B12 journey : Hi looking for advice , I... - Pernicious Anaemi...

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B12 journey

TarenaElizabethD
TarenaElizabethD

Hi looking for advice , I asked the doctor due to a recent alopecia outbreak if I could get the b12 injections , but for the past year id been going back and forth with all the symptoms of b12 deficiency ( not realising at the time ) , I was given these b12 jabs when I had my last outbreak of alopecia and low immune system 10 years ago , whilst traveling in nz , I was given the blood test and advised I did need b12 , I recieved the loading doses and after a few weeks I felt like the old me again ,the pain , the breathlessness , the pins and needles , the low mood all miraculously cleared , I was advised to get them every 3 months .

3 wks later I'm feeling the symptoms re appear , I then was told I needed iron tablets as my iron level was low ( I wasn't anemic ) but verging on ?

I am feeling even worse now I am a wk into the tablets , I went back , I was then tested for coeliac disease and referred to see a gastric specialist . I was also asked if I'd like anything as it sounds like I have the symptoms of stress and anxiety ? I said no as I didn't feel that these symptoms were related to that ? 🙈, the tight chest and breathlessness are back and sore muscles and pins and needles , & sheer tiredness .

But I really feel I need more b12 more regularly and that will make me feel better ?

Why do doctors not listen to to your symptoms and why are they not keen on giving the b12 injection more regularly ?

I feel like it's a constant battle . Any advice welcome please and thanks X

3 Replies
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Gambit62
Gambit62Administrator

are you based in the UK now?

symptoms of B12 deficiency overlap with a number of other conditions and many GPs aren't aware of the full range of B12 deficiency symptoms. They also don't have a good understanding of how B12 deficiency works. They have become increasingly reliant upon looking at test results without actually understanding the limitations of tests and this isn't unique to PA/B12 deficiency. Whilst B12 itself isn't expensive the tendency to think it has to be administered by IM injection means that they also think it needs to be done by a nurse/medic with the result that their time actually makes the administration of the injection quite expensive. The vagaries of the licensing arrangements in the UK mean that B12 is only licensed for administration 2 monthly - with the result that many are under the mistaken impression that more frequently than 2 months must be dangerous. Many GPs haven't had the time to read and memorise guidelines with the result that they aren't even aware there are 2 regimes for treatment of B12. Many are totally confused and think that all of the symptoms come from anaemia.....

Hi yes , Scotland , thanks for reply , I have managed to persuade them to give me one Tommo , I've now been researching to try and understand my symptoms more , could a folic acid defiancy be the cause of some these problems ? It's just so frustrating , the doctors are happy to push anxiety related drugs or pain killers but not give out a vit b12 ?

I shall see how I feel once I have had my b12 load , any advice welcome .

Thanks

Gambit62
Gambit62Administrator in reply to TarenaElizabethD

Unfortunately GPs tend not to understand B12 deficiency. Sounds as if you need maintenance much more frequently than 3 months - which may be quite difficult to achieve. The vagaries of the licensing arrangements in the UK mean that the licence for hydroxocobalamin is 2 monthly maintenance shots - and many GPs mistakenly think this means that more frequent must be dangerous, It can be very difficult to get injections more frequently than this.

Suggest you point your GP at the area of the PAS website intended to help medical professionals improve the diagnosis and treatment of PA - the most common B12 absorption problem

pernicious-anaemia-society....

you may want to consider supplementing - sublinguals/nasal sprays/patches - but they don't work for everyone.

you may also want to consider joining the PAS

pernicious-anaemia-society....

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