Recently diagnosed with Low B12 / Fol... - Pernicious Anaemi...

Pernicious Anaemia Society

32,622 members23,978 posts

Recently diagnosed with Low B12 / Folic acid levels

Jackwalker0799 profile image
16 Replies

Hello Everyone,

I would just like to post my story on here and get some advice from like-minded people with more knowledge than myself.

For some context on myself, I am a 23 year old Male from the UK.

Around three weeks ago, I was diagnosed with low b12 and folic acid levels, this was off the back of symptoms such as; Heart Palpitations, Brain Fog, lack of mental clarity, pins and needs, balance / walking issues and daily constant headaches / pressure.

I believe my reading to be around 130 and I am not sure on the folic acid reading.

I was then prescribed daily 1000mg tablets of Cyano B12 and 1 daily tablet of folic acid, which I have been taking since. Initially, when taking the tablets I began to feel better and the brain fog lifted and I generally felt like I was making a way to recovery.

Then around a week later, I began to feel worse again, I started getting bad heart palpitations [ where by lying down was near enough unbearable ] and the brain fog and lack of mental clarity returned [ I just always feel weird and out of place ] .

After reading around some forums, I was switched to taking sublingual Hydroxy B12 under the tongue for the past 4 days or so and don't notice a difference.

My questions are;

-Do I have PA? I was never told off the doctor what caused / is causing my low B12 and Folate levels

-Am I on the right meds for recovery? Should I not be taking injections? If I was to take injections, would I still take the daily B12 too?

-Is the feeling of better, then worse normal? I think I'm feeling worse due to my anxiety being heightened by the B12 - but I am not sure.

Any help / advice is greatly appreciated.

Best

Jack.

Written by
Jackwalker0799 profile image
Jackwalker0799
To view profiles and participate in discussions please or .
Read more about...
16 Replies
Nackapan profile image
Nackapan

Sounds like your body needs more b12.

Anxiety can be another symptom on the long list.

B12 shoukd be treated before high dose prescribed folate .

You may be in a lower folic acid dose??

Its often reported on here after a good ini response it csn change.

I was told

No quick fix by a neurologist.

G.p thought a loading dose of b12 injections was a quick fix. Wasn't

As far as Pernicious anaemia.

The main test used is the

IFAB test ( intrinsic factor antibody test)

This picks up around 50% of those with pA so if negative shoukd not be used to stol b12 treatmrnt .

Once on supplements blood levels of b12 mean nothing as coukd simply be in your blood but not reaching cell level.

Some ,a few manage on high dose oral b12 as if you can't absorb.

There is 'passive absorption of about 1%

Noobode really knows definitely as little research.

A drive at present to reduce b12 injections ignorantly in gp practive at present in the NHS .

Ive fought several rounds to kerp my prescription.

Get all the tests you can for a diagnosis / cause and to rule out other things .

Keep a paper record of blood test results.

Keep a log of symptons .

Keep taking high dose b12 .

If symptons persist go back to Gp.

Get a referral

Discuss b12 injections Loads of info on this site

PAS

Martyn Hooper books

Do push to get tests and treatment

You are young . Low b12 and folate been found

so ifnnot a vegan an absorption problem

Some drugs reduce absorption

As does chrohns ect

Go by symptoms

Hope it goes well

Sleepybunny profile image
Sleepybunny

Hi and welcome to the forum.

If you have the time and energy, I suggest spending some time reading about PA and B12 deficiency as it's not always as well understood by health professionals as it should be.

I tend to post a lot of info so take at least a week to sift through it.

Some links I post may have details that could be upsetting.

I'm not medically trained.

"I was never told off the doctor what caused / is causing my low B12 and Folate levels"

If you're eating a diet that has plenty of B12 rich and folate rich foods then it's possible that there is an absorption problem in the gut.

Have you asked the GP face to face or in a letter, what they think the cause of your low b12 and low folate is?

Have you accessed your medical records to check what doctor wrote at time of diagnosis of low b12, low folate?

Accessing Health Records

patients-association.org.uk...

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

If GP suspects diet but you know your diet is B12 and folate rich, I suggest writing out a typical weekly diet, all food and drink, to discuss with GP.

If GP suspects an absorption issue , I would expect them to at least test you for PA (Pernicious Anaemia) and coeliac disease.

There are many possible causes of B12 deficiency. See links below.

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

Next link about causes is from a Dutch B12 website

b12-institute.nl/en/causes-...

If you suspect PA or get a PA diagnosis, worth joining and talking to PAS who can offer support and pass on useful info.

PAS membership is separate to membership of this forum.

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....

I have also read that a pepsinogen test may be help in diagnosis of PA.

PAS website has lots of useful leaflets/articles and a page for health professionals. Some PAS members print off articles for their GPs and your GP may find it helpful to look at PAS page for health professionals.

pernicious-anaemia-society....

pernicious-anaemia-society....

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

b12deficiency.info/what-to-...

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 being under treated for B12 deficiency with neuro symptoms present.

NHS Complaints

patients-association.org.uk...

Care Opinion website

People can leave reviews/comments about their health experiences.

Comments can be anonymous.

careopinion.org.uk/

Local MP or devolved representative may be worth talking to if struggling to get adequate treatment.

A few go to the Press/other media. This is likely to affect GP/patient relationship but can be effective.

Newspaper article about patient struggling to get B12 treatment in Scotland and a positive follow-up story

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

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

I will post more later.

Sleepybunny profile image
Sleepybunny in reply toSleepybunny

As you're young, it's possible that your GP may not consider the possibility of PA (Pernicious Anaemia) as it's sometimes thought of as a disease that mainly affects older adults.

PA can affect babies,children, teenagers, young adults, all ages. More info on PAS website.

If I had to give just two pieces of advice, they would be

1) Always get copies of, or access to all blood test results and if you're told everything is normal/no action, check for yourself. I found abnormal and borderline results after being told everything was normal.

2) Track down the local B12 deficiency guidelines for your ICB (Integrated Care Board) or Health Board and compare them with BNF, BSH and NICE CKS links below.

UK B12 documents

NHS article about B12 deficiency (simply written)

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

BSH Cobalamin and Folate Guidelines (detailed, aimed at health professionals)

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

Summary of BSH Cobalamin and Folate Guidelines (main points from above document)

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 stands for National Institute for Health and Care Excellence

NICE CKS (Clinical Knowledge Summary) B12 deficiency and Folate deficiency

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

There are currently new NICE guidelines in development for Pernicious Anaemia and B12 deficiency. These should be published in 2023.

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

If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment(over 40 pages).

"prescribed daily 1000mg tablets of Cyano B12 and 1 daily tablet of folic acid"

You mention both low b12 and low folate.

Vital that both deficiencies are treated, with B12 treatment started first.

Treating folate deficiency without treating B12 deficiency may lead to neurological problems.

I'm not medically trained but am concerned about whether oral B12 treatment will be enough for you if there's an absorption problem.

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.

CCGs (Clinical Commissioning Groups) in England were replaced by ICBs (Integrated Care Boards) on July 1st 2022. It's likely that ICBs will take on the clinical guidelines of the CCGs they replaced.

Each ICB/Health Board in UK is likely to have its own local guidelines on treatment/diagnosis of B12 deficiency.

To find your local B12 deficiency guidelines

1) Try a search of forum posts using terms "local guidelines"

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

3) Submit a FOI (Freedom of Information) request to ICB/Health Board asking for a link to or a copy of their local B12 deficiency guidelines.

Read blog post below if you want to know why I urge UK forum members to find out what's in their local guidelines.

b12deficiency.info/gloucest...

It's about the guidelines in Gloucestershire and I must admit that when you mentioned you were being treated with 1000mg oral cyanocobalamin, I thought I hope you're not in Gloucestershire.

Two useful B12 books

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

Martyn Hooper is the chair of PAS. UK BNF treatment info in book is out of date. See BNF hydroxocobalamin link.

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

Very comprehensive with lots of case studies.

Will post more later...

Sleepybunny profile image
Sleepybunny in reply toSleepybunny

The NICE guidelines Coeliac disease below indicate that anyone with unexplained B12, folate or iron deficiency should be tested for coeliac disease.

nice.org.uk/guidance/ng20

If you had a negative result in coeliac tests in past then check GP followed recommended diagnostic process in NICE guidelines, some don't.

More info on Coeliac UK website.

coeliac.org.uk/home/

Misconceptions (wrong ideas) about B12 deficiency

Many of us on this forum have met doctors and other health professionals who have wrong ideas about PA and B12 deficiency.

I think it's helpful to know some of the common wrong ideas they have. See links below.

B12 article from Mayo Clinic in US (research article - detailed)

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.

Misconceptions about a B12 deficiency

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

stichtingb12tekort.nl/engli...

UK blog post that mentions misconceptions about B12 deficiency

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

UK blog post about being symptomatic for B12 deficiency with a normal range serum (total) b12 result.

b12deficiency.info/your-ser...

Diagnosis and Treatment Pitfalls

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

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

Cherylclaire profile image
CherylclaireForum Support in reply toSleepybunny

Strangely, Sleepybunny , I have a copy of an excerpt from an old book here, regarding Pernicious Anaemia, as it was then understood:

" Etiology. - ..... It occurs in males more than females (proportion about two to one), and usually between the ages of twenty-five to forty years..... "

Wheeler and Jack's Handbook of Medicine (Jan 1932).

(This of course may simply be because men of an age to be of use in National Service were given thorough medicals, but interesting statistics nonetheless. You see only what you look for after all. )

Sleepybunny profile image
Sleepybunny

Apologies for firing so much information at you, maybe read a bit each day for a week or so.

I suffered for years from unrecognised B12 deficiency and want forum members to have the info they need to fight ignorance.

"off the back of symptoms such as; Heart Palpitations, Brain Fog, lack of mental clarity, pins and needs, balance / walking issues and daily constant headaches / pressure."

Does your GP have a full list of all your symptoms, especially every neurological symptom and definitely any symptoms affecting your spinal area?

Symptoms of B12 Deficiency (folate deficiency also mentioned)

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

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

b12-institute.nl/en/symptom... (from 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.

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....

Blog post from Martyn Hooper's blog, mentions spinal cord damage.

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

I'm shocked that you have been put on oral tablets when you list some serious neurological symptoms.

(If you're in Gloucestershire...I'm not shocked as their treatment pattern puts most people onto oral cyanocobalamin. )

The BNF hydroxocobalamin link outlines two patterns of treatment

1) for those without neuro symptoms

2) for those WITH neuro symptoms

bnf.nice.org.uk/drugs/hydro...

I would expect you to be on the pattern for those with "neurological involvement".

Have you been referred to any specialists?

NICE guidance Suspected Neurological Conditions

nice.org.uk/guidance/ng127

NICE when to refer B12 deficient patient to neurologist/haematologist/gastro-enterologist

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

Referrals are expensive for GP practices.

If GP is not keen to refer, you could ask them to write to a local haematologist asking for advice on how to treat you. Seeing or having contact with a specialist is no guarantee of better treatment as they can also lack understanding of B12 deficiency.

More about causes

Have you been tested for H pylori infection?

patient.info/digestive-heal...

Any exposure to nitrous oxide?

Nitrous oxide turns B12 into a form that the body cannot use so patient develops B12 deficiency symptoms.

Nitrous Oxide

gov.uk/drug-safety-update/n...

NICE guidelines Nitrous Oxide ( see side effects section)

bnf.nice.org.uk/drug/nitrou...

Any chance of internal parasites eg fish tapeworm?

Do you eat raw/uncooked fish eg sushi/smoked salmon etc.

Have you lived or worked in an area where internal parasites are common?

One sign of a potential internal parasite infection is an increase in eosinophils, a type of white blood cell. Eosinophil result can be found in Full Blood Count results.

Sleepybunny profile image
Sleepybunny

More about oral treatment

Some on this forum manage their PA or B12 deficiency from other causes with high dose oral tablets but some including me report that oral treatment is ineffective.

The evidence that oral treatment is as effective as B12 injections to my mind is not convincing. There needs to be a lot more research in my opinion.

Note on oral treatment - from B12 Institute Netherlands

(Units, ref ranges, treatment patterns may vary from UK)

b12-institute.nl/caution-no...

If you have time search online for the Cochrane review of oral b12 and B12 injections. detailed and aimed at researchers/health professionals.

Might be interesting to ask GP in a letter or conversation, why you are on oral B12 when you have neurological symptoms and BNF recommends injections.

GP can find BNF info on B12 deficiency online or in their BNF book Chapter 9 Section 1.2 and will have a copy on their desk /bookshelf.

Knowing the reason can help you fight for better treatment.

Symptoms Diary

I suggest you keep a daily symptoms diary,note any treatment you are given.

This could be evidence of improvement or deterioration in symptoms and may help GP/specialist work out how often and what type treatment is needed.

Good luck and keep asking questions,

SB

charks profile image
charks

I started off with 1000mg tablets and initially felt much better. But I didn't start getting back to 'normal' until I started taking very high doses of B12 diluted in water.

The problem is that the reserves of B12 stored in your liver have got dangerously low. Your body, for whatever reason, appears to have a broken mechanism for extracting B12 from your food.

When this happens your body can only obtain B12 via passive absorption. Which is basically osmosis and is very inefficient and slow. Your body isn't able to extract enough B12 from the tablets before they pass through your gut. Which why I find that diluting 5000mg sublingual liquid in water and drinking it throughout the day works for me. But I take at least 15000mg everyday. I think you should try this. It isn't guaranteed. Everyones body is different and some people have to have injections.

Pickle500 profile image
Pickle500

Hi Jack

Thanks for outlining your situation here.

To answer your questions:

-Do I have PA? I was never told off the doctor what caused / is causing my low B12 and Folate levels

Are yiu a vegetarian or vegan? Do you have any gut related conditions or symptoms? Any family history of PA?

-Am I on the right meds for recovery? Should I not be taking injections? If I was to take injections, would I still take the daily B12 too?

It doesn't sound like it. If your levels showed as deficient you should've been prescribed at least 6 injections. And 130 is low by most standards. Why didn't the Dr offer injections as per NICe and NHS guidelines?

-Is the feeling of better, then worse normal? I think I'm feeling worse due to my anxiety being heightened by the B12 - but I am not sure.

Yes its very common. But its usually based on a theory of 'reversing out' i.e. your symptoms are flaring up and repairing in the reverse order they started.

What you've described is different. And its likely because your levels are not gettint up high enough quickly enough.

You really do need injections asap. Can you go back to the GP to explain and tell them you're getting worse and think you need injections?

GPs are generally hopeless with B12. Shocking and sad to realise but its true. You must assume they're doing it wrong and push them for injections

Jackwalker0799 profile image
Jackwalker0799 in reply toPickle500

Hi Pickle - really appreciate the response.

I am going to ring my surgery on Tuesday and ask for an appointment with a GP regarding my B12, as I feel to have just been thrown tablets and given no substance or guidance [shock horror NHS being poor]

What am I best to ask? Here is my current plan:

- Ask for copies of my blood test [which indicated the b12 deficiency]

-Ask why I am not on a loading dose of B12 via injections

-Ask for a test to see if I suffer from PA

Any else I should ask for? If the doctor does not agree to put me on injections, I know someone who does them local to me for £10 a shot, I will simply pay for them myself, I am not bothered about the price, as they say, you cannot put a price on your health.

Thanks once again Pickle, really really appreciate your help.

Best

Jack

Pickle500 profile image
Pickle500 in reply toJackwalker0799

Sure, you can easily call up the surgery and ask if they could please send you a copy of your blood test results by email.

Once you have them you could make an appointment with the GP to ask why you haven't been put in injections and state that you don't know why you would have B12 deficiency as you have a varied and meat based diet.

You are quite young for PA so it could be a gut issue like coeliac disease, but either way you'd like them to investigate why you're deficient. And can they please run an IFAB (intrinsic factor Antibodies) test to check for PA.

Great - £10 is cheap for private injections, quite a bargain compared to others. Make sure to ask if they can do every other day for you as you want the levels up quickly.

Good luck

Jackwalker0799 profile image
Jackwalker0799 in reply toPickle500

I am going to start my 2 weeks of loading doses today. 3 a week for 2 weeks so 6 in total.

As the doctors are not doing this, what is the best course or action after these two weeks? 1 a week or?

Also, i have seen conflicting reports on the taking of folic acid, i am currently on 5mg a day, should i carry on taking this?

Thanks

Pickle500 profile image
Pickle500 in reply toJackwalker0799

Great to hear, well done. I would continue with 1 a week if you can.

Did you have a folic acid deficiency? You should generally start your B12 injections before you start folic acid too. And I would only take 5mg with a proven deficiency, otherwise you could head into trouble and not benefit from the B12.

Jackwalker0799 profile image
Jackwalker0799 in reply toPickle500

Thanks Pickle, I just remembered, I call recorded my conversation with the doctors [ I have had bad experiences in the past ]

Going back through the call, he says I am low in B12 reading is 130.

He also says that my folic acid, folate, is low. Usual reading is between 3.14, but after this, I cannot hear what he says I am, as I am breathing over what he says.

So it is clear that I am below 3.14 on my folate, would you still take the daily 5mg of Folic Acid on this basis?

Thanks

Sleepybunny profile image
Sleepybunny in reply toJackwalker0799

Might be worth sending GP a letter outlining cocnerns, to reach them prior to the appointment so they have time to prepare.

See letter writing link in my first reply.

Or if you're not happy with the appointment, a follow up letter to GP afterwards.

Technoid profile image
Technoid

As others mention, upping frequency of B12 injections is the main thing. There are some other things that you can look into that may help smooth the treatment process somewhat, they are described in my treatment (supplementation) guide here: healthunlocked.com/pasoc/po...

Not what you're looking for?

You may also like...

Low B12 & Folic Acid

Hi I have just been diagnosed by my doctor as having low b12 and low folic acid. She said i need to...
Nobby profile image

Vit B12 and folic acid

Hi everyone My names Amy, i wasnt sure what community to post this is as i havent been diagnosed...
Louise9999 profile image

FOLIC ACID

I was told that B12 injections would not be effective if B9 was not supplemented? I was advised to...
Bellabab profile image

Folic acid and other supplements

I have monthly B12 injections and I'm looking at improving my health as much as possible. I've...
JanD236 profile image

B12 folic acid please help me

So I inject b12 daily as so many symtoms Just not getting better Gp says my b12 is high in range...
Milley2 profile image

Moderation team

See all
Gambit62 profile image
Gambit62Administrator
Foggyme profile image
FoggymeAdministrator
taka profile image
takaAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.