Has anyone sought an explanation from their gp as to why if you have caused b12 deficiency by the deliberate use of nitrous oxide that the NHS sanctions the use of b12 injections. Self administered. Daily!! Even providing an instruction video to show how easy and convenient it is to do.
I can only say I am staggered by the hypocrisy of this and think we should all shout it from the rooftops. I am not saying nitrous oxide users do not deserve to have treatment for the damage they’ve caused to themselves but it makes it obvious that the NHS does really understand the problem of b12 deficiency and is gaslighting the general public.
Next time I see my gp I will certainly ask what their response is.
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MorningMist
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Can you please give the link that contains these directions from the NHS ? I want to print it out and add to my collection of B12 information. Thank you . I’ve googled and can’t find it !
It is indeed more than strange when you think how many of us have suffered from lack of treatment , and total disregard even with a positive IFAB test result .
Just edited my blog to include a PDF of the guidance so that it can readily be downloaded in that form - even if the guidance is taken down from the website.
I have read these instructions for self injecting. Can you explain why they bother to prime the drawing needle before removing it and replacing with the injection needle?Also, why they only insert the needle half way in? I use 30mm needles and go the full depth. Is this wrong?
I think it’s so that you don’t damage the needle tip on the glass. Most people tilt the ampoule at the same time as they draw up the fluid, but I have never mastered that so I use a filter needle and it touches the bottom.
I'm referring to how they push on the syringe to expel air from the needle after they have retrieved it from the ampoule. It seems pointless when they are next going to replace the needle.
How can we and our representative bodies use this information as leverage. I'm due to see my MP some time soon about B12D and I will certainly use it when I see her. Likewise when I next see my GP and my haematologist. PAS, how can this be used as a very salient issue?
Maybe print out the whole thing and show her? I suppose sending it via email will likely prove pointless and just generate an automated response.
The point to make is that it is safe to do when it suits the nhs…so they must know it’s not a problem. They need to explain why responsible people are not officially allowed to do the same.
I guess if you have a self inflicted deficiency, it can be "cured" with this treatment in short time. Whereas we are a long term cost, to be minimised.
Not if you self inject at home as they suggest. That is the crux of the argument, that people use up nhs funds with clinic appointments, but few doctors will approve self injecting at home. Not receiving adequate treatment is likely to cost untold amounts in the long run.
I have read the posts about your struggles to maintain an adequate level of treatment and I really admire your tenacity. I really can’t cope with all the bureaucracy and lack of knowledge. The thought of any more fruitless discussions exhausts me.
Yes I do choose to highlight the devastating symptoms and fight my corner .We need as much awareness as possible
I do only pick the important fights.
It is exhausting at times.
Other times boring going over it all again.
A patience i didn't know I could muster .
Having this chronic condition tests patience too though .
I personally would've found it more difficult /exhausting / stressful not arguing my/ our case .
Writing in one way.
I've managed confrontations when nurses have 'brought the doctor in' as unwilling to inject as not 3 months but clearly on the notes prescribed more often ???
Need
....far greater than accepting the nurses opinion.
Hate injustice .
Hate not being listened to
Hate needless suffering.
Frustrating yes.
I just didn't want the audit to show everyone is fine on 3 monthly B12 injections .
Also to' be believed ,'a basic human need.
The times I've been told by a nurse .
Noone has or needs more than 3 monthly b12 injections .
Untill they need them themselves!!
Women especially are ignored 🙁 and told depression stress, hormones. Ect
On this reply to thd post i was just highlighting forum members do get/ can get a b12 prescription to inject at home.
Hopefully paving thd way for others too.
It is certainly the way to go as you state .
Win win.
Adequate treatment
In control
And cost effective.
No nurse time. ( they have been the most obstructive my experience )
I dont want the total reliance and stress of sourcing abroad as the only supply either.
Or the b12 need not being on my medical records.
OTC as T Witty campaigns woukd also help all.
It must change .
Lots are fighting for the cause .
Signing petitions.
This forum brings us together for such discussions.
That's why I'm on here so often .
Looking for more peoples experiences ,gaining more snippets of information.
Sharing what I've learnt /experienced.
When bedbound this forum was my only source of information .
Never used Facebook or anything online .
Couldn't visually use s computer % laptop . Still can't .
So this mobile is a positive for I.T!
Only did any I.T when no option not to like when work went paperless.
( still had a secret paper diary as if and when the system crashed as everything stopped otherwise and people let down.
I’ve copied the link below where I posted a month ago on this topic. Many folk were shocked at the revelation. I rang the number listed there, twice. 1st, I’m pretty sure it was a doc as he spoke authoritatively and said the instruction came from the toxicology department, 2nd was a nurse who was totally disinterested. More in the thread.
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B12 Deficiency or PA. How do you know?
Thank you Health Unlocked & Pernicious Anaemia Society & B12 Deficiency Support group
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