I was diagnosed in February as being B12 deficient but did not learn until July (with a change of surgeries and a different GP) that I have pernicious anaemia. In February I was given the loading dose and placed on an automatic 12 week top up. Realizing I did not do very well on the 12 weeks and having asked at the original surgery I was put on a 10 week top up period. It has blatantly not been enough. Even now my toes constantly tingle and the forefoot pad feels uncomfortable let alone the fatigue.
I have been reading quite a bit on here when time allows and am trying to learn what I can and what will stay in the old memory but I do find it all quite confusing.
I am currently on holiday and following the advice of a friend who lives here I went to the local chemist who looked at the UK prescription I had with me promptly sold me B12 and a syringe and offered to inject me at no extra cost. I was thrilled to find it all so easy. The young woman behind the counter told me her mother has weekly injections and to come back the following week for another injection. Duly done and the benefit is so noticeable. My husband says how much difference he has noticed in my general mood and energy levels.
All of this has prompted me to be brave and consider self injecting. I can buy all I need without any hassle from the chemist (all in all I think it works out around £2.50 per ampule) to bring back to the UK. I will continue to have my 10 weekly injections at the surgery as I do not want to be overlooked by the NHS.
Is there a good YouTube clip that you would recommend where I can learn how to self inject. I have looked at a few and there seems to be different ways. I do not think I can manage to self inject in the haunch area as this old body is a bit stiff these days but the thigh method looks easier.
I am trying to be proactive and self care but sometimes I feel rather overwhelmed so would appreciate your valuable experience and input.
Thank you in advance for your help.
best wishes
Written by
butterflyEi
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I'm curious to know what country you are in . But that's great news for you. I have to self inject . But I told my doctor , who does not approve . Trouble is if you don't tell your doctor , he or she thinks that the bog standard 3 monthly injection is enough . If you do, they are annoyed. Anyhow I've been self injecting for 2 years . The thigh is a good place for that . I inject into the muscle (outside middle third of thigh ) look it up on the net.Its quite easy to get ampoules from online Pharmacies in Germany Cost around £56 for 100 . What sort of B12 did you get? Was it Hydroxocobalamin , which is what we get here . Needles you can get from Amazon and other medical supply firms online . You need swabs and a yellow spent needle box , which most chemists will dispose of for you . AND A LARGE GIN AND TONIC , when you self inject for the first time !
If you need any help come back here . Best wishes .
I am a UK resident but am currently on holiday outside the European Union but still in the Mediterranean area.
After all the fuss about the B12 in England this year I find the casual approach to the injections over here very refreshing. I do not feel like I am asking for the earth. I am going to get another injection before the end of my holiday. I have an appointment booked in the UK in the surgery but am taking some ampules home with me which will give me time to assess whether to buy via Amazon or perhaps just pop back to my holiday destination once a month how nice would that be.
Thank you for your answer and that large gin and tonic sounds lovely with lemon and ice of course.
Google "BCSH Cobalamin and Folate Guidelines" and have a look at page 8 which has details of UK b12 tretament. Page 29 is a diagnosis flowchart for B12 deficiency which outlines the process doctors should follow with someone they think has B12 deficiency. Info on treatment for B12 deficiency/PA is also in BNF (british national formulary) chapter 9 Section 1.2. Your GP will most likely have a copy of BNF on their bookshelf which they might be willing to show you.
The UK treatment for PA where there are neurological symptoms is loading injections every 2 days for as long as symptoms continue to get better, this could mean loading injections for a period of weeks even months. Once symptoms have stopped improving people with PA and neuro symptoms are supposed to get injections every 2 months.
Tingling in toes is usually considered to be a neuro symptom. Do you have other neuro symptoms? See symptoms lists below.
If you have time reading the pinned posts on this forum might be helpful...lots of info about B12 there.
B12 books
"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper. Martyn is the chair of the PAS. The book is up to date with UK guidelines.
"Could it Be B12" by Sally Pacholok and JJ. Stuart. Very comprehensive book about B12 deficiency.
I am not a medic just a person who has struggled to get a diagnosis.
Thank you so much for all the information. I am a UK resident but am currently on holiday outside the European Union but still in the Mediterranean area.
Yes I do have other symptoms some of which I had put down to age but other symptoms are similar to another autoimmune disease that I have which recently seems to have gone up a notch so sometimes it makes it difficult to know which disease is stressing the body the most. It is for this reason that I am trying to learn enough to self inject. I have recently changed surgeries but I do not think that treatment will be any different.
I have looked at the pinned posts but sometimes find it hard to get all this information to stay in my head so I will be re-reading. Also when I am back in the UK I shall investigate the books more closely.
I really appreciate the fullness of your answer and thank you for your help. This is a great forum.
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how nice would that be.
Have I got it all wrong!
Re testing all patients on b12 injections
QUICK ONE FOR ALL US NEW MEMBERS ! ! !
New to site, not new to PA
New diagnosis B12 deficiency
