I have B12 injections every 6 weeks since 2012. Last Monday they refused to give it to me saying my levels were too high so had to have a blood test instead. Looking over my medical notes, it seems that my levels are sometimes high and sometimes normal, surely the normal levels are because I have the injections!
My level in June was 1505 and last Monday it was 880.
My doctors surgery have told me that it is dangerous to have high levels of B12. Is this correct? Surely not or people wouldn’t go and have a drip of B12 when they needed more energy. Very confused.
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lpmsjrb
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No , no , NO !!! There is no toxically high level of B12 Total rubbish ! . That applies to some vitamins , but NOT B12 .. Ask what medical papers state that . You want chapter and verse for that . Also, once you have started B12 injections , blood tests for it are a total waste of time . They should refer to the guidelines . They are either incompetent or untruthful , either of which should be prompting you to change surgeries .
Another untruth . You should write a letter to your GP and surgery manager to complain . You must fight to get your treatment reinstated . As a member of PAS , you could get assistance with this .
I was told every individual/patient is treated. So of it's on the patients interest more can be prescribed.
Subcutaneous injections of b12 are off licence. So nurses are not covered to di them.
However as so many actual drugs are prescribed 'off licence ' it is possible I had the usual long battle Nothing a
Has been easy. (Meanwhike bought some)
Then to my surprise the Gp rang and said she would prescribe sc with me taking responsibility. I didnt get the needles ect which amused the pharmacist but dud pursue that as had them already and cheaper not on prescription.
So the off llicience that they have stated challenge.
The toxicity challenge
Tour needed treatment challenge
Stick to up to 5 points only.
Mainly your treatment ans injections for life and symptoms
high B12 can be an early indicator liver and kidney problems. High B12 does not cause these problems - it is caused by these problems (dumping of B12 stores in the case of liver problems and being unable to remove B12 from the blood in the case of kidney problems.
High B12 levels in some people lead to a condition called 'functional B12 deficiency' in which you have all the symptoms of B12 deficiency but with high levels of B12 in the blood. For some reason the raised B12 levels trigger a reaction that makes the process transferring B12 from blood to cells much less efficient. Because this is about the efficiency of transfer raising B12 levels is an effective way of treating the problem.
You are correct that your levels are most likely to have been caused by the injections which will put huge amounts of B12 into your blood and then it will fall over time. On average it falls back to normal levels in one month (cyanocobalamin) and in two months (hydroxocobalamin) but the studies done on this showed huge variation between patients and huge variation between individuals - some retain cyano longer than hydroxo and some patients still had high serum B12 4 years later (unfortunately the studies didn't report on patient symptoms just on serum B12 levels).
If you are a person that reacts to high B12 in a way that leads to functional B12 deficiency your GPs will have been the cause of the functional B12 deficiency by giving you your first injection.
hydroxo-B12 is the treatment of choice for cyanide poisoning because of its lack of toxicity. Dosing is 5g administered intravenously over 15 mintues - risk being hypertension as a result of the amount of fluid involved - this dose can be repeated 30 minutes later if required. That is doses that are 5000-10000 times the amount you are receiving every few months administered in the space of a day.
B12 is not toxic.
High B12 does not cause liver and kidney problems - it is caused by them.
High B12 is associated with functional B12 deficiency but this seems to be to do with efficeincy rather than toxicity and would have been caused by the initial injection anyway so a bit late to be worrying now about high B12 levels.
do not recommend testing of B12 levels post injections unless there is a reason to think youmay not have complied with treatment - basically the test becomes extremely difficult and problematic to interpret post a loading shot as the loading shot significantly changes the factors that were used to produce the normal range being applied.
If you have an absorption problem such as PA treatment is for life.
The licencing arrangements in the UK are not purely about safety. They are driven by manufacturers and actually nobody is sure - not even the regulatory authority where 2-3 monthly for hydroxocobalamin came from as the original licence back in the 1960s was for monthly. It is licenced for monthly in other countries (eg Germany where it is actually an over the counter medication.
PS There is a correlation between high B12 levels and some cancers which means some cancers are associated with higher B12 levels but no causal relationship has been established. Functional B12 deficiency could be a factor.
There is also a correlation between low B12 levels and some cancers. Causal links have been established in these cases- eg high levels of gastrin production in relation to stomach cancers and the fact that B12 plays a part in the process that cells use to replicate DNA.
My Doctor in India had a special interest in B12. She said experience had shown her that people only function well with levels above 800. I'm very grateful that it was she who diagnosed me and for her knowledge. It didn't take me long after my return to the UK to realise knowledge is seriously lacking amongst many health professionals here.
Unfortunately, that Mayo Clinic article is appallingly bad.
It states:
Because your body is capable of storing several years' worth of vitamin B-12, deficiency is rare.
They know nothing about your body.
The “several years’ worth” is based on someone in whom the entero-hepatic recirculation of B12 is working. (It only looks like a vast amount because of that recirculation. The actual quantity is far more modest.) That cannot be assumed to be the case. In fact, it can be assumed NOT to be the case in Pernicious Anaemia.
Rarity has nothing to do with it. Ability to store B12 has nothing to do with Pernicious Anaemia or dietary deficiency. And something being rare in the population means neither that you do, or do not, have it. Population statistics cannot be applied to individuals.
It then goes on to:
However, older adults, vegetarians and people who have conditions that affect their ability to absorb vitamin B-12 from foods might benefit from the use of oral supplements.
This is grossly wrong for anyone who has impaired ability to absorb B12. If you can’t absorb it, you can’t benefit from it.
Your bodies body absorbs only as much as it needs, and any excess passes through your urine.
This too is grossly wrong. If you have Pernicious Anaemia, you simply do not absorb the B12. Those who can absorb B12 appear only to be able to absorb a maximum of around 10 micrograms of B12. If you are deficient, that is still all you can absorb, however much you actually need.
It doesn’t even mention one of the reasons to be more cautious with B12 supplementation – Leber’s hereditary optic neuropathy.
Nor that high doses of B12 can affect potassium levels. One of the few real issues.
They don't appear to use the word toxicity or any related word.
On the basis that it is recommended NOT to test once on B12 injections (and caution is required even for oral supplementation) because of the possibility, indeed likelihood, of misleading results, aiming for the top end is rendered difficult to impossible.
Just to confirm...there is no such thing as 'toxicity' or excessive use of vitamin B12...nor is there any 'value' in aiming for 'no higher than the high end of normal range'.
Those who have to inject vitamin B12 to maintain health (and stay alive) inevitably have extremely high levels of vitamin B12 - often way over the top of the reference range (mine are always well over 2000).
Once treatment has begun with B12 injections, efficacy is monitored by symptom control - not serum B12 levels (enough B12 to keep symptoms at bay - however much that may be).
To advise that B12 is dangerous or toxic and that B12 levels should be limited to within range is dangerous and inappropriate advice to give, especially to those who have no option but to rely on injections for their very survival.
At my previous surgery I started having B12 every week, the nurse told me that the body will adsorb B12 to a point, and that its like leaving a tap running, the water just overflows when it reaches its level, but never said it was dangerous to do so.
Also, there are set protocols which every surgery must adhere to. But to say they aren't licensed to do your regular injections is a fib. Either they employ qualified nurses or they don't. Sounds like it's a money issue or a convenient excuse
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