I feel this article contains many bits of information that often pop up on this forum, and explains them quite thoroughly and clearly.
At the end is a statement that is relevant to most people on this forum, and I quote that statement:
"It should be noted that patients with pernicious anemia at times report that the recommended treatment schedule is not adequate to relieve all their neurological symptoms and therefore often request, or may even treat themselves with, B12 injections more frequently than the guidelines suggest. No biological basis for this apparent increased requirement for B12 replacement is known, but because there are no reports of adverse effects associated with excess B12 intake, there is no reason to advise against this practice."
Thanks for this. Key part being "No biological basis for this apparent increased requirement for B12 replacement is known" ... doesn't exclude the possibility that there is some as yet unknown mechanism. Like MacroB12! Transcobalamin antibodies! If you don't measure it then it will remain unknown 🫤 I will die on this hill! 🙈
Now that i've read the article, it is very interesting. Heavily focused on the hematological aspects which i guess is not surprising. Very little on functional deficiency, which he seems to equate exclusively with nitrous use. Also why does no one talk about IF binding antibodies, he grazes right past it (as everyone does). But otherwise a good overview!
I found this bit most interesting, after your quote. Didn't know these tests were being developed!
"One possible test that shows promise, the Cobasorb test, is based on the measurement of the change in holoTC following oral administration of nonradiolabeled cobalamin.82,93,94 An alternative approach has been described using accelerator mass spectrometry to quantify 14C in the blood following an orally administered dose of [14C]-cyanocobalamin.95 "
Would that be great! A modern alternative(s) to the Schilling test!
We told our doctor about our weekly SIing. He smiled tolerantly, and shook his head, and said there was no biological basis for it, and it must be a placebo effect.
We countered with our careful research as to what was the optimum timing, working back from monthly to fortnightly to weekly for increasing benefit, but finding none for a greater frequency in our case, except when we changed our normally placid existence for a week away, or a cruise, when the greater activity seemed to require 2 shots a week. Something that made perfect sense to us, that rate of consumption be tied to level of activity.
Now we read that pregnant women may be put on 1000mcg per day - orally, as they likely have no absorption problems from this - but that is seven times the dosage our doctor shook his head at.
But where is the truth of how long cobalamin lasts? A year, in the liver? Or two days, before it is all excreted in the urine? Don’t they know?
Our medical school is the school of what works for us, and to hell with competing theories. It would be very nice if one day there was an explanation, and a medical consensus though.
But I have a feeling that if there was, it would prove that those of us who inject even as frequently as half-daily were right to listen to what our bodies were telling us, and to act accordingly.
I am so happy to hear that you carefully planned pertinent information in advance of your visit to the doctor. It seems like all doctors feel that thay know all the pertinent information about B12, especially the dose amounts and frequency, when in fact, no one knows that because it's never been researched. Evidence of that is in carefully referenced academic journal articles: when the authors get to treatment frequency, they are reduced to citing the pamphlet that is packed with European hydroxocobalamin (which includes no references to academic sources), in the case of "The Many Faces of Cobalamin (Vitamin B12) Deficiency", or NICE standards, which, to my knowledge, also do not cite a source for recommended dose frequency. In addition, to know what dose size and dose frequency works best for B12 deficiency, researchers would have to relate dose variables to symptom improvement, and the few studies that have tried to do that are of very low quality (inadequate description of study procedures, too few subjects to be able to generalize results, treatment courses that are too short, no follow-up, and on and on). In general, B12 studies tend to describe results in terms of blood chemistry, and there is poor correlation between blood test results and anything related to symptoms.
When Pfizer was manufacturing b12 ampulles (Behepan) then Pfizer recommended injections every or every other day until symptoms where gone. See link in swedish
Two things in your response are interesting to me. One is, as you point out, that yet another B12 producer is indicating more intensive treatment than doctors are usually willing to provide. The other is that once again there is a suggested level of treatment with no indication of where the suggestion comes from.
Then we have Mayo Clinic in USA and B12 Institut in Holland, both internationally highly respected b12 experts, both recommends twice a week when having symptoms. In Sweden where I live, we dont even get injections - cause Sweden has taken the the desicion that b12 tabletts works good enough- making it almost impossible to get b12 injections. And by the way - its no use - cause Alternova (hydroxocobalaminklorid) is the only b12 ampull provided - and its a week b12 ampull that needs to be injected three times more often, but is used like a good hydroxocobalaminacetat. Thank god that we still are in EU and can buy from German webbshops.
LPThanks for posting this article. It was quite interesting.
However I was disappointed by the following quote, with regard to figure 1 showing the two reactions of b12.
'(Figure 1). It is remarkable that B12 is the required cofactor for only 2 biochemical reactions in humans,3 yet the effects of B12 deficiency are not only profound but protean. The several possible reasons for the broad spectrum of manifestations fall into the broad categories of genetic variation and acquired comorbidities.'
One of those reactions is involved in enabling proper DNA synthesis, all/any cells could be impacted
'An important B12 nutrient interaction is with folate. In B12 deficiency, there is disruption of normal folate cycling for regeneration of methylene-tetrahydrofolate, the form required to sustain synthesis of thymidine for DNA replication. Folate becomes effectively “trapped” as methylfolate,42 because B12 is required for its conversion to tetrahydrofolate in the methionine synthase reaction '
The other reaction noted under figure 3
'The key intersection of B12 and folate occurs at the methionine synthase (MS) reaction in which the one-carbon methyl group of methyltetrahydrofolate (MethylTHF) is transferred to Homocysteine to form methionine.'
A little further in the explanation for figure 3
The other product of the MS reaction, the essential amino acid methionine, after adenosylation to S-adenosyl-methionine (SAM), serves as a universal methyl donor in numerous methyltransferase reactions. '
'
SAM as a universal methyl donor is involved in over 200 processes in the body. Thus the knock on affect of low or deficient b12 results in low SAM and a subsequent impact on all the processes that it is involved in, including the production of melatonin from seratonin.
So both of these 2 simple reactions involving b12 then have wide reaching affects.
But how to get this message through to this well meaning haematologist and the rest of the medical profession.
Kathy ( who many years ago studied biochemistry at Leeds University & has forgotten most of it. Go Diogenes I look forward to your papers)
"But how to get this message through to this well meaning haematologist and the rest of the medical profession."
I do not think you likely will until there is a test which shows the efficacy of treatment. Until then they will engage in hubris fully confident there is no issue with their training or the way they utilize their training. They will continue to believe with confidence the problem is with the patients.
Even those professionals that are following the guidelines do not allow that there is no reason to not prescribe self-injecting hydroxocobalamin SC 1 mg every other day and it has the highest probability of a positive outcome for the patient.
No professionals are considering the form of B12 or frequency of injecting. Problem solved for the professional and not the patient.
I personally have not tried to find a professional who is trained or attempting to train one. I choose to put my energy and efforts into trying to find a solve that has a better outcome than current guidelines. After having followed the current guidelines and determined how the current guidelines affected me.
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Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Vitamin B12 deficiency - Recently diagnosed
Vitamin b12 deficiency
Anyone interested in the history of the isolation of Vitamin B12 and its development as a 'medicine' for treatment of PA?
List of all types of injectable vitamin B12 available from German online pharmacies
