Not sure I have Perniciuous Anemia

Hello, my name is Susana and I am from Mexico. I am 40 years old and I have been suffering with anemia for one year. I have been seeing quite a few doctors and they do not know what is wrong with me.

I started with an internist, then nutrisionist, hematology, rheumatology and my gynecologist. I have been eating iron-rich foods and taking iron supplements for one year. I felt better for some months but know I am starting with the same symptoms.

I am so glad that I have found the Perniciuous Anemia Society because as I was reading the symptoms is really how I feel every day. I asked for my B12 tested and It came out with 180. Would you help me? Do you think it could be perniciuous anemia? Which of the doctors that I have been seeing is the best for treatment?

Sorry If my writing English is not the best. Regards. Susana

13 Replies

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  • Hi Susana,

    Do you know what type of anaemia you are suffering from? There are two main types; macrocytic and microcytic.

    This bit can be quite important.

  • Not really, the levels that I have low are HB and Ferritina Serica, I do not know the concept for the last one in english.

  • The Ferritina is iron, but I am not sure if it is stored or not. The translation comes out as serum iron.

    Your B12 level is low. It may still be in the normal range for 'laboratory purposes' but it is low.

    What physical symptoms do you have?

  • Some days I don’t have the energy to continue with my normal routine and I need to rest or sleep during the day. I am always tired. Last year I have had diarrhea almost every day, right know I am having diarrhea once or twice a month. Some months I have head ache every single day. I feel dizzy and I lost weight.

    Some days I am very irritable, I feel like I am driving myself crazy. For some months I felt the necessity to eat ice cubes all they long, then it stopped. Right now I am thirsty all they long but I need to drink something really cold to feel better. Sometimes I do not feel the need to eat at all.

  • Okay.

    The symptoms of anaemia are all the same (we won't include sickle cell anaemia). Anaemia is a lack of oxygen in the blood. This makes us tired, dizzy etc.

    The name pernicious anaemia is today very misleading.

    This is because the term 'pernicious' comes from a time before they knew what was causing this particular anaemia.

    Before it was called 'pernicious,' it was called, 'idiopathic' which also means they did not know what was causing it.

    So, it's name today is based in history and from a time when patients had this anaemia, and although doctors understood other kinds of anaemia, they did not understand this one.

    Because they did not know what caused it, they could not cure it, so the patients died.

    However. Other symptoms which also appeared with this anaemia were those of what is called 'neurological degeneration.' Patients would lose their balance, they would get weak limbs and muscles, they would get tingling in hands and feet. Eventually, when they died, most people died of these symptoms and not of the anaemia.

    At the time it was thought that the anaemia caused these 'neurological' symptoms, later it was discovered that this was not the case. That in many people the neurological symptoms appeared first, or at the same time as the anaemia. In some people the anaemia never appeared at all.

    But pernicious anaemia differs from iron anaemia in the blood. One makes the blood cells larger and the other smaller - either way they cannot carry the oxygen and the patient gets the symptoms.

    A further problem is that many people have BOTH types of anaemia. This is what confuses blood test results. Particularly today when it is not someone looking down a microscope at the blood but simply a machine measuring the sizes of blood cells.

    The problem in your case is that the doctors seem to be treating you for iron anaemia but not looking at the low B12 levels.

    Have you tried supplementing with B12 yourself to see what happens?

    Although be aware - if you take any B12 medication your B12 levels will rise whether you feel better or not.

    I hope this explanation is clear for you - and not too long!

  • Thanks a lot for your help. I think I understand better.

    Thanks for your time.

  • What we need to try and find out, is if you have both an iron deficiency anaemia AND a B12 deficiency anaemia.

    Because they both cause the same anaemia symptoms.

    It is very confusing. We all talk of anaemia as if there is only one kind - but there are several.

    It seems to me - and I do not know what has been done so far - that you could have an iron and B12 anaemia. Your B12 is low. Have your doctors spoken about this?

  • My doctors have not talk about B12 at all. I have my B12 tested after I found the Pernicious Anaemia Society.

  • Hi ssfoyo ,

    A haematologist is best for anaemia, a gastro good for mal absorption problems in stomach and or bowel issues. If you can try to get copies of blood tests so you can see what the ref range for normal is. If your serum B12 is 180 and ref range is 150 - 800 then you can see you are on the low end. A haematologist should be able to do further tests to see if you have a blood problem, be able to test for antibodies that would cause pernicious anaemia, other test such as liver function etc, a gastro can do test to see if you have abnormalities in bowel and or gastric problems such as not enough acid or to much or H Pylori infection, or celiac etc. All should be looked at and hopefully you will get a firm diagnosis in time,

    Wishing you good luck and that something conclusive will be found,

    Kind regards,

    Marre.

  • She's already been to see a haemo, Marre. Seems a whole bunch of doctors have looked into it.

  • Thanks a lot.

  • Yes it is possible that you do have pernicious anemia and your b12 is definetly low enough to be causing symptoms. Is it possible for you to get b12 injections where you are? The easiest route is probably just to get treated for low b12 and see if the treatment improves your symptoms. Unfortunately eating healthily and taking b12 orally has a very limited effect on your b12 levels as most the time the reason it gets low in the first place is because your body is not absorbing it properly, either due to gastric problems or Pernicious anemia. This is why b12 deficiency is treated with injections. Good luck

  • I dont want to have any B12 injections until I know whats wrong with me but this information is helping me a lot. Thanks

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