I had problems with the Gp who diagnosed me and have decided to try another gp in the practice rather than bang my head against a brick wall any longer. I see her this week -- am now self-injecting every other day IM and starting to feel better. I want to stay on my surgery's radar for B12 deficiency and would also like to have a proper diagnosis. I don't want a referral to a haematologist or neurologist unless it's useful. I know they'll order more bloods which will probably show my levels sky high now, but what should I be asking the gp to do as a next step? (I've printed out material to show her btw). I'll keep going to the surgery every 12 weeks and not sure yet if I'll tell her about self-injecting. Don't want to be thrown out if the practice.
Suggestions?
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Pingo
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Hi Pingo,I decided not to tell them and will take the every other day doses that they have offered me.Idont think they will do more bloods on me so I will continue self injection when I need to.If they do more bloods you will have to tell them.I don't think you are doing anything wrong.Show them the literature you have and hopefully they will be more co operative than my GPs.Good Luck I hope it goes well.
This is an interesting question - I am in a similar situation with my GP - who has now refused any further B12, though has made a neurology referral, after writing to a neurologist for advice, who replied 'her symptoms could indeed be caused by B12 deficiency', then went on to say, 'although the NICE guidance is clear, I see no reason to continue with injections of B12'!!!! I have been self-injecting, and my symptoms have basically resolved, so I'm not sure what a neurologist will do with an asymptomatic patient! I'm not sure how to account for the improvement without admitting to the self-treatment!
With regard to pursuing a proper diagnosis, whilst you are self-injecting your B12 levels will be high, and so it seems unlikely that an unsympathetic/uninformed GP will pursue matters further. I have wondered whether if I continue to pursue matters further with my GP (or indeed whether I've already 'gone too far' with them), that I won't be given even three-monthly injections, as they will (wrongly) regard me as not deficient.
I'm not sure I've been any help, but there seem to be lots of us in this situation.
I'd be interested to know what you decide to do and how it goes.
My own experience is that when I told the GP I was intending to self-inject, he agreed to give me more injections.
My thinking was that if I didn't speak up, he'd have no reason to believe the standard treatment doesn't work for everyone, and that wouldn't help his next B12 deficient patient. Also, I wanted him to know the desperation level felt over trying to obtain effective treatment whilst suffering such debilitating symptoms.
After fighting for more frequent injections by providing a comprehensive diary of my symptoms and how they are resolved by my injection, also providing information about guidelines and research my GP agreed to up my injections from 3 to 2 monthly. However, despite all the evidence he was not prepared to increase them further. As I was not prepared to compromise my health I decided to SI.
At one of my appts with the nurse, she was aghast to find I was supplementing my injections, I subsequently got a request to go in and see the GP! Like you Agane I felt that for the sake of other people in my position I needed to be open with my GP, again evidencing my decision. He was clearly angry and said he'd stop all injections. He refused a copy of Martin Hooper's book and the further research I offered, stating he was too busy. The appt ended with me being been told to do what I like as he essentially showed me the door. It was a bit like a kid having a tantrum!!!
Moral of the story. If you have a GP willing to listen, to accept they need to be open to further learning, you're VERY lucky!!! But overall, we need to look after number one with this condition.
That's appalling. I really don't understand why we all have to fight so hard to access a simple treatment. Thank goodness for this site & the advice & support it gives.
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