pernicious anaemia without actual anaemia

hi there,

as a member of lots of other groups on health unlocked i thought i would ask here for advice for a family member, we have been diagnosed with auto immune illnesses my aunty has since been diagnosed with pernicious anaemia b12 defficiency without the anaemia, we can find no information regarding this on the internet and just wondering if any of you lovely people have any dealings with this kind of thing - we are at the end of our tethers not knowing what treatment is available what the outcome is going to be a few pointers if possible would be brilliant if possible

thanks and regards

Bevjane74

9 Replies

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  • Hi bevjane74 ,

    Welcome here.

    It is not un common not to be anaemic with B12 def/ PA. The treatment is the same.

    See:

    bcshguidelines.com/document...

     "Patients found to have a low serum cobalamin level in the absence of anaemia, and who do not have food malabsorption or other causes of deficiency, should be tested for IFAB to clarify whether they have an early/latent presentation of pernicious anaemia (Grade 2A)."

    "Recommendations

     Patients suspected of having pernicious anaemia should be tested for intrinsic factor antibody. Patients found to be positive should have lifelong therapy with cobalamin (Grade 1A).

     Patients negative for intrinsic factor antibody, with no other causes of deficiency, may still have pernicious anaemia and should be treated as anti-intrinsic factor antibody negative pernicious anaemia. Lifelong therapy should be continued in the presence of an objective clinical response. (Grade 2A)"

    I hope this helps,

    Kind regards,

    Marre.

  • Thank you Marre

    that has helped lots - should keep us busy reading all that :-) I'm sorry for seeming a pest but this is all pretty new to us but is there a list of symptoms and connected illnesses that I could possibly read through too

    Thanks once again

    Bevjane74

  • Hi Bevjane74,

    You will find a lot more info, re list of symptoms and connected illnesses in these links below see:

    patient.co.uk/doctor/pernic...

    nlm.nih.gov/medlineplus/enc...

    cks.nice.org.uk/anaemia-b12...

    emedicine.medscape.com/arti...

    Good luck reading, it may take a bit of time to get to understand all, some are easier than others.

    KInd regards,

    marre.

  • Thank you so much I really appreciate it

  • You're very welcome!

  • You may also find these sights useful.

    b12d.org/

    b12deficiency.info/

    pernicious-anaemia-society....

    and this list of symptoms

    pernicious-anaemia-society....

    Some useful books are:

    Could it be B12? - Sally Pachalok ...

    Pernicious Anaemia - the forgotten Disease - Martyn Hooper

    and others have their favourites

    Pernicious Anaemia in its true sense is the name for B12 deficiency caused by an auto-immune response - but it is often used as a catch all for all forms of B12 deficiency that are not related to lack of B12 in the diet.

    Anaemia is one of the consequences of B12 deficiency but lots of people start to experience other problems well before any anaemia starts to manifest - for me it was years of depression and anxiety heading into balance and problems with my gait ... and it took me 18 months after being told as an aside in hospital that I was B12 deficient to really figure out what was going on ... and work out what treatment really worked for me as doses I was getting via the NHS really weren't anything like what I needed.

    Standard treatment in UK is loading shots (6 over 2 weeks) followed by maintenance shots every 3 months for life - different treatment if you have neurological implications.

    Non-dietary deficiency occurs because you develop a problem absorbing (and recycling) B12 which is why treatment is for life. There are possibilities other than injections - I find supplementing with nasal spray works well with me - but everything varies so much from person to person.

    B12 works in conjunction with B9 (folate) so worth keeping in touch with what folate levels are. Other vitamin deficiencies are also quite common - which probably isn't surprising where there is an absorption problem.

    People do vary quite a bit in their responses both to the deficiency and also to treatments - one good thing is that you can't overdose on B12 and there aren't any known downsides to having high B12 levels which gives you room to experiment on what works for you outside the NHS if you need to and have the resources.

    Good idea to let other members of the family know as auto-immune does tend to run in families - as can other problems.

    It's a really shame that there isn't more information readily available to patients when they are told they are B12 deficient/have PA and even more of a shame that many medics really don't seem to know much about it at all - an awful lot of myths about it out there that can make life really complicated

  • My aunty has just been told she has this she is my dad's sister - I was diagnosed last year with a string of auto immune illnesses so I have told other members of the family to consider asking for testing - I was just diagnosed as having a vitamin d defficiancy - my aunty has been told by her gp that if she had the anaemia she would be easier to treat and that her case is one in a billion it's extremely rare luckily I never listen to easily to the medical precession and decided to start researching and looked here I'm so glad I have cos this has been so much of an eye opener

    thank you for the information

  • Not really that rare

    cdc.gov/ncbddd/b12/index.html (US equivalent of NICE)

    Think there is also a BMJ article that talks about 10% of over 50s and 25%+ of over 70s - not sure where people are getting their estimates from but to me the CDC headline with 1 in 31 of over 50s means its a long way from being rare ... and definitely don't listen to GP if they are saying that it is rare because it's deficiency without the anaemia - can't remember what NICE and BCSH say in terms of actual percentages but the numbers of people who experience non-anaemia problems that can be quite severe before any sign of anaemia starts are quite significant.

  • I'm just so glad to have found this page of health unlocked cos its helping ease my auntys mind a little the way the doctors were saying it is as if there was nothing could be done to help her - she really thought she was dying from this and its really frightened her

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