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Lifestyle changes with a B12 deficiency

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Daisy2010
Daisy2010

I posted on here a month or so ago with questions relating to my very new diagnosis. I had all my 6 loading sessions finishing maybe 2 weeks ago and I'm not sure how else I can support myself in the mean time.

The whole reason the B12 was discovered was due to my debilitating and excruciating pain in my upper abdomen (which feels very much like an ulcer). The pain is still carrying on regardless of the loading shots and I'm seeing a gastroenterologist next week for more tests.

I feel woefully underinformed and don't know if I should be taking b12 or folic acid (I'm not even sure what that is or how it would help!). Or whether I need a certain diet as a B12 deficient person. Or how I might relate to my stomach pains in the knowledge that I have this deficiency.

Any help would be very welcome as I'm getting quite desperate now!!

Thanks

D

0 likes, 10 replies

10 Replies

  • jazzyanne
    jazzyanne Daisy2010

    Posted

    You need folate for the b12 to do its job, and am sure b12 uses ferritin so all these should be in a good range x
  • Jen0609
    Jen0609 Daisy2010

    Posted

    Hi Daisy,

    I completely sympathise with your desperation...I too am at this point with my B12 deficiency. I'm currently at 4/6 of my loading dose and feeling worse!!

    I have a discomfort in my chest so unusual to explain that just wont go away with nerve pain in my armpit and arm which after many tests they cannot find anything wrong so they think its down to B12. Its infuriating and scary at times!!!

    I have newly diagnosed Coeliac disease which they think has caused me to not absorb the B12 from my diet (the dietician said my diet is fine) she told me that plenty of meat and fish is good for b12.

    I have just bought suppliments to try and help as well. They are from holland and Barret (not sure if you are in the uk) they are a vegan supplement and are packed with b vitamins plus calcium, vit D, Vit C etc. The dietician said these should help top me up so maybe you could try something similar. I have also just bought a vitamin b12 spray that i am going to check the doctor is happy for me to use as well to try and aid my levels once the loading dose is complete...perhaps this may also help you!!

    I'd try anything to make this feeling go away!!!

    Jen

    • jazzyanne
      jazzyanne Jen0609

      Posted

      Hi Jen have you had your folate and ferritin check as they all work together with b12, plus just be aware alot of holland and barret vits. have additives and fillers in them
    • Jen0609
      Jen0609 jazzyanne

      Posted

      Hey smile yep they have checked those and are both okay at the moment. I was only low in B12 and Magnernese for now. Thank you for the note, I did have a look to see whats in them as I have to be so careful (with gluten and lactose at the moment) but will only be using them as a short term solution for now smile
  • isabel1
    isabel1 Daisy2010

    Posted

    Hi Daisy

    usually at the botton of this page is a link to tap on for PAS (pernicious anemia society).  They have so much information on PA and they have a forum you can join,  you can phone them too and they will give you a lot of help.  I dont know what I would have done without them as they helped me get my injections every 6 weeks instead of 12 weeks by giving me the correct informatin to give my doctor.

    i hope you can get some help.  Best wishes.

    • Daisy2010
      Daisy2010 isabel1

      Posted

      Thanks for your comments. Jazzy Anne - do you know if these are in the usual run of the mill blood test or do they have to be tested separately?

      Jen - I felt horrendous after my first injection. Honestly, it was like the worst flu I've ever had and few 2 weeks after them I had very bobbly skin and acne on my face (I've never ever had any skin problems and rarely have spots) but from my Internet searching there are some side effects which I think vary per individual.

      Isabel - thanks for the reference to the PA society, I took a look when I was first diagnosed but didn't know they did such a service.

      Did anyone else experience gastrointestinal symptoms like mine?

    • jazzyanne
      jazzyanne Daisy2010

      Posted

      Hi Daisy You would have to ask as most gps in the uk dont really test unless we ask, its a shame to say most dont realised they all work together  b12 folate and ferritin x
    • Guest
      Guest Daisy2010

      Posted

      Hi yes I had my last injection last week had indigestion and my sling had lumps with small pimples horrible , I had once week for 4 weeks and waiting for blood test after 12 weeks to see if worked and need quartly 
    • Dena58
      Dena58 Daisy2010

      Posted

      Daisy,

      9 years ago, I was bedridden for 18 months without a diagnosis and going from Doctor to doctor. Finally, I went to a doctor that diagnosed me with Intrinsic Factor Antibody with Pernicious Anemia.

      He was flexible and open to researching this. He admitted to me that nutrition studies are a minimal requirement in medical school.

      Here in the US, the majority of doctors I have seen for the GI, cardio, skin, and all of the other problems the IF with anemia caused, tell me they know nothing about it.

      I have stomach pains so serious I thought I was having a heart attack at times. It was explained to me that the Intrisic Factor Antibody with PA kills the stomach lining. The most common side effect is stomach cancer.

      I take 300mg of Rantidine twice a day to manage the acids. This is twice the over the counter recommendation. I was told by the GI that any of the drugs under Proton Pump Uptake Inhibitor should not be taken because they thin the bones and the anemia already does that.

      My stomach pain is not a periodic thing rather that all day.

      Dena in the USA

  • Dena58
    Dena58 Daisy2010

    Posted

    I have taken over the counter Rantadine for years now since being diagnosed. Alcohol and acidic foods cause my stomach to be at it's worst.  I found a book at Amazon named "Could it be B12?"  This has been a good source of information.  If your anemia was brought about because of Intrinsic Factor Antibody, you will not absorb B12 through you GI system ever again and is not reversible. I inject 3ML of cyanacobalmin once a week. to keep mine up.  I take so much because after 4 years of injecting 1 ML every 6 weeks, it was discovered that my body doesn't hold it well. After increasing frequency of injections, it was decided that since your body will hold what it can and dump the rest, 3ML once a week has been good for me.
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