I was diagnosed with Pernicious Anaemia and lack of intrinsic factor over a year ago and was given the loading shots and then put on a 12 weekly B12 injection.
A few months ago I went back to the GP and begged to be given them more often, and they agreed to do it every 10 weeks but no more.
My quality of life is at an all time low - I'm constantly fatigued, my productivity at work has tanked and every night I get home and collapse into bed. I'm thinking about self-injecting but slightly anxious about it. Should I ask my GP first? I have a friend who is a nurse who could show me how to do it...
Trev
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trevthedog
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Hi trevthedog , my OH was in exactly the same place as you 18 months ago , exhausted , unwell , sleeping a lot , and many other symptoms , I inject him with b12 every Sunday and now it’s just routine , takes a few seconds . He is much less tired now , and a lot better . He also has low ferritin so he’s on ferrous fumerate so it may be worth asking your gP to check your ferritin level also thyroid . Don’t forget if you decide to SI you will need to take folic acid every day to help b12 to work . Great you know a nurse to help . Good luck .
Well done trevthedog in getting your doctor to agree to ten weeks between injections but with P.A. and neurological involvement the N.I.C.E. guidelines state that B12 injections should be given every eight weeks.
Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"
If you can get to see a doctor please also ask him/her to check your Folate level as this and B12 help your iron to make red blood cells and to function properly.
I am not a medically trained person but I've had Pernicious Anaemia (one of many causes of B12 deficiency) for more than 46 years.
"was given the loading shots and then put on a 12 weekly B12 injection. "
Recommended UK b12 treatment for B12 deficiency without neuro symptoms is ....
6 B12 loading jabs over 2 weeks followed by a b12 jab every 2 or 3 months
Recommended UK b12 treatment for B12 deficiency WITH neuro symptoms is ....
A B12 loading jab every other day for as long as symptoms continue to get better (could mean weeks even months of loading jabs) then a jab every 2 months
If you have neuro symptoms, my understanding is that you should be on second pattern of treatment if in UK. See BNF, NICE CKS and BSH links for more info on UK B12 treatment. BNF treatment guidance has changed recently, see link below. I suspect your GP is unaware of the change in BNF.
"What You Need to Know About Pernicious Anaemia and 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 with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".
More B12 info in my longer posts (just put Sleepybunny in search box) and in pinned posts on this forum.
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