B12 deficiency - newly diagnosed

Hi I am new to this forum

Recently been diagnosed with B12 deficiency it is 135. I am 76 and have been having symptoms for over 15 years first referred to Neurology in 2003 where I was told I was expecting too much of myself - main symptom at that time was loss of balance. Gradually over the years balance and walking has deteriorated - 2 years ago returned to my Doctor who has taken me seriously and again back to Neurology and Cardiology. All come back as being OK but apparently a B12 test was done and my level at that time was 180 so bottom of the scale . Then it was suggested possible CFS/ME but only borderline.

Recently I was referred by my optician to Ophthalmology to check for possible Glaucoma (which I don't have) and in talking about general health it was the Ophthalmology consultant who suggested B12 deficiency! and she arranged the blood test then and there.

Just started on the B12 injections 6 over 2 weeks and just had the blood test for Intrinsic Factor and waiting for the result. I suppose my question is should I supplement my injections with either sub lingual tablets and or a spray of Methylcobalamin.

10 Replies

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  • It's difficult for me to advise on those supplements you mention , as I tried them and they were useless for me , but I am a confirmed PA patient( positive antibodies to intrinsic Factor ) But they might help you Whether they help you or not they will boost your apparent B12 readings .You could also have PA even if the test is negative , I hope that your doctor knows this . Injections are the only thing for me .I am forced to self inject as 3 monthly is not enough. If the b12 lozenges were 100% effective , I think that doctors would prescribe them - so much simpler than having us come to the surgery !

    Some members here do use the sub-linguals or nose -spray so they must get benefit.You can self - inject . I am older than you and I do . Help here for you if you decide on this .,

    Vitamin B12 deficiency and PA are often misdiagnosed as CFS/ME, depression ,Autism,bipolar,Dementia,fibromyalgia,MS,Parkinson's ,Schizophrenia,post- natal depression etc ! If it gets really severe ,hearing,sight ,bladder and other functions can be affected . Anywhere there are nerves involved. The myelin sheath at the nerve-endings needs B12 to replenish . If it gets too damaged, it is irreversible . Best wishes to you . You are now part of the family 😃

  • Thanks for that and I guess I will have consider self injecting - I know diabetics do

  • You will never regret it if you . I think a lot of older people are low on B12 not due to PA , but because as one gets older , one produces less stomach acid which is needed to absorb B12.. I would never have thought that could self inject But it's now routine .Diabetics do sub cutaneous injecting . So do some P.A. Patients. Doctors use injections into the muscle . So do I, I use a long needle to extract the B12 from the ampoule. Then a shorter one, 1 inch into the outer middle third part of my thigh . You can get help here or on u tube etc.

  • Thanks for that - I know Dr Myhill's site shows diagrams of how and where to inject - how do you get your supply of B12 ampoules? Through your Doctor or privately?

  • Before starting additional B12 supplements I'd wait and see how your current regimen pans out (I'm assuming you're going to get 2/3 monthly jabs after the loading doses). It could be that you are one of those people for whom the standard treatment works perfectly well.

    However, it can't do any harm to top up with sublingual spray/lozenges.

  • Hi. I started taking sublingual b12 lozenges, about 10x5000mcg daily and they helped enormously. They are methylcobalamin. I now self inject hydroxocobalamin, but will start getting it from the nhs soon. I've not told them I self inject! However, I still have 3-4 lozenges every day too.

    You may be on enough injections, so I would wait and see how you feel. If you are nit getting the injections regularly enough once on the maintenance regime then you could self inject or return to lozenges or spray in between. Taking them now won't do any harm though as you can't overdose, but hopefully the injections from your doctor will be enough and you won't need to have extra. I hope so. Good luck. :-)

  • Hi Lizzie86

    As your symptoms are neurological your loading doses should be on alternate days until there is no further improvement then maintenance shots every 8 weeks. (Assuming you are in the UK) Don't settle for anything less. This is the guidance from NICE and the BNF both of which your GP can easily access for the information and advice. See how you get on with this regime; I think you will know pretty quickly whether you are getting enough B12 and if you need to supplement or not.

    I wish you well

    Megan

  • As you had neurological symptoms the recommended regimen by NICE and the BCSH is actually loading shots 3x a week until symptoms stop improving (with review at 3 weeks) followed by maintenance shots every 2 months - sounds like you have been put on the regime for treatment without neurological involvement - though in the UK different regions can follow quite different guidelines from those suggested by NICE and BCSH.

    I find that methyl helps me a bit with the feeling in my left foot and seems to help a bit with sleeping but my main symptoms are neuropsychiatric and it does absolutely nothing for them so I use a mix of different types of B12.

    Unfortunately there isn't any way of knowing what treatment will actually suit what person - either in terms of format of delivery - injection, nasal, sublingual or skin patches - or in terms of frequency so all you can do is try and see what works for you. Like fbirder says its worth seeing how you get on with whatever regime you are given before jumping in to self-injection - though supplements of B12 won't hurt.

    You also need to keep an eye on your folate levels.

    And it is worth remembering that there can be more than one thing going on.

    Definitely worth keeping a diary of your symptoms - identify all that you have and monitor what effect the loading shots are having ... and then after the loading shots monitor to see if and when they return.

  • Keep your folate level high as this helps process the B12 Lizzy86

    I wish you well

  • Lizzy86, I think it is wise to research what vitamin supplements are required once you have a diagnosis. There will be considered information on this site but in summary you will probably require a good B Complex, B6 and magnesium. B12 needs Potassium which many of us enjoy in a banana smoothie with black strap molassis and spinach leaves. Just do a few searches so you are set up to make the most of your injections. Good luck.

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