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Recently diagnosed b12 deficient...insights appreciated!

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FJ1994
FJ1994

Hi all, 

I've recently been diagnosed as having a b12 deficiency and am still looking for answers to a questions. I know I should ask the doctor but our time slots for the injections are so short I never seem to get the time.

A bit of background: the reason I was initially sent for blood tests was because I went to the doctor complaining of chest pain (a tight band across my chest intermittently). When asked about other general health I mentioned I constantly felt tired by about 2pm regardless of how much I had slept. However, I was still about to go out and socialise despite being quite wiped out after. He send me for an ECG (clear) and blood tests (FBC as well as intolerance/coeliac tests and I have constant stomach cramps). 

These came back with a b12 level of 154 and he recommended 6 injections of b12 over 2 weeks, then once a month every three months with repeat bloods to be done in 6 months to see if my levels are raising. 

So my questions are as follows:

It seems like in the last few weeks I've been getting even worse fatique - having to cancel plans and barely making it through the whole work day fatigue. A few weeks ago I was struck down with what we presumed was a virus for four days - unable to stay awake and had to take time off work as I was so weak. Since then I've noticed a definite worsening of how tired I get. Its like a whole body weakness vs. just being a bit sleepy. Is it normal to have some periods where b12 deficiency causes bad fatigue and others where you feel just a bit sleepy?

Also - does anyone know the likelihood of my intolerance/coeliac tests coming back as positive? These apparently take longer to come back but I'm anxious to know if there's a positive association between the two. 

Thirdly (almost done!) - can someone actually clarify when a b12 deficiency is just that vs. when it becomes anaemia

Finally (!) - What is the likelihood that my repeat bloods will come back normal i.e. just have this course of treatment is enough to keep my levels up?

Thanks in advance for anyone who actually reads all this!!!

2 likes, 2 replies

2 Replies

  • clivealive
    clivealive FJ1994

    Posted

    I am not a medically trained person but one who has had P.A. (a form of B12 deficiency) for 45 years.

    It is not uncommon for some symptoms to appear to get worse before they get better as the B12 you are having injected starts repairing the damage done to your nervous system.  It'a a good idea to list all your neurological symptoms and grade from one to ten them every day on their improvement or otherwise.

    Do you know what your Folate level is?  It is essential to keep this at a healthy level whilst receiving the B12 injections as they work together with your iron to make red blood cells.  If you don't have an absorption problem folic acid can be sourced by eating leafy green vegetables, broccoli, sprouts, asparagu,, beans, peas etc..

    Apart from your awaiting "intolerance/coeliac tests" do you have any idea why you became B12 deficient?

    The list of people "at risk" is long and if I try to post it here it will likely get moderated and deleted so I could send it in a private messge if you are interested.

    • FJ1994
      FJ1994 clivealive

      Posted

      Hi Clive, 

      Thanks for the reply - apologies for the delay in responding!

      The doctor didn't seem worried about my folate levels as it wasn't mentioned during my blood test results, so I'm unsure what the result of this was. 

      I've now had four b12 injections and am most definitely seeing the improvement - mostly I can stay awake for the full day now!

      However I am curious why I would have become b12 deficient in the first place - now I am aware of what feeling 'well' feels like I can trace feeling unwell for about a year. I eat everything that the internet seems to say carries b12, presumably this is why my doctor thinks it may be an absoprtion problem related to an intolerance. 

      However my gastrointestinal problems have been significantly less of an issue since beginning b12 so I'm not sure if they were a ocnsequence rather than a cause. 

      It would be great to get some insight into 'at risk' people. 

      Additionally - what is the distinction between PA and a simple deficiency as this is something the internet doesn't seem to be able to clarify an awful lot

      Thanks!

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