Totally confused.... Advice really needed, please

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Hi,

I've been put on B12 injections after my B12 levels were 66. While having an injection I asked the nurse why my levels were so long. She looked at my blood test results on her computer and told me my body was lacking intrinsic factor. She told me I therefore had pernicious anaemia. When I asked further questions about this condition she was very nice and as helpful as she could be but said "I'm just a nurse, you'll need to speak with a doctor."

I therefore made an appointment with the doctor. The doctor told me my haemaglobin level is 16 so therefore, she said, I "do not have pernicious anaemia". She told me I would be anaemic if my haemaglobin level was below 13.5. She said 16 is good for my age - I'm 35 years old and male.

I asked then what was causing my B12 to be so low and she shrugged and said "life".

Can anyone tell me what they hell is going on, please?

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12 Replies

  • Posted

    Hi my levels were 76. I was on PPI for long time. And also I am a pure vegetarian.

    I need a small favor. Do u have internal shaking? I am unsteady and have muscle weakness. Just wanted to know if this is a myleination symptom.

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    • Posted

      Hi,

      The general feeling of dizziness I had prior to starting my loading dosage of B12 shots a week or so ago has lessened significantly in the past couple of days. 

      I do have a feeling of 'internal shaking' - very hard to describe. What I may be feeling is the return of energy after being depleted of B12 for possibly a long period.

      Hope this helps. 

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    • Posted

      You are Vitamin B12 Deficient and it is the PPI and your diet that are the most likely to be the causes of it.

      The PPI lowers the acidity in your stomach and an high acid level is needed to "grab" any B12 you do get in your diet to carry it down to the lowest part of your digestive system the Ileum from where it gets into your bloodstream.

      Vitamin B12 can only be obtained "naturally" from eating red meats, fish, seafoods, eggs, poultry and dairy produce such as cheeses. If you don't have sufficient of these in your diet you won't get enough B12.

      If your Folate level is also low (which with you being vegetarian would be) surprising as Folate is obtained from leafy green vegetables, sprouts, broccoli, asparagus and is also to be found in some fortified breakfast cereals. 

      However, you need to have a healthy level of Folate to process the B12 as they "work together" .  

      What does your doctor have to say about your low B12 or are you having injections?

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  • Posted

    Did your nurse literally "looked at my blood test results on her computer and told me my body was lacking intrinsic factor. She told me I therefore had pernicious anaemia."?

     In a normal healthy person the stomach lining has what are called "Gastric parietal cells" which produce "Intrinsic Factor" which travels with food through the small intestine which is made up of three parts - the Duodenum, the Jejunum and the Ilium.. Iron is absorbed in the Duodenum, most other nutrients in the Jejunum and our friend B12 in the Ilium. Here the Intrinsic Factor binds to the B12 and the "B12/IF Complex" enters the cells on the wall of the Ilium after binding to receptors on the surface of the Ileal cells, allowing it to enter the blood stream.

    Sadly some people with "traditional P,A." either do not produce Intrinsic Factor or if they do, they also produce an antibody which destroys it and it is then called "Autoimmune Pernicious Anaemia". In addition it can happen that we produce "Parietal cell Antibodies" and "Iintrinsic Factor Antibodies" which totally wipes out any chance of absorbing the B12.

    Finally, it is not uncommon for some neurological symptoms to appear to get worse before they get better. Take this as a sign that the B12 is repairing the damage done to your nervous system.

    If the blood test your nurse was reading from said that you lack Intrinsic Factor then you do have P.A. and your doctor should treat you in accordance with the BNF Guidelines.

    By intramuscular injection, pernicious anaemia and other macrocytic anaemias without neurological involvement, initially 1 mg 3 times a week for 2 weeks then 1 mg every 3 months

    Pernicious anaemia and other macrocytic anaemias with neurological involvement, initially 1 mg on alternate days until no further improvement, then 1 mg every 2 months.  

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    • Posted

      Hi Clive,

      yes - that's what she said to me. She made clear, though, that I needed to go back to the doctor if I wanted any questions answering.

      I've obtained my full copy of my blood test, which the nurse was reading from. The relevant parts are as follows (I quote directly from the print out):

      1) Haemoglobin concentration (Xa96v) - 16.4 g/dL (13.5 - 17.5)

      2) Serum vitamin B12 level - 66.41 ng/L (155.87 - 1,355.4) Below low reference limit. Intrinsic factor antibody to follow 

      3)  Intrinsic factor antibody level (XaDsn) - 0.00 u/mL (o-1.19) Negative for intrinsic factor antibody. IFA is a useful test in the diagnosius of pernicious anaemia but has no role in monitoring disease.

      4) Serum ferritin level (XE24r) - 72 ng/ml Ferritin 20-100 cannot exclude iron deficiency with coexisting chronic or inflammatory conditions.

      5) Serum folate level (42U5.) - 6.3 ng/ml Serum Folate <3ug/L suggest deficiency. 

      Am I right in taking from these results that I do not any problems with my intrinsic factor, therefore I do not have pernicious anaemia, as I was told?

      It's all very confusing. I'd just like to know where I stand. 

      Cheers!

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    • Posted

      Sorry, further to my last my intrinsic factor antibody level was 0.99 u/mL NOT 0.00 /mL I incorrectly stated. Been a long day... 
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  • Posted

    Out of curiosity, were you experiencing any symptoms that resulted in them drawing labs for B-12 levels?
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    • Posted

      OK UKGUY now we are getting down to it.

      If there is no mention on your blood reports of "Parietal cell Antibodies" and you are "Negative for intrinsic factor antibody".then it is unlikely that you have P.A.

      However your "Serum vitamin B12 level - 66.41 ng/L (155.87 - 1,355.4) Below low reference limit.

      and "Serum folate level (42U5.) - 6.3 ng/ml Serum Folate <3ug/L suggest deficiency"

      plus "a vegetarian diet." means that you are Vitamin B12 Deficient and it is your diet that is most likely to be the cause of it.

      Vitamin B12 can only be obtained "naturally" from eating red meats, fish, seafoods, eggs, poultry and dairy produce such as cheeses. If you don't have sufficient of these in your diet you won't get enough B12.

      Your Folate level is also very low which with you being vegetarian might seem surprising as Folate is obtained from leafy green vegetables, sprouts, broccoli, asparagus and is also to be found in some fortified breakfast cereals. 

      However, you need to have a healthy level of Folate to process the B12 as they "work together" and at the moment yours is too low.  Has your doctor prescribed you Folic Acid to take whilst you are having the B12 injections?

      The treatment for B12 Deficiency is near enough the same as for P.A. and as long as you remain vegetarian it's likely you will continue to have the injections.

      I hope this answers your questions but please come back if you have any more.

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    • Posted

      Hi Clive,

      In reference to "Serum folate level (42U5.) - 6.3 ng/ml Serum Folate <3ug/L suggest deficiency" , what does 6.3 ng/ml equate to using the ug/L metric, please? I'll then be able to determin how deficient I am in folate/folic.

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    • Posted

      Do you interpret from the result that I am deficient in Serum folate level?

      I say that because when I type "what is 6.3 ng/ml in ug/L" into Google it would appear to be the same - justa different metric.

      The result states "<3ug/L suggest deficiency", so are they saying IF my level was below <3ug/L that would suggest deficiency. If mine is 6.3 that should make me OK, shouldn'tit?

      It's quite ambiguous, in my opinion. Maybe just how my mind works!  

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    • Posted

      I am not a medically qualified person and can only comment on what it said about your folate level suggesting a deficiency as too with your B12.

      Serum Folate and IF are two different things, 

      The IF (Intrinssic Factor) is produced in your stomach to combine with the B12 in food. 

      ​The Folate in needed in your bloodstream to process the B12 when it gets there.

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