• Phoenix Rising needs funds to operate: please consider donating to support PR

Significant Improvement Story -- Focus on Thiamine Deficiency

Lolinda

weird OI: standing up stops my digestion
Messages
388
Likes
612
Today, I did a retest of my thiamine levels. Here in Europe, Synlab offers the good test for thiamine, the "transketolase TPP effect".
  • I used the opportunity to ask them: they send the blood tubes "to a partner lab in Singapore". And the test costs my health insurance a surprisingly little 40 bucks. - This is what I could find out.
  • I made several times experiences that they have an intense exchange of samples across countries, so if one Synlab office offers a test, then others do too. Now I looked up their test catalogue in Leverkusen, Germany, as an example, and yes, they offer the test: "Transketolase mit TPP-Effekt"
I hope this helps you guys to find out if thiamine plays a role for example in elevated lactate levels. Reading research, I learned plentiful ways how one can have thiamine deficiency while eating enough. Disease, certain gut bugs, certain thiaminase foods, high carbs, glucose injections in emergencies, keto diet, long fasting and then re-introducing food, too much sports, .........., and genetic issues can drain it. Doctors seem to know about 1 reason: alcohol.

(Anyone new to this topic: See here for my catastrophic previous results, corresponding to beriberi. Only the scientific grade "transketovase TPP effect" test showed my thiamine deficiency, the inferior tests showed no problem at all)
 
Last edited:

pattismith

Senior Member
Messages
2,506
Likes
4,690
Ok I tryed to do the effort test again.

Fasting, no drinking before exercising. I did the strongest effort I could for 3/4 min, which was exactly the same I did three weeks ago, 6 times going down and up the stairs. (muscles burning strongly and even some time after exercise still)

(I also did my potassium level at the same time)

I kept standing up after exercising

T0 1 mmol/l (3.65 mmol/l) = befor exercise (never had such a low fasting lactates level before!!)
T0+ 5 min 6.1 mmo/l
T0+ 15 min 4.5 mmol/l (3.44 = under the minimal potassium blood range which is 3.5)
T0+ 25 min 3.6
T0+ 37 min 2.9 (3.66)
T0+ 47 min 2.7
T0+57 min 2.4

then I drunk 250 ml water (mineral water with potassium 6 mg/l) and I stayed supine:

T0 + 70 min 1.4
T0 + 83 min 1.6
T0 + 95 min 1.4

As you see, my recovery form exercice is almost normal, and greatly improved by taking mineral water containing potassium and resting supine.

I think I am in a better shape now than a month ago when I started to take supplements. I shall try to progressively move more to increase my physical capacities, I hope it will work!


It was only after 4 minutes of pretty intense exertion (for me):
View attachment 22146

Normal lactate recovery curve:
View attachment 22147
 

Lolinda

weird OI: standing up stops my digestion
Messages
388
Likes
612
This thread is about thiamine. But there is something that causes the same symptoms as thiamine deficiency: arsenic

the first hint was this:
http://onibasu.com/archives/fdc/31043.html
When you have high arsenic, then Andy does recommend a ketogenic or as much of an Atkin's style diet as you can stand. He talks about this in HTI on pages 91-92. Arsenic can cause impaired pyruvate handling and can be misdiagnosed as type 2 diabetes, and these people usually feel better on the Atkins diet.

Then, some factchecking if this is really true:
https://en.wikipedia.org/wiki/Arsenic_poisoning
Arsenic interferes with cellular longevity by allosteric inhibition of an essential metabolic enzyme pyruvate dehydrogenase (PDH) complex, which catalyzes the oxidation of pyruvate to acetyl-CoA by NAD+. With the enzyme inhibited, the energy system of the cell is disrupted resulting in cellular apoptosis. Biochemically, arsenic prevents use of thiamine resulting in a clinical picture resembling thiamine deficiency.
 

NotThisGuy

Senior Member
Messages
305
Likes
355
I think this is a very important post about B1 in @aaron_c CBS Thread:

I think you are missing the main way that malic acid helps get rid of ammonia. This is something that I have just figured out recently and I did post the following diagram in another post.
View attachment 9051
Note that the pathway on the left uses NADPH to produce BH4 from BH2. One of the main ways that the body produces NADPH is with the malic enzyme, which changes malate into pyruvate and produces 1 NADPH. It is a sort of loop or shunt in the TCA cycle because the pyruvate can then be changed to oxaloacetate to continue the cycle.

Have you tried mixing baking soda with the malic acid? That's a lot less work than making the liposomal. It takes 1/2 teaspoon per 1 teaspoon of malic acid to mostly neutralize the acid. That's how we take it, but if a person has sodium issues that might not be a good idea.

Since the body makes large amounts of malate, I wonder if the reactions some people get are not related to the fact that the malic acid is made from corn, a highly allergenic substance. (I know it is made from corn because I have a granddaughter with a corn allergy.)

I think that B6 is being drained by the SHMT enzyme as you can see above. The folate cycle has an alternate way to make ATP but it can drain B6, NADPH and produce extra ammonia, depending on which parts of the pathways are most functional in an individual person. Taking malic acid should relieve the drain on B6, help produce energy and lessen the ammonia problem.

Another thing that might help in some people is to increase thiamine to push the Pentose Phosphate Pathway, which is the 3rd and most well known producer of NADPH. This alone made my husband's sweat stop smelling of ammonia (he doesn't have CFS), but he has to take about a gram of B1 a day to lower the ammonia, and people with ME/CFS would probably have to work up slowly and some of them may not tolerate it.

I really don't think that the CBS mutation has anything to do with the high ammonia. CBS is regulated by the levels of SAMe and probably other factors, but not by the CBS upregulation. Ammonia is produced when the body uses a lot of glycine decarboxylase (malic enzyme)(edit: that should say glycine cleavage system, not malic enzyme) to produce ATP through the folate cycle or when the body burns amino acids for energy through the TCA cycle.

She also mentioned that taking B1 without D-Ribose is ineffective for her son.
Unfortunately Kimsie doesn't seem to be arround here anymore. She has so interesting Posts especially regarding NADPH which seems to be the solution for my disease.... Impressive that she even came to the conclusion that NADPH is the problem before sheperd or niaveax (cant remember how to spell his name?)
Does anyone happen to have a Email adress from here?
 

NotThisGuy

Senior Member
Messages
305
Likes
355
Thank you, nadnixon, I took a look at those links.

I have been thinking about it and I think that maybe it doesn't really matter whether MTHFR makes BH4 or not. Taking large amounts of folate didn't help my husband's ammonia issue, taking large amounts of B1 to help make NADPH did. I think it is really an issue with making enough NADPH. NADPH is a currency which can buy ATP and BH4, which you can see in the diagram below. If a person needs to buy a lot of ATP with their NADPH, they won't have enough for BH4, too, unless they can make a lot of NADPH.

To me it appears that when a person is affected by an inability to produce sufficient ATP through the TCA cycle, their body tries to use other pathways for energy production as much as possible, for instance the increase of lactic acid in some people making ATP through glycolysis. Folate is one of those pathways which can make ATP, but at a cost of NADPH and thus BH4, or else at a cost of B6.
View attachment 9053
My son who has fatigue and depression, was fatigued until he started taking 5 mg of folate a day. The folate relieved his fatigue in 2 hours. I don't think his improvement was from purine synthesis, because purine synthesis takes quite a few ATP. It must have been because he started producing more ATP through these folate pathways.

After about 6 weeks of high folate he started having symptoms of depression. I am pretty sure now that it was because the SHMT enzyme, being used so much, was draining his B6 stores from his body. I have now found that no matter how much B6 I give him, it only gives him a temporary improvement, which I think is because his body adjusts the amount of SHMT enzyme up and since he gets a lot of folate, the extra B6 isn't available for the pathway that causes his depression - the synthesis of heme and catalase and the catalase is needed for dopamine beta-hydroxlase and he doesn't have enough nor-epinephrine so he is depressed (getting depression from low nor-epinephrine appears to also be genetically determined.)

So I am convinced that if a person's pathway to make ATP by the SHMT loop is active enough to significantly contribute to ATP synthesis, it drains B6, at least in susceptible individuals who are affected. Often these people don't have good dream recall.

Of course most likely in most people both of these pathways are working together to make ATP, because the SHMT loop provides NADPH and glycine for the glycine cleavage system loop or for the little purple loop, which I will call the formyltetrahydrofolate dehydrogenase, or FTD loop. In general NADPH would be drained, and in some people B6 would also be drained, and sometimes glycine and/or serine, depending on how well a person was able to make them from the glycolysis pathway or from pyruvate.

So now I am taking my son down to 1 mg of folate a day, and focusing on how to increase his energy production so that he can have enough energy without having to use the folate cycle to produce it. I just started yesterday, so I can't report on my results, yet.
and than we also have the anti-glycation thread.

http://forums.phoenixrising.me/inde...-alanine-methylation.50395/page-9#post-891520


Some supermind has to connect all points together now...
 

NotThisGuy

Senior Member
Messages
305
Likes
355
Its really bad that we have those two threads about B1.... can't we merge them? since its pretty much about the same thing even if the other thread focuses on pyruvate dehydrogenase:

Anyway something that puzzles me:
@Kimsie said the B1 increases NADPH.
I can only find that B1 is needed to process D-Ribose.
NADPH generation seems to be further upstream with the glucose-6-phosphate dehydrogenase.

I dont know the co-factors of G6P-dehydrogenase, but I know that people who lack this enzyme should avoid Vitamine C and Vitamin K.

I dont tolerate Vit. C or K, like so many other here, but my G6P-dehydrogenase levels are fine.
The ONLY time I tolerated Vit. C and K without any problems in any dosage was while I was taking B1.....

When I take Vit k now I have this brain fog of a new kind.
Feels like brain fog + anemia + 100% complete retardness. It lasts for some hours but it is crazy... my brain is completely empty in those times
 
Last edited:

NotThisGuy

Senior Member
Messages
305
Likes
355
@NotThisGuy

Here are a two graphics that show Pentose Phosphate and transketolase in relation to NADPH. Both require Thiamine. Maybe this will help figure things out.


Thank you.
Now I see why @Kimsie son had to take D-Ribose with B1 to get NADPH working.
Im still in my never ending crash but im very tempted to try some D-Ribose and TPP or allithiamine.....
 

Hanna

Senior Member
Messages
717
Likes
849
Location
Jerusalem, Israel
Hi
I have begun to supplement with the TTFD form / lipothiamine from Cardiovascular Research Ltd.
I have B1 deficiency attested from 2011 (transketolase) that had not been treated so far except with an AOR B-complex that includes benfothiamine.

Four days ago, I have begun with small dose 1 tab/day (50 mg TTFD) then 2 a day and back to 1/day as I had terrible headaches. Buth I clearly saw a positive action on my low BP and POTS symptoms.

Yesterday, I began to f eel irritation/inflammation inside the mouth/lips and throat and coughing today. Has someone experimented such a reaction ? When it begins with dry coughing I fear I may develop allergic reaction...

Maybe even with a slow dose I have created a new imbalance ?
(in addition to the AOR B-complex which is low in B2 I take riboflavin-5-phosphate). Thanks in advance for your help.

One more question : is it possible to make a DIY transdermal cream from those tablets in order to bypass the irritation and inflammation of the mouth/throat/lips ?
 

Asklipia

Senior Member
Messages
998
Likes
1,385
Hi
One more question : is it possible to make a DIY transdermal cream from those tablets in order to bypass the irritation and inflammation of the mouth/throat/lips ?
Yes it is possible (messy and smelly), but it is by no means sure that the throat/lips problem is not due to actual renewal of damaged cells in that area.
Maybe it is better to titrate more slowly and see what happens? If in 4 days you have seen improvement, maybe it is worth having improvements every week in relative comfort?
:hug::hug:
 

sb4

Senior Member
Messages
1,251
Likes
1,988
Location
United Kingdom
@Hanna Maybe you need to lower dose? I had benefits from 50mg allithiamine for a few days but then my symptoms got worse so I've been doing better on <5mg.
 

Hanna

Senior Member
Messages
717
Likes
849
Location
Jerusalem, Israel
@Asklipia and @sb4 Thanks for your indication and maybe this is not a reaction of intolerance after all... . I would have liked to split the tablets but it is written "These tablets should be swallowed intact and not be chewed" in the indication column. I think because it is coated in order to avoid the action of stomach acids.

I don't have found any other supplier that ships to my country unfortunately for the moment. I am not sure if taking 1 tablet every x-days would do the trick. I am not clear about the half life of the product (I found plain thiamine to be 9 to 18 days and sulbuthiamine 5 hours ! not logical).
 

Gondwanaland

Senior Member
Messages
5,007
Likes
4,160
"These tablets should be swallowed intact and not be chewed" in the indication column. I think because it is coated in order to avoid the action of stomach acids.
My tablets of P5P are enteric coated but I pulverize them to take less than 1mg at a time. It works just fine.
 

Gondwanaland

Senior Member
Messages
5,007
Likes
4,160
In this site, they quoted as usefull to convert T4 to T3:
https://selfhacked.com/blog/low-thy...Nutrient_Deficiencies_and_T4_to_T3_Conversion
Nutrient Deficiencies and T4 to T3 Conversion
A deficiency in any of the following can lead to lower thyroid hormone levels. T4 is converted to T3 by Type 1 deiodinase.

  • Iodine – Significant, but not common.
  • Selenium (R) – Needed to convert T4 to T3. Protects against autoimmune thyroid conditions (R). Too much Selenium (300mcg) lowered T3 in men in one study (R), but a larger study couldn’t replicate the results (R). Selenium also increases chromium excretion, so make sure to take chromium as well. I recommend 150-250mcg from all sources daily. (RDA is 55mcg)
  • Zinc (R) – higher levels were associated with lower free and total T4 in males. (R)
  • Iron (R) – needed for TPO.
  • Chromium,
  • Copper – higher blood levels were associated with free and total T4 in males and both total T4 and T3 in females (R).
  • Vitamin A (R) – in obese women, vitamin A increases T3 and lowered TSH. There’s a decent chance that this will work in others.
  • B Vitamins: B2, B6, B12,
Supplements that decrease thyroid hormones