Posting this in case other people may find it interesting - I ran across it on Google earlier while researching something. I've not seen it linked before, so apologies if its already well known.
It's a presentation by a Consultant Haematologist at Hammersmith hospital on "Diagnosis and management of vitamin B12 disorders"
Warning - Comic Sans overload!
Ignoring the font travesty, I found it very interesting - particularly the Case reports as they choose ones that are outside of the 'norm' (it also covers very high B12 and its possible reasons)
It's not dated, but from the filename I think it was given in April 16 and it follows the BCSH guidelines pretty exactly.
It supports my growing feeling that haematologists seem to be generally up to date with the issues, so that a referral to one looks like a very good way to move past a GPs inability to treat correctly.
The 'take home message' also gave me hope that it's not always as bad as reading the awful stories on this forum sometimes suggests:
"The clinical picture is the most important
factor to consider in assessing the significance of vitamin B12 status."
"We treat patients not numbers!!!"
Gavin
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Thanks for posting this Gavin. I might be misreading the slides but it appears to me that there are possible repercussions of taking too much B12 as proposed on these slides ? Or have I got the wrong end of the stick ?
My reading was that a high B12 level was a symptom of some of the nasty conditions mentioned, rather than the cause. I guess it does show that it's important to let a doctor know if you are supplementing, so that test results can be properly interpreted.
I haven't looked into it much more, but I did recently find this:
Which suggests that there are no recognised problems of 'overdosing'.
Having said that, the body apparently naturally only needs 1-2mcg of B12 a day for it's normal needs - so the issue seems to be how to ensure the body can absorb what it needs - and a high dosage seems to be the recognised way.
What I'm not clear on and plan to do some further research on, is what role a high level of B12 plays in correcting/repairing any damage caused by deficiency - Since most people by definition don't get diagnosed until the symptoms have been present for some time (in some cases a long time! In my case at least 18 months but that seems low compared to some on here)
Yes I think you're right but it's not a 100% clear. I was diagnosed a year ago with a level of 50. I now SI every week but still have difficulty walking at times and pins and needles plus tinnitus etc. I find my Drs worse than useless and I know if I tell them I'm SI they will tell me to stop. I feel no better since treatment began and find it very difficult to manage or know what the best option is. Was thinking of a vitamin infusion. Would love to be able to find a specialist whom I could see.
Sorry to hear how bad it is for you - 50 is very low, so I'm not surprised that you are suffering!
I wish the 'recovery' process was clearer and understood better - it seems like it should be the subject of a lot more study.
It's the sort of thing that a neurologist should be the expert on, but my limited experience has already shown that they aren't necessarily always up to date with guidelines etc.
Wish I could find the answers, but there seems to be a large lack of understanding out there.
Good luck with finding something that will improve things - there seems to be a greater well of knowledge on this forum than anywhere else I've found.
Many thanks for a most interesting and helpful link. Gps and many heamotologists could learn a great deal if they had a look at this link! Am doubtful they would actually look at it...more so GPs who do not want to change the status quo too much... following the "reference ranges and box ticking method"... easier for them but useless for us patients.
Should you find anymore information regarding elevated levels of B12 I would be most interested to hear from you. I shall therefore follow you on the forum.
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Interesting article on more sustainable B12 production
How do I get tested for pernicious anemia?
interesting find
Dr won't treat for B12 even though I have neurological symptoms
