B12...confused?

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Hello All,

I was diagnosed with B12 deficiency this week and began daily 5mg folic acid treatment.

This was done briefly by phone so I didn't get the chance to ask much about it.

It might sound ridiculous...but I seem to have been even more tired since I started on the folic acid?!?

(I read elsewhere on the forum that this could be due to the treatment starting to repair the damage caused by the B12 deficiency?)

I've had a roller coaster year with major prolapse surgery last August with a very slow recovery and now rectal dysfunction - neurological - resulting in chronic constipation.

I suspect my B12 issue may have been long standing...possibly 2 years or more.

My Dr. mentioned she wanted to see if my gut was able to absorb B12.

Would that be why she prescribed tablets rather than injections?

My Dad had pernicious anaemia in his 70's and I've also been on a proton pump inhibitor for 4 years for hiatus hernia.

I've had to adopt a low residue diet for several months due to the chronic constipation issue and have a very poor appetite.

I'm sleeping an average of 10-12 hours a day and still feel bone weary.

I'm only 63 but feel like a little old lady with constant joint/muscle pain and simple everyday things requiring a major effort and leaving me exhausted afterwards.

Any information/advice would be really appreciated.

 

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  • Posted

    Hi there.

    You probably have an absorption problem through your digestive system due to the PPi, your age and possibly your "low residue diet" as B12 can only be sourced naturally by eating animal products.

    It is not uncommon for some symptoms to appear to get worse before they get better as the B12 starts work repairing the damage done to the nerve endings caused by the deficiency. Make a list of your neurological symptoms and score them on a scale of one to ten on their improvement or otherwise on a daily basis.

    You don't say how long the prescribed treatment is for but if there is no improvement after a month present this list to your doctor and ask to have a trial of B12 injections.

    Iron, B12 and folic acid work together to make red blood cells and if you are deficient in one or other they won't "work" properly hence the need to supplement both B9 and B12.

    Does your doctor know that your Dad had P.A. as this can be "inherited"? He may need to test for intrinsic factor and gastric parietal cell antibodies

    I am not medically trained but I've had P.A. for 45 years and I'm still "clivealive" at 75.

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    • Posted

      Hi Clive, thanks very much for that - its a great help.

      I've got 1 month's worth of folic acid then I'll go and have an update with my GP - she doesn't know my Dad had PA.

      I'm also taking a vitamin B supplement.

      So here's hoping I might be I might be a bitmore energised in a few week's time...thanks again

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    • Posted

      Here is a little bit of information on Pernicious Anaemia so that if (because of the family connection) your doctor decides to test you for it you will be able to understand what it's all about.  You may even know more than he does...

      "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."The treatment of P.A is simple and relatively cheap - a B12 injection every 8 weeks for the rest of your life.  I was "given two years to live" when I got my diagnosis in 1972 - unless I had the injections - I guess they're still working.

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    • Posted

      Hi Clive, I've read up on a lot of stuff and your version is the best summary!

      My only query is why my GP is trying out folic acid first "to see if my gut will absorb it" rather than going with the injections?

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    • Posted

      Strange indeed as it is generally reckoned advisable to start B12 treatment before taking follic acid.

      "Causes of deficiency include reduced intake from the diet or from poor absorption through the gut; increased demand for folate (for example, pregnancy) and side effects of some medication (for example, methotrexate). Symptoms of deficiency include fatigue, mild sensation changes and depression. Prolonged lack of Folate results in megaloblastic anaemia (a red blood cell deficiency in which the cells are characteristically large)"

      As I said earlier Iron, B12 and folic acid work together to make red blood cells and if you are deficient in one or other they won't "work" properly hence the need to supplement both B9 and B12.

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    • Posted

      I think I will ring in and ask why the folic acid tablets rather than the injections.

      Thanks so much for the advice and information.

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    • Posted

      Remember I am not medically trained so anything I have said must be weighed against your doctor's qualification and experience.

      I had to "fight" for nearly six years to persuade my "one size fits all" doctor to increase the frequency of my B12 injections because of the return of neurological symptoms in the run up to the next scheduled one.

      I had "lived" in total ignorance of what P.A. was all about for the previous nearly 40 years and believe me ignorance was definitely not bliss.

      I joined the Pernicious Anaemia Society in 2010 and was amazed to find that there are thousands like me "out there" who had the same problems and so began to learn all I could about the disease.

      Try to remain calm in any discussions with your GP, list all your symptoms and present them to him and write down what it is that you want to say as it is difficult to remember details when face to face.

      I hope everything goes well for you.

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