5 ms·

I used to be in the camp that supplements/vitamins are bs in general and unless you are deficient they won’t do a thing for you. However, I am now learning tha

I used to be in the camp that supplements/vitamins are bs in general and unless you are deficient they won’t do a thing for you. However, I am now learning that serum levels don’t often tell the whole truth. For example, many suffers of neurological disorders benefit greatly from using B1 even if their levels are not below “good” threshold. There is a physician who has done a lot of work on this. You can technically megadose b1 without any negative side effects. I am now seeing neurologists even recommending things like ALA to patients along with meds to stop symptoms. I welcome the open mindedness because the online groups of suffers often discover pretty interesting things. Years ago I talked to a chemist who cured his neuropathy with pirenzepine(drug used for ulcers with good safety profile), there is a startup now with a cream that uses pirenzepine as main ingredient to treat neuropathy. They are in stage 3 trials and have seen success.

polishdude20 3y ago
Do you have more info on this? What sort of neurological disorders can this help?
- codeTired 3y ago
  https://pubmed.ncbi.nlm.nih.gov/34685573/ https://pubmed.ncbi.nlm.nih.gov/34685573/ https://www.researchgate.net/profile/Derrick-Lonsdale https://www.researchgate.net/profile/Derrick-Lonsdale Some links to get you started. B1 deficiency can be caused by things like alcoholism. He also thinks we don’t get enough of b1 in our diet and the current scale is not sufficient. Symptoms can vary and can involve different nervous systems. Things like tingling, insomnia, fatigue. A lot of people talk about getting paradoxical reaction or refeeeding syndrome, meaning once they start taking b1 they get massive flare up of symptoms.
  - polishdude20 3y ago
    Can we get enough B1 by just diet alone? It seems a lot of foods either have in naturally or are fortified with it. Why the need for extra supplements?
    - tuatoru 3y ago
      There is an "undernutrition" hypothesis. Back in the day when we were all doing enough work (men, women, children) to need over twice our base-metabolic-rate number of calories per day, and eating whole foods, particularly red and white offal and leafy greens like collard and beet greens, steamed and roasted, we got enough of these mesonutrients and micronutrients. Twice your BMR is about 5000 Cal/day for an adult male. You need to do eight hours' physical work (shoveling, threshing, chopping, sawing, lifting, doing the laundry by hand, etc.) to burn off the extra. Now, the hypothesis says, we are deficient in many of these nutrients because we simply do not eat enough food, only 2500 Cal/day and a lot of that is from vegetable oils and low-nutrient animal fats. I have no investment in the hypothesis. Just reporting it. Edit: Vegemite and Marmite are high in vitamin B1. Possibly Bovril also. Spread it thinly on your toast and grill it.
      - andai 3y ago
        That is an interesting point. What we also know is that soils are being depleted of minerals, and farmers are selecting for crops with higher shelf life over higher nutrition. e.g. tomatoes have lost most flavor and nutrition over past few decades, some efforts are underway to hybridize them with older variants to get the best of both worlds.
        _a_a_a_ 3y ago
        > e.g. tomatoes have lost most flavor and nutrition over past few decades can't speak for nutrition (nor do you provide support for that claim) but as to flavour, you clearly haven't been round long! Old fashioned tomatoes were shite I can testify (at least those available in the UK).
        galangalalgol 3y ago
        My grandmother said the ones from the 20s in the us tasted way better, but they didn't keep any time at all, which was fine because they grew or raised all their own food.
- zamalek 3y ago
  One might be the MTHFR mutation. I forget the percentage, but a dizzying amount of westerners suffer from it - and it basically always gets misdiagnosed as depression. Supplementing with B12 helps, to a degree (you're providing more input to a broken machine), but you can supplement 5-MTHF (methylfolate) to get what the mutation inhibits your body from producing. https://www.medicalnewstoday.com/articles/326181 https://www.medicalnewstoday.com/articles/326181
  - Aurornis 3y ago
    > One might be the MTHFR mutation. I forget the percentage, but a dizzying amount of westerners suffer from it - and it basically always gets misdiagnosed as depression. MTHFR has been hijacked by alternative medicine and exaggerated into an "explains everything" diagnosis. The first red flag is that MTHFR pushers use it to explain ever vague disorder under the sun: Depression, anxiety, stomach issues, being tired, being unhappy, inflammation, etc. If you name it, chances are someone on an alternative health board will spring up and suggest MTHFR as a narrative, or other variations on the theme ("methylation", etc.) The second red flag is when they moved to diagnosis anyone with any mutation, including heterozygous people, as "having it". This isn't backed by evidence and was purely an attempt to stretch the diagnosis to cover more people, Internet MTHFR and "methylation" advice is generally terrible. Don't buy into it. You can actually test for high homocysteine levels in the blood, but most MTHFR proponents skip that step and just assume they "have it" and that B12 and Methylfolate will solve all of their problems (they don't). Alternative medicine has stepped in to provide endless articles, podcasts, and paid advice about supplements to add to deal with MTHFR, which of course never work because MTFHR isn't the root cause of all of their symptoms. It's terrible.
alecco 3y ago
Media financed by Big Pharma ads...
- codeTired 3y ago
  That is true, however, currently the vitamin/supplement industry is big too.
yjftsjthsd-h 3y ago
> You can technically megadose b1 without any negative side effects. "Technically"?
- codeTired 3y ago
  I’ve said technically because most physicians would probably not recommend doing such a thing. However there are many case studies of its benefits using even 1800mg/day even though the RDA is 1.1mg.
DoreenMichele 3y ago
B vitamins are water soluble, so they are generally relatively safe to take in large amounts because they don't accumulate in the body, so you can't poison yourself like you can with some things. Some water soluble vitamins are associated with kidney stones if taken in high doses, so "unlikely to poison yourself" does not mean zero side effects. I am seeing conflicting reports on B1 aka thiamine. If you don't have a compelling reason to try megadoses, I wouldn't do it. There's a lot we don't know. But for many things, it's completely reasonable to increase your consumption of B vitamins. There's a lot of space between do nothing and megadoses that is safer to play in than skipping straight to megadoses. /not a physician and don't play one on TV.
- et2o 3y ago
  This is a simplification. For example niacin (vitamin B3) excesses cause cholesterol to become more atherogenic. And supplementation in patients without deficiency is ultimately harmful.
- xiljin 3y ago
  Megadosing B6 can lead to B6 toxicity/syndrome as a result of its longer half life and ability to accumulate in the system. Between multivitamins, energy drinks, preworkouts and food, it's very easy to go well above the recommended amount. I'm currently recovering from B6 induced peripheral neuropathy (tingling in my feet) caused by 20-50mg/day over several years. https://en.wikipedia.org/wiki/Megavitamin-B6_syndrome https://en.wikipedia.org/wiki/Megavitamin-B6_syndrome
Aurornis 3y ago
> However, I am now learning that serum levels don’t often tell the whole truth. > For example, many suffers of neurological disorders benefit greatly from using B1 even if their levels are not below “good” threshold. There is a physician who has done a lot of work on this. You can technically megadose b1 without any negative side effects. Megadosing vitamins despite normal serum levels is a favorite of alternative medicine practitioners. The story has played out for nearly every vitamin you can name that doesn't have immediate toxicity upon overdose: Vitamin C, Vitamin D, various B vitamins, etc. It's never a good sign when there's "a physician who has done a lot of work on this" is the primary source, the claim is that all of medical knowledge to this point has missed it, the range of conditions/symptoms covered is so broad that nearly anyone could be considered impacted, and they preemptively try to claim that blood tests can't diagnose it or must be ignored. It's textbook alternative medicine pseudoscience and it's playing out for every vitamin, mineral, and supplement out there.

polishdude20 3y ago

Do you have more info on this? What sort of neurological disorders can this help?

codeTired 3y ago
https://pubmed.ncbi.nlm.nih.gov/34685573/ https://pubmed.ncbi.nlm.nih.gov/34685573/ https://www.researchgate.net/profile/Derrick-Lonsdale https://www.researchgate.net/profile/Derrick-Lonsdale Some links to get you started. B1 deficiency can be caused by things like alcoholism. He also thinks we don’t get enough of b1 in our diet and the current scale is not sufficient. Symptoms can vary and can involve different nervous systems. Things like tingling, insomnia, fatigue. A lot of people talk about getting paradoxical reaction or refeeeding syndrome, meaning once they start taking b1 they get massive flare up of symptoms.
- polishdude20 3y ago
  Can we get enough B1 by just diet alone? It seems a lot of foods either have in naturally or are fortified with it. Why the need for extra supplements?
  - tuatoru 3y ago
    There is an "undernutrition" hypothesis. Back in the day when we were all doing enough work (men, women, children) to need over twice our base-metabolic-rate number of calories per day, and eating whole foods, particularly red and white offal and leafy greens like collard and beet greens, steamed and roasted, we got enough of these mesonutrients and micronutrients. Twice your BMR is about 5000 Cal/day for an adult male. You need to do eight hours' physical work (shoveling, threshing, chopping, sawing, lifting, doing the laundry by hand, etc.) to burn off the extra. Now, the hypothesis says, we are deficient in many of these nutrients because we simply do not eat enough food, only 2500 Cal/day and a lot of that is from vegetable oils and low-nutrient animal fats. I have no investment in the hypothesis. Just reporting it. Edit: Vegemite and Marmite are high in vitamin B1. Possibly Bovril also. Spread it thinly on your toast and grill it.
    - andai 3y ago
      That is an interesting point. What we also know is that soils are being depleted of minerals, and farmers are selecting for crops with higher shelf life over higher nutrition. e.g. tomatoes have lost most flavor and nutrition over past few decades, some efforts are underway to hybridize them with older variants to get the best of both worlds.
      - _a_a_a_ 3y ago
        > e.g. tomatoes have lost most flavor and nutrition over past few decades can't speak for nutrition (nor do you provide support for that claim) but as to flavour, you clearly haven't been round long! Old fashioned tomatoes were shite I can testify (at least those available in the UK).
        galangalalgol 3y ago
        My grandmother said the ones from the 20s in the us tasted way better, but they didn't keep any time at all, which was fine because they grew or raised all their own food.
zamalek 3y ago
One might be the MTHFR mutation. I forget the percentage, but a dizzying amount of westerners suffer from it - and it basically always gets misdiagnosed as depression. Supplementing with B12 helps, to a degree (you're providing more input to a broken machine), but you can supplement 5-MTHF (methylfolate) to get what the mutation inhibits your body from producing. https://www.medicalnewstoday.com/articles/326181 https://www.medicalnewstoday.com/articles/326181
- Aurornis 3y ago
  > One might be the MTHFR mutation. I forget the percentage, but a dizzying amount of westerners suffer from it - and it basically always gets misdiagnosed as depression. MTHFR has been hijacked by alternative medicine and exaggerated into an "explains everything" diagnosis. The first red flag is that MTHFR pushers use it to explain ever vague disorder under the sun: Depression, anxiety, stomach issues, being tired, being unhappy, inflammation, etc. If you name it, chances are someone on an alternative health board will spring up and suggest MTHFR as a narrative, or other variations on the theme ("methylation", etc.) The second red flag is when they moved to diagnosis anyone with any mutation, including heterozygous people, as "having it". This isn't backed by evidence and was purely an attempt to stretch the diagnosis to cover more people, Internet MTHFR and "methylation" advice is generally terrible. Don't buy into it. You can actually test for high homocysteine levels in the blood, but most MTHFR proponents skip that step and just assume they "have it" and that B12 and Methylfolate will solve all of their problems (they don't). Alternative medicine has stepped in to provide endless articles, podcasts, and paid advice about supplements to add to deal with MTHFR, which of course never work because MTFHR isn't the root cause of all of their symptoms. It's terrible.

alecco 3y ago

Media financed by Big Pharma ads...

codeTired 3y ago
That is true, however, currently the vitamin/supplement industry is big too.

yjftsjthsd-h 3y ago

> You can technically megadose b1 without any negative side effects. "Technically"?

codeTired 3y ago
I’ve said technically because most physicians would probably not recommend doing such a thing. However there are many case studies of its benefits using even 1800mg/day even though the RDA is 1.1mg.

DoreenMichele 3y ago

B vitamins are water soluble, so they are generally relatively safe to take in large amounts because they don't accumulate in the body, so you can't poison yourself like you can with some things. Some water soluble vitamins are associated with kidney stones if taken in high doses, so "unlikely to poison yourself" does not mean zero side effects. I am seeing conflicting reports on B1 aka thiamine. If you don't have a compelling reason to try megadoses, I wouldn't do it. There's a lot we don't know. But for many things, it's completely reasonable to increase your consumption of B vitamins. There's a lot of space between do nothing and megadoses that is safer to play in than skipping straight to megadoses. /not a physician and don't play one on TV.

et2o 3y ago
This is a simplification. For example niacin (vitamin B3) excesses cause cholesterol to become more atherogenic. And supplementation in patients without deficiency is ultimately harmful.
xiljin 3y ago
Megadosing B6 can lead to B6 toxicity/syndrome as a result of its longer half life and ability to accumulate in the system. Between multivitamins, energy drinks, preworkouts and food, it's very easy to go well above the recommended amount. I'm currently recovering from B6 induced peripheral neuropathy (tingling in my feet) caused by 20-50mg/day over several years. https://en.wikipedia.org/wiki/Megavitamin-B6_syndrome https://en.wikipedia.org/wiki/Megavitamin-B6_syndrome

Aurornis 3y ago

> However, I am now learning that serum levels don’t often tell the whole truth. > For example, many suffers of neurological disorders benefit greatly from using B1 even if their levels are not below “good” threshold. There is a physician who has done a lot of work on this. You can technically megadose b1 without any negative side effects. Megadosing vitamins despite normal serum levels is a favorite of alternative medicine practitioners. The story has played out for nearly every vitamin you can name that doesn't have immediate toxicity upon overdose: Vitamin C, Vitamin D, various B vitamins, etc. It's never a good sign when there's "a physician who has done a lot of work on this" is the primary source, the claim is that all of medical knowledge to this point has missed it, the range of conditions/symptoms covered is so broad that nearly anyone could be considered impacted, and they preemptively try to claim that blood tests can't diagnose it or must be ignored. It's textbook alternative medicine pseudoscience and it's playing out for every vitamin, mineral, and supplement out there.