In short, I’ve had low b12 for over two year, yesterday I had a meeting with my gp re them refusing to giving me b12 injections, I pointed out that by refusing they are not adhering to Nice guidelines.
They are standing firm and saying that if my intrinsic factor test comes back negative ( which it will as I paid to have it tested privately & it was negative) they will not give me injections as they only give them to PA patients.
I think I’m going to have to change my doctors !
Are there any members on this site that get injections without a PA diagnosis ?
PinkF - sorry thatd your GPs are being so difficult.
Yes, there are going to people - myself included - who do not have a formal diagnosis of PA but are being treated with injections. In my case it was because I have never, to my knowledge, been tests for PA.
The IFA test is so unreliable that the BCSH guidelines even refer to IFAB negative PA. The test just isn't reliable enough to be used to decide who should and who shouldn't be treated.
Have you written to the practice manager expressing your concerns and asking for treatment in accordance with NICE and BCSH guidelines? Sometimes putting things in writing gets better results than trying to talk about things - also gives you a chance to spell out the guidance in black and white.
The BCSH guidelines can be found here, but your GP (assuming you are UK based) can access through the BNF
Relevant sections are a) the discussion of the tests for cause of B12 deficiency
Anti‐intrinsic factor antibody (anti‐IFAB)
The finding of a low total serum cobalamin level may be further evaluated by testing for anti‐IFAB. If positive, the test has a high positive predictive value (95%) for the presence of pernicious anaemia (Toh et al, 1997), with a concurrent low false positive rate (1–2%) i.e. a high specificity. It identifies those patients with a need for lifelong cobalamin replacement therapy. IFAB is positive in 40–60% of cases (Ungar et al, 1967), i.e., low sensitivity, and the finding of a negative IFAB assay does not therefore rule out pernicious anaemia (hereafter referred to as AbNegPA). In addition, the positivity rate increases with age (Davidson et al, 1989) and in certain racial groups [Latino‐Americans and African‐Americans; (Carmel, 1992)].
b) also the figures summarising diagnosis and treatment in figures 1 and 2
c) If you have neurological symptoms then you should also draw their attention to the main recommendations in relation to the importance of initiating treatment promptly to prevent permanent nerve damage.
You could also think about joining and contacting the PAS directly
Hi, yes I have written to my practice manager, i included copies of the guidelines, I had a meeting with the practice manager and my gp yesterday.
I pointed out the the iF test is not always accurate I also point out that patience like myself with an autoimmune thyroid problem can have absorption problems.
Hello PinkF my b12 level is the same as yours. I have some neurological symptoms and had my last loading injection yesterday. I can’t even get an appointment to see a Dr and the nurses who do the injections are all saying I can now only have one injection every three months which I’m sure is not enough with the symptoms I’ve had and some I still have.
I have a 15 min appt with a private Dr next week ( would have been today but my surgery can’t supply my copies of my notes that quickly, despite paying the fee) just to get some idea of what I need and costs etc. Not sure I can afford it.
It’s just terrible that these Drs never take this seriously.
You poor soul! It's hard to believe they can be so bad but you are by no means the first!
I am "only" B12 deficient and got them for a while - and I even managed to get them to supply me with the kit to self inject daily - before they saw how much better I was on them and suggested I was "cured"!
Try a different Dr or a one off private shot and if OK then SI - it's much easier/better than the idea of it and it will give you your life back before you get too much damage from the deficiency.
Because there is a minute chance of a bad reaction to the jab some people do their first one at a hospital so they could access care if needed. I belong to this and a Facebook support group and in all the thousands of people I have never heard of a significant reaction but best to be aware of the potential.
See Wedgewood's excellent replies for more information on self injecting.
Hydroxocobalamin is the type routinely used by the NHS in the UK and it does not do 'much bad', and nor does cyanocobalamin. It's my understanding that the three types can be slightly differently helpful for different people, but all three are fine to use
I've had two negative IF antibody tests, but my surgery treats me according to NHS guidelines. It's the same treatment whether you have a diagnosis of B12 def or PA.
I had a meeting with my gp and practice manager, gave them a copy of the NICE guidelines but the still refuse, I need to find a new GP surgery in my area that might help
Yes, this is what I was thinking, however I have just got a message from a lady from a b12 page that I’m on, she has said she’s b12d but does not have PA, (she also doesn’t have any other health issues that would stop her from absorbing b12) she is in the same surgery as me and has the same gp
Yes - when I was diagnosed with a b12 deficiency the GP said to me I was deficient regardless of the cause and would require injections for life thus she did not see the point in testing as to the reasons why.
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Where has all my B12 gone?
Picking up where I left off
How do you know if you have PA
I must be going mad!
