High monocyte? : Since there are some... - Pernicious Anaemi...

Pernicious Anaemia Society

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High monocyte?

Bates2587
Bates2587

Since there are some knowledgeable people on this forum I'm curious if anyone knows what high monocyte count means?

It was on my daughters blood test. She's 8 years old and just had some b12 loading injections in January. I did ask her gp what it meant/cause but she wasn't concerned because other factors weren't there.

She is under the care of a paediatrics now but the haemologist says the the low b12 probably isn't the sole cause of her issues.

18 Replies
Foggyme
FoggymeAdministrator

Bates2587. I’ve had to delete the image contains your result because it contains your GP's name.

Please could you remove any personally identifying information so that this is not visible and so that these individuals are not identified (safeguarding issue) and re-post your results.

Many thanks

Bloods edited

Monocyte count
Foggyme
FoggymeAdministrator in reply to Bates2587

Bates2587 - it would be better to reinsert the image on your post (some may just read your post, assume the bloods haven’t been entered - and read no further). 👍

Bates2587
Bates2587 in reply to Foggyme

Doh! Ok

Gambit62
Gambit62Administrator

monocytes are white blood cells and they are part of the bodies immune system.

this article explains more about monocytes

forthwithlife.co.uk/biomark...

Please note that this forum is not a substitute for professional legal advice, If you have questions about anything relating to your daughter's medical record and treatment then I would hope that her doctors should be able to answer. I know it can sometimes be difficult to ask questions particularly if they seem busy but they should be the best people to answer.

High monocytes don't directly relate to B12 deficiency as far as I am aware

Bates2587
Bates2587 in reply to Gambit62

Thank you. I don't know why she has such low B12. I did ask her gp but she said she didn't know the reason for them being high. I worry that they're missing something.

Gambit62
Gambit62Administrator in reply to Bates2587

It is natural that you would worry.

The GP is a generalist and it sounds as if your daughter is now under specialists who may be in a position to provide more specific advice if you ask them.

Bates2587
Bates2587 in reply to Gambit62

She originally had her bloods tested because she has chronic stomach pains but no specific problem with her bowels. I did ask her paediatrian what about her stomach pains and he told me that she is probably just experiencing anxiety. I did ask the gp if monocyte levels could indicate inflammation somewhere and she said no. I wonder if she could suffer from colitis or crohns at her age (as I have UC). Or if celiac disease. She has a poor appetite now. She is a very anxious person around doctors so I'm not sure I want put her through test after test I I'm barking up the wrong tree.

Gambit62
Gambit62Administrator in reply to Bates2587

Monocytes are part of the defence mechanism against pathogens - ie bacyteria and the like so wouldn't expect them to be associated with inflammation.

Anxiety is a difficult thing and I can certainly appreciate anyone being anxious around doctors.

Is there any family history of migraines? Just asking because I am aware that migraines can manifest in younger people in the gut rather than as headaches - I certainly had a lot of gut issues and was a nervous child myself ... and really didn't like doctors. That's a bit of a left-field suggestion.

Link to set of podcasts by the national migraine centre - Series 1 Episode 10 covers migraine in children

Is your daughter booked in for maintenance doses of B12 - absorption problems can hit at any age though they are more common as you get older.

Have you been able to follow up with the haematologist?

Bates2587
Bates2587 in reply to Gambit62

She has a follow up consultation for April ish. His last letter indicated CFS which I'm not too happy with. She won't get follow up injections because he doesn't think she needs it. He said her intrinsic factor is negative and she doesn't have anemia so he doesn't think it a longstanding issue. I don't agree with this though. I said in the last appointment that I was giving her some folate tablets to help absorption and he laughed at me. He has given me a blood form for Mma and homocysteine but this is after she had finished her loading b12 injections so I'm reluctant to do this right now. Her b12 was 115ng and her ferritin was 31 (after taking prescribed iron tablets) and I think her folate was 8. I'm not 100% confident in him.

Gambit62
Gambit62Administrator in reply to Bates2587

folate won't help with the absorption of B12 - just that there is a tendency for people with a B12 absorption problem with other micronutrients - particularly folate and iron - but recommend you speak to a medical professional (which could be a pharmacist) about giving supplements to a child of that age.

MMA and homocysteine would show at this stage if B12 is getting into the cells.

IF negative is inconclusive and definitely wouldn't rule out PA - so it may be worth suggesting that the paediatrician reads up on the relevant section on limitations of IFAB test in BCSH guidelines relating to cobalamin and folate disorders

onlinelibrary.wiley.com/doi.... Unfortunately trying to use serum B12 to manage a B12 absorption problem doesn't really work.

I can understand being unhappy with CFS as it is really more of a label for a cluster of symptoms than a diagnosis of an underlying cause.

Bates2587
Bates2587 in reply to Gambit62

She does get a lot of headaches yes. She says she gets stomach pains swimming and in the bath which is a bit odd.

Gambit62
Gambit62Administrator in reply to Bates2587

apologies forgot to paste the link

nationalmigrainecentre.org....

Hi,

You could seek support and info from PAS (Pernicious Anaemia Society).

I have read stories of parents of children with B12 deficiency, not being listened to by medical professionals.

See blog post below.

martynhooper.com/2017/07/21...

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS members can access useful leaflets/articles from PAS website including info on juvenile pernicious anaemia.

pernicious-anaemia-society....

B12 Deficiency Info website also has lots of useful info eg

Children and B12

b12deficiency.info/children...

English article from Dutch B12 website

(units of measurement and reference ranges may vary from those in UK)

Vitamin B12 deficiency in children

stichtingb12tekort.nl/engli...

Have the doctors discussed your daughter's diet with you?

If the B12 deficiency is not due to diet then it's possible that there may be an absorption problem in the gut.

Has she been tested 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.

"He said her intrinsic factor is negative and she doesn't have anemia"

It is still possible to have PA with a negative result in IFA or PCA test but some UK doctors may not be aware that it is possible to have Antibody Negative PA.

About 50% of people with PA test negative on IFA test.

About 10% of people with PA test negative on PCA test.

Guidelines below suggest anyone with unexplained B12, folate or iron deficiency should be tested for coeliac disease and anyone with a first degree relative with coeliac disease.

NICE guidelines Coeliac Disease (UK document)

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

UK documents/articles on B12 deficiency

(Some of these may relate to treatment/diagnosis of adults only)

BSH Cobalamin and Folate Guidelines

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

BNF Hydroxycobalamin for adults

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

BNF Hydroxycobalamin for children

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

NICE CKS (adults?)

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

Retention of UK medical records

bma.org.uk/advice-and-suppo...

Don't rely on there being evidence of a past diagnosis of PA (Pernicious Anaemia) or other cause of B12 deficiency in current medical records.

If there is proof of diagnosis eg positive test result/letter from specialist confirming diagnosis etc, may be worth keeping a copy in a safe place.

Accessing Health Records (England)

nhs.uk/using-the-nhs/about-...

england.nhs.uk/contact-us/h...

patients-association.org.uk...

Misdiagnosis of B12 deficiency (mentions CFS)

b12deficiency.info/misdiagn...

martynhooper.com/2018/02/10...

Sadly, from people's reported experiences on this forum, there seem to be some common misconceptions about B12 deficiency among some doctors and other health professionals.

Misconceptions about B12 deficiency

( Some links may be to articles from countries outside the UK so reference ranges and units of measurement may be different. Some may only be relevant to adults.)

B12 article from Mayo Clinic in US.

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

Table 1 in above article is about frequent misconceptions about B12 deficiency.

Misconceptions about a B12 deficiency (from Dutch B12 website)

stichtingb12tekort.nl/engli...

Two B12 books I found useful (both mention children with B12 deficiency)

"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 this book is out of date. See BNF links in this reply for up to date info.

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

Very comprehensive with lots of case studies.

I hope you both get the help and support you need.

I am not medically trained.

Yes being accused of munchousen bi proxy (?) like in the PAS blog is a worry. So I am acculminating my evidence and will calmy write polite letters. I'm pleased some assistance is happening but it's hard to get your point across to a consultant that doesn't agree with you.

Please think about contacting PAS. It can be hard to get GPs and specialists to listen.

Another blog post about a child with B12 deficiency (this one may be upsetting to read)

martynhooper.com/2019/06/04...

Link about writing letters to GP about B12 deficiency

b12deficiency.info/b12-writ...

Link has letter templates that people can base their own letters on.

I joined the PAS a few weeks ago and spoke to a lady there. She sent me some articles for my grandparents (as my grandad has pernicious anemia and is loosing weight and continence and my nan is a vegetarian who has Alzeimers). She was very nice and told me to keep my foot on the gas. I also sent them a copy of martins book and Dr chandys. Maybe something will help. I think it's in my family. I'm privately testing my Mma but that's more to help with the b12 puzzle than evidence for my daughter's case.

That second PAS blog sounds familiar. My daughter is still got night time incontinence. Very tired but can't sleep. Angry and paranoid. Poor girl.

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