B12 Deficiency

[Rachel20]

Hi everyone.hope you are all well.Just wanted some help.I have just been diagnosed with b1w deficiency.My results were 54.4.Havent seen the gp yet appointment ovwr 2 weeks away bit have been prescribed folic acid tablets.In first consultation was told if b1w is low may have to have injections.Just wondered if anyone was prescribed tablets instead.Also the go wants to see me about my other test resulta.I had a full blood count blood test and just wondered if this would test for pernicios anemia also.As i know you shouldnt take folic acid tablets unless pernicious anemai had been ruled out.Thank you in advance

[JanD236]

Hi Rachel. It would be helpful to others replying if you were able to provide the range relating to your B12 result. This should be shown in brackets after the result of 54.

Also, is the 54 the result for serum B12 or Active B12/holotranscobalamin?

If you have Pernicious Anaemia the correct treatment is to have injections as you’re unable to absorb B12 via digestion.

The full blood count wouldn’t normally test for Pernicious Anaemia but it could reveal whether or not low folate and/or B12 has caused you to have larger than normal blood cells/Anaemia.

The specific test for Pernicious Anaemia is for intrinsic factor antibodies. Having said that, if the result is negative it isn’t conclusive that you don’t have PA. If it’s positive however, it’s certain that you have PA.

You are correct that folate supplements shouldn’t be taken until B12 injections have been started.

[Cherylclaire Forum Support in reply to JanD236]

There is a roughly 50/50 chance that those with PA will have a positive intrinsic factor antibody (IFAb) test result. Martyn Hooper, the founder of the Pernicious Anaemia Society, had to have three tests before getting a positive result. As some GPs are unaware of this, there is the added problem of having PA ruled out early and erroneously by a GP on a single negative result.

If possible, get your ferritin and vitamin D and thyroid checked too - these are often also affected. Along with folate, these were monitored for me for several years after B12 treatment started - I followed GP's advice re supplementing and eventually the results improved and stabilised, but this did take a while.

Yes, leave folate supplements until B12 deficiency addressed.

There are many causes for B12 deficiency, and ruling PA in/out not as easy as you might think. Most important that you get the B12 deficiency treated correctly.

FBT could pick up blood cell abnormalities - but not everyone has this. Usually, IFAb test or gastric parietal cell antibody test given, although problems with both when trying to determine PA status.

A methylmalonic acid ( MMA) test can be used as a secondary confirmation if there is a suspicion of B12 deficiency, without a low serum B12 test result - but MMA should drop down rapidly into normal range once B12 injections administered. A homocysteine test could be used for the same purpose. Neither of these should be necessary in your case, since you have already had your deficiency confirmed.

There is plenty of support here - but if you put test results on here, it makes it easier if you post results with the unit of measurement used and the normal range given. These can have regional differences. A serum total B12 result could be measured in pmol/L or ng/L. An active B12 test would measure only the "live" B12 or holotranscobalamin (HoloTC).

[wedgewood]

The following might be of help to you Rachel20

How to diagnose Pernicious Anaemia  by  elimination, when you have B12 deficiency symptoms . ( All these points are causes for B12 deficiency, but if you have Symptoms of B12 deficiency which you can look up on the internet, and there are many , the most common reason is  Pernicious Anaemia , which is an autoimmune condition. The body produces antibodies which destroy the parietal cells in the stomach . These cells produce the Intrinsic factor and stomach acid , both of which are necessary for the absorption of Vitamin B12 . 

So………..

if you are not vegan or strict vegetarian.

If you do not take Metformin or PPIs ( proton pump inhibitors e.g.Omeprazole ) any  acid-negating preparations and other pharmaceutical drugs ( look up on the internet ) 

If you do not abuse Nitrous Oxide ( laughing gas) 

If you do not have fish tapeworm 

If you have not had surgery to your digestive system, then you probably have P.A. Then , also if you can tick 4 of the following ———

Low serum B12 

Symptoms of  B12 deficiency (Google to find  out - and there are many symptoms.

Gastric atrophy restricted to the corpus and fundus  

Intestinal metaplasia in the stomach ( can be caused by Helicobacter Pylori.infection )

Macrocytic anaemia ( enlarged red blood cells) and not enough normal sized 

Hypergastrinaemia (various causes, including Helicobacter Pylori infection .)

  Of course a positive result for an Intrinsic Factor Antibody test(  IFAB) is conclusive proof of Pernicious Anaemia, BUT, in about 50% of P.A. patients , the test comes back as negative. !!!! Many doctors do not know this ,and will unfortunately assume that a patient who tests negative does not have P,A,

High Homocysteine occurs in untreated or insufficiently treated Pernicious Anaemia patients , but there are also other causes for it . 

High levels of Methylmelonic acid can  also be indicative of Pernicious Anaemia.( In blood or urine ) 

Don’t forget that this information does not come from a medical source , but from someone who went undiagnosed with  pernicious anaemia for many years , and has an irreversible symptom for that reason . By trial and error ( and gross financial depletion ) I have arrived at the above .  I did get a conclusive diagnosis.I was  lucky to get a positive IFA test , obtained through a private doctor ,which was acknowledged by my GP , but I could not get sufficient injections ( only allowed 1 every 3 months ) So now I self inject weekly, and keep well, but  have to cope with the irreversible symptom . 

Reading posts on the forum has been very informative. Best wishes . 

You can have pernicious Anaemia even with a normal VitaminB12 reading . This is called functional deficiency , caused by Intrinsic Factor Antibody interference with the Assay .

Up to 80% of B12

How to diagnose Pernicious Anaemia 

by  elimination, when you have B12 deficiency symptoms . ( All these points are causes for B12 deficiency, but if you have Symptoms of B12 deficiency hich you can look up on the internet, and there are many , the most common reason is  Pernicious Anaemia , which is an autoimmune condition. The body produces antibodies which destroy the parietal cells in the stomach . These cells produce the Intrinsic factor and stomach acid , both of which are necessary for the absorption of Vitamin B12 . 

So………..

if you are not vegan or strict vegetarian.

If you do not take Metformin or PPIs ( proton pump inhibitors e.g.Omeprazole ) any  acid-negating preparations and other pharmaceutical drugs ( look up on the internet ) 

If you do not abuse Nitrous Oxide ( laughing gas) 

If you do not have fish tapeworm 

If you have not had surgery to your digestive system, then you probably have P.A. Then , also if you can tick 4 of the following ———

Low serum B12 

Symptoms of  B12 deficiency (Google to find  out - and there are many symptoms.

Gastric atrophy restricted to the corpus and fundus  

Intestinal metaplasia in the stomach ( can be caused by Helicobacter Pylori.infection 

Macrocytic anaemia ( enlarged red blood cells) and not enough normal sized 

Hypergastrinaemia (various causes including Helicobacter Pylori infection .)  Of course a positive result for an Intrinsic Factor Antibody test(  IFAB) is conclusive proof of Pernicious Anaemia, but , in about 50% of P.A. patients , the test comes back as negative. 

High Homocysteine occurs in untreated or insufficiently treated Pernicious Anaemia patients , but there are also other causes for it . 

High levels of Methylmelonic acid can  also be indicative of Pernicious Anaemia.( In blood or urine ) 

Don’t forget that this information does not come from a medical source , but from someone who went undiagnosed with  pernicious anaemia for many years , and has an irreversible symptom for that reason . By trial and error ( and gross financial depletion ) I have arrived at the above .  I did get a conclusive diagnosis.I was  lucky to get a positive IFA test , obtained through a private doctor ,which was acknowledged by my GP , but I could not get sufficient injections to keep symptoms at bay . My numb feet were deemed “idiopathic “ ( only allowed 1 every 3 months ) So now I self inject weekly, and keep well, but  have to cope with the irreversible symptom . 

Reading posts on the forum has been very informative. Best wishes . 

You can have pernicious Anaemia even with a normal VitaminB12 reading . This is called functional deficiency , caused by Intrinsic Factor Antibody interference with the Assay .

PERNICIOUS ANAEMIA IS THE MOST COMMON CAUSE OF VITAMIN B12 DEFICIENCY. 

Up to 80% of a B12 blood serum reading can be of inactive B12 , which cannot be absorbed . ………

Much greater research is needed on B12 deficiency. ……..

Best wishes .

[wedgewood]

Sorry that it was sent twice !

[Sleepybunny]

Hi,

Welcome to the forum.

If PA (Pernicious Anaemia) is a possibility, it's worth joining and talking to PAS who can offer support and pass on useful info.

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've also read that a pepsinogen test might be useful in helping to diagnose PA.

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...

Blog post about being symptomatic for B12 deficiency with a normal range serum B12 result

b12deficiency.info/your-ser...

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 (Pernicious Anaemia Society).

Some of the UK treatment info in book is out of date.

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

Very comprehensive with lots of case studies.

Above books may be available from your local library service in UK.

Some UK B12 articles/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...

BNF Hydroxocobalamin

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

NICE CKS B12 deficiency and folate deficiency (aimed at health professionals/quite easy to read)

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

There are currently new NICE guidelines in development for Pernicious Anaemia and B12 deficiency. These should be published in Nov 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 (lots of pages).

Local B12 deficiency guidelines

I usually urge UK forum members to find out what's in the local B12 deficiency guidelines for their ICB (Integrated Care Board) or Health Board. If you can't find them online or by searching forum posts then best bet is probably to submit a FOI (Freedom of Information) request to the ICB or Health Board asking which B12 deficiency guidelines are used locally and for a link to or copy of them.

Read blog post below if you want to know why I suggest this.

b12deficiency.info/gloucest...

Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, UK B12 documents, more B12 books, B12 films, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.

Some links may have details that could be upsetting.

Some of the info will be specific to UK.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

Link to thread about Patient Safety, has useful links for those who've had or are having difficult health experiences.

healthunlocked.com/pasoc/po...

I'm not medically trained.