Pernicious Anaemia Society

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Hi everyone,I'm 37 and I just been diagnosed with pernicious anemia and being 27 weeks pregnant, I'm looking for advice on a couple of things if anyone could help,share their knowledge or views I'd be extremely grateful. First thing is should I get my children tested? And secondly I've had bad palpatations,anxiety depression for past 8/9 years, could this be anything to do with the PA? I'm bit upset to be honest with recent diagnosis of pa, I've just started injections which I hate as I'm terrified of needles! I'd love and appreciate to hear from anyone xx

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Sorry to hear about the diagnosis.

I suffered decades of depression before I was diagnosed and was actually quite surprised when I realised that that had come to an end - though that was after I started treating myself.

Although the standard form of treatment is injections there are other possible routes for getting B12 in to your system - I find a nasal spray is very affective for me but others find sublingual sprays and tabs and even skin patches help them. However, if your are UK based then it is highly unlikely that your GP is aware of anything other than injections but you might want to look into it - CDC (US equivalent of NICE in the UK) mentions nasal spray as an alternative for those who have problems with injections.

Some of us find that we need more than the normal maintenance shots to really keep us going - hence the use of other forms - though I do also inject subcutaneously as another way of supplementing - was terrified of it to start off with as I had a bad experience with anti-coagulant shots but now it really doesn't worry me.

The palpitations, anxiety and depression could very well be part of the B12D that resulted from the PA but could also be other things - particularly as autoimmune conditions tend to like to travel in groups :(

B12 supplementation isn't dangerous for child - infact Sally Pacholok recommends it in Could it be B12? - which is a good source of information on B12 and has a chapter or two specifically about B12 deficiency in children.

Unfortunately neither the B12 serum test or the antibody tests for PA are particularly precise so although you could try getting your children tested they might not register on scales that GPs or paediatricians would recognise. PA does run in families and B12 deficiency in young children can cause development problems so may be worth a try anyway but I'd really recommend getting hold of and reading relevant sections from Sally's book and this sight might also help - B12 Awareness is the charity she runs and funds from sales of the book etc.

There are different forms of B12 - as well as different ways of delivering - US tends to use cyanocobalamin - UK and most of Europe tend to use Hydroxocobalamin.

Many people find that methyl cobalamin works well where they have neurological symptoms (eg numbness, tingling, burning in legs/feet or hands).

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Hi Lissy,

Sorry to hear that you have been diagnosed with PA. I would check the following documents as some PA/B12D sufferers are not treated correctly. Did you get a series of loading injections?

If you have any neurological symptoms make sure you are receiving the BNF (British National Formulary) recommendations which is an injection every other day until no further improvement then maintenance injections of one every two months.

I would suggest you get paper copies of all your blood tests especially full blood count, B12, ferritin and folate.There will probably be a charge for this.

These books and websites are useful.

Could It be B12 by Sally Pacholok

Pernicous Anaemia; The Forgotten Disease by Martyn Hooper

Living with Pernicious Anaemia by Martyn Hooper

It might be worth you joining the PAS. On the library tab there are various documents including one about pregnancy, some you can only accesss if you are a member.

The chairman of the PAS is very helpful to talk to. Head office: 01656 769 717 This site has a section on B12 and pregnancy.

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