Diagnosis B12 deficiency/unclear as t... - Pernicious Anaemi...

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Diagnosis B12 deficiency/unclear as to cause

I was just diagnosed with B12 & Folate deficiency’s but I am unclear as to how my dr ruled out PA based on lab work???

Any insight and/or guidance is appreciated!

Note: I have RA so I do take Prilosec daily as well as 2 mg Folic Acid: it is extremely unusual to have a Folate deficiency while taking 2mg daily. Additionally, I have Parkinson’s so I’ve assumed my Neuro symptoms and extreme fatigue was caused by PD. My B12 & Folate levels were tested as routine for admission to a clinical trial....thank goodness as this would have gone on unchecked.

I have lost 10 lbs this past month without alterations to diet/not typical for me.

Blood test results-

B12: 182 (200-1100)

Folic Acid: 4.3 (>5.4)

Homocysteine: 26.5 (0.0-15.0)

MMA: 143 (0-378)

RBC: 3.72 (3.8-5.10)

Hemoglobin: 12.2 (11.7-15.5)

Hematocrit: 35.9(35-45)

MCV: 102.5 (80-100)

MCH: 33.1 (27-33)

MCHC: 34 (32-36)

Ferritin: 50 (normal)

Celiac: normal

Thyroid: normal

Dr put me on 5mg methylated Folic Acid capsules/daily & B12 injections: 1 x day/7 days, 1xweek/4 wks, 1x month followed by restesting in 3 months.

Thank you for responding!

9 Replies
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Hi Mim17

Anyone at any age, can become B12 deficient. However, certain people are at an elevated risk. They include the following:

Vegetarians, vegans and people eating macrobiotic diets.

People aged sixty and over

People who’ve undergone any gastric and/or intestinal surgery, including bariatric surgery for weight loss purposes (Gastric bypass).

People who regularly use proton-pump- inhibitors. H2 blockers, antacids, Metformin, and related diabetes drugs, or other medications, or infections such as h-pylori that can interfere with B12 absorption.

People who undergo surgeries or dental procedures involving nitrous oxide, or who use the drug recreationally.

People with a history of eating disorders (anorexia or bulimia).

People with a history of alcoholism.

People with a family history of pernicious anaemia.

People diagnosed with anaemia (including iron deficiency anaemia, sickle cell anaemia and thalassaemia).

People with Crohn’s disease, irritable bowel syndrome, gluten enteropathy (celiac disease), Pancreatic insufficiency, or any other disease that cause malabsorption of nutrients.

People with autoimmune disorders (especially thyroid disorders such as Hashimoto’s thyroiditis and Grave’s disease) Type 1 diabetes, vitiligo, lupus, Addison’s disease, ulcerative colitis, infertility, acquired agammaglobulinemia, or a family history of these disorders.

Women with a history of infertility or multiple miscarriages.

Do you "see yourself" among any of the above people?

A wiser person than I has posted this comment previously:

"Treatment for PA and non-dietary vitamin B12 deficiency is virtually the same."

The symptoms of PA are the symptoms of the B12 deficiency that it causes. If the cause isn't dietary then it is an absorption problem so you need to find another way of replenishing B12 initially. Most absorption problems aren't treatable but a few are - notably h pylori infection - which would mean that once that has been dealt with you would be able to absorb B12 from your diet so wouldn't need maintenance shots for life".

For Pernicious Anaemia you would have an "Intrinsic Factor Antibody" (IFA) test.

Sadly, the IFA test is unreliable in that it gives false negatives in people with PA half the time. So a negative result doesn't mean that you don't have PA. However, a positive result is a sure-fire, 95% certain indicator of PA.

I am not a medically trained person so cannot comment on your lab results but I've had Pernicious Anaemia (a form of B12 deficiency) for more than 46 years.

I wish you well and hope that you will soon feel the benefit from the injections.

1 like
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Thank you for your response!

Reply

Hi,

Some B12 links that might be of interest.....

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

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.

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Has members in other countries. Offers support and info about PA.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

Tests for PA

In UK, Intrinsic Factor Antibody test is recommended although it is not always reliable. People can still have PA even with a negative result in IFA test. In other countries sometimes a Parietal Cell Antibody test is also used.

b12deficiency.info/b12-test...

"Celiac: normal"

Which tests did you have for Coeliac disease?

In UK, two first line tests are recommended.

1) tTG IgA

2) Total IgA

Total IgA test checks for which patients are IgA deficient. People with IgA deficiency need different tests for Coeliac disease.

Coeliac Blood Tests

coeliac.org.uk/coeliac-dise...

Have you ever been checked for H Pylori infection?

patient.info/health/dyspeps...

"I have Parkinson’s so I’ve assumed my Neuro symptoms and extreme fatigue was caused by PD"

I found interesting articles in past when I searched for "Parkinson's B12 deficiency".

B12 Deficiency Symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

Blog post from Martyn Hooper's blog about PA, mentions SACD, sub acute combined degeneration of the spinal cord.

martynhooper.com/2010/09/21...

I am not medically trained.

Reply

I appreciate the info and great links you sent me.

Reply

Hi again,

Are you in UK? I'm asking because patterns of B12 treatment can vary from country to country. The type of B12 used can vary too.

B12 Awareness (USA B12 website)

b12awareness.org/

Dutch B12 website (has English articles)

stichtingb12tekort.nl/weten...

More B12 info in pinned posts on this forum.

Misdiagnosis

b12deficiency.info/misdiagn...

Above link mentions that B12 deficiency can sometimes be misdiagnosed as other health conditions.

Reply

No, I’m in the US.

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Your homocysteine result is very high , but being treated with B12 injections and folic acid will bring this down . I see no evidence that you have been tested for Pernicious Anaemia .( anti bodies to Intrinsic Factor )

Taking Prilosec, which is a Proton Pump Inhibitor, will eventually deplete your stomach acid, which is needed to help absorb Vitamin B12 , and other vitamins and minerals . Hence your B12 deficiency .Vitamin B12 is the most difficult vitamin to absorb because it not only needs plenty of stomach acid , but also the Intrinsic Factor in order to be absorbed . The stomach cells which produce the Intrinsic Factor , (parietal cells ) are attacked by antibodies in PA. patients .

The Prilosec may be the sole cause of your B12 deficiency , and if you cannot give up taking it , you may need to continue to get sufficient B12 by way of injections, or maybe tablets ( if you do not have PA. )

Best wishes to you .

3 likes
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Thank you so much for your insight! I will be sure to get testing for PA.

Reply

No, I’m in the US.

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