Low b12 not anemia very confused

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Hi everyone my story is abit complicated I went to the doctor a few weeks ago with symptoms of what I thought was ulcerative coilitis I was diagionsed with this about 3 years ago but haven't had any more problems. So he wanted to do some bloods to see if there was inflammation there wasn't but my b12 was low so they gave me some tablets for that my Toluca acid was also low so some for that too. Then he did a blood test to check for pernicious anemia too that came back today negative. I'm really confused as I was convinced it was the anemia and that more than likely I'd get injections but reading through the Internet on why people don't have enough b12 it seems like it's diet related! Could it be related to coilitis I just feel like i don't know very much about either condition

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  • Posted

    hi tablets are really only given to vegetarian's if low b12 is caused by diet, can you remember your level, you really should be on injections as they reach the cells where its needed, plus you should take folic acid as both work together, plus i dont think taking tablets would help your  coilitis, most people with digestive probs cannot absorb  b12 x there are great groups on facebook with lots of info on the subject

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    • Posted

      Hi thanks for your reply I am taking folic acid aswell I should have said that. I'm not sure of my levels they never told me the numbers but I have asked the doctor call me back on Monday they also said my cholesterol was abnormal but it wasn't a concern. Looking online has confused me as I have picked up what you have said that low b12 only really affects vegetarians. The tablets they have prescribed are cyanocobalamin. I was convinced it was my coilitis that was given me trouble as some of the symptoms are similar and I've only ever had one flare up. I felt relived when I thought it was my b12 as it seemed easier to treat but now am worried these tablets won't work I've been taking 3 a day for the last week and haven't noticed any change

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    • Posted

      plus they will give you a false b12 reading if your gp wants to recheck, i will email you on here the name of the groups to join
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  • Posted

    The colitis is probably causing your problem with absorbing B12. So I would suggest anything that relies on your digestive system won't work. The test for pernicious anaemia is notoriously unreliable. Many people test negative before eventually getting a positive test result.

    I feel your GP ought to be giving you B12 injections.

    Do you know what your actual level was? Can you get a copy of your test results?

    I would suggest that you read a book that will help you understand how serious Low B12 can be. Martin Hooper, the founder of the Pernicous Anaemia Society, has written several. There is also "Could it be B12" by Sally Pachlok  (spelling might be wrong?)

    Hope you feel better soon? Marion 

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    • Posted

      Hi Marion thanks for your reply, i don't know my results but I'll check with the doctor on Monday. I didn't know that the test was unreliable seems silly for them to waste time doing it when it seem the most common cause is pernicious anemia. I feel abit frustrated in the sense that the doctors don't explain anything. I have read about the side affects which is worrying considering the tablets won't work if injections are needed. It's silly but I'm 23 and honestly feel like they sometimes don't treat me like and adult as if I'm just making it up i originally went to the doctors because of all the issues with my stomach other than fatigue the main symptom I have is severe bloating that I've had for weeks now.

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    • Posted

      Hi there. I'm not a medically qualified person but one who has had Pernicious Anaemia for 45 years. You've had some good advice on here already fro Jazzyanne and Marion but to explain in a bit more detail about the causes of B12 Deficiency and P.A. look at the following list:

      "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 including the contraceptive pill..

      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.

      Women with a history of infertility or multiple miscarriages.

      Infants born to and/or breast fed by women who are symptomatic or are at risk for B12 deficiency."

       You can obviously ignore the "Over sixty" and the last one about infants but can you "see yourself" in any of the other people?

      I'm not sure whether you are still suffering with the colitis or what "Toluca acid" is but any stomach medication that alters the acidity may well cause B12 absorption problems. Are you being treated with anything for your "severe bloating"?

      Sadly many GPs have little or no understanding of the importance of Vitamin B12 and they should be treating you, the patient and your symptoms rather than just reading their computer screens.

      As Marion says, the Intrinsic Factor test is at best only 50% accurate but here is an explanation of what IF is about.

      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.

      I was 17 years old when I had two thirds of my stomach removed but it was 13 years before I got diagnosed with P.A. at 30 years of age, by which time I was a walking Zombie due to B12 deficiency.  I was "threatened" by my then doctor with a diet of raw liver, three times a day and given the alternative of injections of cyanocobalamin every four weeks for the rest of my life. - I chose the injections biggrin 

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    • Posted

      Thanks Clivealive, the original post where I have written Toluca was thanks to auto correct on my phone should have said folic acid oops. No they haven't given me anything for the bloating in fact recommended if there was no pain but it is uncomfortable not to take thing. My understanding so far was was that if you lacked b12 in your diet the oral medication would help as your body can still absorb it but in basically any other case it's likely you need injections as your body can't?? I also wasn't aware the test was so inaccurate but that's good to know when I speak to my gp. I'm not currently taking medication for my colitis am waiting to go back to the hospital about it to be honest I was very naive when I was first diagnosed with it. I thought the doctor would have said I was having a flare up and prescribe more of the medication I had a few years ago. However after these tests he doesn't think it's a flare up I'm having it's made more confusing as the symptoms for both conditions are similar.

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    • Posted

      Ah! Well both your B12 and Folate were low - the two go together like peaches and cream so your doctor was right to prescribe both as Folate is essential to process the B12.

      I would suggest you ask your doctor for a trial run of B12 injections to see if there is any improvement to your symptoms.

      Please let me know how you get on and be assured that (if you do have it) there is life after P.A as I'm still "clivealive" at 75.

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    • Posted

      Thanks for your advice Clive. I had a little chuckle there at "still clivealive at 75" I'll update after I've spoken to the doctor on Monday.

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