Advice please

[RJGFiona]

Hi everyone I finished my loading injections 4 weeks ago, felt a little improvement but still tired, heart palpitations, vision impaired, tinnitus etc so went back to the GP had a load more blood tests done which came back as no action needed, however thanks to this group I know I need to know abit more. My issue is I am struggling with my balance and my legs feel as they will give way, also I feel depressed. I have had depression years ago I know this is attached to B12 so I need to go back again to the GP.

[Mico1]

In short, I spent months trying to convince my GP I was B12 deficient due to over 2 decades of Lansoprazole use. Only when I went to a different minded GP did he look at my entire medical history and saw multiple motorcycle-race crashes and other neck traumas. He ordered an MRI. I have spinal cord compression in the cervical neck which is being dealt with now. The symptoms of B12 deficiency are the same, mostly, as that of spinal cord compression; both exhibit neural symptoms. I'm not saying stop the B12 treatment, I'm simply saying consider spinal cord damage/compression. If you've ever had neck injury, whiplash etc, maybe discuss this with you doctor and explore it. You may be surprised. Its easy to get fixated on one cause and flog it to death, but if you're not getting relief with your current regime, maybe its time to focus on additional areas. Stop guessing, get hard clinical tests. If your GP tells you your B12 is within range, take that as a hint you may not be looking at the real issue. Good luck, keep me posted?

[Mico1]

healthunlocked.com/myelopat...

[Mico1]

spine-health.com/video/cerv...

[Foggyme Administrator]

Hi RJGFiona. My goodness....your serum B12 level of 90 when you were diwgnosed was very very low - severe B12 deficiency. And you have neurolgical symptoms.

It sounds as if your B12 deficient is being under-treated. The guidelines state that those with need more intensive B12 therapy. After your loading doses you should be receiving B12 injections every other day until no further improvement (sometimes for many months - up to to years). Not many GPs know,of this treatment regime. Details of this can be found in the BNF (prescribing guidelines) - all GPs have a copy on their desks. Here's a link to the BNF:

bnf.nice.org.uk/drug/hydrox...

(BNF B12 Deficiency: Hydroxocobalamin Treatment Regimes)

The prescribing guideline for those with neurogical symptoms (the intensive regime of treatment) is about the third paragraph down - GPs rarely read that far so you may have to,point it out to them 😉.

About the blood tests and no action needed - serum B12 testing is not required following B12 injections (all the guidelines state this) and serum B12 levels following injections cannot be used to manage treatment - GP should be treating symptoms, not serum B12 levels (levels say nothing about the efficacy of treatment). Some GPs stop treatment or reduce the frequency of injections if B12 levels are within the 'normal' reference range, following injections. This is wrong. Here's some information about that:

stichtingb12tekort.nl/weten... (Testing B12 During Treatment)

When neurological symptoms are present it's important to receive the intensive regime of B12 injections to enable proper neurogical repair and prevent the potential for irreversible neurolgical damage. Again, your GP may not know that.

Here's more information about that:

stichtingb12tekort.nl/weten... (B12 Treatment Safety / Long Term Treatment for neurological symptoms)

So yes, you're right...you need to see your GP again and asked be treated according to the prescribing / treatment guidelines for those with neurological symptoms.

I note Mico1 's points but think that in your case your very low vitamin B12 on diagnosis and the slight improvement when you have injections is indicative of B12 deficiency. However, if your neurogical symptoms get worse or do not improve on the intensive regime of B12 injections, it would be usual for a GP to refer to a neurologist for further investigations (there are many other causes of neurogical symptoms and some can co-exist with B12 deficiency).

If you do have to be referred to a neurologist and they suggest an MRI scan, ask for one of your head and spine (many miss out the spine and this is an area where B12 damage can be spotted on a MRI scan.

So, in conclusion....your blood tests may (or may not) be 'normal' but you still have the symptoms of B12 deficient because you are not being treated according to the guidelines. As you rightly spotted, your B12 deficiency is being under-treated - and hence your continued symptoms.

I'm not surprised that you still feel so ill. Your B12 level at disgnosis was very very low. And yes....depression can be another symptom of B12 deficiency. Please don't despair...things do improve, though it can take some time for some of the bodies systems to repair themselves, particularly anything to do with neurology.

So...good luck with your GP. Hope to hear that you injection frequency has been increased to the appropriate levels (every other day until no further improvement 😉).

[RJGFiona in reply to Foggyme]

Hi Foggyme, my B12 was actually 70 at diagnosis si that explains alot, also they said my vitamin D was the low side of normal so advised me to take supplements which I started. Thankyou so much for your reply I have learned so much and I will be back to the GP again and tell them the guidelines you have referred to. Thankyou

[RJGFiona in reply to Foggyme]

Hi Foggyme, hope this is ok to contact you. Went to the GP today with all you advice and websites saying I should be still on loading doses, unfortunately she was adamant my B12 was now ok and refused to give me anymore. However she is going to speak to hematology for their advice and then neurology so hopefully things will be done. If not I will be on the internet buying and self injecting. Thankyou for all your help x

[Foggyme Administrator in reply to RJGFiona]

Oh dear RFGFiona...a doctor who obviously has no idea that serum B12 levels are irrelevant once injections have started...and more importantly...that a more intensive regime of treatment is required for those with neurolgical symptoms...like you.

For goodness sake, all she has to do is read the BNF (prescribing guidelines)...she will have a copy on her desk. Grrr.

Hope she gets good advice from haeamatology or neurology, though sadly they are often no better. But fingers crossed.

Think your plan of self-injecting if things come to nought is a good one...but how very dreadful that so many of us have to resort to this to prevent neurolgical damage...and get well.

Thanks for the update. Be interested to hear how it turns out. Good luck xx