Low B12 = Pernicious Anemia?

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Hello all,

Last winter (2015-16) I was sick, sick, sick. Anytime someone would sneeze near me I would catch pneumonia, bronchitis, or at least sinusitis. In the spring my doctor ran a whole bunch of blood tests and one of the things that came from that was that I had low B12. She didn't say it was causing my sickness, but that it makes you run down so you feel worse when you are sick, and have take more time with healing. I was getting B12 injections every month, and she kept testing my levels every 3 months to see if I still needed them. But I noticed that by the 4th week I was extremely tired, lightheaded and irritable, so she increased the shots to every 3 weeks. I still don't feel great. So tired all the time. I have a lot of lightheadedness, including orthostatic hypotension (which gets way worse when I'm fighting any infection). I have borderline low blood pressure (usually in the low 90s over 50s-60s), not sure if that is related. I don't sleep well - I often wake up 2-3 times a night and have trouble going back to sleep, or even if I seem to sleep through the night, my husband or my Fitbit tells me I've been tossing and turning all night. I even went to a sleep doctor and she ruled out sleep apnea and said to check for anxiety. I have days - sometimes just portions of days - where everything is just too hard - and I have 2 kids under age 5 so there's little chance of staying in bed until I feel up to anything. I don't think I'm anxious or depressed, but the irritability makes me wonder.

I asked my doctor a couple of times what causes this B12 deficiency. She says, "in some people, your body isn't able to absorb the B12 that you get from food." But why?? She doesn't have any more answers than that, she just says that there is a deficiency and so we are treating it. I don't have gastric issues (that I know of - although I do get constipation), I eat animal products. She has never tested for IF. She has done some CBCs which show normal hemoglobin, so is that why she's not calling it Pernicious Anemia? I just came upon that name when a doctor I was talking to (not as a patient) heard that I get regular B12 shots, and he said oh, you have percanous anemia? He was pronouncing it wrong so it took me a while to look it up ;-). My main question is, does it matter what we call it? I guess a diagnosis can be helpful in some ways in itself, but would the treatment be any different if we knew it was pernicious anemia? There was one test result that came back: "RBC Morphology ABNORMAL", is that common in PA? I don't think she has tested ferritin or folate, which I see has been recommended in this forum - what would be the benefit of knowing if those were abnormal, and what additional treatment would be needed?

Thanks for any help or advice. I think I have a good doctor, but she is often rushed so it will help to know exactly what to ask or say if I need to get more help than I am getting.

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6 Replies

  • Posted

    Your story sounds like mine. I am waiting for blood work test results to come back hoping they find out what is wrong with me. I had the flu and bronchitis a month ago and can't seem to get my strength back, and I can't sleep . Hope you get some answers. 

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  • Posted

    Pernicious Anaemia is a form of Vitamin B12 deficiency but you can be deficient without having P.A..

    As you mention you really need to have your iron and folate levels checked as they work together with B12 to make red blood cells.

    Have you been supplementing with folic acid?

    There are many reasons why you may be at risk of developing a B12 deficiency ranging from aged over 60, a vegan or vegetarian diet, gastric surgery, surgery involving the use of nitrous oxides, certain medications including antibiotics, metformin, antacids, proton pump inhibitors etc.If you have a history of eating disorders (anorexia or bulimia).of alcoholism or have a family history of pernicious anaemia. If you have been diagnosed with anaemia (including iron deficiency anaemia, sickle cell anaemia and thalassaemia). or Crohn’s disease, irritable bowel syndrome, gluten enteropathy (celiac disease), or any other disease that cause malabsorption of nutrients. If you have other 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,  

    Dou you see yourself as having any of the above "risk factors" in your life?

    A diagnosis of P.A. can only be arrived at by specifically testing for Intrinsic Factor and/or Gastric Parietal Cell antibodies

    "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 Ileum..

    Iron is absorbed in the Duodenum, most other nutrients in the Jejunum and our friend B12 in the Ileum. Here the Intrinsic Factor binds to the B12 and the "B12/IF Complex" enters the cells on the wall of the Ileum 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 "Intrinsic Factor Antibodies" which totally wipes out any chance of absorbing the B12".

     I am not a medically trained person but I have had P.A. for 45 years

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  • Posted

    I am surprised your doctor hasn't tested IF, or ferritin and folate. To be fair the Intrinsic Factor test is often inaccurate, but we need to have good levels of ferritin and folate for the injected B12 to be used by our bodies. We can have plenty drifting around in our blood stream, but unless it's reaching our cells we won't be getting any benefit from the injections. 

    Has anyone suggested that you take a good B complex vitamin tablet, to keep all your B's in balance?

    The RBC Morphology being abnormal I can't really comment on, as I'm only a fellow patient, but I do know that red blood cells can become enlarged with B12 deficiency. Perhaps this is what that result shows, but I'm not certain. Maybe someone else will be able to comment on this?

    What I will say is that, like you, I was very unwell when my B12 was low. I caught every illness going, and it left me completely wiped out. The exhaustion was totally debilitating, and all I wanted to do was sleep. I ached all over, with burning sensations on my skin, and numbness in my legs and feet. My balance was also badly affected, and I hit doorframes or walls with my arms and shoulders. Plus my brain seemed to be permanently struggling, for the right words when talking, or organising tasks.

    I hope your GP will manage your healing as well as possible, and that you will soon feel much better. 

    Best wishes


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  • Posted

    Thank you both so much for your replies! I asked my doctor to test iron (ferritin) and folate, and we got the results today and yes, my iron is low, so she's starting me on iron pills. She said the folate level was ok. I wish she had tested this a year ago, but I'm glad we caught it now. She really does seem like a good doctor and very knowledgable, maybe this just isn't something she's concentrated on much.

    Anyway, hoping the iron supplements will help with my energy, memory, balance etc. Any idea how long it may take to feel results? I've been doing B12 injections every 3 weeks for months (just got another today, yay) but just started the iron today. Also, she still didn't want to talk about an actual diagnosis, whether pernicious anemia or otherwise. She said I may have a genetic enzyme deficiency (IF?) but it's not worth testing, now that we know what to supplement. Should I just let it be with that?

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    • Posted

      That's good that your iron and folate levels were tested as I suggested earlier and even better now that you have been prescribed iron supplements and are getting treatment.

      As to how long before improvement a lot will depend on how low your level is but I think you need to give it three months and then get re-tested.  

      If your symptoms improve then it's "problem solved" although it's possible (as with me personally I am permanently on ferrous fumerate 210mcg every day for over 40 years) you may have to continue to supplement.

      I wish you well

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  • Posted

    Hi! You have wonderful advice here. One of the things that Clivealive touched on is that malabsorption could be lowering your B12 levels. Even if you don't have severe GI symptoms, you may want to have a Coeliac panel included in your next round of blood work, even just to rule it out. 

    I have low B12 and do not have PA nor CD (my son has the latter), but I did get the tests to be sure of that.

    The real reason for pinpointing a diagnosis in my view is to more carefully monitor and treat your health. If you have PA or any autoimmune condition, you could be at higher risk for other autoimmune conditions. So it's something to watch for going forward. If you have CD, for example, then B12 injections will bypass the digestive system and raise your levels but perhaps you won't improve as much because other deficiencies and issues that go along with Coeliac. (Like PA there are many issues and it varies greatly in each patient) And, again, as Clivealive mentioned, there are thyroid and other connected (and often autoimmune) conditions that could be the cause of your low B12.

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