Low vitamin B12,low ferritin, antibod... - Pernicious Anaemi...

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Low vitamin B12,low ferritin, antibodies anti parietal cell weak positive.

samiral profile image

Hello everybody;

I have been diagnosted with low b12 (185) in 2009, since I had no macrocytose, my GP refused any further investigastions.

Recently I decided to continue the battle alone; I have :

slight anemia (11-12 Hg) ;normal MCV

Low iron and ferritine ;normal B9.

antibodies anti parietal cell weak positive.

Slight non-atrophic gastritis .

Partial duodenal atrophy

Biopsies showed rare HPylori bacteria,but blood Antibodies negative,stool test negative !!!!

What could it be? any similar case ??

9 Replies
Foggyme profile image
FoggymeAdministrator

Samiral. Are you able to post the actual results, together with reference ranges? This will enable forum members to get a better picture of what's going on.

Another couple of questions that will help forum members to help you...

What was the reference range for the serum B12 level of 185 in 2009?

Do you have a more recent serum B12 (or active B12) blood test result?

Have you taken any B12 supplements?

Heliobactor pylori can cause both gastritis and B12 deficiency. Have you been treated for the HP infection?

B12 deficiency can (and often does) present without macrocytosis and the serum B12 is a pretty useless tool for diagnosing B12 deficiency. Your GP is obviously not aware of this. Treatment should be based on the full clinical picture, that is, by assessing symptoms too. What symptoms do you have?

Iron deficiency anaemia (depending on your actual results), which results in macrocytic (small) red blood cells can mask macrocytosis (large red blood cells) if both are present at the same time (the small cells caused by iron deficiency anaemia 'hide' or 'mask' the macrocytic large red cells). Did you have a full blood count, including RDW (RDW result is a way to tell if both large and small red blood cells are present together - a way of exposing 'hidden' macrocytosis). Please post all results (together with the reference ranges) for the FBC, if you have them.

Parietal cell antibodies is no longer recommended for diagnosing PA (too many false positive tests). Have you had Intrinsic Factor (IF) antibodies tested (though 40%-60% of those with PA test negative - so a negative can't rule out PA). Having said that, your endoscopy results do not support a PA diagnosis.

Have you been tested for Coeliac's disease and Crohn's disease (these can cause duodenal atrophy)?

Worth noting that HP, Crohn’s, and Coelics disease (and IBS) can all cause B12 deficiency (as can pernicious anaemia).

Sorry for all the questions but answers will help us to get a fuller picture of what's going on.

👍

samiral profile image
samiral in reply to Foggyme

Thanks for the reply;

I measure my B12 level regularly since 2009 ; it is always around 185 (189-883)

(I am a man / 33 years old)

My ferritin is 30.4 (30-400)microg/l

Iron 8.8 (10.06-28.3) micromol/l

Hemoglobin 12 (12-15)

Red blood cell 4.3 (4.5-5.5)

MCV 88 (82-102)

Intrinsic Factor negative/parietal cell positive

HPylori negative.(Serum and stool antigen negative)

I have symptoms; fatigue; weight loss; low blood pressure (10/6);and many more

I don’t have symptoms of Crohn's disease;

My endoscopic didn’t show evidence of Coeliac's disease (only partial atrophy)

My case is confusing; this is why doctors don’t go further.

Thank you.

Foggyme profile image
FoggymeAdministrator in reply to samiral

Hi samiral. Not so sure that your case is confusing...looks more like your GP is confused.

Your blood tests show iron deficiency anaemia - ferritin 30.4 (30 - 400) Iron 8.8 (10.06 - 28.3) haemoglobin 12 (12 - 15) and RBC 4.3 (4.5 - 5.5) - all indicators of iron deficiency anaemia. Is your GP treating this?

The presence of iron deficiency anaemia can mask the appearance of macrocytic anaemia (large red blood cells) - what your GP may be looking for to diagnose B12 deficiency. However, many GPs do not know that iron deficiency anaemia can mask the presence of macrocytic anaemia and more importantly that B12 deficiency (also with neurolgical symptoms) can be present without macrocytic anaemia.

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)

Also - your serum B12 level at 185 in the range 189 - 883 is positive proof of B12 deficiency (if your GP thinks the result is okay because because it's just a bit under the reference range, then that's wrong. The result shows a deficiency, you have symptoms of deficiency, you should be treated. So your GP should be treating this. Goodness knows why not!

And even given this, the serum B12 test is a notoriously unreliable marker of B12 deficiency - B12 deficieny can be present even if serum B12 is apparently within 'normal' limits. GPs should be looking at the full clinical picture and treating symptoms (and not just looking at serum B12 results). And for goodness sake, your results clearly demonstrate that you have B12 deficiency (quite rattled on your behalf 🤬).

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)

If you have neurogical symptoms, all the guidelines state that treatment with injections should begin immediately to prevent the development of potentially irreversible neurolgical symptoms (subacute degeneration of the spinal cord - though certainly not suggesting you have this).

archive.is/hbPHE (UKNEQAS B12 Treatment Alert, Neurological Symptoms and Risk of Subacute Combined Degeneration of the Spinal Cord – Immediate Treatment with B12 Injections)

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)

These are the BSCH guidelines that your GP should be following (clearly, they aren’t - many have never read them):

onlinelibrary.wiley.com/doi... (BritishStandards in Haematology (BCSH) Guidelines for the Diagnosis and Treatment of Cobalamin and and Folate Disorders). Including B12 Deficiency / PA Diagnostic Flowchart.

And here is a link to the BNF prescribing guidelines which state that those with neurogical symptoms should receive a more intensive regime of B12 injections. Many GPs do not know this - about the third paragraph down - many do not read that far so you might have to point it out:

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

(BNF B12 Deficiency: Hydroxocobalamin Treatment Regimes)

Also - despite the serum HP and stool test being negative for HP, the biopsy did showed a rare form of HP - is this being treated - or are their plans to treat it? There should be. (Don't know a thing about rare forms of HP but seems to me that if it's there- as identified by biopsy - it should surely be treated?).

As many doctors are so ill-informed about B12 deficiency (symptoms, diagnosis and treatment) many here find that the best thing to to is become informed and collect reliable evidence to present to their GP so that they can make and evidence based appeal for treatment. Sometimes this works in a face to face consultation - often the best course is to write a 'treatment appeal ' to the GP and include evidence with a letter - when evidence is included in a letter they have to read it and it also becomes a part of your medical records - so more difficult for them to ignore 😉.

So...suggest you put together some evidence and approach your GP again (Sleepybunny has also left lots of useful links to information) - either face to face consultation or better still, write first and ask them to review the evidence before your next consultation (make an appointment and inc,due that date in the letter so they have to read (act) and be ready for you 😉.

Just a thought - is ther another GP that you can see - current one doesn't seem to be doing much to help you...to put it mildly.

No idea why your GP is choosing to ignore the obvious presence of iron deficiency anaemia and a serum B12 test that proves you have B12 deficiency (no such thing as being just a little bit B12 deficient).

In short, your GP is confused. Very. And should be treating you (as above).

Know how very difficult it is to challenge GPs - especially when feeling so ill. But please do pursue this...you have a right to be treated...especially when test results (the things that GPs place so much reliance on) show that there is cause.

Good.luck and post again if you need more help. Would be good to hear how things go.

👍

samiral profile image
samiral in reply to Foggyme

Many thanks for the explanations;

The problem is not about taking B12 shots or irons supplements ;it's easy ;doctor agreed to prescribe anyway. I want to find the root cause of all this.

Yesterday ,I finished my therapy for HPylori (although sero-negative).

I take shots of Cyanocobalamin(the only form available in my country) since 1 month.

I plan to start iron supplements soon ;but in same time I would like to know the root of all these deficiency; B12 and iron deficiency are not by themselves diseases .

My sister (25yrs) started to explore; she has B12 in gray zone (180 to 300) ref range(189-880)and low ferritin.

Next few days ,I will explore for Celiac disease (serology) .

Foggyme profile image
FoggymeAdministrator in reply to samiral

Root cause could be heliobactor pylori (if this is what you had). If that's the case, then your body should be able to absorb B12 once the HP has been eradicated....though can take several months to re-establish absorption via diet.

Medications may be another cause.

If you look in the BCSH guidelines in the links above, they list some of the potential causes of B12 deficiency - and there are many 😉.

And it's often the case that it's quite difficult to determine the actual cause - some people never find out. The main thing is that the B12 deficiency is treated adequately enough to help you get well and remain symptom free. And that means having injections frequently enough to keep all symptoms at bay - something that's not always easy because many doctors will not prescribe injections frequently enough for this to happen.

Hope you have a GP that will prescribe effectively and help you to try and determine the cause of your deficiency.

Good luck.

👍

had you taken any acid reducers within 14 days prior to testing stool? ppi, tums, pepto bismal, baking soda? or even longer if constipated? the blood test could be negative if they only tested 1 or 2 instead of for all 3 anitgens. i believe they are iga, igg, and igm but not certain on that.

damn dr. pulled h pylori from your stomach but is refusing treatment? seems ridiculous especially since you have low serum iron AND low b12.

my ferritin was fine when i had h pylori but i believe that is because i put lime juice (think acidity) with every ounce of water i drank. but my serum iron was 69 and after successful treatment serum iron was 110 which is optimal for women. i had tried to take iron for 8 days at one point while i unknowingly still had h pylori (first treatment did not work). the iron made me feel better for first 2-3 days but then worse as my body attempted to adjust (reduce) serum iron and push iron i was taking into ferritin. this is called anemia of chronic inflamation or infection. the body sees iron as toxic (it is trying to protect you by reducing iron which the bacteria needs to survive) so it reduces serum iron and ferritin will go up if you have acidity (lime juice) present in stomach to be able to absorb the iron.

adding lime juice will improve your ferritin in the long haul but you will only feel better for a few days (higher serum iron) while your body adjusts to reducing that down again.

you need antibiotics!!!

b12 injections will help you feel better but not well as that will fix only half of the issue.

i never had macrocytosis and my b12 was down to 169 but every folate test i have taken shows above 18 and high folate can mask /keep cells from getting larger. also you have and iron issue so that will reduce your cell size. a test of rdw, red blood cell width distribution might show high in range.

without a doctor, i have no idea how you are going to get rid of h pylori.

can you vacation in a country that will give antibiotics to you? i know you can get them in Mexico. hopefully there is a country closer to you.

samiral profile image
samiral in reply to KimberinUS

Thank you KimberinUS;

The update :I jsut finished my HPylori treatment ,I still need to take PPI a couple weeks more.

I started to take B12 shots ,in meanwhile ,I continue my investigations ;It seems that my sister has the same problem ;so the HPylori hypothesis is not so strong.

I will also explore for Celiac disease in deep.

Hi,

Are you in UK? I'm asking because B12 treatment varies from country to country.

If you're in UK, I'd suggest reading following B12 documents.

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...

BMJ B12 article

bmj.com/content/349/bmj.g5226

BNF

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

NICE CKS

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

B12 books I found useful

"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 is up to date with UK b12 guidelines.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

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

Very comprehensive with lots of case studies.

B12 websites

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Has members in other countries.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (USA website)

b12awareness.org/

Stichting Tekort (Dutch B12 website with English language articles)

stichtingb12tekort.nl/weten...

B12 Deficiency Symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

H Pylori infection

patient.info/health/dyspeps...

"Intrinsic Factor negative/parietal cell positive"

In UK, BSH Cobalamin and Folate Guidelines, acknowledge that it is possible to test negative in Intrinsic Factor Antibody test and still have PA (Pernicious Anaemia). This is called Antibody Negative PA. I am not sure if Antibody Negative PA is recognised in countries outside UK.

Intrinsic Factor Antibody test

labtestsonline.org/tests/in...

I am not medically trained.

samiral profile image
samiral in reply to Sleepybunny

Hello Sleepybunny;

Thank you for the valuable links ;I have read "could it be b12?" ;there was many hilarious stories of misdiagnostics.

I started to take B12 shots,unfortunately ;we have only cyanocobalamin in my country.

In meanwhile;I continue my investigations to explore the root cause of my deficiency.

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