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Pernicious Anaemia Society

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Blood results

dinkyoodle profile image
dinkyoodle
•4 Replies

Hi all,

Thanks to everyone who commented on my recent question about b12. I do have results from bloods now. Just putting them up incase it offers any further insight 🤷 I have also posted in thyroid group relating to thyroid.

My worry is PA is so hard to confirm- maybe I should just start supplementing sublingual and see what happens. I have asked GP for more tests but I think I know what the answer will be. He told me to treat b12 with diet and OTC supplements if I wanted. I eat eggs, red meat, veg etc but gluten free to try and support thyroid health.

TSH 1.94 (0.35-4.94mu/L)

Folate 5.9 (2.7-15ug/L)

Serum B12 186 (187-883ng/L)

Ferritin 43 (23-300ug/L)

Vit D 28 (50-120nmol/L)

FBC

Total white cell 3.3 (4.0-10.0)

RBC 4.45 (3.8-4.8)

Haemaglobin est 127 (120-150)

Haematocrit 0.38 (0.36-0.46)

MCV 85 (83-101)

MCH 28.6 (27.0-32.0)

Platelet 231 (150-410)

Neutrophils 1.45 (2-7)

Lymphocytes 1.46 (1-3)

Monocyte 0.28 (0.2-1)

Eosinophil 0.09 (0.02-0.05)

Basophil 0.02 (0-0.10)

In 2016 B12 was 168 (130-1100ng/L) I wasn't supplementing then and diet not changed.

Many thanks😊

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Gambit62 profile image
Gambit62Administrator

Its difficult at best to draw any conclusions from the serum B12 tests above. Serum B12 is only accurate to 20% and the two results are within that range of accuracy so probably that you are just someone who naturally sits at that point - albeit a low point. If you had an absorption problem then you would have expected to see a significant drop in levels in that time. You don't have any signs of macro or microcytic anaemia.However, you vitamin D is low - symptoms do overlap and supplementing is recommended these days for people living in UK and norther Europe.

Cherylclaire profile image
CherylclaireForum Support

Back in early 2016, my folate (5.5) and ferritin (46.3) were about the same as your's, my B12 exactly the same. As just below range, and presenting with daily diarrhoea, lower back and hip pain, fatigue, hair loss and bleeding gums, I was given B12 injections and 3 months of ferritin and folate tablets.

I have no record of other results from that time. I am assuming my vitamin D was also low as I was later found to have osteoporosis of the spine -and so now get vitamin D on prescription.

Despite continuing injections, my MMA level remained raised for three years. DNA tests found no genetic reason for this. After a few months of more frequent injections, my MMA level dropped back into normal range finally.

Over the years I have seen specialists and had scans and tests to rule out anything else: thyroid, SIBO, Coeliac, etc. but do not have a PA diagnosis. Was not IFab positive, gastric parietal Ab was negative and homocysteine was normal.

We are all different.

How you feel is as important as numbers are.

How you look too: nurses later told me I was "grey" at the beginning: sufficient indicator that all is not well. It took a long while for improvements.

Sleepybunny profile image
Sleepybunny

Hi,

I had over 40 different typical symptoms of B12 deficiency including dementia type symptoms and symptoms affecting my spinal area with all but one of my B12 results well within range eg 300 - 500 ng/L.

UK guidelines indicate that people who are symptomatic for b12 deficiency with an in range serum (total) B12 result should be treated.

I am not medically trained.

Eosinophil 0.09 (0.02-0.05)

I note from your results that your eosinophil result is above range.

Eosinophils are a type of white blood cell.

One of the reasons for a raised eosinophil result is a parasitic infection eg fish tapeworm. There are other parasites besides fish tapeworm that can lead to B12 deficiency.

Has your GP considered the possibility of a parasite?

Search online for "parasites B12 deficiency" for more info.

More links to B12 info that may be of interest. I suggest you take a week or so to sift through the info so it's not so overwhelming.

Some links may have details that could be upsetting.

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

b12deficiency.info/what-to-...

Symptoms of B12 Deficiency

pernicious-anaemia-society....

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

Next link mentions symptoms of B12 deficiency and folate deficiency

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

Symptoms list (from B12 Institute netherlands)

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

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....

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

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....

PAS website has lots of useful articles and a page for health professionals that your GP may find helpful.

pernicious-anaemia-society....

pernicious-anaemia-society....

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.

Best to keep letters as brief, to the point and polite as possible. It's harder to ignore a letter in my opinion.

Keep copies of any letters sent or received.

UK B12 documents

NHS article about B12 deficiency (simply written, lacks detail in my opinion)

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...

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 Hydroxocobalamin

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

NICE CKS 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 next year (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 of info).

Local Guidelines

Each CCG (Clinical Commissioning Board/Health Board/NHS hospital trust in UK is likely to have its own local guidelines on treatment/diagnosis of B12 deficiency. Might be worth tracking down the local guidelines for your area of UK and comparing the info in them with BNF, BSH and NICE CKS links.

Some local guidelines have been posted on forum so try a search of forum posts using terms "local guidelines" or try an internet search using "name of CCG/Health Board B12 deficiency guidelines" or submit a FOI (Freedom of Information) request to CCG/Health board asking for access to or a copy of local B12 deficiency guidelines.

Have you been tested for coeliac disease?

Guidelines below suggest testing anyone with unexplained B12, folate or iron deficiency.

NICE guidelines Coeliac Disease

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

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).

UK treatment info has changed since book was published. See BNF hydroxocobalamin link.

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

Very comprehensive with lots of case studies.

Films and videos about PA and B12 deficiency

PAS conferences

pernicious-anaemia-society....

Films about B12 deficiency

b12deficiency.info/films/

Misconceptions (wrong ideas) about B12 deficiency

Sadly many of us on the forum have had the experience of meeting health professionals with misconceptions about B12 deficiency.

I suggest you find out some of the common misconceptions health professionals may have in case you meet a doctor, nurse or other health professional who has some.

Misconceptions about a B12 deficiency

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

stichtingb12tekort.nl/engli...

Blog post that mentions misconceptions about B12 deficiency

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

UK recommended treatment has changed since this blog post was written. See BNF hydroxocobalamin link.

B12 article from Mayo Clinic in US (aimed at researchers and health professionals)

ncbi.nlm.nih.gov/pmc/articl...

Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.

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

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

dinkyoodle profile image
dinkyoodle in reply to Sleepybunny

Thank you- so much info to digest. I will do as you suggest and try to get my head around it all while I wait to hear back from the GP 😊

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