Health Records (England)

nhs.uk/using-the-nhs/about-...

england.nhs.uk/contact-us/h...

patients-association.org.uk...

BMA (British Medical Association) article about accessing medical records

bma.org.uk/media/1868/bma-a...

PDF has 16 pages.

ICO (Information Commissioner's Office)

ico.org.uk/

Local MP may be worth talking to if struggling to access your records/get appropriate treatment.

members.parliament.uk/

Local Guidelines

Each CCG/Health Board in UK will have its own local guidelines on treatment/diagnosis of B12 deficiency and probably separate guidelines for folate deficiency. I recommend you get hold of the local guidelines for your area of UK and compare them with BNF, BSH and NICE CKS links in my other reply.

It's good to know what you are up against locally....some local guidelines differ from advice in BNF/BSH/NICE CKS links.

I hope you are not in the area below which has a poor reputation on this forum for treatment of B12 deficiency.

b12deficiency.info/blog/202...

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

Nackapan profile image
Nackapan in reply to Sleepybunny

I usex the NHS app. J thinknit wS wedgewoodthat posted the link

Photo iD ect online.

Said mine didn't match photoyoh had to do onthe spotlight.

So thst took a while.

Tgen baf to ring surgery for access. Took two goes

Blood test included and consults.

Some withheld some you had to try and work out what was happening at that time?

One bit was hilarious about 6 ????mental health

or neurological dysfunction.the list went in but no mention of b12 deficiency!! no answers

One bit even said went over same symptons again

Surely this must tell them something ??

"I have just had a 3 part MRI on my neck, and full spine. I have numbing and tingling down both shoulders/arms and to my lower back"

Have you considered getting hold of the MRI report. See links about accessing medical records.

Both B12 deficiency and I think more rarely folate deficiency can increase the risk of developing damage to spinal cord. See links about SACD in other reply.

Blog post from Martyn Hooper's blog, mentions SACD

martynhooper.com/2010/09/21...

I hope your GP is aware of this increased risk....

Do you have balance issues?

Issues with proprioception (also called position sense)?

Does your GP have a list of all your neuro symptoms?

See Symptoms lists in other reply.

Have you been referred to

a neurologist?

a haematologist?

a gastro enterologist if gut symptoms present?

If you see a neurologist, worth asking them to check your proprioception sense.

Problems with proprioception can be associated with B12 deficiency

Tests below should only be carried out by a doctor at medical premises due to risk of loss of balance.

Two neuro tests that can help diagnose proprioception problems are

1) Romberg test

2) Walking heel to toe with eyes closed

If no neuro tests where patient's eyes are closed are carried out, it's possible that proprioception sense has not been fully tested.

Videos of these tests and other neuro tests on Youtube.

Sk1ppy profile image
Sk1ppy in reply to Sleepybunny

I am not fully conversant with all this or abreviations/medical terminology sorry Sleepy.

I have had a test where they put a tube/camera down my throat into my tummy, and a biopsy was taken. It came back with Haitus Hernia, couple other things which I cant remember the name of sorry.

I was also sent for a pH test where they put a tube down my nose with a box connected to my waist for 24 hours, that came back with high results and specialist wont operate because my BMI is too high :( its 33.

None of the other tests have been done or mentioned.

helvella profile image
helvella in reply to Sk1ppy

This might help - though it is biased towards thyroid issues:

Abbreviations and Acronyms

Some years ago, I started compiling a list of many of the abbreviations and acronyms that appear on the Thyroid UK forum ( healthunlocked.com/thyroiduk/ ) regularly. The idea was to make it relatively quick and easy to look up abbreviations and acronyms without being waylaid by the many irrelevant possibilities that web searches tend to return.

I continue to update the document quite frequently!

helvella – Abbreviations and Acronyms

dropbox.com/s/2423slilh0or6...

You might never have downloaded a copy, or not for some time, perhaps months or years :-) If so, I suggest you download a copy and save it (or a shortcut) somewhere easy to find.

Please, if you think there is anything missing or wrong, let me know. Post on the forum or send me a Private Message.

If I have posted this because you asked about, or referred to, an abbreviation or acronym, please take this as intended, a way of helping you now and into the future. Not a criticism that you asked.

Do not feel you have to reply to this response!

Sk1ppy profile image
Sk1ppy in reply to Sleepybunny

I have just read that link and that sounds exactly like me except I fell down a flight of stairs and damaged my lower back, this happened 3 times because of losing my balance, then all the rest of what he mentioned has happened to me and I am getting blurry sight now 😢

Sleepybunny profile image
Sleepybunny in reply to Sk1ppy

SACD stands for Sub Acute Combined Degeneration of the spinal cord.

In SACD, the myelin layer around the spinal cord is damaged.

PAS have a good article on SACD which is easy to read. See link below.

pernicious-anaemia-society....

Might be worth asking your GP if you have been assessed for SACD.

MRI report should say whether they found evidence of SACD during the scanning.

My understanding, I'm not medically trained is that SACD due to B12 deficiency should be treated aggressively....with regular B12 injections.

I suggest you insist politely on being referred to a neurologist if you haven't seen one yet.

Maybe you could put a referral request into a polite letter to GP?

b12deficiency.info/b12-writ...

Have you thought about joining PAS who could pass on info about SACD?

PAS membership

pernicious-anaemia-society....

Films and videos about B12 deficiency.

PAS conference 2019

pernicious-anaemia-society....

Films about B12 deficiency

b12deficiency.info/films/

Another B12 book

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

I'm not good at explaining proprioception but it's awareness of where your body is in space.

If your balance is poor when it's dark, or when your eyes are closed or when something blocks your view of surroundings then worth checking proprioception.

I found it harder to walk in a straight line at night time and I used to fall off the pavement if someone walked directly towards me and I couldn't see into the distance.

I used to misjudge where things were when reaching for things so that meant broken crockery etc

Are you clumsy, drop things, bump into things?

Do you find it hard to walk in a straight line?

Some forum members have reported veering into walls when they try to walk in a straight line.

Do you have an unusual gait, meaning is the way that you walk different to other people?

I used to bump into doorways.

Sk1ppy profile image
Sk1ppy in reply to Sleepybunny

yes I walk into walls etc, balance isnt too good I am using a walking frame. I do have probmatic knees and joints with Arthritis as well so I put it down to that. It is possible thou it is something else thank you 👍

Sleepybunny profile image
Sleepybunny in reply to Sk1ppy

Might be worth writing a polite, brief letter to your GP, including a list of all neuro symptoms and a request to be referred to a neurologist and assessed for possibility of SACD.

Neuro Symptoms associated with B12 deficiency include the following

tingling

pins and needles

numbness

electric shock sensations

insect crawling sensations

water dripping sensation

burning sensations

memory problems

brain fog

confusion

clumsiness

dropping things

bumping into things

balance issues

migraine

strange behaviour eg putting car keys in the fridge

unusual gait (unusual way of walking)

loss of bladder and bowel control

difficulty getting the right words out (nominal aphasia)

muscle twitching/spasms

muscle fasciculations (ripple muscle movements)

eyelid flickering

pain and discomfort in spine

problems with proprioception

See Symptoms lists in my first reply for more neuro symptoms.

Some of the symptoms listed can also be associated with folate deficiency.

"and I am getting blurry sight now"

Have you thought about making an appointment for an eye test/examination?

nhs.uk/nhs-services/opticia...

You could mention your concerns about folate deficiency and possible B12 deficiency and they may look at the health of your optic nerve.

B12 deficiency and folate deficiency can lead to problems with optic nerve.

Sometimes the route to diagnosis of B12 deficiency is via other health professionals.

any excess of vit b and folic acid is vit B9, is out of your body, gets out in urine safely, for pa. go so far as b12 injections, no idea strength, how often, NOT A MEDICALLY TRAINED.

beginner1 profile image
beginner1 in reply to coat2003

Vitamin B9 is Folic acid and overdosing is harmful. Vitamin B12 which we need for PA and Vitamin B12 deficiency is not harmful and any excess will be 'peed' out.

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