Finally managed to get a consultation with my regular GP, rather than a locum. She has agreed to increase my B12 injections to every 10 weeks instead of 12. Unfortunately the waiting list to see a neurologist in South Wales is currently 12 months, so for now she is not going down that route. I am now waiting for an appointment for nerve conduction tests for the problems developing in my fingers and existing problems in my toes. In the meantime she will go back over my notes, write up a summary and arrange an appointment with a medical registrar, as she thinks there may be other issues to investigate as well as B12, (she wouldn't elaborate on what, said best to consider other problems than just B12 deficiency) I have been on levothyroxine for over 15 years, and have a lot of joint problems, recently in my hips so she also wants a MRI scan of my spine. But GP's in my area have been stopped from ordering scans at the moment due to too many unnecessary ones been done on patient demand rather than clinical need. She will ask the registrar to consider doing this, and hopefully he can do a quicker referral to a neurologist if needed. Fingers crossed this won't take too long.
Thanks for all the advice I have been given in previous posts.
Written by
scadman
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I think that was done when the B12 problem first arose, 15 months ago. Was normal then, also had MMA? also normal, and IFA which was less than one and therefore within acceptable range. I have only recently started looking into B12 and the associated problems, I was never told before it could develop into a serious health issue, same as the underactive thyroid, never really questioned it.
Folate and B12 you are having injected work together with your iron to help it function properly and make red blood cells so the three need to be kept in balance.
Doctor told me waste of time taking B12 tablets as I have a reasonable good diet, so would taking folate supplements in tablet form work, or does it have to be injected as well, I have seen folate tabs for sale in Boots and Superdrug stores.
Glad to hear your injections have been increased to every 10 weeks. UK patients with B12 deficiency with neuro symptoms should be getting them every 2 months eg roughly every 9 weeks.
"arrange an appointment with a medical registrar, as she thinks there may be other issues to investigate as well as B12, (she wouldn't elaborate on what, "
It may be possible to get a copy of referral letter from GP to registrar...
"and IFA which was less than one and therefore within acceptable range"
Is GP aware of the possibility of Antibody Negative Pernicious Anaemia (PA where IFA test is negative or within range)?
Links below mention Antibody Negative PA and it is also mentioned in Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency"
Flowchart outlines when PA and Antibody Negative PA can be diagnosed in UK.
"she also wants a MRI scan of my spine"
Pleased to see GP wants you to have a spinal scan. B12 deficiency can lead to spinal problems in some cases eg SACD sub acute combined degeneration of the spinal cord.
There is a leaflet about SACD on PAS website available to members. Look under "Symptoms" section.
I am glad I can talk to my doctor and she listens. And if I want to pay, I can get any test to rule something out. I hope America doesn't end up completely with socialism and socialized medicine.
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