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Second round of B12 injections? What's next?

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kcxo
kcxo

About a month before Christmas I got a blood test and it came back saying I had very low B12. I had already been taking cyanocobalamin tablets twice daily, as well as folic acid, for the previous 6 months, but I'm guessing it didn't work as well as they'd hoped.

I knew something was up, because I'd been sleeping for at least 11/12 hours a night plus an hour long nap during the day. My confusion had been at an all time high (forgetting names of TV programmes I've been watching for years, street names, random words etc) and my depression had started to resurface again.

They set me up for 3 injections twice a week for 2 weeks. I didn't really feel a difference in terms of physical health as I was still tired, getting dizzy and whatnot, but I returned 2 weeks later and got my blood taken again and when I went back for my results, they said my B12 levels were at 93. 

So, here I am again, getting the injections 3x a week for 2 weeks, 1x a week for 4 weeks and 1x every 3 months. The injections don't seem to be helping (at least I don't think so) because my levels shouldn't have dropped that low within a few weeks.

Does anyone know what happens if I go back after these 10 injections and my levels are still really low?

0 likes, 8 replies

8 Replies

  • lisahelen
    lisahelen kcxo

    Posted

    Could be you have an absorbsion problem. I dont know a great deal about b12d myself, diagnosed august last year but i have learnt from others on healthunlocked forum. Normally when its not responding they talk about having to have infusions or more frequent injections.
    • lisahelen
      lisahelen

      Posted

      Also some people respond better to a different format of b12. It unfortunately isnt a one size fits all where that is concerned, some can use cyan quite effectively, others hydroxo, many advocate methyl. As far as i can work out its how your body breaks down and utilises the b12 you have been given.
    • lisahelen
      lisahelen

      Posted

      Try the pernicious anemea website too
    • kcxo
      kcxo lisahelen

      Posted

      I think they're checking to see if it is an absorption problem because they tested my intrinsic factor on my last blood test and are going to check it again after this round of injections are finished. 
  • marion29181
    marion29181 kcxo

    Posted

    You can be low in other things that are needed for the B12 to be used. For example ferritin and folate. Did your doctor check these? I suggest you have a look at the Pernicious Anaemia Society website, there is a lot of information on there. Also any of the books written by Martyn Hooper, (founder of the Society), go into more detail about the condition.
    • kcxo
      kcxo marion29181

      Posted

      I have a folate level of 2.4 and I think it's supposed to be around 4.5, so that could be causing issues, too. I have had my ferritin checked in a previous blood test (probably about 3+ months ago) and the Doctor didn't suggest that anything was wrong with that.
  • clareb
    clareb kcxo

    Posted

    I'm still learning but, I have been told that Folate should be nearer to 15 (top end) to utilize the B12 properly.  I have bought some 5mg folic acid tablets from Amazon - my folate is 12.5.  It's worth a try!
  • john43061
    john43061 kcxo

    Posted

    Hey kcxo,

    I've been told me B12 levels are "quite low" by a nurse after getting my test results back. (Not sure how you measure levels using the word 'quite') And my doctor put me on a months supply of cyanocobalamin to be taken once a day. But they don't seem to do much.

    I'm replying because I am curious if whenever you eat dairy such as cheese, or eat meats such as chicken while being idle like watching television. Do you notice a build up of energy? I've got this thing where I will eat cheese and chicken because they make my symtoms lessen but whenever I do an activity like take a shower I lose all my energy and go back to feeling worse again.

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