Hi all
Curious to know how many PA sufferers use sublingual liquid or even lozenges to replace SI or regular injection?
I know some say its absorbed the same way as oral and therefore ineffective, but keen to know how many find it works for them?
Do you notice it makes a difference, and you can absorb through the mucus membrane?
Thanks so much
I've been wondering about that too. I bought sublingual lozenges but they are Methylcobalimin and wonder if it's as effective as the hydroxocobalimin which is the injections I get. Just got some home from Germany for SI if/when necessary.
Believe me , I tried for a long time , using sub-lingual lozenges . I was using them all day long ,but they didn’t help . So in the end I self-injected , —-Immediate response . I am envious of the people who can benefit from them
I tried sublinguals and they did nothing at all for me.
I've tried. Whilst waiting fir fir maintenence b12 injection after loading doses. Tried fir 3 weeks after loading Didn't do a thing
Have tried since top. Spent so much money for the trials onbetween injections s
I tried tricking my brain hoping it would.
I akso took tablets as well as a spray throughout the day.
I ended uo begging for b12 injections to restart as I wad not able ti wait 3 months
Went back to every other day. After a big fight. .
I can use these, but the effects are short lived and often do nothing for my brainfog.
An injection helps with the memory loss. My mind is clear and sharp with repeated injections. Of hydro though. I tried methyl injections and there were inferior to hydro.
B12 liquid works very fast but only does something for the numbness in my fingers and feet and doesn't do anything for my brain. And it's often filled with sweeteners, though I can tolerate sorbitol and mannitol to a degree.
Everything I've read says you can't actually absorb b12 through the mucus membrane. Hence why we don't have b12 suppositories. I'd love for this to not be the case though.
Eating a pound of beef liver works for both, but it has to be spaced out across the day. Finding this was life changing and gave me some hope for the future. I only wish I discovered this earlier. And it's so much cheaper than all those supplements that I've spent thousands of dollars on with trial and error.
The desiccated liver pills that you can buy are far too expensive for the sheer amount of liver I need, so I don't buy those.
b12 Pills are of varying degrees of efficacy.
I get basically nothing from methylcobalamin pills. Not unless I swallow handfuls of them, and then I get side effects that make me sad.
Hydro pills just work well with nothing bad I can say about them.
Adenosyl gave me some good results when I used it, but I haven't found a cheap place to buy it. It's not feasible to keep using it because of the quantities and frequency I need to consume it in.
Cyano pills provide short lived benefits but fade away within hours. I still take them when I can find cheap ones though, because at least it's not liver. The fact that they do something for me means it must be good.
My body is super sensitive to sugars and artificial sweeteners, to the point where I'll have major numbness, brain fog, and extreme depression from eating the stuff. So I stay away from all those lozenges, which companies insist on adding tons of sugar to.
This also greatly limits my food choices. I had a bit of ketchup on my hotdog that I ate with sugar free bread yesterday, and felt immediate effects. I started making constant typos while typing, I couldn't remember basic things and would constantly forget what I was doing, and felt numbness spread all over.
So there's lots of b12 products I just don't mess with. No idea why companies will sell stuff to people who suffer from awful conditions but then ruin them with sugars and other irritants.
I'm currently experimenting with timed release b12 pills, with the idea being that I can swallow like 8 every hour and hopefully get something going here. It'll take some experimentation with the various brands to see which ones give the best results, and how frequently I can take them.
Interesting to hear your experimentations. Im guessing absorption isn't too much of a problem if you're benefitting from the beef liver? Or do you have PA?
I too find liver and red meat can give me a boost.
And I do gain from sublingual. So Im guessing my deficiency is diet related... since Im undiagnosed and may never find out for sure.
Maybe . I upped my meat snd liver and other b12 rich foods All it did was higher my cholesterol .
So I've gone back to eating ad I used to.
I have and need regular b12 injections knowing it's gone in
.
Can you please share the differences you felt having methyl injections versus hydroxo? I’ve never had a methyl injection and I’m curious about that form. Thanks!
The methyl injections would make me feel sad for a while. I later learned this was likely a side effect of my habit of taking methylfolate.
They helped with the brain fog but didn't do much else. They were also much more expensive. And I got an infection once.
I felt healing in my fingers and toes from switching to the hydroxo and ampules are cheaper and easier to use.
As far as I can work out any form of supplementation isn't a 100% guarantee - sublinguals can work well for people - as can nasal sprays - but they also don't work for other people.Some larger scale studies showed implied that about 2/3 of patients with absorption problems do find sublinguals effective. Studies that looked at effectiveness compared to absorption problem seem to come up with roughly the same figures. I find nasal spray and sublinguals effective but always have used doses several times higher than the 1000mcg daily that is used in studies.
I don't have a confirmed diagnosis of PA as in I haven't had a positive test for IFAB - mainly because I've never done the test but I do have virtually no stomach acidity so PA seems the most likely candidate ... and I've developed a second auto-immune disorder (Hashimotos) which would also suggest the problem is auto-immune.
Basically I think there is still a lot about how B12 works in the body and how different genetic variants affect how it is processed in different people and it definitely does seem to be a condition where there is an awful lot of variation from individual to individual both in terms of when levels are deficient and also responses to treatment.
Sometimes you just have to acknowledge that there is still a lot we don't know and it may not be possible to get a clear answer.
I actually self inject using hydroxo but use supplementation with methyl and adeno to cut down on the frequency. Personally I can't use methyl on its own because it does nothing for my mood and I find that adenosyl actually improves urge incontinence so wouldn't want to abandon that in the mix - on one level the type shouldn't make a difference but for me it does.
I have used sublingual methyl without injections and became the sickest I’ve ever been in my life. I’ve used liquid adenosyl with injections and noticed zero difference. My doctor agreed that I should abandon anything taken orally—a complete waste of money for me—did absolutely nothing for me. I even tried to vary the dosages to see whether I noticed a difference. Nope. I would have loved for this option to have worked for me and admit to being jealous of people who have this option.
I do seem to be able to absorb b12 from tablets but it doesn’t last long enough. I had some yesterday and it helped the pins and needles for a couple of hours but then it returned. No idea why.
I use 5000mcg methylcob nuggets, but leave to dissolve fully under my tongue, not 30 secs then swallow. Some days I have been taking 2 to 5 in a day tho!
I seem to get a tiny bit of "taking the edge off"/ keeping things from getting too much worse, I think. I have been taking them more & more last year and to now bc they stopped my jabs. So they just about kept me going!
Before that, I used them in-between my 8-weekly jabs to try & get me through to next jab. It seemed to be getting a bit longer each time before I felt the need to start on them (tho I prob left it later than ideal, or should have just asked for more frequent jabs).
Now I am using them loads, even tho have 3 jabs so far this year. I think the stopping of treatment has had a really detrimental impact, esp on nervous system.
There have been few times I have literally felt the relief happening a little after taking - the tingling weird tightness in lower legs, specifically, and a bit for other neuropathy. Also, the other day I was getting a migraine, didn't want to take Sumatriptan as I think it had worsened my muscle pain & spasms the week brgore. So, went and lay down quietly and popped 2 sublinguals, one after the other. I could feel something happening, and after about 1-2 hours it had lifted in as good a way as it does with the best result of Sumatriptan. Coincidence? Maybe, but I don't think so!
Anyone know where the poll is showing how satisfied people were with their injection frequency?
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