Significant Improvement Story -- Focus on Thiamine Deficiency

[pattismith]

If one has tried so many things and nothing has worked and has had the disease for 36 years there are only really 2 possibilities left , A: irreversible damage or B: an untreated autoimmune process.

C. The nocebo effect
D. Crappy diagnosis

OR it may be that

A-the supplements that have been tryed were not associated in the right way
B-the doses were not acurate
C-the forms were not acurate

Being ill for 35 years without a diagnosis, I have tryed many things but never associated the right things altogether.
So I had only minimal improvment with it, and never persevered.
The only things I persevered with were Calcium, Magnesium and L Lysine, because I was so quickly bad each time I stopped one of them...

This months is the first time that I am trying many supplements all together.
To be sure that my improvment is not "in my head", I did lactate testing before my trial (post exercice and postprandial), and I will testing again after some weeks.

keep hoping and trying!

 

[Lolinda]

Relationship of thiamine and thyroid

Above on this thread, I have seen some interest in the relationship of thyroid and B1.

https://thyroidpharmacist.com/articles/thiamine-and-thyroid-fatigue/

I think my consistent "normal" T4 but low T3 readings were the result of low thiamine

@Gondwanaland , may I suggest following mechanism?
B1 increases thyroid hormones (possibly by turnover from T4 to active form T3... the specifics aren't important).

So I did a quick search on google scholar.

The original publication on which the webpage thyroidpharmacist is based is a low quality subjective mini-report on 3 patients. It has no control group and there is no objective end point. For anyone not versed in research: 'why are such typical critical ivory tower comments important when I just want to get better?' The problem is that you can give any patients a shiny white pill, say some very important and reassuring words, wear a white coat and own a clinic, and some patients will report that they feel better.

Then, the same author published nearly the same text for just any disease. (Thanks @Emootje !! )

Fibromyalgia, Multiple Sclerosis, Parkinson's disease.

So, here somebody is producing a lot of papers . But in spite of all this, it is my belief that he says something true, important and useful: in whatever fatiguing disease, B1 could be a good idea to try to improve fatigue (and other doctors should learn this!!)
But actually we do not need science for that: what matters is our own improvement

...but could there be any relationship specifically to thyroid? Yes. In a quick search, I just found this old paper, which seems nevertheless a competent review. I cite some interesting points.

Interrelations between thyroid function and vitamin metabolism.

Reports on the effect of vitamin B1 deficiency are various, and no definite conclusion can at present be drawn. Certain authors show no effect of vitamin B1 deficiency on the thyroid gland, and in other cases the possibility of an iodine deficiency is not ruled out.

Experimental hyperthyroidism increases the requirements for vitamins A, C, B1 and B6 and pantothenic acid, and if these increased requirements are not met, a relative deficiency of the vitamins will ensue.

The maintenance of bodyweight is due to the increase in food intake that occurs when the increased requirements for the B vitamins are met. Such animals will also maintain normal oestrous cycles.

In Graves' disease there is increased urinary excretion of vitamin B1, and most authors have reported benefit from administration of vitamin B1 and yeast, though one paper reported no effect.​

- so what does all this mean? Most of all, thyroid seems to drain vitamins, including B1.

Then, here is a newer paper: Thyroid hormones decrease resorption of B1!
Thiamine Intestinal Transport and Related Issues: Recent Aspects

I posted these for you guys, for your interest in thyroid and thiamine. Thankfully, my own thyroid is largely ok . I leave it to you to look for newer research. It is as simple as heading to scholar. PS: @gefinauser : i like your mechanism-idea. Why not make our own small study? Just all the people here post thyroid labs before and on thiamine My labs confirm your idea.

 

[tango]

Never tried lipothiamine. This is a brand name for TTFD (fursultiamine which I take as Allithiamine and Alinamin Ex Plus, and ALA (alpha lipoic acid).


This is very encouraging! It means after time we can even improve further!

It's not quite the same. Lipothiamine is enteric coated and theoretically more effective

Derrick Lonsdale says:
February 3, 2016 at 3:35 pm
Both of them are thiamine tetrahydrofurfuryl disulfide (TTFD). Lipothiamine was a later development than Allithiamine and both are sold by the same company. Lipothiamine is enteric coated so that it passes more easily through stomach acid. Thiamine is absorbed in the jejunum. TTFD is called “fat soluble” only because it passes through the lipid barrier of the cell membrane. It is actually soluble in water and can be given intravenously. Benfotiamine is not a disulfide and the prosthetic group has to be removed by an enzyme in the liver or kidney. Neither does it cross the blood brain barrier. It has been used with success in diabetic peripheral neuropathy. In my view, TTFD is the best of all the thiamine derivatives that have been synthesized and there is no need for combinations.

 

[Asklipia]

Thank you @tango for this interesting link.
So lipothiamine is a way to deliver TTFD avoiding stomach acid, as is also the case with transdermal TTFD.

Following your link I came upon a thread on autismweb.com "Strains of clostridia cause severe thiamin deficiency".
This could explain one of the reasons why we got such good results with Clostridium butyricum Miyari supplementation! It competes with other nefarious Clostridia and thus reduces the load of thiaminase!

 

[tango]

Thank you @tango for this interesting link.
So lipothiamine is a way to deliver TTFD avoiding stomach acid, as is also the case with transdermal TTFD.

Following your link I came upon a thread on autismweb.com "Strains of clostridia cause severe thiamin deficiency".
This could explain one of the reasons why we got such good results with Clostridium butyricum Miyari supplementation! It competes with other nefarious Clostridia and thus reduces the load of thiaminase!

Great find! Yes, I find the AOR probiotic magical. Way more effective than elimination diets which should in theory starve the bad bacteria. Perhaps, those diets work but AOR is MUCH faster. The Miyarisan version doesn't appear to work as well for me but I am going to give it another go.

 

[Gondwanaland]

Perhaps, those diets work but AOR is MUCH faster.

I would be interested in reading more details about it since I have an unopened bottle of AOR at home and always found the other strains in it kinda scary

 

[Lolinda]

Following your link I came upon a thread on autismweb.com "Strains of clostridia cause severe thiamin deficiency".

Thanks @tango and @Asklipia for this precious link!!

high-carbohydrate feeds, leading to the overgrowth of thiaminase-producing bacteria, but dietary ingestion of thiaminase (e.g., in bracken fern), or inhibition of thiamine absorption by high sulfur intake are also possible.[34] Another cause of PEM is Clostridium sporogenes or Bacillus aneurinolyticus infection. These bacteria produce thiaminases that will cause an acute thiamine deficiency in the affected animal.[35

This could be me...

• high-carb: that is what I ate as a child, tons of chocolate and pudding
• high-sulfur: opposing any normal kids, I loved brussels sprout. Today, I eat copious amounts of broccoli. Interestingly, when I supplemented with B1 (failed because of paradoxical effects), my appetite for broccoli and olives was completely gone. (do olives contain sulfur?)
• Clostridia: I had elevated values in the past. I do not tolerate probiotics, but a very low carb diet saved my life.

One can get tested for Clostridia Sporogenes using the Great Plain Labs OAT - see "16 HPHPA" quite at the bottom.
(This is not the best quality of gut bugs test. But unfortunately, the good tests such as tha Redlabs MSA only do other Clostridia.)

 

[tango]

I would be interested in reading more details about it since I have an unopened bottle of AOR at home and always found the other strains in it kinda scary

I can't think where it is but if you Google the AOR probiotic there is a long article somewhere of how it works and all the parasites and "bad" bacteria that it treats.

I shared it around a lot about a year ago but for the life of me can't think of the keyword comination I used to find it but it was very compelling

Anyway, I can't praise it highly enough. It costs a fortune through iherb (much cheaper from Amazon but they don't ship here) but I can't be without it. Along with B1 it's one of the few things that helps. The more I take the better I feel

If only I could fix my sleep I would be golden

 

[Eastman]

Lipothiamine is enteric coated and theoretically more effective

Are you able to say roughly how much more effective?

 

[Gondwanaland]

do olives contain sulfur?

Oxalates, which are known B1 antagonists.

 

[Gondwanaland]

Don't you guys think that daily dietary needs for B1 should have been revised long ago? For instance Standard American Diet, which I more or less followed for several years is long known to deplete B1:

FURTHER EXPERIMENTS ON THIAMINE DEFICIENCY IN MAN (1943)
Each subject was allowed unlimited amounts of foods that are low in the vitamin B-complex. These consisted of ordinary white bread, soda crackers, butter, cheddar cheese, macaroni, spaghetti, polished rice, farina, heavy cream, sugar, honey, molasses, tapioca, salad oil, egg white, ice cream, puffed rice, coffee, tea, salt, pepper, vinegar, hard candies, and gelatin. Small amounts of orange juice, grapefruit juice, onions, and lettuce were given each day and twice a week very small portions of meat, fish, or poultry were permitted.

Of course my diet wasn't as bad as the above, but my brother's was, and today his only way to feel healthy and to maintain a healthy weight is by doing keto diet.

B1 dietary needs should be calculated as a function of personal carb intake.

 

[pattismith]

Hyperlactatemia, a condition shared by many of us, can sometimes result from a drug toxicity, like the NRTI therapy for HIV.
Here a clinical trial was proposed some years ago, with high B1 and B2 vitamin intake in order to conteract the drug induced hyperlactatemia:

https://clinicaltrials.gov/ct2/show/NCT00031057

I don't know if B2 deficiency is as common as Thiamine deficiency seems to be, but we may take some benefice if we add it to our supplement!

 

[tango]

B2 is a cofactor for many reactions. I take high doses. I'm trying to sort my gut so the factory in there starts to manufacture the vitamins I need but it's a long slow road and so far not successful

I had to google hyperlactatemia. I've never been tested for this. It sounds interesting. I'll have to see if the test is available here

Does the lactic acid in OAT tests (urine not blood levels) provide a decent indication?

 

[pattismith]

B2 is a cofactor for many reactions. I take high doses. I'm trying to sort my gut so the factory in there starts to manufacture the vitamins I need but it's a long slow road and so far not successful

I had to google hyperlactatemia. I've never been tested for this. It sounds interesting. I'll have to see if the test is available here

Does the lactic acid in OAT tests (urine not blood levels) provide a decent indication?

the best is to test lactatemia at home.
I bought my own tester and I do my own tests (post prandial and post exercise) for about three weeks now.
I discovered that my fasting lactatemia is in the normal ranges, but the others are too high (hyperlactatemia)

I started a supplement program, and it seems to work! These two last days, my lactates were not more than 2.1 mmol/l, and I feel better!
I will post my trial as soon as I will have enough data.
@Hip has already proposed to do a trial on us, the thread is here:

http://forums.phoenixrising.me/inde...-study-to-measure-blood-lactate-levels.40152/


In my own trial, the B1 vitamin I choose is Thiamine Pyruvate, I don't know if it is the best or not, but the result is very good for me. I will add B2 too, but I have no idea of what is a high dose of B2 vitamine!

 

[tango]

the best is to test lactatemia at home.
I bought my own tester and I do my own tests (post prandial and post exercise) for about three weeks now.
I discovered that my fasting lactatemia is in the normal ranges, but the others are too high (hyperlactatemia)

I started a supplement program, and it seems to work! These two last days, my lactates were not more than 2.1 mmol/l, and I feel better!
I will post my trial as soon as I will have enough data.
@Hip has already proposed to do a trial on us, the thread is here:

http://forums.phoenixrising.me/inde...-study-to-measure-blood-lactate-levels.40152/


In my own trial, the B1 vitamin I choose is Thiamine Pyruvate, I don't know if it is the best or not, but the result is very good for me. I will add B2 too, but I have no idea of what is a high dose of B2 vitamine!

Thanks I will look into finding out if I can get a copy of the test. Where did you get your test kit?

My practitioner advised 400mg B2 which I spread out into 4x 100mg for about a year

Now I take about 200mg.
100mg first thing
Open the capsule and sprinkle the rest in small portions in my water, smoothie, etc throughout the day to get to 75mg
plus 25mg at lunch with my boron pill

I've never tried thiamine pyruvate but pyruvate is an energy enhancer so maybe it's a good form. Never even heard of it!

 

[tango]

The EDGE Lactate Analyser Starter Kit is no longer available on Amazon

 

[pattismith]

The EDGE Lactate Analyser Starter Kit is no longer available on Amazon

another one among the best analyzer is the Accutrend Plus (I use this one, and read it was a reliable one).

Thank you for the B2 dosage!

 

[pattismith]

I take Thiamine Pyruvate for 3 weeks now. (with other supplements meant to decrease lactatemia)
Hopefully my lactates levels are much better than they were 3 weeks ago , but I wonder if the Thiamine Pyruvate may not have a conterproductive action by increasing Pyruvate level, which may increase lactates level....

I choose the Pyruvate Thiamine as it was a liquid form, very easy to use and cheap, and well absorbed in the gut, without really thinking about it...

Do you have any idea about the question?

 

[Emootje]

another one among the best analyzer is the Accutrend Plus (I use this one, and read it was a reliable one).

Last week I tested my Accutrend Plus with a multi analyte control that I normally use for my blood gas analyser.
It did pretty good, tested 2,4 mmol/l with a 2,31 mmol/l control solution.Not bad for a budget analyser...

 

[pattismith]

Last week I tested my Accutrend Plus with a multi analyte control that I normally use for my blood gas analyser.
It did pretty good, tested 2,4 mmol/l with a 2,31 mmol/l control solution.Not bad for a budget analyser...

yes, quite good! Did you already checked your blood lactates with it?

For Europe, Here is a website where Accutrend Plus is not too expansive:

https://www.praxisdienst.fr/fr/Arti...Lecteur+de+glyc+mie+Accutrend+Plus+mg+dl.html