In clinical practice, the finding of an elevated serum B12 concentration is often the consequence of supplementation with B12 in either oral form or injections. Also, elevated serum B12 may be associated with underlying disorders, like liver diseases or a (haematologic) malignancy. Only a few studies have shown that it may also be the consequence of complex formation of B12-vitamin binding proteins with immunoglobulins, the so-called macro-B12. We describe a young woman who previously was diagnosed with B12 deficiency, and in whom, after cessation of B12 injection treatment, neurologic symptoms re-appeared, and despite this, repeatedly elevated serum B12 concentrations above the upper limit of the assay were found. We demonstrated that this was caused by the presence of macro-B12, which not only resulted in erroneous and longstanding elevated serum B12, but also masked her underlying B12 deficiency.
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jade_s
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I would say write to him, you never know ... at worst he would say No.
I wrote to Dr Chandy.. he immediately wrote back wanting my telephone number. He Phoned me later that week .... we were talking for 1.1/2 hours , family history, diagnoses everything . Even weeks later he phoned to see how I was.
You never ever Know if you don't try !!!
Some doctors/specialists have great interest in certain subjects, and the more they speak to people the more it enlightens them.
Thanks Sallyannl! Awesome that he was so interested! I suspect this doctor is similar. I mean you'd have to be to write these types of papers and also include a quote from the patient in the paper! I am already composing the letter in my head and will very likely email him.
Cherylclaire Hidden 😭😭😭 I sent the email and then got this automated reply back
"Thank you for your e-mail. After almost 20 years here in Groningen at the UMCG and a total of 42 years in 'health care', I am retiring. This is why you get this permanent 'out of office' notification. This e-mail address will remain valid, but I will not use it on a daily base."
😭😭😭 Goshdangit! GAH!
With any luck he will still read it and forward to a colleague who's still working on these things. And I *hope* he's been training the new people to think like him!
The fact that he bothered to set this up means to me that he is getting plenty of responses, and that he cares what happens after he retires. So yes, there is hope.
...supplementation with B12 had been withheld for more than 2 years.
Treatment, outcome and follow-up
Treatment with intramuscular hydroxocobalamin injections, 1000 mcg intramuscular twice weekly, was reinstituted. Importantly, based on the earlier findings and diagnosis, this treatment has to be considered a lifelong treatment for this patient. After restarting the injections, symptoms gradually resolved over a period of 2–3 months, and injection frequency was gradually decreased to 1000 mcg intramuscularly every month. Only a slight tremor of the hands remained, which was much less than before B12 treatment.
<Stop quote>
I am wondering what the hurry is to reduce the frequency of injections. This author has mentioned in articles that B12 injections are safe, and no mention is ever made of B12 being more safe when injected less frequently. It seems to be a common belief that the longer symptoms persist without treatment, the longer it will take symptoms to resolve one treatment is initiated. Most recently, the patient was without treatment for two years, followed by treatment over a few months. Persistence of "A slight tremor of the hands" seems to me to be an indicator of remaining neural damage. Many neural symptoms, such as those affecting the autonomous nervous system, are not so easily observed. My preference is to regard easily observed persisting symptoms as the "canary in the mine" of additional persisting neural damage. So further improvement, at a slower rate of improvement than the initial "low-hanging fruit", is the possible gain, vs. no expected risk of any kind.
Absolutely 100% in agreement. I initially thought she had stayed on 2/week but reread it last night and noticed the change to monthly. Which surprised me as well, given the remaining tremor. Seems like a very low (zero) risk strategy to just continue! I also very much agree with the canary analogy/reality.
Why oh why are they so afraid of people SI'ing b12, one of the safest substances in the world, when diabetics can literally kill themselves if they inject too much/too little insulin. 😠 Who is it that said the only way you can hurt yourself with b12 is to drown yourself in a bathtub filled with the stuff. 😂
I had many months where I had plateaued. (How the heck do you spell that?!) If I had reduced then, I'd never have continued improving in the long term. Then again I would have crashed very quickly but that's not my point lol.
I would also say that a "slight tremor of the hands" is a subjective observation. Relative to others that have been observed to have been significantly worse, perhaps ? Or to the previous strength of tremor, if observed as individuals ?
This might be more of a problem if, for instance, the patient was a surgeon, joiner, hairdresser, dentist, artist - could be devastating... and yes, the tip of the iceberg, but still problematic enough to be unemployable.
Besides which, the initial treatment for those with B12 deficiency with neurological symptoms is to continue EOD injections until no further improvements can be gained. Which at the very least suggests some agreement between doctor and patient on when that particular point has been reached. Who is more likely to call "when" first ?
I did once try to explain to a nurse how difficult giving up on previous self can be.
Still is.
[None of this would be observed anyway, if this was a telephone appointment from a GP.]
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