Beginner1 again update

My latest blood test result is in, but the GP hasn't phoned yet.

Original B12  103 (180/1000) 

now  B12   343 ------(Normal)    after 5 loading injections and 12 week gap.  

Folate has gone up -  (4.3  to  5.00)      I have been stuffing myself on spinach and asparagus. 

Neuro. symptoms still around but I think, slightly better after a week of the B12 spray and feel better generally.

Any thoughts on this.

I am expecting "no more injections - you are normal - another blood test in 3/6 months."   

11 Replies

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  • Firstly, have you been tested to find the cause of your B12 deficiency? If, as is most likely, it's due to a problem with absorption then you need to have regular injections for the rest of your life. There's no point in getting tested again, which is what the experts say.

    frankhollis.com/temp/Summar...

  • Have been tested for Coeliac  -  very unlikely

    Sugar - OK   ( Diabetes?)

    IF - negative

  • If they tell you "no more injections - you are normal - another blood test in 3/6 months.", counter by requesting another test in one month instead. That way you can determine how fast your levels fall (plus you might be low enough to get injections reinstated right away again). The downside is that you would have to be sure not to supplement extra B12 during that time, or the results could be skewed.

    You could also ask for an active B12 test to determine if you are getting enough benefit from the B12 floating around in your blood, since the serum B12 test includes inactive B12 that your body may or may not be able to use.

  • Thanks for the answers.  Is the Active B12 test accurate, and does it work if one has been supplementing.  I can't go without the spray, I don't think I have had nearly enough 'make up' B12 yet.

    I am pretty sure it is an absorption problem.

  • The active B12 test will be affected if you're supplementing.

  • Your B12 was very low and GP should have treated your neurological symptoms as defined by the BNF in the various BCSH, NICE, UKNEQAS guidelines:

    "The BNF advises that patients presenting with neurological symptoms should receive 1000 g i.m. on alternative days until there is no further improvement." 

    Adequate treatment with injections and supplements from the outset is essential to avoid permanent neurological damage and many doctors fail to realise the importance of this:

    stichtingb12tekort.nl/weten...

    "The treatment with high dose B12 injections is not only completely safe but fortunately also very effective. With the right treatment patients can recover completely. Starting straight away with treatment is essential, as is the continuing treatment in order to give the body enough B12 to fully recover. Therefore it is essential that patients are no longer exposed to the real danger of irreversible symptoms because of the imaginary fear of overdosing."

    cmim.org/pdf2014/funcion.ph...

    The above BMJ research document is supported by many research papers and has a useful summary if GP won't read the whole document.  

    It also tells GP (bottom of page 4 under, "How is response to treatment assessed") :

    "Cobalamin and transcobalamin levels are not helpful because they increase with vitamin B12 influx regardless of the effectiveness of treatment and retesting is not usually required".

  • I agree- symptomatic response means continue treatment according to the experts and call it intrinsic factor negative PA- BCSH guidelines. No further requirement for blood monitoring either according to them. I would not risk stopping myself- I never want to end up in that state again.

  • Personally I'd say that even for 12 weeks your B12 serum levels are low given that you have had shots, and indicative that you aren't retaining enough B12 to keep you going on 3 monthly shots.

    Your folate continues to be on the low side - try looking for other folate rich foods.  Ideally it needs to be mid range ideally.

    Really hope that you don't get the response you are expecting.

  • Hi,

    There may be some useful info on your old thread.

    healthunlocked.com/pasoc/po...

  • As expected GP phoned  " B12  343 is normal - no more injections - you are normal - another blood test in 3/6 months."  

    Is   B12 - 343  (180-1000) 'normal' after 5 loading injections and 12 weeks gap. and perhaps refer me to a neurologist. So will have to tell him I have already seen a private one.

    I have phoned the PAS. for advice.

  • Isn't this worrying? The rules are flawed, as we are well aware, and yet still there are GPs who want to write their own (even more inadequate) rules. How does your GP know what your 'normal' was before you became deficient? SOMEONE has to have a normal of 1000 after all, for it to be top of the normal range... and if that was YOU, then you are functioning on a third of your normal level ! There is no way of knowing now, is there?

    Very best of luck- let us know how you get on.

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