What to test for: I was diagnosed with... - Pernicious Anaemi...

Pernicious Anaemia Society

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What to test for

5 years ago•3 Replies

I was diagnosed with a b12 deficiency back in March after showing up with a 166 and folate of 18.8. I did weekly injections for 8 weeks and was retested and went to 231 and 9.6. They then switched me to monthly injections only to have my b12 to go to 232 and folate at 11.5. My gp has moved me back to every other week injections for another 3 months and wants to test me again in another 2 months. Wondering where to go from here. Still having some mild PN and fatigue. I've been on antidepressants for years and would love to find some answers or improvement.

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Dogsdogs89

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3 Replies

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fbirder5 years ago

Forget about chasing numbers. Persuade your GP to give you the correct dose of B12 - Injections often enough to minimise the symptoms.

Nackapan5 years ago

Suprised your levels wernt alot higher on injections.

Go by how you are

Sleepybunny5 years ago

Hi,

If you're in UK, I suggest reading documents below.

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...

Flowchart outlines process for diagnosing PA and Antibody Negative PA in UK

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

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

BNF guidance on treating b12 deficiency changed recently.

pernicious-anaemia-society....

BNF Children

bnfc.nice.org.uk/drug/hydro...

NICE CKS

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

UK guidelines suggest that retesting of B12 levels once treatment has started is unnecessary.

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). Book does not show updated BNF info.

"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".

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

What does your doctor think is causing the low B12?

Have you been tested for PA (Pernicious Anaemia), Coeliac disease, H Pylori infection, internal parasites eg fish tapeworm?

Do you eat a diet with plenty of B12 rich foods eg meat, fish, dairy, eggs, foods fortified with B12?

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

PAS support groups in UK