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    • gran in space
    • By gran in space 14th May 18, 2:16 PM
    • 29Posts
    • 2Thanks
    gran in space
    Help re Vitamin B12
    • #1
    • 14th May 18, 2:16 PM
    Help re Vitamin B12 14th May 18 at 2:16 PM
    Hi, does anyone else have a problem getting docs to agree to giving B12 injections? We are fighting for hubby as he has been going downhill recently with all the neurological symptoms of this deficiency (to the point of collapse) but because he's in their wide "normal" range but only just, they won't even trial him to see if it helps.


    I've tried everywhere to find how to get him what now may be life saving jabs, much cheaper treatment than all the bloods, CT scans, ultra sounds, etc that for over 10 years he's been given WITH NO DIAGNOSIS ... sigh. He has had low platelet count for many years too, but no explanation as to why or offer to treat. I've now researched it and one of the reasons is due to low vitamin B12.


    Haven't given a full summary as it would take all day. However, I am now desperately wanting to find out if he will ever be well again. NICE guidelines say that if neurological symptoms apparent, treat urgently as damage may be irreversible. Too awful to contemplate but we certainly need to give him a fighting chance IF the NHS would follow their own damned guidelines.


    Many thanks for reading and for any help, suggestions you may be able to give.
Page 1
    • downshifted
    • By downshifted 14th May 18, 2:29 PM
    • 912 Posts
    • 1,935 Thanks
    downshifted
    • #2
    • 14th May 18, 2:29 PM
    • #2
    • 14th May 18, 2:29 PM
    We have an organisation called Healthwatch in Kent who will help if you!!!8217;re not getting the treatment you need. Is there something similar in your area?
    Downshifted

    September GC £251.21/£250 October £248.82/£250 January £159.53/£200
    • downshifted
    • By downshifted 14th May 18, 2:31 PM
    • 912 Posts
    • 1,935 Thanks
    downshifted
    • #3
    • 14th May 18, 2:31 PM
    • #3
    • 14th May 18, 2:31 PM
    We have an organisation called Healthwatch in Kent who will help if you’re not getting the treatment you need. Is there something similar in your area?
    Downshifted

    September GC £251.21/£250 October £248.82/£250 January £159.53/£200
    • Red-Squirrel
    • By Red-Squirrel 14th May 18, 2:54 PM
    • 2,663 Posts
    • 7,131 Thanks
    Red-Squirrel
    • #4
    • 14th May 18, 2:54 PM
    • #4
    • 14th May 18, 2:54 PM
    If his B12 levels are normal then he needs further investigation into what is causing the symptoms, is that happening?

    I presume he takes oral supplements already? He could try sublingual or go private to get the injections, but I wouldn't be so certain that B12 is the problem.

    If you aren't happy with your GP, go to a different one.
    Last edited by Red-Squirrel; 14-05-2018 at 3:21 PM.
    • gran in space
    • By gran in space 14th May 18, 3:29 PM
    • 29 Posts
    • 2 Thanks
    gran in space
    • #5
    • 14th May 18, 3:29 PM
    • #5
    • 14th May 18, 3:29 PM
    Thanks I will try many thanks for that, just as long as someone listens to us. Much appreciated.
    • gran in space
    • By gran in space 14th May 18, 3:44 PM
    • 29 Posts
    • 2 Thanks
    gran in space
    • #6
    • 14th May 18, 3:44 PM
    • #6
    • 14th May 18, 3:44 PM
    As said, LOW but in normal range and it's been written that anything under 200 (the bottom range is 148) with neurological symptoms and elderly should be investigated promptly. He never has been and still not. We didn't know it was B12 so no, never been on supplements, if only he had...but no one told us... well they wouldn't would they, we were told "normal". B12 controls the nervous system and can be worse case scenario if left untreated. I've studied it now due to trying to find an answer for his symptoms and severe deterioration.


    The medics have NEVER offered a diagnosis or given him a trial of B12.... in years they've done nothing just test after test and all NORMAL. So I have come up with the only thing that matches everything he has...plus low results and low blood platelets. So he hasn't been investigated, all they say is...let's do this test again!! All they have to do now is give him the injections. He can't overdose as he's so low and anyway you can't overdose on B12 as excess is excreted through the kidneys. So what's not to like about at least trying him?


    He isn't the only person not getting this to help their symptoms, not many GP's are aware of just how debilitating this condition is, in fact some flatly refuse to believe it. There are many people put onto tablets for their heart problems and other conditions when they should have been on B12 as it causes all the symptoms of heart palpitations, breathlessness etc etc. Think of the cost to the NHS.... the injections are relatively low cost in comparison. So yes I do believe it's B12 deficiency until they prove me wrong ....and they won't because they won't give him a trial.
    • clairec79
    • By clairec79 17th May 18, 12:27 PM
    • 2,352 Posts
    • 6,243 Thanks
    clairec79
    • #7
    • 17th May 18, 12:27 PM
    • #7
    • 17th May 18, 12:27 PM
    We do have a lower range of acceptable than many other countries

    I know mine stated if under a certain level but symptomatic (180 I believe) then treat - they were happy to start treatment for me
    • Cyclizine
    • By Cyclizine 18th May 18, 6:10 AM
    • 67 Posts
    • 73 Thanks
    Cyclizine
    • #8
    • 18th May 18, 6:10 AM
    • #8
    • 18th May 18, 6:10 AM
    You say he has not been investigated, yet you then state he has been extensively investigated over the last 10 years. I presume he is anaemic? You have a right to ask for a second opinion, but be prepared that you may not get the answer you want.
    • FBaby
    • By FBaby 20th May 18, 8:58 AM
    • 16,680 Posts
    • 41,267 Thanks
    FBaby
    • #9
    • 20th May 18, 8:58 AM
    • #9
    • 20th May 18, 8:58 AM
    OP, you need to google 'Vitamin B12 testing' and you'll get to an NHS website that actually say that the standard Vit B12 is not always reliable because it tests ALL the vit B12 in the blood rather than active B12. Many GPs won't know that. What he needs is an active B12 test. If you print this page, alongside the NICE guidance, and speak to the GP in a way that doesn't come across as doubting their judgement, they might be open to reading it and realising that indeed, Vit B12 could be the cause of the symptoms.

    If that doesn't work, there are alternatives. You can by sublingual (under the tongue) Vit B12 from H&B that supposedly can be as good as injections, so it's worth trying. If wanting to go the injections route, which is the recommended treatment for Vit B12 deficiency, you can actually order it online from countries where Vit B12 is available over the counter. There are many people who do that and it works well for them. It is not too expensive. It means doing the injections yourself though, so you need to be comfortable with this.
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