High Dose Thiamine and 'Refeeding Syndrome' -- what if the concept of finding the correct dosage is wrong?

[TiagoH]

Both Dr. Lonsdale and Dr. Chandler Marrs speak a lot about "refeeding syndrome" when supplementing with a vitamin B1 dose that's just too high.

This comes into conflict with the instructions from Dr. Constantini. So, it got me wondering.

According to what I've been reading, the goal of HDT (High dose thiamine therapy) is to find the correct dose for your body. Going higher than this dose causes an increase in symptoms, requiring you to stop HDT and start again a few days later at a lower dose.

Correct?

However, the Doctors I referred to in the beginning, when discussing this same phenomenon -- getting worse when you take too much vitamin B1 -- state that this worsening is actually a sign of how much your body really needs B1.

This would be similar to what happens when giving magnesium to a severely magnesium-depleted person.

They specifically state that in some people this worsening will last for weeks, while in others it may last for several months. It can get horrible, but, if properly supported will eventually subside.

Hence the name "refeeding syndrome".

To give you some background, the concept of refeeding syndrome refers to people that have been starving for a long time -- think people imprisoned in Nazi concentration camps -- and that, suddenly, are given all the nutrients they need. Instead of getting better, some will die:

"Abnormal heart rhythms are the most common cause of death from refeeding syndrome, with other significant risks including confusion, coma and convulsions and cardiac failure."

How come?

Their body is simply unable to adapt to all that nutrition because it needs nutrients to use up nutrients.

Apparently, something similar is happening when supplementing with vitamin B1.

Since vitamin B1 is so important for so many processes, a very high-dose of vitamin B1 can overwhelm the system.

For this reason, Dr. Londsdale will supplement his vitamin B1 therapy with, at least, a good multivitamin (with a generous amount of B-complex vitamins) and magnesium. Then, when there's a worsening of symptoms this is seen as a requirement to lower the dose but, and this is where the difference lays, with the understanding that the worsening means you needed that vitamin B1.

The main points I got were these:

When you take too much vitamin B1 you shouldn't feel it.

If a healthy body needs 2 mg and the person takes 2000 mg, his healthy body will make use of the 2 mg and expel the remaining 1998 mg trough the excretory pathways -- urine, sweat, etc.

However, if I'm severely depleted, my body will want to make use of as much vitamin B1 as he can get his hands into.

Then, since vitamin B1 is responsible for activating a lot of processes that have been dormant, or sluggish, for ages, there will be a sudden surge of all kinds of requests from all parts of the body demanding more nutrients from its reserves.

Now, if a person as been severely deficient in vitamin B1 for ages, chances are that he'll also be deficient in many other nutrients.

So, how is a body to keep up with the demand? It can't.

This causes a cascade of reactions.

So, based on these permisses, I ask:

-- What if people with Parkinson's that get worse on HDT are actually going through some form of refeeding syndrome?

If that's the case, then we'll have 3 possible outcomes for someone taking thiamine:

1. He doesn't feel anything.

--> This means one of two things:

1.1. - He's taking too little vitamin B1. He needs to take more.

1.2. - His body isn't B1 deficient and is just excreting the excess B1. This person will never feel a thing, even if he takes 7 grams of B1.

2. He feels better.

--> This means his body needed that B1. He had sufficient nutrients in his reserves to keep up with the incoming cellular demand caused by the sudden surge of thiamine. Now one of 2 things are true:

2.1. He doesn't need to increase his dosage and will eventually feel all the benefits at the current dose.

2.2. He needs to increase the dose to further benefit.

3. He feels worse.

--> This means his body wants to use that B1 but is unable to do so because some of the co-factors are not available. Also, as these co-factors are being used up, the body is feeling the side effects caused by their deficiency.

In this case, he will take 2 different paths depending on how he interprets this worsening:

3.1. Stop B1, allow some time for their symptoms to get back to baseline, and restart at a lower dose and become afraid of going high again.

3.2. Recognize his body is unable to use all that B1 -- even though he needs it. Restart at a lower dose, taking in B1 co-factors and any other nutrients he may be deficient in. Slowly increase the dosage.

If this is correct, then one would expect that people with a nutrient-rich diet would tend to tolerate higher doses of vitamin B1.

One would also be able to postulate that the worse you get with B1 supplementation, the more you stand to gain from its supplementation.

Hope this makes sense.

What do you think?

[Hidden]

I agree.

[chartist]

Dr. Costantini initially checked his patients before starting on HDT for their serum level of thiamine and these tests showed normal levels. After starting them on HDT, their serum levels were off the chart. His theory was that a perturbed thiamine transport mechanism may be a contributing factor that was not allowing enough thiamine to reach the brain even though serum levels were in range. It is established that insufficient thiamine in the brain is neuroinflammatory, neurodegenerative and this inflammation would also cause increased reactive oxygen species as well as other radicals that create a vicious cycle where the increased inflammation and radicals would feed off of each other damaging dopamine producing neurons as well as other cells in the brain. He felt that by administering high doses of thiamine, it could potentially compensate for the perturbed transport mechanism and get enough thiamine to the brain to ameliorate the deficiency in the brain, thus lowering the inflammatory state as well as the increased reactive oxygen species and other radicals to break or reduce that vicious cycle and allow cells to be repaired. It is all theory of course and I remain doubtful that we will learn all of the actual mechanisms of action involved with the addition of HDT in our lifetimes.

Some of the first testers of HDT started at 4 grams/day and saw initial improvement of symptoms followed by a worsening of symptoms and some who continued at the 4 grams also saw "new symptoms" not previously seen and then stopped taking HDT out of fear that these new symptoms would remain even if the HDT was discontinued and it does not seem that any PWP is going to continue taking HDT if they are seeing a steady worsening of existing symptoms as well as new symptoms not previously seen before. Dr. Costantini felt that if you saw a worsening of symptoms, then he considered you were a B-1 responder, but the dose was just too high.

Another thought is that as time has passed on this forum, some testers and users of HDT are starting to report that their symptoms are starting to worsen after many months or years of use and what these users are finding out is that a dose reduction is needed in order to return to the state they were used to from regular HDT use. Dr. Costantini was of the opinion that this aspect of HDT therapy was caused because of increased cellular repair due to reduced inflammation and oxidative stress in the brain that was essentially decreasing the demand for thiamine by the body and brain. Too much thiamine for B-1 responders has consistently shown an increase of PD symptoms. The current response range reported by forum members is as low as 25 mg/day up to 4,000 mg/day. Quite a range!

In other neurodegenerative diseases that Dr. Costantini also treated at his office with HDT, he found that higher doses than 4 grams of HDT were required in order to see symptom improvement.

Art

[TiagoH in reply to chartist]

I didn't thought about the human factor. I don't have Parkinson so I can only imagine how terrible and scary it would be to feel worse. From that perspective it makes sense to advise his patients to lower the dose.

[T-Writer in reply to chartist]

I have to agree with Art.

Plus, to me we're looking at something that calls for "systems" thinking. There are multiple routes of influence at work at any point in any process in the human body. The same symptoms could arise from malfunctions in any/some/all routes of influence in which B1 plays a role in activities around, among, and within cells. This would mean different people could get similar-looking relief with B1 but for subtly different reasons, not always a SINGLE reason. I doubt this will be unraveled until researchers focus on wider connections and relationships instead of on parts and single linear actions.

The body is an ecosystem, not a machine. We can't make it behave like a machine by conceptualizing it that way.

[Xenos]

Thank you for the development Tiago. This mechanism (overfeeding) would also explain why B1 could cause aggravation of symptoms, without being toxic by itself.

[Gioc]

interesting your theory as I have always used HDT supplementing it with a good nutrition based on fresh vegetables and multivitamin supplements at moderate doses and above all not neglecting minerals like magnesium and calcium. This is because, as you suggest, it is simply sensible to integrate thiamina with a good and complete nutrition even if we are not prisoners of war and above all if we do physical activity. As far as I know, thiamina has energy roles, for example, it "turns on" the fuel and non-energy roles such as participating in the formation of enzymes. So a lot of stuff, but we know exactly what it does and what are the well-known side effects including rare events being thiamine a substance discovered, studied and used for more than a hundred years. In my opinion everything else is due to other causes. We, Parkinson's patients, are interested in what happens in the brain, that is, beyond the Blood brain barrier. Dr. C explains in a well-known interview on YouTube how b1 has a "restorative" effect on the part of suffering dopaminergic cells restoring them and according to him the b1 has a neuroprotective effect but not a cure. This assumes that the quantity of cells suffering compared to healthy cells and the extent of the lesion play an important role in the individual efficacy of b1 and in its immediate response as only in some cases is found. While for the neuroprotective effect only in the years we will have the answer. Finally, to better understand Dr. C's research, we need to study it chronologically. Initially the doctor treated the 100mg injections twice a week and then adjusted it more or less with a break of one week every three, a therapy that I followed and does not seem to me a high dose. Then he turned this dose into pills with the relative further complexity due to individual intestinal absorption, this in my opinion was done to make the b1 available to all those who wanted it. All I say is just my modest opinion of patient of Dr. C I could be denied soon. Maximum of the day: it is better to study because the knowledge makes free, also from the pD and on HU many useful things are learned. Sorry for my bad English, I translate everything with Google translator, and then I have to re-read and correct and I don't always do it right.

[ParlePark in reply to Gioc]

You do a great job Gio... thanks for the post.

[T-Writer in reply to ParlePark]

Gio, ever try the DeepL translator? They are said to be a bit better than Google translator, I know they offer free translation online for smallish stuff like posts, etc. You may like to try them at deepl.com Good luck! Keep posting!

[Ajssister in reply to Gioc]

We understand you Gio. Thank you for everything you contribute. God bless you

[Gioc in reply to Ajssister]

Thanks Ajssister and ParlePark and all the other friends here on HU, when I read your posts I know I'm in the right group.

So here I know to always find friends who understand me beyond words.

Thank you all woman and men, Pwps and caregivers, you are all in my heart, always with respect and friendship.

Gio

[LindaP50 in reply to Gioc]

My husband's first reaction to HDT was he had more energy.

[ConnieD in reply to Gioc]

You translate very well my friend!!🌸

[Gioc in reply to ConnieD]

Hi Connie,

A warm greeting from Italy to you and your family.

It's always a pleasure to hear from you.

"Mangia! (let Eat!)"

It is tipical Italian mother stantement .

Do you know ?!! ☘️☘️☘️

Gio

[ConnieD in reply to Gioc]

Hello Gio!!

Yes Mangia is one of very few words I know in Italian and probably the first I learned! My husband’s parents are both from Italy his father from Calabria and his mother lived near Rome. At many family dinners my father in law says Mangia! He often says Salute! He makes his own red wine , I think it means cheers?! Always a pleasure to hear from you Gio!🌻

[Gioc in reply to ConnieD]

Ha,

My wife's grandfather, from near Venice, also made wine at home, but he didn't know how to make it.

An undrinkable concoction and we found it on the table everytime ... only he drank it.

Holy patience....

PS. He died "suddenly" at 92 after the doctor forbade him to drink that wine and smoke even the only cigarette a day. Placebos ?Or only pleasure of life remained forbidden? mah!

[ConnieD in reply to Gioc]

Ha ha! My father in law tries so hard to get everyone to drink his wine but it’s way too strong for me! I said to my husband one Christmas could we bring another bottle of wine he said no my father would be very insulted! So it’s water for me on the holidays, I do take a little sip of his wine to be polite!!😊

[parkie13]

We have many new members on this site. I am including a link to an explanation of the methylation cycle and thiamine HCL.

blog.parkinsonsrecovery.com...

This is dr. Robert Rogers Ph.D explanation of it. If you scroll all the way down on the comments, the last comment has a link to his interview with dr.Costantini.

I believe this explains why we have to adjust our dosage and at times stop completely..

[LindaP50 in reply to parkie13]

Parkinson's "recovery" ????

[parkie13 in reply to LindaP50]

Myself, I don't think so. Whatever is giving us Parkinson's is still there.

[LindaP50 in reply to parkie13]

Right. You can feel good. You can try and slow the progress ...

[CaseyInsights]

Thanks for exposing an alternative view point 🌺✌🏾🌺

[justjohn46]

a lot to think about as everyone is different like me having sicatica along with parkinsons im a bit of a mess at the moment ive had needles in my spine twice it never helped ill be having an opp maybe after christmas time hope so anyway i have been taking B1 over a year now so ill wait until i get rid of the siatica and see see how my pd has progressed after i get rid my siatica hope so anyway.john.

[Hidden in reply to justjohn46]

I had screaming leg pain but am now two years pain free after epidural steroid injection. I understand what you must be going through

[justjohn46 in reply to Hidden]

hi roy i had the epidural on my back twice it never worked hoping what ever they do next time works i was on crutches this morning with the pain.oo wow is me im still exercising though.

[LAJ12345]

I have been wondering the same. Are people starting to feel worse after a while because they are running out of other things.

If you want a good multivitamin to try this theory try Hardy’s daily essential nutrients. My husband felt so much better once he started on these after just 3 days. He is on the maximum 12 a day.

hardynutritionals.com/produ...

These are made in Canada, quality controlled and have a 24 hour free support line if you want to ask advice. They look expensive but if you bought everything separately it would be dearer and it is much easier to have everything in one product. He takes extra b2, b3 niagen, inositol and b5 now too.

[Buckwheat64]

This may be happening to me. Not sure but I am having more trouble walking since I started taking the B1 about 2 weeks ago.

[ConnieD]

Very interesting theory! I recall early on a woman who was taking B1 and was under the supervision of her regular doctor said she felt worse and when she spoke to her dr he said double the dose and she felt much better. I remember commenting to her I was surprised since usually everyone lowers the dose.