Hello! Since march, I have many canker sore and glossitis. I am tired and I loose my hairs. I'm 24 yo. I have a megaloblastosis, my b12 and folates are very low, my doctor said "indosable", and my ferritin is very high.
He thinks that I have pernicious anemia. Monday, I had a fibroscopy and I'm waiting for the results...
About IF antibody, i'm negative (0.82). What do you think? 
Hi,
I hope you find help and support to get you through the hard time you're having.
B12 websites
PAS (Pernicious Anaemia Society)
Based in Wales, UK. Has some members in other countries.
pernicious-anaemia-society....
There is a helpline number that PAS members can ring.
Overseas members can use online contact form.
B12 Deficiency Info website
B12 Awareness (US website)
B12d.org holds support meetings near Durham, UK.
They have online meetings on 13th July and 14th July. One is aimed at US time zones.
Stichting B12 Tekort (Dutch website with English articles)
stichtingb12tekort.nl/weten...
UK B12 Blogs
Martyn Hooper's blog about PA
B12 Deficiency Info blog
B12 article from Mayo Clinic (US)
ncbi.nlm.nih.gov/pmc/articl...
B12 books I found useful
The first three are written by UK authors so some reference ranges and units of measurement may be specific to UK.
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Has several case studies.
"Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)
Very comprehensive with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".
"About IF antibody, i'm negative"
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 (UK document)
stichtingb12tekort.nl/weten...
Flowchart outlines process for diagnosing PA and Antibody Negative PA in UK.
I am not medically trained.
Thank you!!
Indosable?
Sounds like you will get tour treatment for low b12 and after that your doctor will prescribe folate
The intrinsic factor antybody test result doesnt mean you havent Pernicious anaemia. Many people trust positive in another test.
Your treatment is the same. B12 deficiency/PA unless you are deficient through diet. Then tablets will work. Say if you a vegan or infact a vegetarian if your diet isnt varied enough.
If your doctor thinks PA thrn its PA on a clinical diagnosis.
I hope your treatment starts soon..
Hi! Thanks for your answer. Yes, I already started (since 3 days) b12 injections (1 per day during 10 days, 1 per week during 3 weeks and 1 per month during 12 months) and I have to take 3 pills per days of folates (morning, noon and dinner). I'm not vegan, I eat meat regulary... I think the biopsy will say if it is PA or not? :/
Are you vegetarian or vegan?
If not, then you probably do have PA. The IFAB test is rubbish. About half of people with PA test negative.
You need injections ASAP.
Thanks for you message! Yes, I already started 3 days ago b12 injections (1 per day during 10 days, 1 per week during 3 weeks and 1 per month during 12 months) and I have to take 3 pills per days of folates (morning, noon and dinner). I'm not vegan or vegetarian and I eat meat. He searched for gluten problems, but he said it was not that.
Hi,
"He searched for gluten problems"
Have you been tested for Coeliac disease (Celiac in US)?
If you were tested for Coeliac, did you have
1) TTG IgA test which looks for a particular antibody to gluten.
2) Total IgA test which checks which patients have IgA deficiency.
Patients with IgA deficiency will need different tests for Coeliac.
If tested for Coeliac in past, were you eating plenty of gluten in the weeks prior to the blood being taken?
If a patient with Coeliac disease is only eating small amounts of gluten then there may not be enough antibodies to gluten in the blood to show a positive result in TTG IgA test.
Risk Factors for PA and B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/what-are...
b12deficiency.info/who-is-a...
The test for IGA says I'm negative (<0.5), but yes, I think I'm eating gluten "a lot"
And I forgot but I am only positive for ANA test (200, and last year I had 100), but I don't know what does it mean....
Hi,
An ANA test is ordered when a doctor suspects possibility of certain types of auto immune disease.
A positive result does not necessarily mean an auto immune disease is present as ANA test can sometimes be positive in healthy people.
Link about ANA test.
labtestsonline.org.uk/tests...
Oh I see, thank you for the link
I think that you do have Pernicious Anaemia . Having a negative Intrinsic Factor Antibody result does not mean that you don’t have P.A.( this test is notoriously inconclusive ) Your symptoms are the most important factor in the diagnosis of P.A. Your doctor should know this. I hope that you will have B12 loading injections ASAP , followed by injections often enough to keep your symptoms at bay . We are all different and have different requirements . Pernicious Anaemia is not curable and you need injections for life . You can then lead a normal life if you get injections regularly enough . Be warned — that isn’t always easy to get . Many of us have a terrible struggle to get injections often enough, and are forced to self-inject . If this happens to you ,get back to us , as we can help you further .
It’s important to take daily a modest folic acid tablet - say 400mcg . This works together with B12 .
Well, I started 3 days ago b12 injections (1 per day during 10 days, 1 per week during 3 weeks and 1 per month during 12 months) and I have to take 3 pills per days of folates (morning, noon and dinner). My doctor already explained to me about the injections things, all my life, but I didn't know it could be hard... For him, I have PA, but I am a little worried, is it possible to have PA without gastrisis? Because during my fibroscopy, my stomach was ok, but now we wait for the biopsy result..
The IF test is notiriously lacking in sensitivity and gives false negatives 40-60% f the time so a negative does not rule out PA.
Sounds like you have severe B12 deficiency as a result of some absorption problem as you eat animal products and the daily requirement for B12 intake are very low - its not going to be a dietary. This means that any oral intake of B12 is going to be a very inefficient way of raising your B12 levels and you really need B12 shots. Some people (myself included) do find that taking massive amounts of B12 orally can be effective at maintaining levels once they have been raised by an injection but it doesn't work for everyone and if you are going to give it a try it really needs to be started right after loading shots.
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