Good morning all, I had hoped that with the new NICE guidelines that my GP would be open to discussing injection frequency but nope instead whilst Nice doesnt state a frequency dose it essentially says refer to the product / bnf so he did and the bnf has no situation where more frequent than every 2 months is present. Sigh.
I think the bit that frustrates me most is that I tell them I am importing and I dont want to I want to get everything through the NHS and hes like I dont advise importing but I'm also not going to adjust your dosage.
My previous doc was fine with the monthly, then we moved cities. Bloody postcode lottery. Just wanted to share frustration with people who would understand.
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Meriels
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I think many of us have long abandoned that ideal, good for you trying but it probably isn't worth too much of your mental energy. Strangely though not relying on the NHS and the whims of a doctor is actually quite liberating.
Still so much dependant on luck and a single medical professional's personal opinion.
It only took one panicking newbie at the surgery to get my monthly NHS injection cancelled - unless I agreed to stop the EOD self injections. I couldn't agree to that as it was already clear to me, and others, that this alone would not be able to stop my deterioration.
He'd never met me before and so would not have known that. But instead of waiting for my usual GP to get back from holiday and discuss my case with her, he just got the injections cancelled.
Well I could have lied - but why would I ? My usual GP on advice had given me 2 injections a week for 6 months, and this had given me a level of improvement that I'd never been able to achieve on the "standard issue". Obviously and demonstrably. But this had come to an end and I wasn't coping well. Besides, no doubt pressure would then have been put on me to accept total B12 serum testing as a means of deciding my future B12 needs.
I could have fought against it - but I'd done all my fighting by then and did not have the heart or energy to do it all over again.
I could have agreed to it and allowed myself to deteriorate just to prove that what I said was going to happen actually did. Way too risky (not to mention completely disheartening).
So I ignored his letter and discussed it with my usual GP on her return. She told me "Just keep on doing what you're doing."
Within the same practice it'll be the same. Dont know re other practices, wish we could talk to another gp re their stance before moving! Dont want to move around and be labeled as seeking
...... except it really isn't and that is the point I'm making. You never know.
Nackapan saw 6 GPs - with only one of them brave enough to prescribe as advised by secondary care ! I saw a trusted GP who worked with secondary care advice to treat what she was observing -with frequent injections, and then a GP in her absence who completely stopped my NHS injections because I was also self injecting. Both belonging to the same practice at the time.
I expect that my GP, like Nackapan's, met with opposition - certainly a few of the nurse were unhappy with administering 2 injections a week.
No advice is given in medical guidance regarding treatment frequency for functional B12 deficiency, but if DNA shows an inherited genetic flaw that prevents normal transport to cells and tissues, the consultants advise the GP to give the patient injections twice a week for life. Despite not being able to find a genetic cause for me, this is the frequency I now use.
I am unable to reduce this without deterioration and now disinclined to try any more. A concerned Oral Medicine consultant checked with colleagues and changed his mind completely about me reducing my frequency - he agreed that my body needs this amount and that tablets would be of no use. He said this in front of students that he was training - a new generation who let's hope will take this on board.
Rare gems are out there, and teachers still willing to learn multiplies our chances of getting help in future !
I feel ya - I'll give myself a bit of space and then try and move to a different gp and see how it goes. I just wish guidelines were clearer about the different types of B12 issues - I have PA and it just doesnt talk about it enough let alone other issues. Really appreciate you all understanding.
One of the nurses at my surgery said "Oh, so you're the one getting one injection a month ! "
You never know when you are getting "unusual" treatment - until they treat you like a spanner in the works !
Yes, sometimes a new start can be useful and productive.
Those students in Oral Medicine will hopefully now be more clued up about B12 deficiency, simply because their professor checked his information with professional colleagues that they would not have been able to access otherwise.
Absolutely - my partner injects me so I'm not even taking up nurse time for them to get annoyed at either just want a vial a month but no no cant break a rule. Am glad a new generation are being taught better
Honestly, I'd be desperately hoping it DID pass in the breast milk and DID affect the baby. Otherwise, how will the baby get any B12? (The way it is expressed makes me think that there really could be a problem but, as with many other medicines, it is being ignored by the hand-wavy and unscientific "unlikely".)
This search links to all UK licensed hydroxocobalamin products.
As someone who already has several issues raised with the MHRA re thyroid products, I am very definitely NOT a suitable person. But I encourage other to do what they think right.
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B12 Self Injection Regimes - Are you dosing higher? and more frequently than NICE says? How's it going...? 
B12 is just a vitamin...
Another GP visit...
