B12 level

[251259]

Hi ,

I wonder if someone could tell me at what level I should start taking B12. My mother, who is 85, started taking this a few years ago after feeling awful for years and having to push her doctor.

For the last few years I have felt very unwell and has numerous test, including B12, but nothing can be found. I am getting really despondent as I feel so under the weather and have no energy.

Any help or advise woudl be appreicated.

[fbirder]

What tests have you had?

What level was your B12 (with units and ranges)?

[251259 in reply to fbirder]

I will check later to day

[251259 in reply to 251259]

Had a look and it was 2 years ago that I had the test, so maybe I should have another now.

[clivealive Forum Support]

Hi 251259 there is no age limit - a lot will depend on the cause if you are B12 deficient but as fbirder says try to find what your levels are.

I'm "guessing" that you are in (or approaching) your 60s. As we get older the acid level in our stomach reduces and a high level is essential to help process the B12 from our food and this may be just one cause.

I wish you well

[251259 in reply to clivealive]

thank you. At present I have acid reflux so maybe this is connected

[clivealive Forum Support in reply to 251259]

Yes if you have been prescribed or use a PPI such as Lansoprazole to reduce acid levels.

[251259 in reply to clivealive]

Hi Clivealive, yes I had cancer about 10 years ago and had Lansoprazole prescribed at the same time. Recently I was put on 2 courses of omeprazole. So maybe connected?

[clivealive Forum Support in reply to 251259]

Artificially reducing your stomach acid level will adversely affect your ability to absorb B12 from your food.

Some people suggest adding Lime Juice or Apple Cider Vinegar to a glass of water with meals to increase acidity.

[Sleepybunny in reply to 251259]

The symptoms of low stomach acid (hypochlorydia) are very similar to the symptoms of high stomach acid.

Some on forum have been told they have high stomach acid only to find out later that it was low stomach acid.

drmyhill.co.uk/wiki/hypochl...

[251259 in reply to Sleepybunny]

Oh now that is very interesting.

[Sleepybunny]

Hi,

I am not medically trained.

Have you spoken to your GP about concerns about B12?

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...

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...

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

BMJ B12 article

bmj.com/content/349/bmj.g5226

BNF

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

NICE CKS

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

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).

"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 (USA authors)

Very comprehensive with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

PAS support groups in UK

pernicious-anaemia-society....

B12 Deficiency Info website

b12deficiency.info/

[251259 in reply to Sleepybunny]

Thankyou for that information. I have been to the doctor and had B12 tests but says all is fine.

[JaninaWalker in reply to 251259]

Do you ask for copies of results every time and keep your own file? That is your right to have them. Also doctors often say things are fine as long as you are anywhere in the 95% range, which is not the optimal range. Doctors are trained to look for outliers above or below that range and just simply say everything l else is fine. They also do not wish to raise concerns, so saying someone is fine is pretty standard.

[Sleepybunny]

"but says all is fine"

I spent years slowly deteriorating to the point I was scared I was developing dementia and permanent neurological damage.

All but one of my B12 results over years was within range but my symptoms were typical of B12 deficiency.

The UK B12 documents I listed in post above make it clear that if a person has the symptoms of B12 deficiency but B12 is within range, they should be treated.

I learnt to my cost that B12 deficiency from all causes (not just Pernicious Anaemia) is not always well understood by doctors.

Most important advice I ever got was to always get copies of all blood test results.

Do you have copies of all yours, particularly B12, folate , ferritin or other iron tests and Full Blood Count? There can be useful clues on these tests as to what might be causing symptoms.

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...

Have you been tested for PA (Pernicious Anaemia)?

In UK, this would be an Intrinsic Factor Antibody test. IFA test is not always reliable and it is still possible to have PA even if IFA result is negative.

Have you been tested for Coeliac disease?

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

NICE guidelines Coeliac Disease (2015 version)

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

Coeliac Blood Tests

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

Have you been tested for H Pylori infection?

patient.info/digestive-heal...

Are you on any medication that may affect B12 levels (or folate levels) eg PPI medication?

pulsetoday.co.uk/clinical/c...

There are other drugs that may affect B12 levels and folate levels.

Any exposure to nitrous oxide?

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

Family Medical History

"My mother, who is 85, started taking this a few years ago "

Does your mum have a PA or Coeliac diagnosis? These can run in families.

Is there a family history of auto-immune conditions?

[Bonjourtristesse]

Yes me too. I have spent 20 years on and off complaining of fatigue to be told ‘all is fine’. It wasn’t until I paid for private blood tests so that I could actually see them that I realised ‘all is fine’ meant my b12 level was around 220 pg/ml (and that was after oral supplementation). And I was not fine at all.