Pernicious Anaemia Society
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Newbie

Just wanted to say hello. I am one of the fortunate ones to have seen a GP with a specific interest in haematology so got a fairly quick diagnosis following a period of worsening and increase of my symptoms.

Feeling frustrated at the typical 3 month injection treatment offered as my symptoms return at about 6 weeks.

However, I feel fortunate to be able to function well and work at a job I love.

Hope to engage with this forum to learn and support.

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Hi RebeccaG33 have you had your Folate tested as this and the B12 you are having injected helps your iron to function properly and make red blood cells.

Do you know what caused your B12 deficiency in the first place?

I am not a medically trained person but have had P.A. (a form of B12 deficiency) for 46 years.

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Yes folate was tested too and was fine but I’ll continue to monitor it. I think possibly genetic reasons for me having PA but it has also resulted in identifying and treating Helicobacter Pylori too. Glad to get that one sorted and enjoy eating again. You will have a lot of experience having lived with PA for so many years. I was diagnosed 14 months ago

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I hadn't realised that you had been diagnosed with P.A. - if so according to the N.I.C.E guidelines below and you are still having neurological symptoms B12 injections should be every eight weeks - not twelve.

Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"

google.co.uk/url?sa=t&rct=j...

It's good that the h pylori infection was found and is being treated.

Sadly for my first 40 odd years of P.A. I lived in total ignorance of what it was all about as I didn't know anyone else who had it and none of the succession of nurses who gave the injections nor doctors whom I saw for other reasons never asked me how I was getting on. It was when I noticed a return of some neuropathy in the run up to my next injection that I asked my then "one size fits all" doctor to increase the frequency and he adamantly refused. I had been on cyanocobamalin B12 injections every four week for four decades.

I then joined the Pernicious Anaemia Society in 2011 and asked on their then forum "Am I the only person in the world to feel the need of more frequent injections....?" and I was amazed at the response. No - I was not alone.

It was a fight. It was a battle, but armed with what I learned from fellow sufferers I now have my injections every three weeks.

I wish you well

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Thank you Clivealive. That link is a good one. Awful that there was so little information about this illness in the past. My great grandmother must have felt similar as she had PA too. Technology has made information so much more accessible.

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My GP will only go with an injection every 3 months.All my symptoms return after 6wks so I inject myself which sorts me out until my 3mnthly at the surgery.

That works for me and I keep well.

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I do the same.

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My nurse is brilliant so I go to her if I want it early. She doesn’t have an issue with bringing it forward. I will continue to push the GP for it too.

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Hi,

Welcome to the forum, I'm sure you'll find lots of info and support here.

In UK, you can find details of UK b12 treatment in

1) BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

2) BNF British National Formulary Chapter 9 Section 1.2

bnf.nice.org.uk/drug/hydrox...

UK GPs will probably have a copy of BNF on their desk.

Do you have any neurological symptoms?

B12 Deficiency Symptoms

pernicious-anaemia-society.... See Checklist PDF on right of page

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

In UK, people with B12 deficiency with neuro symptoms eg tingling, pins and needles, tinnitus, memory problems, balance issues, tremors plus other neuro symptoms are supposed to get

a B12 loading jab every other day for as long as symptoms continue to get better (could mean loading jabs for weeks even months) then it's a jab every 2 months.

"frustrated at the typical 3 month injection treatment "

in UK, 6 loading jabs over 2 weeks then jabs every 3 months is the standard treatment for B12 deficiency without neurological symptoms.

PAS (Pernicious Anaemia Society)

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769 717 answerphone

Might be worth joining and talking to PAS. In some cases they can intervene on behalf of members and at very least can pass on useful info.

Link about writing letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 is about under treatment of B12 deficiency with neuro symptoms.

Untreated or under treated B12 deficiency can lead to further deterioration including spinal problems.

PAS news item on Neuro Consequences of PA

pernicious-anaemia-society....

UK B12 blogs

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

B12 books I found useful

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK B12 guidelines.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

"Could it Be B12; An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive book about B12 deficiency with lots of case studies.

BMJ B12 article

bmj.com/content/349/bmj.g5226

Lots more B12 info in pinned posts on this forum.

I am not medically trained, just someone who has spent a long time trying to find out what is wrong with me.

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Hiya Sleepybunny,

Thanks for all the links. I’m already a PAS member so have a lot of info from there too.

Appreciate your support.

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Buy some B12 injections online from versandapo site.

Not expense at all....I got 100 ampules for £50 something. One years supply.

My symptoms return in 3rd week so I self inject every 2 weeks...end of problems. Don’t rely on doctors....they don’t knw much about B12 problems.

You probably need 1 injection every 4 weeks.

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If u do decide to SI (self inject, don’t forget to take Folic Acid...400ug one tablet daily.(cost £1 something for 90 tablets.

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