My Uncle ,91, had started having delusions but after a series of 6 injections B12 he returned to normal. The last injection was 3 weeks ago and he has started to have delusions again.
Question is - Could the B12 level have dropped so quickly? Does anyone have an elderly relative with any experience that would match this?
H jlsl short answer is YES. Get the doctor who arranged the loading doses to continue them and also to check your uncle's Folate level.
I'm not medically trained but have had P.A. (a form of B12 deficiency) for over 45 years.
Yes, my instinct is as Clive suggests.
Have you read 'Could it be B12 Deficiency' ? It's an excellent book and covers how B12 def can present as similar symptoms to many other things, including MS, Dementia, CFS/ME etc.
Excellent book, and very much recommended - amazon.co.uk/Could-B12-Epid...
Hi jlsl. Sorry, I don't have time for a long post, but I wanted to get some information to you. So excuse me if this sounds a bit abrupt...here goes:
Neuropsychiatric symptoms are recognised symptoms of B12 deficency - they're classed as neurolgical symptoms.
When neurolgical symptoms are present, after the loading doses, B12 injections should continue every other day until no further improvement (se BCSH Cobalmain treatment guidelines, and BNF treatment guidelines in the links below). Not many GP's know about this neurological regime so you may have to,provide evidence to your uncle's GP in order to get him to prescribe the correct regime).
BNF treatment guidelines for this regime refer to those with PA and neurolgical symptoms....so GP may may say ah ha - no PA so is don't apply. Wrong. Whether your uncle has PA or not (it's not quite clear) is a moot point. The treatment for PA is the treatment for the B12 it causes - so the treatment for B12 deficency (whatever it's cause - and there are many) is the same. B12 injections. Also note - B12 deficency and neurolgical symptoms can present without macrocytic anaemia (something else your GP may look for when considering the intensive regime of treatment)...30% of people with B12 deficency and neurological symtpoms do not have it...so it's absence cannot be used as a reason to not prescribe every other day injections (after the loading doses).
The fact that your uncle's symptoms were alleviated on the loading doses and then returned when the frequency of the doses was 'stretched-out' is a sure indicator that he needs more frequent injections - every other day until no further improvement - as per all the guidelines.
I agree with clivealive about asking GP to check folate levels, if not already done. B12 and folate work together so if folate is deficient or too low in the reference range, the body will not be able to utilise B12 properly. So best to check.
Also - people with absorption problems (the main cause of B12 deficency) can also develop other deficiencies, the main culprits (apart from folate) being iron and vitamin D. So...ask GP to check ferritin (one of the markers of iron deficency anaemia) and vitamin D levels. Both can make you feel quite ill if deficent or too low.
Going to paste in some link below that will give you more information about B12 deficency, together with the guidelines for treatment - and other intersting tips to help you get the appropriate treatment from your uncle's GP.
Looks like a lot of reading but most are only one page long. The BCSH are a bit longer but contain useful summary sections. Link are annotated so,you can find what's relevant, more quickly. I information about neuropsychiatric symptoms is the last link.
Sorry this has been a bit rushed...good luck, hope all goes well for your uncle...and please post again if you need more help...or just to let us know how you get on.
Here come the links:
b12researchgroup.wordpress.... (Serious Caution Note about the use of Oral and Sublingual B12 Supplements)
bnf.nice.org.uk/drug/hydrox...
(BNF B12 Deficiency: Hydroxocobalamin Treatment Regimes)
pernicious-anaemia-society.... (PAS Symptom Checklist)
stichtingb12tekort.nl/weten... (BSH B12 Deficiency / PA Diagnostic Flowchart)
onlinelibrary.wiley.com/doi... (British Committee for Standards in Haematology (BCSH) Guidelines: Treatment of B12 Deficiency and Folate Disorders)
nhs.uk/Conditions/Anaemia-v... (NHS Choices. B12/Folate Deficiency - Small Section on Functional B12 Deficiency)
cks.nice.org.uk/anaemia-b12... (NICE Guidelines Treatment of B12 / Folate Deficiencies)
onlinelibrary.wiley.com/doi... (UKNEQAS B12 Treatment Alert, Neurological Symptoms and Risk of Subacute Combined Degeneration of the Spinal Cord – Immediate Treatment with B12 Injections)
stichtingb12tekort.nl/weten... (Problems with Serum B12 Test)
stichtingb12tekort.nl/weten... (Testing B12 During Treatment)
stichtingb12tekort.nl/weten... (Misconceptions About B12 Deficiency – Good to Know Before Seeing GP)
stichtingb12tekort.nl/weten... (B12 Deficiency: Neurological Symptoms Can Present Even When B12 is ‘In-Range’ and Without Macrocytosis (large red blood cells) or confirmed PA Diagnosis)
stichtingb12tekort.nl/weten.... (B12 Deficiency and Intrinsic Factor – Can Be Negative and Still Have PA)
stichtingb12tekort.nl/weten... (B12 Treatment Safety / Long Term Treatment for neurological symptoms)
bloodjournal.org/content/bl... (Haematologist B12 Treatment Review March 2017 – Includes Advice No Reason to Advise Against Self-Injection/More Frequent B12 Injections)
stichtingb12tekort.nl/weten... (B12 Deficiency and Neuropsychiatric Symptoms)
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Thanks to all for your replies. Much appreciated!
His GP has been pretty good, so I am hopefull she will take on board the info you have provided to me.
In my opinion, it is good to make sure b12 levels are up if a person is having anything going on with the nervous system, including memory. I don't think I was ever delusional but I could not remember who close family members and friends were at times. Not everyone, but some. Forgot going to reunions, raised animals I couldn't remember. I could not concentrate, stuttered, etc. Seems like a very fast healing though.
My Uncles GP has changed frequency of injections from 3 months to 2 months, so we will have to see if this has the desired effect.
On a normal three monthly schedule do they give just one injection or another series of six?
'Foggyme' - Thanks again for the comprehensive info.
Forgot to mention, GP said my Uncles Folate level was normal.
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