B12

[Elleeee]

Never found out why my b12 got so low. Had 3 tests for pernicious anemia all came back negative and had a test for celiac disease which also cane back negative. Has anyone else experienced this ?

[Gambit62 Administrator]

getting a definitive diagnosis can be very difficult - the BCSH guidelines use 'IFAB negative PA' as a category to cover this

onlinelibrary.wiley.com/doi...

[clivealive Forum Support]

Hi Elleeee I'm sorry to read that you are still not feeling any better since you had the loading doses two months ago.

You say you "never found out why my b12 got so low"

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.

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

I take it "celiac disease" has been ruled out?

So, where are you now with treatment? Are you still getting B12 injections?

Do you have any neurological symptoms?

The neurological symptoms of vitamin B12 deficiency may include:

 Numbness and tingling of the arms and more commonly the legs

 Difficulty walking

 Loss of balance

 Hands feel gloved with loss of sensitivity

 Loss of vibration sense, having to look down to see where you are walking

 Unable to close your eyes and stand on one foot

 Night vision

 Memory loss

 Disorientation

 Dementia

 Extreme mood changes

 Short term memory loss

As you may remember I'm not a medically trained person but there are others on here who will be able to give you good advice.

I wish you well.

[Elleeee in reply to clivealive]

Hi I’m not any of those, I eat meat, and have not history of it in my family etc no one understands why I am deficient. I’ve been referred to a gastro doctor and he dosent know why either as things have been ruled out. Thanks for your reply

[clivealive Forum Support in reply to Elleeee]

Are you still getting B12 injections?

[Elleeee in reply to clivealive]

Every 3 month had loading doses in October

[clivealive Forum Support in reply to Elleeee]

... and are you feeling any benefit?

Do you know whether your Folate level has been checked?

How about neuropathy? Do you have symptoms?

I can empathize with you Elleeee as I was a relatively young man (26) when I had my first "Schilling's test" (What was done before the Intrinsic Factor Antibody test) which turned out "inconclusive" and it was another fours years before I had a second (unheard of - according to the technician who remembered me from the previous one) Schilling's test which proved positive, by which time I was a walking "Zombie".

I don't know how low my B12 level had got to before the first test but it had been nine years since I had had two thirds of my stomach removed so it was quite possible that I was "running on empty" because I could not absorb the B12 from food.

The Schilling's test involved me being given a massive injection of B12 and also drinking a radio-active mixture and the amount I "lost" via my urine was measured to determine whether I had P.A. or not.

It may well be that that "massive dose" enabled me to "struggle on" for another four years until my then doctor bravely decided to have the second test done.

When she knew the result she told me that I had only two years to live - unless I ate raw liver three times a day - or - had B12 injections for the rest of my life.

Much as I love liver, with bacon, onions & chips I opted for the injections and I'm still "clivealive" and over 75.

It's nearly my bedtime so I'll bid you goodnight.

[KimberinUS]

Hi there,

Have you been tested for h pylori? The only issue i had was nausea *i read you listed this in another pist) and i have tested positive for h pylori twice in 3 months. First in Aug 2017, was treated then retested as still not felling great even though i had had 18 cyno injections over 5 months. Some of those injections had been after "treatment". I retested positive again in Nov 2017. I have taken a different treatment (much longer trestment) and am hoping i feel better soon.

I would be good to at least rule it out

[Ryaan]

Yes.....it’s very difficult to diagnose hence I started self injecting to solve the problem. No test for definite diagnosis.

Better to inject (even if it means for life), than to live with terrible B12 symptoms.