Hello: my daughter had bloods and... - Pernicious Anaemi...

Pernicious Anaemia Society

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Murphy71 profile image
10 Replies

my daughter had bloods and stools results back - Folate 1.1, B12 101 & Faecal Calprotectin 107..... passing big blood clots - Awaiting colonoscopy. Is this PA?

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Murphy71
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10 Replies
Gambit62 profile image
Gambit62Administrator

Both the folate and B12 results look very low - can't comment on the faecal calprotectin - but difficult to tell without reference ranges.

Does look as if there is probably both folate and B12 deficiency

PA is an absorption problem that causes B12 deficiency and can cause problems absorbing other vitamins and minerals but getting a diagnosis of PA means looking for anti-bodies related to it so impossible to tell.

What needs treatment would be the vitamin deficiencies regardless of the cause.

michellemcginn2 profile image
michellemcginn2 in reply toGambit62

Thanks so much for your response

Foggyme profile image
FoggymeAdministrator

Hi Murphy71. Hello and welcome. I see that you're new to the forum so I'm going to post some links that will give you more information about B12 deficency (which can have causes other then PA) and pernicious anaemia.

GP's are notoriously I'll-informed about B12 deficency and PA so the best way to deal with that is to become your own expert - sometimes that's the only way of helping GP's to help you - and of getting appropriate and timely treatment 😄.

As Gambit62 says, your daughter's B12 level looks very low..do you know what the reference range is?

Incidentally, GP's often say that test results are normal, when they're not. If you ask for copies of all blood results (you are entitled to these) and post them in the forum, folks can help with interpretation.

Anyway...once you've read the information it's likely that you may have more questions so post again and we'll do our best to help you.

And if you have trouble getting treatment from her GP (i.e. some GP's have the mistaken belief that babies and children can't have B12 deficiency or PA - they can and do) we can offer advice and support with that.

Good luck to,you both 😄

Here's the links:

LINKS TO INFORMATION AND GUIDELINES

b12researchgroup.wordpress.... (Serious Caution Note about the use of Oral and Sublingual B12 Supplements)

evidence.nhs.uk/formulary/b... (BNF B12 Deficiency: Hydroxocobalamin Treatment Regimes)

pernicious-anaemia-society.... (PAS Symptom Checklist)

stichtingb12tekort.nl/weten... (BSH B12 Deficiency / PA Diagnostic Flowchart)

onlinelibrary.wiley.com/doi... (British Society Haematology (BSH) Guidelines: Treatment of B12 Deficiency and Folate Disorders)

onlinelibrary.wiley.com/doi... (UKNEQAS B12 Treatment Alert, Neurological Symptoms and Risk of Subacute Combined Degeneration of the Spinal Cord)

stichtingb12tekort.nl/weten... (Problems with Serum B12 Test)

stichtingb12tekort.nl/weten... (Testing B12 During Treatment)

stichtingb12tekort.nl/weten... (Misconceptions About B12 Deficiency – Good to Know Before Seeing GP)

stichtingb12tekort.nl/weten... (B12 Treatment Safety / Long Term Treatment for neurological symptoms)

stichtingb12tekort.nl/weten... (B12 Deficiency: Neurological Symptoms Can Present Even When B12 is ‘In-Range’ and Without Macrocytosis (large red blood cells) or confirmed PA Diagnosis)

stichtingb12tekort.nl/weten... (Methylmalonic Acid – MMA)

stichtingb12tekort.nl/weten... (B12 Deficiency and Neuropsychiatric Symptoms)

ncbi.nlm.nih.gov/pmc/articl... (No Superior Forms of Cobalamin)

P.s. I have one more link about B12 deficency in children but if I do an IT dodge away the page to get it, I'll lose this reply 😖. Will add in a separate reply following this one.

michellemcginn2 profile image
michellemcginn2 in reply toFoggyme

Thanks so much for your response. I din't have the range but doctor did say levels very low on the b12 and folate and very high on the calprotectin result (which means she probably has a inflammatory bowel disease) awaiting appointment. We will ask fir a printout of results at next dictor visit. Thanks so much for all the links... i really appreciate it. Xx

Foggyme profile image
FoggymeAdministrator in reply tomichellemcginn2

Yes...B12 deficency and folate deficiency. GP needs to treat both together.

Good luck...hope all goes okay. And post again of you need more help or advice...not all doctors are well informed about B12 deficency.

👍

michellemcginn2 profile image
michellemcginn2 in reply toFoggyme

Many thanks x

Foggyme profile image
FoggymeAdministrator

Here's the extra link: B12 deficency in children...

stichtingb12tekort.nl/weten... (B12 Deficiency in Children)

michellemcginn2 profile image
michellemcginn2 in reply toFoggyme

My daughter is now 22 and only diagnosed. Thankyou so mych for the link. I appreciate it

Foggyme profile image
FoggymeAdministrator in reply tomichellemcginn2

Oops...our children are always children aren't they...but I'm a daughter....and not a young one at that!

Perhaps just ignore that link then...less reading 😄

👍

michellemcginn2 profile image
michellemcginn2 in reply toFoggyme

Lol 😊😊

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