Just looking for some advice. My husband was diagnosed with very low b12 about a year or so ago. Took ages to get GP to agree to even test him. He was then given the loading dose jabs over a few months then tested after 6 months which came back within normal range so they stopped all b12 jabs saying he was fine.
Now a year later he is worse than before. He is extremely lethargic, in a fog most days, no appetite, losing weight, low mood, constipation/diarrhoea and now has numbness in fingers. He had colonoscopy and endoscopy in December to rule out stomach and bowel cancer. He had lesions in stomach specialist said were probably cause of b12 deficiency but as biopsies came back clear nothing was done.
He has been to see GP several times and keeps getting told nothing wrong. GP refuses to do anymore blood tests and says his b12 is fine.
My question is should he be pushing to be retested or be put back on b12 jab? From what I’ve read most stay on b12 jabs once ever month/3 months but hubby has been told his last blood test showed he was back to normal.
I’m really concerned as my husband doesn’t seem to be being taken seriously.
The British Society for Haematology guidelines say on the Diagnosis of B12 and Folate Deficiency "In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment".
In other word your husband's doctor should be treating the neurological symptoms instead of looking at the computer screen.
Make a list of your husband's symptoms and present this to his doctor and ask him to treat him according to his symptoms and (perhaps) even start him on loading doses "until there is no further improvement" according to the N.I.C.E guidelines below. Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"
If possible go with your husband to validate his neurological symptoms as the doctor is less likely to pooh pooh him in front of a witness.
It is also important that your husband's Folate level is monitored as this is essential to process the B12.
There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.
Symptoms of a folate deficiency can include:
symptoms related to anaemia
reduced sense of taste
diarrhoea
numbness and tingling in the feet and hands
muscle weakness
depression
Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.
I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.
I wish you well.
P.S. I've just wondered whether you are in the U.K.
To be perfectly honest your husband needs a new GP who understands B12 - though unfortunately they tend to be very few and far between.
Would be useful to know if you are in the UK - if you are then your husband is not being treated in accordance with current guidelines - which are for maintenance doses to continue for life.
Link to BCSH guidelines - your GP can access them through the BNF
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