Pernicious Anaemia Society
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Folate levels

Managed to convince my doctors to give me an early blood test. They had to override the path lab as they didn't want to do it . Had my b12 injections a month ago and found my b12 had gone from 133 to over 2000 well happy but my folate has dropped from 1.7 to .7 start folate tablets tomorrow. Still won't give me an appointment with neurologist or hematologist . Got to wait another 3 months for another blood test to see how my levels are . After 15 years getting a little frustrated not taken into account the fact I've had these symptoms for many years and still haven't diagnosed the cause .

Sorry rant over like many of you just getting frustrating .

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Hi Parkes

It is important that your Folate level is monitored as this is essential to process the B12.

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.

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 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), 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.

Could any of the above be the cause of your original B12 deficiency?

I am not a medically trained person but have had P.A. for over 46 years.

I wish you well

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Hi Parkes,

"After 15 years getting a little frustrated ........still haven't diagnosed the cause"

I mentioned on an older thread of yours

healthunlocked.com/pasoc/po...

about Antibody Negative PA. This is PA where result in Intrinsic Factor Antibody test is negative/normal range.

Antibody Negative PA is recognised in UK but not sure if it's recognised in other countries. Have your doctors considered possibility of Antibody Negative PA?

stichtingb12tekort.nl/weten...

I believe Martyn Hooper, chair of PAS (Pernicious Anaemia Society), tested negative on IFA test more than once before testing positive.

clivealive lists possible causes of b12 deficiency in his post above. Have your doctors excluded these as causes?

Have you had tests for Thyroid disease?

thyroiduk.org/

For Coeliac disease?

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

nice.org.uk/guidance/ng20

"Still won't give me an appointment with neurologist or hematologist"

If you're in UK, NICE guidelines say that advice should be sought from haematologist for someone who has b12 deficiency with neuro symptoms.

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

If you're in UK, have you considered contacting HDA patient care trust?

hdapatientcaretrust.com/

I am not medically trained just someone who has struggled to get a diagnosis.

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