Pernicious Anaemia Society
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Feeling so dejected

Just got back from the doctors where my son was supposed to be having his third B12 injection after recent diagnosis only to be told that the nurse couldn't give it to him as the doctor had only written up for 12 weekly injections. The nurse said the guidelines are for B12 injections to be given every other day for 2 weeks then every 12 weeks. She tried to get authorisation from a nurse practitioner who would only authorise her to arrange for another B12 blood test. I am so upset for him. He has a needle/blood phobia and looked absolutely distraught. I just said NO he isn't going for a blood test. All this after he has waited a week for his injection. We are now booked in to see another doctor in the morning. Any Advice?

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Its always disressing when you cant get the right treatment for a child as we are programmed to protect. 

All i can advise is you see the dr in the morning, ask why they technically refused the injection bearing in mind that the appt for it has already been made by someone previous to your actually going.

Was he being given his third injection during his loading period or a routine quarterly one?

Think other posters will also say that if he is mid loading then a blood test is more or less a waste of time and resoures.

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Thankyou so much for your reply. Yes he has only had two injections so far. They were meant to be every other day but impossible to get booked in at the doctors. Hopefully he will get an injection in the morning. It is all so annoying. People get methadone if they are trying to come off heroine so can't understand why you have to plead to get what could be lifesaving medicine. He has neurological symptoms.

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Hi. If you look at the guidelines it does say injections are every 12 weeks unless the patient has neurological symptoms. Then loading doses are every day until symptoms stop improving and then every two months. You can use sublingual b12 lozenges in between your injections. Look at the guidelines on bcshguidelines.com take a copy with you.

Good luck! :-)

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Thankyou so much that is really helpful. The doctors seem so annoyed that you just want treatment for your symptoms. Feel like I am in a dream and talking a foreign language even though I said it was the bcsh guidelines. Why are they so against giving B12 does anyone know?

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It's about lack of knowledge. They believe too that b12 deficiency is rare when it's the opposite. Take a look at b12.org.      or b12deficiency.info or finally b12awareness.org

Knowledge is power! :-)

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By the way injections are for life and it says no further tests are needed. 

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What i find strange is the nurse quoting the proceedure to you but in actual fact not abiding by it, it must be on your lads notes where in the process he is. Good luck with the gp in the morning.

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The gp hadn't written his notes up properly and therefore the nurse couldn't give the injection. The nurse was lovely and knew more about B12 than the doctor but she can only administer the injection if it was on his notes. 

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Hi,

Are you in the UK?

The PAS are helpful and sympathetic and should be able to point you to useful info. they have members from around the world.

In some cases they can intervene on behalf of members. Lifetime membership costs £20.

pernicious-anaemia-society....

 01656 769 717

Office open from 8am till 2pm every day except Sundays

Useful B12 websites

b12deficiency.info/

b12d.org

martynhooper.com/

Useful b12 books

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

Could it be B12?: An Epidemic of Misdiagnoses by Sally Pacholok and JJ. Stuart

UK B12 Documents/articles

ukneqas-haematinics.org.uk/...

bmj.com/content/349/bmj.g5226

See Summary Points

Google "BCSH Cobalamin and Folate Guidelines"

I found page 29 in this document useful.

Following link is about writing to GP if unhappy with treatment, point 1 is about under treatment of neurological symptoms.

b12deficiency.info/b12-writ...

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