Hi my sisters daughter recently had bloods done folate was 3.9 (range 3.9-20) b12 was 368 but had been taking child multi vits, any way roll on 3 months no multi v but folate 400m daily, bloods redone folate slightly higher 7.9 b12 had gone up to 427 no iron or ferritin tests (doctor said no need) intrinsic factor came back positive.
My understanding is with I.f positive means she has p.a, doctor says no as her other levels are OK. So no diagnosis of p.a, no b12 injections.
Any advice please
Confusing.
But you also have to be careful to treat low b12 before folate.
She is in range though for b12. Strange b12 went up not on supplements .??
Its good practice to check folate and b12 together so folate supplements are not given when b12 deficient.
From what I've gleaned from here. The intrinsic factor test is usually accurate if positive but only 50% accurate if negative.
Its whether the doctor thinks a false positive ??
How is she?
Despite all this if she has clear symptoms she should be treated.
Is she vegan /vegetarian.
The doctor may think supplements enough Much better that way after all.
If you look through other posts others that are better informed will have answered this .
Or PAS information sheets
I've never had an insrisic factor test.
I had an older partial cell test.
That was negative but because if b12 deficiency symptoms and low b12 serum blood test 106ng/l
I'm on injections for life it seems.
I dont understand why a full blood test was not given?
Iron
Ferritin (always have to ask!)
Vitamin d
Folate
Liver function ect ect
If she very young some ranges are different.
Hope this is of some use to ask the doctor the right questions.
Symptoms should be recorded.
Thanks for replying, gp says currently not p.a but in the future could be! So if bloods came back below range would definitely go on injections.
They had asked for iron etc but gp said not needed but sister insisted on getting i.f. with family history. Her daughter constantly tired/low mood/pale not thriving also possibly autistic. High attaining/masking Said about being symptomatic and possible trial but nope not having any of it. I thought if i.f. positive has to be p.a ? Oh and she's 16 most definitely not vegan.
B12 going up ? Possibly pooling in blood?
If she doent improve just keep going back. Thers a 95% chance ot is PA
There is also something called functional b12 deficiency. Something to look up.
So worrying for you all.
Do keep pushing though. One of my daughters b12 deficiency was missed. She got a label of fibromyalgia and they stopped testing . Did brain scans . Tilt table. Sent round and round. Ni one filled in the dots . Not one b12 test amongst so many blood tests.
It only came to light when she developed POTs and was in hospital. By then she had the megobskastic anaemia POts and loads of other symptoms . Her folate was very low too.
Hope she improves
A positive IFAB test means there's around a 95% chance of PA. So she may be one of the 5% who give a false positive. I'll bet that is what the doc assumes.
It may be that your niece has only recently acquired PA and that she is surviving on stored B12 (the average liver contains about 4 year's worth).
The two B12 tests are, essentially, the same. The serum test is neither precise nor accurate. A real serum B12 concentration of 390 might give results ranging from 340 to 440 - when repeatedly measuring the same sample.
Were these tests done for a specific reason (symptoms that led to to suspect a deficiency) or just part of a standard MOT? If she has symptoms then it might be worth trying to persuade the doc to trial B12 injections, but I wouldn't hold out too much hope.
Otherwise, keep a regular check on B12 levels, keep up with the folate, and keep an eye on possible symptoms.
Test had been done due to other sufferers within family, and sister was worried about her daughter, is it just normal teen thing or B12? But after leaving possible autism diagnosos after school etc said no she's fine hitting tar gets etc she doesn't want to leave this hanging if that makes sense. She did try and go for trial stating bnf and nice but nope not interested!
Gp definitely said that in future if her B12 came back lower than the range then she would need injections from then.
Hi,
If you suspect she has PA, perhaps a family member could join and talk to PAS (Pernicious Anaemia Society)?
PAS (Pernicious Anaemia Society)
Based in Wales, UK. Has members in other countries.
pernicious-anaemia-society....
PAS tel no 01656 769717 answerphone
PAS support groups in UK
pernicious-anaemia-society....
Blog post about how PAS can support PAS members seeking PA diagnosis
martynhooper.com/2017/06/24...
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.
Both these tests can be unreliable.
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.
Link about "What to do next" if B12 deficiency suspected
b12deficiency.info/what-to-...
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
BNF
bnf.nice.org.uk/drug/hydrox...
BNF guidance on treating b12 deficiency changed recently.
pernicious-anaemia-society....
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). Book does not show updated BNF info.
"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 chapter that mentions autism.
B12 article from Mayo Clinic
ncbi.nlm.nih.gov/pmc/articl...
Suggests
1) No proof that oral b12 is a good at treating B12 deficiency as B12 injections
2) Many current diagnostic tests eg serum b12, active B12, MMA, Homocysteine, are not totally reliable
3) Successful treatment should not be stopped
I wrote a very detailed reply on another forum thread which has links to other B12 books, B12 websites, UK B12 documents and other B12 info.
healthunlocked.com/pasoc/po...
I hope you'll find some useful info in it .
I am not medically trained.
Thanks will have a proper look at those this evening
Hi,if there is a strong family PA connection especially on mothers side,then I would keep pushing for a diagnosis.only in the last few years did my daughter and I test positive,but I honestly think we have had PA a long time.only digging did I find more female family members also have this condition.good luck on your journey x
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