Hello, I have just been told I likely have pernicious anaemia and need to have B12 injections. I’ve booked in my first B12 jabs in a few weeks time. I was told waiting a couple of weeks should be fine and it doesn’t need to be any sooner as I dont have neurological symptoms yet. However i thinks I might have a few physical symptoms but I might be just getting paranoid, I certainly have no major symptoms.
Do you happen to know how important it is to have the jabs immediately, or if it is ok to wait a few weeks like the GP has said to? The GP seemed like they knew very little about PA on the phone so not feeling hugely confident about their advice. There seems to be quite little info online as well. Would be so amazing if you could help or advise in any way! Thank you.
In summary - is there any positive difference in having the jabs earlier rather than later (E.g even if it’s only a week earlier)?
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sandiuy
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delays of 6 months have resulted in neurological symptoms becoming permanent. A few weeks delay probably isn't going to hurt but it may mean that you continue to feel grotty for a little while longer. However, also true that many people do find themselves feeling worse before they start feeling better and anaemia takes a few months to clear if you have anaemia.Personally would encourage you to start sooner rather than later.
If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment (over 40 pages of info to wade through).
Have you got a copy of the local B12 deficiency guidelines for your area?
Each CCG (Clinical Commissioning Board/Health Board/NHS hospital trust in UK is likely to have its own local guidelines on treatment/diagnosis of B12 deficiency. Might be worth tracking down the local guidelines for your area of UK and comparing the info in them with BNF, BSH and NICE CKS links.
Some local guidelines have been posted on forum so try a search of forum posts using terms "local guidelines" or try an internet search using "name of CCG/Health Board B12 deficiency guidelines" or submit a FOI (Freedom of Information) request to CCG/Health board asking for access to or a copy of local B12 deficiency guidelines.
Other threads
Links below are to forum threads where I left detailed replies with lots of B12 info eg causes of B12 deficiency, B12 books, more B12 websites, more B12 articles and a few hints on dealing with unhelpful GPs.
Unfortunately, this seems often the case with GPs. For a better understanding of your condition and range of possible symptoms etc. I would recommend sites run by, and on behalf of, those with B12 deficiency.
Tracey Witty has been a long-term campaigner, has a website, blogs of interest. The Pernicious Anaemia Society has a website with updates on research etc from Martyn Hooper, the founder, who has also written some very useful books on the subject.
You may find, once injections begin, that health problems that you had become used to/ ignored start to improve too- and you realise that you had a few more symptoms than those initially presented to your GP.
A GP will usually recognise fatigue, dizziness, pallor, maybe joint aches, muscle loss as relevant if you are lucky - but these and many more symptoms could easily be attributed to something else, which is why many get sent for tests for something deemed "more serious" and why the effects of B12 deficiency can remain so underestimated. NICE, who write medical guidelines, have acknowledged that there are many symptoms - and hopefully will clarify this for GPs.
For now though, try not to worry about a couple of weeks' delay, although there seems little reason behind it. Anxiety could be one of those health problems that go, once injections start.
This may take a while and, as Gambit has already said, you might find that you feel worse before better. There is always someone here to help you.
Thanks very much for your replies, all really helpful information. I have found all of the information online really quite scary. I feel absolutely fine currently and have a busy and demanding job which I have no problem at all in doing. So I’m very worried about getting some of the debilitating symptoms in future. If you have PA do you definitely feel horrible some of the time? Or can you live well with it?
I have my test next week for PA, I think the test where they look to see if Ihave the Intrinsic Factor. Do I need to make sure I start the B12 injections after this test? If I started it before could it muck up the result of the test?
Thanks again for your replies, it’s really good to find somewhere where you can get reliable information!
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