B12 deficiency but intrinsic factor fine

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Hi, 

I am a vegetarian. The first time I was diagnosed with b12 deficiency I was 21 and had been vegetarian for many yrs. I had severe symptoms. I had never even heard of b12 before. I was very sick and experienced ;faintness, dizziness, headaches , breathlessness and more. I thought it was all in my head and kept pushing myself. By the time I went to doctor I lost half a stone in a few days. I can't remember what my b12 level was but it was def at extremely low end. I got the b12 injections and was tested to see if intrinsic factor was working and it was. A few years later I was diagnosed again with b12 deficiency. I got the injections again and all was fine. 

Just this week 8 years since my first time with b12 deficiency I went to the doctor again as I was feeling dizzy and lightheaded and exhausted . I had my blood done and got call to come in and get injection as my b12 just over 100 mark. This is my third deficiency in eight years. I take a vitamin B COMPLEX fairly regularly. I am a vegetarian but not a vegan. I eat cheese fairly regularly nearly every day. I feel sick if I drink milk or eggs in their raw form but I drink hot chocolate, eat pancakes etc. The last few times intrinsic factor was tested  it was fine. Is there any other reason I might not be absorbing it ? I also suffer from depression/anxiety and take low dose sertraline. I have symptoms of IBS and get stomach cramps. I was thinking this might be reason as it is the intestine that absorbs b12. I have different doctor over the years but the doctor I have now has said we will monitor my levels closely this time . Does anyone have similar experience in that they take supplements but b12 goes low? I hope my nerves are not damaged from lack of b12 over the years. I get weird darting, throbbing pains  that I think could be nerve damage but it is not bad pain. I just hope it doesn't come back to haunt me years from now. Thank you for any help. 

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2 Replies

  • Posted

    Being vegetarian and possibly having IBS puts you at risk of becoming Vitamin B12 deficient and you may have an absorption problem with your digestive system too.

    Symptoms of B12 deficiency tend to develop slowly and may not be recognised immediately. As the condition worsens, common symptoms include:

    Weakness and fatigue

    Light-headedness and dizziness

    Palpitations and rapid heartbeat

    Shortness of breath

    A sore tongue that has a red, beefy appearance

    Nausea or poor appetite

    Weight loss

    Diarrhoea

    Yellowish tinge to the skin and eyes

    If low levels of B12 remain for a long time, the condition also can lead to irreversible damage to nerve cells, which can cause the following symptoms:

    Numbness and tingling in the hands and feet

    Difficulty walking

    Muscle weakness

    Irritability

    Memory loss

    Dementia

    Depression

    Psychosis.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.

    Sadly the Intrinsic Factor Antibodies (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.

    It is also 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.

    It is not uncommon for some symptoms to appear to get worse before they get better as the B12 starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.

    I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.

    A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery. Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.

    I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.

    I wish you well  

    • Posted

      Thank you very much for your reply! There is so much interesting information there.  I didn't realise intrinsic test could be unreliable. I am going to make sure my b12 level is carefully monitored this time. Yeah I guess it takes time for the body to get used to the intake of b12 again and hopefully all will be fine smile thanks again smile 

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