Vitamin B1 in critically ill patients: needs and challenges

[mostlylurking]

I watched it. It talks about prepping with some supps including low dose thiamine HCl before getting into using TTFD.

I think I have already satisfied all those prep, except for taking glutathione. But I'm not deficient on glutathione as I having been taking a lot of gelatin from some time already.

But why TTFD deplete NADPH? It must be also helping produce a lot of NADPH also, but causing a lot of NADPH to be used but where is the NADPH sink?

I reacted badly to TTFD (a synthetic) when I tried it. I stuck with the HCL thiamine. The argument is that TTFD is the only thiamine that crosses the blood/brain barrier. But my brain symptoms disappeared from using the HCL thiamine. I do take a high dose of it (2 grams/day). It is my understanding the thiamine HCL requires larger doses to work as effectively as a smaller dose of TTFD, but the HCL is cheap and safe; I just put a gram of the powder in a glass of water and drink it down. I started with 100mg twice a day and worked my way up to the 2 grams over several weeks. I tried to take 2.5 grams but I got shooting pins and needled pains in my thighs so I backed down to the 2 grams.

Dr. Costantini, a neurologist in Italy, used thiamine to help many people with Parkinson's disease with great success. From the videos, it appears that he was curing them. He said no, it is not a "cure", because they have to continue taking the high dose thiamine or their Parkinson's symptoms return. Dr. Costantini said that he only used the thiamine HCL because it is the only thiamine that gets into the neurons. Here is his website: HDT Therapy.

Taking some magnesium and some potassium (I use orange juice) is helpful.

 

[cjm]

I reacted badly to TTFD (a synthetic) when I tried it. I stuck with the HCL thiamine. The argument is that TTFD is the only thiamine that crosses the blood/brain barrier. But my brain symptoms disappeared from using the HCL thiamine. I do take a high dose of it (2 grams/day). It is my understanding the thiamine HCL requires larger doses to work as effectively as a smaller dose of TTFD, but the HCL is cheap and safe; I just put a gram of the powder in a glass of water and drink it down. I started with 100mg twice a day and worked my way up to the 2 grams over several weeks. I tried to take 2.5 grams but I got shooting pins and needled pains in my thighs so I backed down to the 2 grams.

Dr. Costantini, a neurologist in Italy, used thiamine to help many people with Parkinson's disease with great success. From the videos, it appears that he was curing them. He said no, it is not a "cure", because they have to continue taking the high dose thiamine or their Parkinson's symptoms return. Dr. Costantini said that he only used the thiamine HCL because it is the only thiamine that gets into the neurons. Here is his website: HDT Therapy.

Taking some magnesium and some potassium (I use orange juice) is helpful.

+1 to the poor reaction to TTFD. The Ecological Formulas brand has microcrystalline cellulose, magnesium stearate, and silicon dioxide added, excipients alone are enough to cause the reaction, in my lengthy experience with questionable supplements. I also currently take a high dose of Hcl (1.5g/d). The reason for the high dose is to saturate the transporter (check out the daily 3-8 grams used in the study):

High-dose Thiamine May Treat Fatigue From Chron's And IBD

Ray said it in one of his interviews that if Chron's and Irritable Bowel Disease / Syndrome (IBD / IBS) are not caused by a pathogen similar to the one implicated in ulcer, then it's most likely a symptom of hypothyroidism, specifically due to issues with carbohydrate metabolism. And if that process (carbs to ATP) is not working properly, then thiamine is likely a factor. Note that the people in the study were NOT deficient in thiamine, so a blood test would not have caught it. It seems that they have a problem/defect with the thiamine transport to the cells, so normal levels of plasma thiamine would correspond to deficiency inside the cell. Thus, high-doses of thiamine would bring the intracellular thiamine levels up to what they need to be for normal ATP synthesis:
Thiamine and fatigue in inflammatory bowel diseases: an open-label pilot study. - PubMed - NCBI
"...The diseases treated with high doses of vitamin B1, and for long periods of time, are Alzheimer's disease and thiamine responsive megaloblastic anemia (TRMA). The doses employed in TRMA are similar to ours and have been administered for several years. In Alzheimer's disease, doses equal to 3 to 8 grams per day were administered for one year without observing any collateral effect.6,7 A study presented by Magee et al.8 demonstrated that thiamine-rich foods decrease disease activity in patients affected by UC. "

Here is reference [8] mention in the study above.
Associations between diet and disease activity in ulcerative colitis patients using a novel method of data analysis. - PubMed - NCBI


Couple of things in this study that caught my eye:

1. Obvious: Chronic diseases so common in the Western world are tied to an energetic/metabolic problem, correctable by supplements/diet.

2. Effective thiamine dosage (similar to the other studies I posted) is at least 600mg-1500mg per day.

3. Plasma thiamine levels are NOT a good indicator of cellular levels. This always reminds me of Ray talking about thyroid and estrogen tests being unreliable b/c they do not measure the levels of these hormones in the cells, and that in menopause tissue levels of estrogen are very high while plasma levels are normal/low.

 

[mostlylurking]

+1 to the poor reaction to TTFD. The Ecological Formulas brand has microcrystalline cellulose, magnesium stearate, and silicon dioxide added, excipients alone are enough to cause the reaction, in my lengthy experience with questionable supplements. I also currently take a high dose of Hcl (1.5g/d). The reason for the high dose is to saturate the transporter (check out the daily 3-8 grams used in the study):

High-dose Thiamine May Treat Fatigue From Chron's And IBD

I was careful to take one that had no excipients. It was straight TTFD. The headache from one pill lasted 36 hours.

I found Dr. Costantini's site extremely helpful. He only used thiamine HCL. It is working for me. link: HIGH-D0SE THIAMINE (HDT) THERAPY for Parkinson's Disease

from About Dr. Costantini:
Written [2016-2018?] by a HealthUnlocked member (user name ‘cincinnato”). [HealthUnlocked | The social network for health] and originally posted to the HealthUnlocked group “The Parkinson’s Movement,” a forum for discussing and sharing information and support on all aspects of Parkinson’s Disease [Cure Parkinson's | HealthUnlocked].


[Note: Privacy policy at HealthUnlocked strongly recommends that members choose user names to protect personal health information they may reveal in the course of using the HealthUnlocked site and services.] For this reason, no author’s name is given.


[Editor’s note: The piece below, originally written in Italian, was auto-translated to English via DeepL.com/Translator before the noted edits were added.]


Admin Update (8 Sept 2019): Due to personal health issues, Dr. Costantini ceased to practice medicine in early 2019. He is no longer available for consultation, either in person or via email, and deeply regrets this unfortunately necessary change.


He is a neurologist in Viterbo, Italy with his own practice and 2,700 + patients that he is treating with thiamine as an adjunctive treatment to their standard PD meds. He has been treating his patients with PD for over 5 years now during which time no apparent disease progression has been observed while symptom improvement has been significant for most patients.


As far as thiamine, he has been working with it since 2010/2011.


He said that even if they couldn’t come to his clinic, he could still try to treat them via email. He said he needed a copy of their medical records and short videos of a Pull Test, of them talking, writing and a short video of them walking.


Note: upload your videos to YouTube [edit: use Privacy setting UNLISTED] and then share the link with Dr. Costantini via email.


He said the videos were not for him, but rather for the patient to watch every now and again so they could have a basis for comparison as time passed.

• Dr. Costantini published his first study on Parkinson’s [edit: and thiamine] in 2013.
• He later published two more with other co-authors such as Dr Roberto Fancellu working at the S Martino Hospital in Genoa (recently he was [edit: nevertheless] denied funding for a double-blind study).
• He has also published on other serious diseases.
• His studies have a total of 150 citations, and by great authors.
• No neurologist who is involved in the compilation of guidelines for the treatment of this disease, no renowned neurologist, all with a great culture on the subject, have bothered to deny [edit: Dr. Costantini’s results], with data in hand. It [edit: High-Dose Thiamine therapy] is simply ignored.

Even in Italy, no one takes care [edit: notice] of it except for a few.


I, for what I could touch with my hand, no one replies against him because he already knows that he would fight for a cause lost at the beginning.
[Idiomatic translation: With my hand on my heart, I believe nobody speaks to refute Dr. Costantini’s assertions because such a speaker already knows that such an attempt would be a lost cause.]


In Italy, Dr Costantini treats about 4000 patients. Everyone, without distinction, asks him this question, in the face of the wonderful prospects that the treatment opens up: how come all the other neurologists, in the face of these results that you expose, say nothing?


He invariably replies that he does not know.

• The disturbance of the movement [edit: idiomatic translation = effect on motor symptoms] has a great value for the researcher; it is evident to all and can be recorded with a video camera.
• Anyone can enter the site “ultimaedizione.eu” posted in 2015 (and which also has an English version), and the site “highdosethiamine.org” https://highdosethiamine.org/therapy-2/ and see the results of the care [edit: treatment, therapy] in the short and long term.

• If someone wants to search the internet for similar results they will not find them, they have never been published.
• In the literature it has never been written that a cure [edit: idiomatic translation = treatment] could bring Parkinson’s disease to zero symptoms.
• Official science still says that non-motor symptoms are incurable [edit: idiomatic translation = untreatable], while Dr. Costantini says that they are the most sensitive to treatment.

Let’s hope for the future.


Meanwhile, in Italy alone, about 20,000 Parkinsonians have died since 2013, after a long period of disability and suffering. Almost everyone would have escaped death and could have lived in a physical and psychological condition previously unthinkable.”


To see videos at “ultimaedizione.eu” use these links [please note the video links are imbedded in an article, and claims of “cure” are the article author’s claims, not Dr. Costantini’s]:

• https://www.ultimaedizione.eu/2015/04/08/astonishing-parkinson-halted-by-vitamin-b1/40177/
• Videos Parkinson's Patients before and after treatment - Ultima Edizione.Eu

In the videos, you can see that his patients are at varying degrees of disease progression and some are in the “severe range” and still show dramatic improvement by just adding thiamine/thiamin/vitamin B-1 to their standard PD prescriptions/meds.

---

I found it interesting that many Parkinson's patients experienced gut problems (IBS, SIBO, Chron's, etc) before getting full blown Parkinson's disease. I have a long history of gut problems including leaky gut, almost universal food allergies, and strong gluten sensitivity. I never got a biopsy so the official Crohn's diagnosis was never pronounced. I'm now 71. I was noticing autonomic nervous system issues. I also have a history of heavy metal poisoning, which I've learned interferes with the use of thiamine. The high dose thiamine HCL is helping me a lot!

 

[cjm]

I was careful to take one that had no excipients. It was straight TTFD. The headache from one pill lasted 36 hours.

I'll need to look closer at your links. If the TTFD was clean, what do you think caused the headache?

Edit: "Dr. Costantini said that he only used the thiamine HCL because it is the only thiamine that gets into the neurons." -> looking for his mention of that

 

[mostlylurking]

I'll need to look closer at your links. If the TTFD was clean, what do you think caused the headache?

This video explained it I think. "Poor methylation" low glutathione made worse by TTFD. Thiamine HCL is suggested to improve status before using TTFD. I'm sure there's a lot more information in the video that I've forgotten. Don't trust my interpretation; I may have misunderstood.

Edit: "Dr. Costantini said that he only used the thiamine HCL because it is the only thiamine that gets into the neurons." -> looking for his mention of that

I believe I read that on his site, under Therapy or under FAQs.

 

[mostlylurking]

Edit: "Dr. Costantini said that he only used the thiamine HCL because it is the only thiamine that gets into the neurons." -> looking for his mention of that

I found this:
"41. Can I use benfothiamine instead of thiamine hcl and still get the same results as thiamine hcl?

We don’t use benfothiamine because previous trials report it does not enter in the neural cells, that’s why it is not used for the diseases which don’t affect the Central Nervous System (Bettendorff L.). We administer thiamine cloridrate intramuscularly or oral thiamine hcl effectively."

 

[cjm]

I found this:
"41. Can I use benfothiamine instead of thiamine hcl and still get the same results as thiamine hcl?

We don’t use benfothiamine because previous trials report it does not enter in the neural cells, that’s why it is not used for the diseases which don’t affect the Central Nervous System (Bettendorff L.). We administer thiamine cloridrate intramuscularly or oral thiamine hcl effectively."

Good find!! Note to self: find Bettendorff, find the research.

 

[mostlylurking]

I found this:
"41. Can I use benfothiamine instead of thiamine hcl and still get the same results as thiamine hcl?

We don’t use benfothiamine because previous trials report it does not enter in the neural cells, that’s why it is not used for the diseases which don’t affect the Central Nervous System (Bettendorff L.). We administer thiamine cloridrate intramuscularly or oral thiamine hcl effectively."

There's a double negative in the quote, I think it should read: ...it (benfothiamine) is not used for diseases which affect the Central Nervous System. It was translated from the Italian.

 

[mostlylurking]

Good find!! Note to self: find Bettendorff, find the research.

You might find Costantini's published articles of interest:



Posted on September 11, 2019 by highdosethiamine

Published Study Articles​

Published research study articles on the use of High-Dose Thiamine (HDT) therapy with Dr. Costantini as primary author.

---

PLEASE NOTE:
Article copies downloaded from this page are for personal use only.
If it is important to your purpose that your downloaded article copy is suitable for all the uses PubMed allows, we strongly recommend that you download it FREE from PubMed by referring to the list provided below.
This ensures meta-information that may change over time (such as the article’s citation history) is current as of the day of your download.
List of Articles (full citations) [ .docx ]Download

The Articles​

High-dose thiamine improves the symptoms
of fibromyalgia

High-dose thiamine and essential tremor

Thiamine and spinocerebellar ataxia type 2

Thiamine and Fatigue in Inflammatory Bowel Diseases:
An Open-label Pilot Study

Thiamine and Hashimoto’s Thyroiditis:
A Report of Three Cases

High-Dose Thiamine Improves Fatigue After Stroke:
A Report of Three Cases

High-dose thiamine as initial treatment
for Parkinson’s disease

An open-label pilot study with
high-dose thiamine in Parkinson’s disease

High dose thiamine improves fatigue
in multiple sclerosis

Long-term treatment with thiamine as possible medical therapy
for Friedreich ataxia

High-dose thiamine improves the symptoms
of Friedreich’s ataxia

Oral High-Dose Thiamine Improves the Symptoms of
Chronic Cluster Headache

Thiamine Therapy for Dystonia Type 1

Long-Term Treatment with High-Dose
Thiamine in Parkinson Disease:
An Open-Label Pilot Study

 

[cjm]

You might find Costantini's published articles of interest:

Thanks for posting! No mention of the fat-solubles in those.

However, our boy Bettendorff writes (2020):

"Despite the methodological limitations of this study, this is an important observation and opens the field for sulbutiamine use in various conditions, particularly
in those characterized by an impaired intracellular and central nervous system thiamine metabolism."

Role of the Synthetic B1 Vitamin Sulbutiamine on Health

I found that here: Lucien Bettendorff

 

[mostlylurking]

Thanks for posting! No mention of the fat-solubles in those.

However, our boy Bettendorff writes (2020):

"Despite the methodological limitations of this study, this is an important observation and opens the field for sulbutiamine use in various conditions, particularly
in those characterized by an impaired intracellular and central nervous system thiamine metabolism."

Role of the Synthetic B1 Vitamin Sulbutiamine on Health

I found that here: Lucien Bettendorff

Interesting. I looked up the article:
"In retrospect, sulbutiamine was first used in neurochemical studies [29, 30] and, more recently, it has been shown to improve fatigue in patients with multiple sclerosis (MS) who were already being medicated for the disease (e.g., Fingolimod; β interferons; Glatiramer acetate; Azatihopurine) [31]. Despite the methodological limitations of this study, this is an important observation and opens the field for sulbutiamine use in various conditions, particularly in those characterized by an impaired intracellular and central nervous system thiamine metabolism [31, 32]."

reference 32: [32] A. Costantini, A. Nappo, M. I. Pala et al., “Case report: high
dose thiamine improves fatigue in multiple sclerosis,” BMJ,
London, UK, 2013.

I noticed that Bettendorff is using Costantini for his backup reference. Costantini worked with and preferred thiamine HCL over benfothiamine.

reference 31: S. Sevim, H. Kalea˘gası, and B. Tas¸delen, “Sulbutiamine shows
promising results in reducing fatigue in patients with multiple
sclerosis,” Multiple Sclerosis and Related Disorders, vol. 16,
pp. 40–43, 2017.

#31 reference did use sulbutiamine and does state that it helps reduce fatigue in MS.

Are sulbutiamine and benfothiamine basically the same or are they similar because they both are oil soluble?

Have you read any studies that actually compare what thiamine HCL and the oil soluble synthetics do better than the other? I get it that there are some theories and different knowledgeable people have their special favorite, but I'm wondering if there have been actual studies to see what works better.

I've read (heard?) that Ray Peat prefers plain old thiamine HCL over the synthetics. I think it was a safety concern because the synthetics are do not occur naturally in nature. If both things work but one is safer, I'd rather take the safer one.

 

[cjm]

I noticed that Bettendorff is using Costantini for his backup reference. Costantini worked with and preferred thiamine HCL over benfothiamine.

Are sulbutiamine and benfothiamine basically the same or are they similar because they both are oil soluble?

Have you read any studies that actually compare what thiamine HCL and the oil soluble synthetics do better than the other? I get it that there are some theories and different knowledgeable people have their special favorite, but I'm wondering if there have been actual studies to see what works better.

I've read (heard?) that Ray Peat prefers plain old thiamine HCL over the synthetics. I think it was a safety concern because the synthetics are do not occur naturally in nature. If both things work but one is safer, I'd rather take the safer one.

Nice follow-up.

Dr. Lonsdale is a champion for TTFD over the other fat solubles, his rationale is a good reference for comparisons between those, I don't know if he touches Hcl, which is safe, inexpensive and efficacious at high doses.

After my poor results with Ecological Formulas (and hearing about your headache on a clean source), I'm taking hcl and not looking back.

I assume the special advantages exist between each version, not to dismiss your question. I'd like to see any research you compile.

 

[mostlylurking]

Nice follow-up.

Dr. Lonsdale is a champion for TTFD over the other fat solubles, his rationale is a good reference for comparisons between those, I don't know if he touches Hcl, which is safe, inexpensive and efficacious at high doses.

After my poor results with Ecological Formulas (and hearing about your headache on a clean source), I'm taking hcl and not looking back.

I assume the special advantages exist between each version, not to dismiss your question. I'd like to see any research you compile.

I think the Hcl decision is a wise choice. If you have to take something long term I think it's best to get something that is as safe as possible. It's logical that naturally occurring is safer than synthetic. I'd rather take 2 grams of the Hcl any day over taking another single TTFD pill.

 

[Hgreen56]

how more i learn the benefits and importance about b vitamins, how more i understand the people that follow a carnivore diet

 

[Vileplume]

In two days of taking 1200 mg thiamine hcl, I’ve noticed some clear positives:
-tachycardia much reduced
-sleeping through the whole night uninterrupted (never happened before, now it’s happened twice in a row)
-increased appetite (before was never hungry)
-frequent urination problem diminished

The ONLY downside is that my stomach seems to struggle with this bulk supplements powder. I get terrible bloating with it. Does anybody have any ideas for overcoming this?

I dissolved some into a 70% ethanol solution, which might work topically, but I’m nervous it might not be as effective as the oral route I’m currently using for the above benefits.

 

[CLASH]

In two days of taking 1200 mg thiamine hcl, I’ve noticed some clear positives:
-tachycardia much reduced
-sleeping through the whole night uninterrupted (never happened before, now it’s happened twice in a row)
-increased appetite (before was never hungry)
-frequent urination problem diminished

The ONLY downside is that my stomach seems to struggle with this bulk supplements powder. I get terrible bloating with it. Does anybody have any ideas for overcoming this?

I dissolved some into a 70% ethanol solution, which might work topically, but I’m nervous it might not be as effective as the oral route I’m currently using for the above benefits.

Purebulk.com

 

[Vileplume]

Purebulk.com

Thanks. I didn’t consider that their powder could be different than bulksupplements’ powder

 

[yerrag]

In two days of taking 1200 mg thiamine hcl, I’ve noticed some clear positives:
-tachycardia much reduced
-sleeping through the whole night uninterrupted (never happened before, now it’s happened twice in a row)
-increased appetite (before was never hungry)
-frequent urination problem diminished

The ONLY downside is that my stomach seems to struggle with this bulk supplements powder. I get terrible bloating with it. Does anybody have any ideas for overcoming this?

I dissolved some into a 70% ethanol solution, which might work topically, but I’m nervous it might not be as effective as the oral route I’m currently using for the above benefits.

Did you have the same effect on the stomach regardless of taking it after meals or in-between meals?

Last night I took 1000mg of thiamine HCl before bed and it worsened my already frequent night time urination. I wanted to test the effect and it tells me I shouldn't take it at night. Maybe just spreading the dose would be good.

 

[redsun]

Thanks Clash. That was my first bet. I took enzymes - Dr Wong's ZymEssence and it increased my blood pressure. And then when I tried a 120k IU of serrapeptidase, just one capsule alone caused by wbc to rise from 7 to 11, so there was a lot of immune activity arising from it that made me suspect a lot of erstwhile dormant bacteria in the plaque biofilm got released into the bloodstream and became planktonic. The enzymes may have lysed the ICs, but the benefits were outweighed by the release of ICs as well as bacteria from the plaque lysing, and so the net to me was negative.

So now I'm staying away from these systemic enzymes for now and just focusing on the ICs that have accumulated on the kidneys.

And as for what you're saying about the ROS being helpful for killing a pathogen, that is correct but I also think that killing ICs is not exclusive of killing pathogens. Because the ICs are antibodies linked to pathogens which marks the pathogens for phagocytosis. It is said that small and medium agglomerations of ICs do not generate enough signals to attract phagocytes to engulf them, while large agglomerations of ICs have a stronger signal and these get eaten up by phagocytes. I don't know it that is true but I'm hoping it's not. I'm hoping that it's because my immune system can't summon enough ROS to really finish the job of phagocytosis and it's related to the strength of the respiratory burst, which is dependent on having enough ROS to potentiate the respiratory burst action.

So that led me to thinking about what is the limiting factor that keeps ROS from being produced? I think the my mitochondria is downregulated enough in terms of energy production, in the form of ATP, in order to create more ROS, but the ROS production may not be sufficient or potent enough. So I'm thinking the limiting factor is NADPH oxidase, which is the enzyme needed to convert superoxide to hydrogen peroxide, as well as for making ROS such as HOCl- and HOI-, and other ROS as well. Since I'm not deficient in Cl- and I'm supplementing some iodine with potassium iodide intake, I have to just guess, and it's a wild guess, that maybe, just maybe, I need a boost in NADPH oxidase. So I have to have the Pentose Phosphate Pathway increase its production of NADPH, and if vitamin is the limiting factor in producing NADPH, then maybe increasing vitamin B1 intake would help.

That's my reasoning for trying increased vitamin B1 intake.

@redsun can you also critique my reasoning as well?

Its not made with just B1 though. You need to make NADP first, which is made by NAD+ kinase. Then you can make it in the PPP. So you need to know the cofactors for NAD+ kinase and the pentose phosphate pathway.

 

[yerrag]

Its not made with just B1 though. You need to make NADP first, which is made by NAD+ kinase. Then you can make it in the PPP. So you need to know the cofactors for NAD+ kinase and the pentose phosphate pathway.

I'm looking at it from the standpoint of what could be a limiting factor, not from using everything where not everything is the current limiting factor though.

So if B1 happens to be the limiting factor, then it may help.

I also have temporal arteritis, which classifies as a granuloma, where the immune system in unable to kill a pathogen, and the body ends up surrounding the antigen with fiber to keep it from spreading.

This may also be the case with my keloids, which is a similar response to a pathogen-identified as mycotoxin, where the skins just wraps collagen over it. But doctors call it skin that keeps on healing and won't stop.

I came across an article that gamma interferon may be lacking (but this has to do with seborrheic dermatitis specifically, which I also have), but if they share a common cause in lacking gamma interferon, then perhaps B1 isn't the answer.

Still researching this though I'm not compiling my references together yet.