Recently diagnosed and wondering how everyone deals with this?

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Hi there, I was recently diagnosed with Pernicious Anemia aged 21 and wanted to find out how everyone else copes with it?

I have finished my loading up period of 5 B12 injections in 2 weeks yet I still feel the same as I did at the beginning. I am constantly tired, I am getting quite forgetful which worries me and I have also broken out in spots on my face, upper chest, back and a little on my legs. I work in retail as well so I have to stand all day which I seem to have major difficulty doing and I'm unsure as to whether this is down to the anemia or laziness.

I also find exercising really difficult or even trying to find the energy to exercise is the most difficult part (although I guess this is normal for most people!). However when that rare time comes when I do exercise, afterwards I feel terrible with fatigue and general out of breath for longer than I should be.

Drinking alcohol also has an extreme effect on me, although I have read drinking alcohol uses the B12 quicker or something along those lines but I am exhausted for 2-3 days after drinking alcohol and I just want to know if this is something I should cut out as well?

Basically I just wanted to know if these sorts of things were normal and if anyone can offer any advice to coping with it and some reassurance that it gets better than this! (I hope)

Thank you in advance.

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  • Posted

    Hi Danielle-1, Many of the symptoms that you describe can be due to B12 deficiency and then pernicious anemia. Do you know why you got the PA? Have you had antibody tests for it, or were you just found to have very low VB12 levels and low red cell numbers. Are you deficient due to your diet, etc? Did you have injections of cyanocobalamin or did you get hydroxycobalamin. In many individuals (up to 50%) injections of these two forms, whilst raising serum levels of vitamin B12 to normal, have no effect on symptoms. You may need to be treated with the mix of adenosyl/methyl VB12. Adenosyl B12 gives you energy, which you seem not to have, and methylB12 helps you also to generate energy through the creatine phosphate system and also helps you to metabolize alcohol. If you really do have PA you will need injections for life, so it is important to resolve some of these issues very early on. Good luck.
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  • Posted

    Hi there, thank you for your response. I am not sure as to why I have it although I could take a wild guess as to say it may be my diet. The nurse who carried out my first injection had told me I would need them for life as I have pernicious anemia but I haven't been given much information apart from that as I am waiting to speak to my GP this week about it.

    I had the cyanocobalamin injections. I was told some people don't feel any different after receiving the injections but most people I have read up on or spoken to feel great after them and was hoping I would too but unfortunately not.

    If it is possible to overcome these issues it would be great as I have the face of a teenager with all these spots! I just wanted to hear from other people who suffer from this as I said I haven't been given any information really and it has all been self research.

    Thank you.

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  • Posted

    Danielle-1 yesterday I was looking up B12 deficiency and came across this useful site - b12d.org

    It is a support group for those with B12 deficiency and like all support groups will give you useful information about your condition.

    I was only looking it up because I was trying to find out what other deficiencies non-anaemic iron deficiency was linked to. In your case you probably will need to get your ferritin levels and folate levels checked as well.

    Good luck.

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  • Posted

    Thanks for both your responses.

    Thank you for the link Sarah I will look into this. I will also ask if possible to see my blood results, considering they did take a lot of blood. I was on folic acid tablets for a month there as well whilst receiving my injections.

    I forgot to mention on my last post that I have had my blood tested 3 times and I am currently waiting to get my celiac results back which I think I will receive tomorrow when at the doctors as it was done about 4-5 weeks ago.

    You are probably correct that I have been deficient for so long as I used to think I was just lazy when I couldn't be bothered doing things. It wasn't until I got severe abdominal pain that I contacted the doctors.

    I hope this can be helpful to others and not feel left in the dark like I have been.

    Thanks again for your help and support!

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  • Posted

    I was wondering if anyone can tell me if vitamin B12 injection is available OTC in the UK and what they generally cost? I do self injection so in the past I'v not bothered to get my GP to administer the injection. Thanks for your advice and comments.
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