do I have a b12 deficiency please help - Pernicious Anaemi...

Pernicious Anaemia Society

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do I have a b12 deficiency please help

Bronners36 profile image
3 Replies

Hi everyone

Im very new here and would love some advice. I have been struggling with symptoms for a year and doctors have put it down to my hypothyroidism but levels I feel are better than ever.

Had a recent test done for vit b12 but need some advise can you help me?

Serum vit b12 289ng range 220-700

Serum folate 9.6ug range 2.6-17.3

MCV 100FL range 80.0-99.0

MCH 33.4PG range 27.0-32.0

One of my biggest complaints is sweating some nerve pain racing heart bad sleeping vision problems ringing ears. Im desperate to get better and doctors don't think its vit b12 but these levels don't sit well with me.

Thank you so much

This pic is a reading from two weeks previous to above results.

I would be so grateful for some support i have lost confidence in my gp

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Sleepybunny profile image
Sleepybunny

Hi,

Sorry to read you have lost confidence in your GP.

Perhaps you could seek support and info from following websites...

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

B12 Deficiency Info website

b12deficiency.info/

B12d.org have some online meetings during pandemic.

b12d.org/event

UK B12 documents/articles

BSH Cobalamin and Folate Guidelines (published 2014)

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

BNF

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

In UK, guidelines suggest that if patients are symptomatic for B12 deficiency with an in range B12 result they should be treated.

Useful B12 book

"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 BNF treatment info in book is out of date. See BNF link up page for up to date info.

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

I wrote very detailed replies on another forum thread with links to B12 deficiency symptoms lists, causes of b12 deficiency, info about tests for PA, other useful blood tests, list of B12 books, list of B12 websites, more UK B12 documents, letters to GP about B12 deficiency and other B12 info which you might find helpful.

healthunlocked.com/pasoc/po...

If you're not in UK, it's helpful to know which country you are in, as treatment and guidelines vary between countries, even the type of b12 used can vary.

Many UK forum members have reported that their B12 treatment has been affected by impact of pandemic.

I am not medically trained.

Bronners36 profile image
Bronners36 in reply to Sleepybunny

Thanks sleepybunny. I'm in the UK. I'll have a look at your links i much appreciate this. Im trying hard with a diet but don't want to take supplements until I try fight further with my doctors i speak with them again tomorrow. I feel a bit better with the new foods in place but I need more help from them. Your info with be a great help.

Thanks again

Sleepybunny profile image
Sleepybunny in reply to Bronners36

Hi again,

MCV 100FL range 80.0-99.0

MCH 33.4PG range 27.0-32.0

Your MCV and MCH are above range which is suggestive of macrocytosis, where red blood cells become enlarged.

B12 deficiency can lead to macrocytosis as can folate deficiency. There are other causes as well.

Link about "What to do next" if B12 deficiency suspected

b12deficiency.info/what-to-...

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...

Has GP at least tested you for PA and Coeliac disease?

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.

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

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

NICE guidelines Coeliac Disease

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

IF GP tests for Coeliac, check both recommended tests are done

1) tTG IgA

2) Total IgA

If being tested for Coeliac, patient should ideally be eating plenty of gluten in more than one meal per day for several weeks before blood is taken. This is to ensure that any Coeliacs have plenty of antibodies to gluten in their blood; increasing the chance of a positive result.

Coeliac Blood Tests

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

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

H Pylori infection?

patient.info/digestive-heal...

NICE guidelines H pylori

pathways.nice.org.uk/pathwa...

Click on blue boxes in flowchart for more info.

Exposure to Nitrous Oxide?

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

NICE guidelines Nitrous Oxide

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

Any chance of internal parasites eg fish tapeworm?

Do you eat raw or uncooked fish eg sushi, smoked salmon etc?

There are other internal parasites that can lead to B12 deficiency eg Giardia Lamblia.

Medicines/drugs

Some medicines and drugs have been associated in some studies with low B12 ( and some also with low folate) eg metformin, a diabetes drug and PPI drugs.

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

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