Sublingual and injections
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My daughter has been diagnosed B12 deficiency her level was 120 and has just finished the loading dose Hydroxocobalamin injections. GP recommending 3 monthly soon as loading dose finished. I have stated to doctor that i am unhappy with this as it seems a huge jump when she has been like this for years, therefore surely it will take more than two weeks to help repair damage and build levels back up.I am wondering is it ok to take sublingual Methylcobalamin 1000mcg in between injections as i really do not want her sliding back into the dark place she was in. Also doing preventable damage to her. She has really shown a great improvement since her injections and has even started to get her social life back.
On a more positive note, i am mental health nurse and since daughter diagnosed 6 months ago and through the kind info on here and further research i have been preaching to my colleagues/doctors about lack of knowledge about B12 and finally they have started checking patients being admitted onto our ward and are taking more interest in the symptoms that individuals experience and link to B 12 deficiency. Already 3 patients diagnosed B12 deficient and have started treatment 😃
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chris27080 Lettie3871
Posted
I agree that an oil based dose may infuse over a longer period. As may a sublingual reportedly if held in the mouth for a longer time.
However if as suggested by some ad b12 has only a 15 min half life or life then I wonder for the few who need a higher dose in that form what is sufficient. Certainly an oil based infusion may cover a longer time but not 24 hours. I think on those issues speculation actually outruns research data, or at least that which I and say Stabler as at a year ago have been able to uncover.
Simply the question probably does not arise for most people who do ok on hydroxycobalamin. For those with ME and a variety of genetic conditions who require .. . very large doses of multiple things in divided doses separated by type it is of concern, although the point can arise of to what extent is this a sledgehammer approach. Some of the more influential have major multiple problems and have achieved good results but they say titrate ie try and see.
My impression is that a lot is unknown about the intrica of the wider area; and so I prefer research rather than opinion However for the most the exotica are irrelevant and confusing.
chris27080 Lettie3871
Posted
It sounds like your GP is following a conventional line. Some significant proportion of people cannot utilise cyanocobalamin no matter what form it comes in. It is still used by some as it is cheaper and stable. That is the probable reason she did not respond to the oral dose.
If she can't absorb B12 normally she can still absorb a small amount absorbed by diffusion. Because the stuff is cheap it is cheaper and more convenient to take a daily dose rather than frequent injections (though some self inject) even if little gets through.
Because she responded well to a series of presumably hydroxycobalamin we know she can utilise that.
What we don't know is how long it will be before she needs a maintenance dose. The gps have guidelines depending on whether PA is present and maybe neuralgia and that normally is 3 months.
But people vary in various ways. The blood test might show a level in the normal range however that is not conclusive for various reasons not all perhaps understood but including that the problem may lie elsewhere in forming the active forms or in other things that are deficient. I don't want to go there because it may not be necessary hopefully and it gets more involved. However I did a very brief outline of key points in another post here in the last month.
Assuming things are straightforward the good thing is that it tends to stick out when the level falls too low and better it tends to respond within a few hours to a dose. Without the injection that will probably be daily though there are higher doses available that might last some days.
You then know I need this amount at this interval. You might persuade the gp or not. He/she should know thsi and see it often but may stick to the guidelines or may say ok take some oral or oil or whatever. That puts you in control.
You have already ordered some dual type oil. You don't know at this stage what forms you need. You do know you respond to hydroxy. Likely you will to other forms.
I would wait until you feel you need more (actually your daughter). I would then see the GP and get a blood test for information only primarily. He may act or not. Then you can try to establish your own regime. That might be in a month or three who knows?
He will also monitor the iron.
I am in favour of trying the simplest first, preferably in cooperation with a helpful dr, but retaining control.
I hope this clears the confusion.