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What filler to choose for self-compouding B12

Messages
62
I was able to get my doctor to write a script for pure hydroxycobalimine powder (I have B12 issues). This needs to be taken sublingual and needs to be diluted quite a bit so that I can weigh it for dosage. I'm not sure what would be the best substance for filler or if it even really matters. The H-C needs to be stored in the refrigerator. I was thinking of using rice flour since it is very benign with a long storage life.
Compounding pharmacists use all types of things like lactose, ginger, even probiotics with LDN, but I want the longest shelf life possible. Thoughts?
 

Hip

Senior Member
Messages
17,824
Possibly you might better off with a filler powder which dissolves in water, rather than something like rice powder which does not dissolve, and so will remain in the mouth.

You don't necessarily have to mix you B12 powder with a filler though: I used to use B12 powder, and would measure out 10 mg doses using a digital scales, a model with an accuracy of 1 mg. These cost about $10. Then I would apply that 10 mg of B12 powder to my oral mucous membranes (insides of cheeks, gums and under the tongue).


Not much B12 is absorbed sublingually though, so if you don't experience benefits, then B12 injections or B12 transdermal oils (which provide similar systemic doses as injections) can be considered. B12 oils are both cheap and much more convenient than injections.
 
Messages
62
Possibly you might better off with a filler powder which dissolves in water, rather than something like rice powder which does not dissolve, and so will remain in the mouth.

You don't necessarily have to mix you B12 powder with a filler though: I used to use B12 powder, and would measure out 10 mg doses using a digital scales, a model with an accuracy of 1 mg. These cost about $10. Then I would apply that 10 mg of B12 powder to my oral mucous membranes (insides of cheeks, gums and under the tongue).


Not much B12 is absorbed sublingually though, so if you don't experience benefits, then B12 injections or B12 transdermal oils (which provide similar systemic doses as injections) can be considered. B12 oils are both cheap and much more convenient than injections.

I'd rather not use water because the one gram of powder cost $250 and should last me a year at a dose of of 3mg/day (maybe I should be doing 10mg, anyhoo). And if I mix with water, it doubt it would last year. I'm sure it won't. I compound something else in distilled water, and it molds after several weeks if I don't go through it. I haven't opened the container with the 1 gram of hydroxyC powder, but I'm guessing there is less than 1/4 teaspoon in there, and that's 1,000 - 1 mg doses, or 100 - 10mg doses - which would be $250 every three months. Too expensive. Maybe I'll try 5mg.

Where did you source your B12 and is it hydroxyC or another form? I had my pharmacy order it, so it is pharma grade from PCCA.

I guess I was thinking that the rice won't dissolve, but if I swish for a minute or so I can then spit it out. LOL

I'm wondering if I'm doing my math wrong? I have a 1 gram scale that goes to 0.000 grams, but all the comments state you have to have a very expensive to scale to be accurate at milligrams. I was trying to calculate tonight and 1,000 mg is 0.001 on a gram scale (am I off by a decimal point?). So, mine won't even go down to 100mg, let alone 10mg.(Mine was $15 or $20 online) I thought I tried to find a milligram scale, but they were extremely expensive. I'll look again.

I have a methylmalonic acid problem (and pernicius anemia) and need plenty of B12, spent a ton of time researching the last 4-5 months. It seems the older information all stated that B12 needed to be injected, but there are quite a few newer studies stating that sublingual is just as good. Indeed, many people with MMA in other countries cannot get injectable B12 and are doing well - even those with life threatening MMA. I was on hydroxC injections, but I'm trying to get pure ingredients w/o fillers, preservatives, etc as much as I can. And my doc doesn't see the need for more than 1mg/day injectable since it controls my mma, (but not my symptoms, ughh).

I haven't heard of transdermal B12. That is very intriguing. I've been making some of my own transdermals and adding DMSO to some of them making them even more effective. I wasn't aware that B12 was small enough to get in transdermally. I'm surprised that wasn't mentioned in the MMA groups. This would be awesome for children with MMA who are on injectable!

My other option is to purchase a 1 or 10 milligram weight and test my scale. Maybe I could just take it to a jewelry store and they would have something that weighs one or 10 milligrams.

Nonetheless, I need to dilute that tiny bit of 1 gram of hydroxycobalamine. Yippee. Maybe lactose and just use half the gram at a time. I'm worried the lactose would spoil, but it hasn't in my other compounded med, but it might contain a preservative. IDK.

Thanks for your thoughts and help on this @Hip
 

Hip

Senior Member
Messages
17,824
I'd rather not use water

I was not suggesting you dissolve your B12 powder in water, but rather mix it with another filler powder which is water soluble, so that when you apply the powder mixture to your oral mucous membranes, the filler powder dissolves in your saliva along with the B12.

I don't think it's that important though, it just might feel nicer on the mouth when you administer the B12.

In the past I've used inositol powder (a B vitamin) as a filler, as it dissolves in water, and has a nice slightly sweet taste.



Where did you source your B12 and is it hydroxyC or another form?

I got mine from another forum member many years ago who bought a large amount of B12 powder.



I'm wondering if I'm doing my math wrong? I have a 1 gram scale that goes to 0.000 grams, but all the comments state you have to have a very expensive to scale to be accurate at milligrams.

You can buy a scale accurate to 1 mg (which is the same as 0.001 grams) for about $10. See here. If it says the scale is accurate to 0.001 grams, then that means it can measure down to 1 mg.

So if you are measuring say 10 mg of B12 powder, the scale will be able to do that.

On the scale, 10 mg would register as 0.01 grams.



I was trying to calculate tonight and 1,000 mg is 0.001 on a gram scale (am I off by a decimal point?).

1000 mg will be 1 gram.



I haven't heard of transdermal B12. That is very intriguing. I've been making some of my own transdermals and adding DMSO to some of them making them even more effective.

These transdermal B12 oils developed by Dr Greg Russell-Jones in Australia use a special skin penetration enhancer known as a water-in-oil microemulsion. It's not something you can easily make yourself.

In one shot of Greg's B12 oil, you get around 2 mg of B12, and Greg reckons most of that gets into the bloodstream. So that is a large dose of B12, larger than most B12 injections which typically provide around 0.5 to 1 mg.

DMSO does not help with B12 skin penetration, I've seen studies which demonstrated that DMSO is no better than water at getting B12 across the skin.
 
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Hip

Senior Member
Messages
17,824


I don't think there is any evidence to suggest that supplementing with high doses of B12 is linked to early death. The paper says the high B12 may just be a result of liver damage or chronic kidney disease (CKD), which means that elevated B12 may just be an indicator of an existing health issue:
To date, the underlying mechanism of the association of plasma concentration of vitamin B12 with mortality is incompletely understood, to our knowledge.

The proposed mechanisms to explain the association are that high vitamin B12 plasma concentrations may represent a response to increased release of vitamin B12 from liver storage, decreased clearance, upregulation of haptocorrin and transcobalamin synthesis, or diminished affinity of vitamin B12 for transporter proteins.1,3 Those situations are often present as a consequence of liver damage or CKD

The early death may be due to the existing health issue, rather than due to high B12.
 
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Messages
62
@Hip
Inositil is a great idea! Will look for a yeast free one.
After beginning to read the B12 oil thread last night I'm bummed I invested so much $ in HydroxC. I guess, since I read that HydroxC is the "Natural form found in our bodies" that it would be the best choice - whether or not you have any MTHFR variants, but alas, I think I'm wrong. Maybe this explains why the HydroxC injections (even at 3mg) gave me an hour of relief, but felt like trying to fill the ocean with a thimble.

The oil sounds impressive and definitely worth a try (I'm pretty sure I take all the co-factors). I've been dealing with such a crushing headache for over year. It began with CCI (from too may oxalates) which lead to IIC, but now it has settled in the temples, frontal and with vision changes. Doctors suspected temporal arteritis and on many days I respond well to steroids, but not always. I'm finding that I'm reacting to fillers will increase the headache and to food additives - so each day I eliminate something else, but often try something else I feel is safe. But also with my MMA (which got out of control this last winter), I think it caused vascular damage - which I'm working on improving with MSM and other naturals. Although my mma levels are now "normal" on B12, my pernicious anemia is not improving. I'm wondering how much of this headache/vision problem is lingering low B12?

Interesting on the B12 with DMSO. I saw that in the thread last night, will continue reading it today. Absolutely fascinating and will pass along to MMA groups. Several types of MMA don't respond to B12, but it co-factors could be the missing component.

Thanks so much!!!
 
Messages
62
B12 won’t cure MECFS. High levels are associated with early death.

https://www.nytimes.com/2020/02/11/well/live/excess-vitamin-b12-may-be-deadly.html
Thanks Jaybee, but I'm not looking for a cure with B12. I have a genetic issue with B12 not being processed properly and causing sky-high methylmalonic acid levels, in addition to pernicius anemia.

Also, I'd add that most of these "studies" bought and paid for by big pharma are purposefully designed to either scare people away from supplements or at the very least to discourage their use. I personally know several university scientists who are disgusted (can't wait to retire) from the corruption in the labs. They are told - "You will get ____ result, design the study accordingly."

Two examples - Headline: "Vitamin D doesn't help depression" Then look at the study. They took about 30 men, measured their vitamin D level (all deficient), gave them a super lose of D (like 500 IU/day) for two months and asked them if they were less depressed. IIRC - there was only one person at the end of the study who had even raised his serum level above 25. OMG - they needed to give whatever amount it took to get everyone at LEAST above 50, if not 75.

And one on Parkinsons with molecular hydrogen water. Headline - "H2 water helps no more than placebo with Parkinsons disease" However, they were also giving the "placebo" group H2 water!!! Both groups improved, because both groups were getting H2 water. But they got their headline.
 
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ljimbo423

Senior Member
Messages
4,705
Location
United States, New Hampshire
I was thinking of using rice flour since it is very benign with a long storage life.
Compounding pharmacists use all types of things like lactose, ginger, even probiotics with LDN, but I want the longest shelf life possible. Thoughts?

I use methyfolate sublingually but I don't buy sublingual tablets. I buy regular capsules because they are so much cheaper and put the powder under my tongue.

I've used capsules with glycine as a filler but it dissolves too fast and the methyfolate doesn't stay in contact with the mucosa under my tongue long enough to get good absorption. Maybe 2-3 minutes.

I've also used capsules with rice flour as a filler. This works really well. It takes 10-15 minutes for the methylfolate to be absorbed and rice flour to wash away. I think I get the best sublingual absorption from the methylfolate with the rice flour filler.
 
Messages
62
I use methyfolate sublingually but I don't buy sublingual tablets. I buy regular capsules because they are so much cheaper and put the powder under my tongue.

I've used capsules with glycine as a filler but it dissolves too fast and the methyfolate doesn't stay in contact with the mucosa under my tongue long enough to get good absorption. Maybe 2-3 minutes.

I've also used capsules with rice flour as a filler. This works really well. It takes 10-15 minutes for the methylfolate to be absorbed and rice flour to wash away. I think I get the best sublingual absorption from the methylfolate with the rice flour filler.
Wow, Jim, that is very interesting information. I've tried to research sublingual absorption time and never come up with much.

You'd think glycine (which also detoxifies RoundUp, would be sufficient at 2-3 minutes). Maybe it has to do with glyphosate clearing action?

My bottle of current liquid B12 which is methyl and adeno - says hold 20 seconds.

10-15 minutes is a long time to hold something in your mouth, but I think I'll try the rice flour just because it seems inert. Do you spit out any remaining?

Sadly, I think I wasted my money on they HydroxC and should have gone with methyl. I can add a methyl donor for now (I guess). I'll also purchase some of the oil.
 

Hip

Senior Member
Messages
17,824
After beginning to read the B12 oil thread last night I'm bummed I invested so much $ in HydroxC. I guess, since I read that HydroxC is the "Natural form found in our bodies" that it would be the best choice - whether or not you have any MTHFR variants, but alas, I think I'm wrong.

Generally there's a tendency for ME/CFS patients to respond better to methylcobalamin than hydroxocobalamin. Prof Gottfries B12 study showed this. But it is an individual thing, so hard to predict in advance what's best. Hydroxocobalamin is the only form of B12 which is a nitric oxide scavenger, which possibly might have benefits for some ME/CFS patients.

No reason why you should not use both B12 oils and your hydroxocobalamin. You could take say one shot of the B12 oil say once a week, which would be pretty economical (this is what I do now with my B12 oils). And then take the sublingual hydroxocobalamin daily. But maybe the daily sublingual hydroxocobalamin on its own will be sufficient for you.



I've been dealing with such a crushing headache for over year. It began with CCI (from too may oxalates) which lead to IIC, but now it has settled in the temples, frontal and with vision changes. Doctors suspected temporal arteritis and on many days I respond well to steroids, but not always.

If anti-inflammatory steroids help, have you tried any supplements which reduce brain inflammation, like say 1000 mg of turmeric? I also suspect the supplement N-acetyl glucosamine is a good brain inflammation reducer, and use this all the time myself. Prebiotics and probiotics can also reduce brain inflammation, by reducing gut inflammation (gut inflammation can ramp up brain inflammation via a vagus nerve link).

I found the anti-inflammatory drug trimetazidine really effective for eliminating my headaches: see this thread. Every time I feel a headache coming on, I take a single dose of trimetazidine, and it dissipates it before it can manifest as a full headache.
 

Hip

Senior Member
Messages
17,824
I've also used capsules with rice flour as a filler. This works really well. It takes 10-15 minutes for the methylfolate to be absorbed and rice flour to wash away. I think I get the best sublingual absorption from the methylfolate with the rice flour filler.

That's interesting: so you are suggesting that a filler substance like rice flour which does not dissolve in saliva might be better, because it keeps the B12 in contact with your mucous membranes for longer?
 

Wishful

Senior Member
Messages
5,684
Location
Alberta
My other option is to purchase a 1 or 10 milligram weight and test my scale. Maybe I could just take it to a jewelry store and they would have something that weighs one or 10 milligrams.

The expensive scales are good when you need to measure an unknown mass. If you just need to measure out a certain mass, you could probably get by with even a homemade balance and a known weight. I expect that a jeweler or pharmacist would be willing to verify a tiny weight, or you could just snip a length of thin wire of known density or some such thing. Actually, since you don't know your optimum dose, it doesn't have to be precise, it just needs to be consistent.

When I needed LDN, I asked for it as a powder, so I could use a tiny scoop and work out my optimum dosage. He refused, since settling could result in inconsistent dosage. I didn't think it would be an issue, but I thought I'd mention it.
 
Messages
62
The expensive scales are good when you need to measure an unknown mass. If you just need to measure out a certain mass, you could probably get by with even a homemade balance and a known weight. I expect that a jeweler or pharmacist would be willing to verify a tiny weight, or you could just snip a length of thin wire of known density or some such thing. Actually, since you don't know your optimum dose, it doesn't have to be precise, it just needs to be consistent.

When I needed LDN, I asked for it as a powder, so I could use a tiny scoop and work out my optimum dosage. He refused, since settling could result in inconsistent dosage. I didn't think it would be an issue, but I thought I'd mention it.
I've been experimenting with LDN for almost a year. I've used compounded with microcrystalline cellulose (would've sent a "normal" to the ER). Then lactose. Now I mainly purchase 50 mg tablets and dissolve in 100 mls of distilled water (which allows the fillers to settle to the bottom) and it's cheap and 2 mls of water = 1mg LDN. But LDN is a much different thread ;-). There is an amazing FB group. Which they'd get off FB and go on a private forum.

On the scales, if you read the negative reviews, these seem to be high inconsistent from day to day. But I think, like you said, verify with a tiny weight and match fairly close to an appropriate scoop and good to go. It's not that big of a deal with B12 ;-)
 

ljimbo423

Senior Member
Messages
4,705
Location
United States, New Hampshire
10-15 minutes is a long time to hold something in your mouth, but I think I'll try the rice flour just because it seems inert. Do you spit out any remaining?

It seems pretty easy for me to hold just a small amount of methylfolate and rice powder under my tongue for 10-15 minutes.

I usually don't have anything left to spit out. I just use my saliva to break it up, absorb as much methylfolate as I can and swallow any tiny pieces of rice flour left.
 

ljimbo423

Senior Member
Messages
4,705
Location
United States, New Hampshire
That's interesting: so you are suggesting that a filler substance like rice flour which does not dissolve in saliva might be better, because it keeps the B12 in contact with your mucous membranes for longer?

That's my thinking. I could be wrong but I'm thinking the longer B-12 etc. is in contact with the sublingual mucosa under the tongue, the more of that substance will be absorbed.

I was able to cut my dose of methylfolate with rice flour as a filler, about in half, by taking it sublingaully, instead of swallowing the capsules whole. I cut my dose from 12-13 mg a day to 6-6.5 mg a day, without loosing any of the effect.
 
Messages
62
No reason why you should not use both B12 oils and your hydroxocobalamin. You could take say one shot of the B12 oil say once a week, which would be pretty economical (this is what I do now with my B12 oils). And then take the sublingual hydroxocobalamin daily. But maybe the daily sublingual hydroxocobalamin on its own will be sufficient for you.
Good idea!


If anti-inflammatory steroids help, have you tried any supplements which reduce brain inflammation, like say 1000 mg of turmeric? I also suspect the supplement N-acetyl glucosamine is a good brain inflammation reducer, and use this all the time myself. Prebiotics and probiotics can also reduce brain inflammation, by reducing gut inflammation (gut inflammation can ramp up brain inflammation via a vagus nerve link).
Haven't tried turmeric lately because of oxalate, but curcumin is low ox. Working on other anti-inflammation products, get tired of throwing $$$ at it, also because I'm not positive it's completely inflammation. I think some of it is just the vascular system not working right, not getting the blood or oxygen flow. I think that is why the H2 water is helping. Exercise sometimes helps, but sometimes it aggrivates. Go through spurts on the pre/pro biotics. Fish oil helps a bit. So much trial and error right now.

I found the anti-inflammatory drug trimetazidine really effective for eliminating my headaches: see this thread. Every time I feel a headache coming on, I take a single dose of trimetazidine, and it dissipates it before it can manifest as a full headache.
Haven't tried that drug or even heard of it, will look it up and the thread. So many meds and supps with mcc in them now, so that could be an issue. I use the term headache losely, because it is pain in the head. It can last hours, and then instantly disappear for a minute or two. The other day, on the right steroid and a little NAD+ it was gone for hours - great day. But yesterday, horrible again. My vision goes from perfect to "I can't even drive" and changes all day long. 3 eye doctors.
I am getting some improvement. It's just slowed, and stalled lately. I was off the charts in Dec/Jan - really thought with all my CCI/IIH/Vascular symptoms I wouldn't make it. Now, many symptoms are relieved, but headpain/visual/vascular remain. I'm not in bed all day, but it's so hard to concentrate (or be nice).