Significant Improvement Story -- Focus on Thiamine Deficiency

[tango]

I recently noticed that my 250 mg benfotiamine (Life Extensions) contains only 10 mg of thiamine.

My thiamine was bottomed out on my NutrEval a couple of years ago. I have increased my thiamine, but have not been able to afford a retest.

I went back over ONE test and it said low B1 plus there were lots of other metabolites indicating low b1

I also found that I have 6 homozygous mutations in the transketolase enzyme so I'm likely to always need higher b1

I take doctors best benfotiamine and NOW b1

 

[tango]

I recently noticed that my 250 mg benfotiamine (Life Extensions) contains only 10 mg of thiamine.

My thiamine was bottomed out on my NutrEval a couple of years ago. I have increased my thiamine, but have not been able to afford a retest.

Take a closer look! It's 250 benfotiamine PLUS 10mg thiamine

 

[Little Bluestem]

Yes, I see that you are correct. I started swallowing the pills whole (twice a day) when I thought they were only 10 mg. It doesn't seem to have hurt me, but I think I will go back to a more reasonable dose. The only problem is I don't know how a mg of benfotiamine compares to a mg thiamine. In fact, I see now that the bottle says to take 1 to 4 capsules/day.

 

[tango]

Yes, I see that you are correct. I started swallowing the pills whole (twice a day) when I thought they were only 10 mg. It doesn't seem to have hurt me, but I think I will go back to a more reasonable dose. The only problem is I don't know how a mg of benfotiamine compares to a mg thiamine. In fact, I see now that the bottle says to take 1 to 4 capsules/day.

In the studies people take much bigger doses. I'd keep going until you either get a positive response or negative side effects. That's what I'm doing.

250mg benfotiamine approximately 625mg thiamine so 3 pills is a decent whack and 4 should really have you cooking with gas

 

[SK2018]

Being detached is the ideal, but not a realistic one. Most people I know have at least some emotional investment when they try out a new remedy, protocol or practitioner. That's just human nature.

I actually kept track of most of the practitioners that I remembered consulting with, and most of the remedies I've tried in my 36 years with this disease, and I have given each of them a grade on their performance, based on effectiveness and helpfulness. As it turns out, these were my conclusions:

50% (66)--worthless
19.2% (26) detrimental
15.7% (21)--minimally helpful
14.3% (19) supportive
.75% (1)--very helpful

On my list is included practitioners of every ilk imaginable, from allopathic MDs to NDs, homeopaths, herbalists, nutritionists, acupuncturists, Reiki practitioners, hypnotists, chiropractors who do cranial work, psychotherapists, Bach Flower remedy experts, and assorted New Age wackadoodles. You name it, I have tried it. Most of it was a failure. I wish I had gone to the beach instead. It would have been a better use of my time and energy.

In addition to the above, since joining PR in 2009, I've tried the following, all recommended by someone here:
Fredddd's protocol (made me a lot worse),
Rich's SMP (minimally helpful),
Dog Person's B2 + manganese protocol (made me worse),
the Wahl's diet (made me REALLY hungry),
the GU syndrome protocol (no effect),
Laminine (made me worse),
the 23&Me-Yasko related protocol (still in progress)--some supps made me worse (molybdenum, TMG, zinc) and some have been okay in small doses (HB12 and MB12).

Considering everything I've tried, and all the money, time and energy I have put into it, and all the adverse or worthless effects I've had, I think caution and healthy skepticism about B1 is a reasonable place to come from.

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.

 

[tango]

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

 

[alethea]

I was wondering what might be some possible causes of b-1 deficiency for me and going over some of my notes from years ago along with what I posted in above thread.........I had written down that I had a sulfation impairment...........(my notes are terrible, very scribbly)........I wasn't converting sulfites to sulphates very well?...........and sulfites destroy thiamine. I wish I still had the test results explaining this sulfation impairment.

Hi Tammy, Molybdenum can help with sulfite --> sulfate.

 

[alethea]

I thought this was an excellent article, and I'll be following up on it for sure. Remarkably well-written, and easy to understand. It was just published on the ProHealth website this morning [July 3, 2013].

by Karen Lee Richards

How I Found My Long-Lost Energy

Thank you so much for this!
B1 one of the most powerful supplements I've tried. Somehow no doctor in 7 years thought to consider a thiamine deficiency? Astonishing.
I've been taking the active form (Benfotiamine, Pure Encapsulations) recommended by Izabella Wentz.
https://thyroidpharmacist.com/articles/thiamine-and-thyroid-fatigue/
I've read that there can be a "paradox" response to B1 initially where your symptoms will worsen. This "hormones matter" post is loooooong (apologies) but informative; most of the salient info doesn't come in until the end. Shocking similarity between ME symptoms and B1 deficiency, both of which seem to involve some hypokalemic hypersensitivity (note her use of sunglasses and ear plugs), in addition to the profound fatigue.
http://www.hormonesmatter.com/five-years-gardasil-nursing-mitochondria/
Many of my ME/CFS friends have also suffered from mold exposure, and mycotoxins are a potent thiamine antagonist.
Some with the 'mold sickness' HLA DR will constantly recirculate mycotoxins and therefore constantly lose thiamine.
I find thiamine is also somehow helping my body utilize B6. The B6 and the B1 seem to help each other.
I know B6 requires potassium for assimilation.
B1 is what enables electrolytes to cross cell membranes.
Maybe B1 is helping K get into cells? And thus also helping w B6 assimilation?
Also helpful for me has been getting other things on board first, before jumping in with Benfotiamine.
Including:
-- molybdenum - helps with sulfite --> sulfate, and sulfite is potent thiamine antagonist (careful - too much moly will increase uric acid)
-- manganese (small dose available in Trace Mineral Complex by Genestra) (David Watts claims manganese and B1 move in tandem. In fact I think my success with B2 + manganese may have been because it was helping my body utilize B1)
-- B2
-- zinc (possibly high-dose; both B6 and B1 are metabolized by Alkaline Phosphatase, and AP requires zinc)
-- biotin (helps w B1; one MS treatment prescribes 300 mg biotin for this reason)
-- cobalt (methylB12)
-- calcium (the only one I tolerate is INTRACAL/Hans Nieper)
-- electrolytes (although B1 is unstable at high pH, so bear that in mind -- your small intestine must be acidic, and not coated with yeast, for absorption. I've also noted I get a lot of edema -- both from too little B1, and from supplementing with B1 -- this may be the "paradoxical" response -- at any rate, in spite of this, constant levels of high-quality electrolyte matrix product seem to be necessary since I started B1. Could also be because some thiamine transport is Na-dependent and I'm always borderline hyponatremic).
-- coffee enemas contain caffeic acids which will destroy thiamine. If you have trouble releasing the enema, the loss of thiamine and resulting electrolyte imbalance could be to blame. Caffeic, chlorogenic, and tannic acids all destroy B1. Also rutin and quercitin.
-- Both times I had a health crash it was after 2 weeks of drinking green tea. At the time I did to know that tea/coffee destroys thiamine
-- Low blood pressure can be an indication of the need for B1
Thank you again. If it weren't for these forums, I'd never have found simple, powerful answers like B1, which has been life-changing for me.

 

[alethea]

Also, a few other things I forgot to mention:

The Genestra trace minerals only contain a tiny amount of manganese. If you really want Mn, a better source is something like BodyBio liquid. I find the Mn + B1 is also helping dopamine levels. (As I mentioned, some feel Mn and B1 rise or fall in tandem in the body.) And bear in mind that Glyphosate will interfere with all minerals, but seems to have a particular affinity for manganese. Mn is also necessary for one variety of SOD.

As someone else mentioned, B1 can cause oxalate dumping (rashes, headaches, painful urination), especially if you've been low for a while. Low B1 can contribute to endogenous production of oxalate, and oxalate is a mitochondrial toxin.

Once you are making oxalate (or absorbing too much from food as consequence of leaky gut), it can hog all your sulfur transporters, and contribute to sulfur wasting and lack of proper sulfur metabolism. Some who have "problems with sulfur" are actually having problems with oxalate, i.e. problems with B1.

There can also be genetic SNPs at SUOX that contribute to sulfur problems. These can be supported with molybdenum.

If not enough molybdenum OR genetic SNPs at SUOX OR problems with sulfation, then too much sulfite, and sulfite is a powerful thiamine antagonist. So this causes low thiamine which then perpetuates sulfur problems ... This is what I think, anyway What is still needed is the B1.

I think my consistent "normal" T4 but low T3 readings were the result of low thiamine. I've read (somewhere, I forget where) of people seeking mental boost taking T3 + thiamine. Interesting to see T4/T3 + B1 mentioned here bc I do not understand the thiamine/thyroid hormone relationship(s). Isabella Wentz uses B1 (megadose) to reverse Hashi's. Something is clearly going on there.

Taking thiamine can create a paradoxical response at first. I had POTS-like symptoms from low B1 and when I first took it, they intensified. I seem to need massive doses of sea salt to be able to tolerate it. And potassium.

When my health crashed in 2014 I also had what looked like the beginnings of ALS: fasciculations, muscle problems, numb lips. I think what was happening is this: I could not manage my electrolytes properly (one symptom of low B1 is deems -- I used to get severe edema of the face and eyes, actually -- B1 helps w electrolyte transport & homeostasis). Electrolyte transport issues often mean too much sodium inside the cell, and not enough potassium (of course Gerson et al believe this is the a priori mechanism for cancer).

Low B1 seems to contribute to a potassium deficiency.

In the presence of my low K, in a desperate attempt to maintain proper Na:K (critical for heart rhythm, life), my body was sending Na to my kidneys and excreting it in my urine. Calcium will follow sodium to the kidneys. And in fact doctors kept rubbing their chins "Hmm, you seem to be continually excreting calcium in your urine" (but never said anything beyond that) (naturally).

After years of low B1, I think I started to develop calcium dysregulation, and sufficiently low cellular calcium that nerve cell signaling was disrupted. (This is one of the reasons the INTRACAL cal/mag orotate supp has been so powerful for me.) A lot of my symptoms began to parallel severe calcium deficiency, such as the numb lips, fatigue, and depression. I think low B1 was causing low Ca and also low Mg, in addition to the low Na and low K ... In short it was messing up the full palette of my minerals and electrolytes. I've even begun to wonder to what degree ALS could be related to calcium dysregulation ... Look at the mechanism of calcium-dependent neuronal cell death through the lens of ALS sometime. I've been "lithium dumping" in my urine for years.

The issue with thiamine isn't just availability; there can also be problems with transport -- some genetic, some caused by vaccine or antibiotic injury, some related to deficiency of co-factors. My adverse reaction to Levaquin in 2004 looked a lot like 'wet beriberi' (difficulty breathing). Susan Owens has also found thiamine transport damage induced by Alinia. I'm sure everyone here knows to avoid fluoroquinolones like the plague. My antibiotic injury was mild (I stopped after 3 days) and I do not believe it to be part of the core etiology of my health problems. My fatigue preceded the antibiotic use and to some degree has been lifelong.

As a result of transport issues, some do well with shots. I've also looked in to trying to get B1 transdermally, and found a patch -- interestingly, intended to keep away mosquitos -- that delivers 75 mg B1 per patch. This is far, FAR less than I would require -- currently I'm taking three 200 mg Befotiamine pills per day, per Wentz -- but might be nice as an auxiliary supply when outdoors. MITES, especially, love me. The link between low B1 and deliciousness to bugs has me wondering if people suffering from Morgellons might benefit from B1.

http://www.mosquitopatchus.com

B1 also helps to detoxify acetaldehyde which is a carcinogenic immunosuppressive neurotoxin.

 

[tango]

Patches deliver more to the system because they bypass the liver and go directly into the bloodstream. I don't know the ratio but 75mg transdermal would be equivalent to more than 300mg of an oral supplement of the same dose

It varies according to the nutrient, the delivery system and the dalton size of the molecule. In some cases a transdermal nutrient is equivalent to 20x the same oral dose.othwr times it may be a ratio of 5:1 and in this case you're comparing benfotiamine with thiamine which have different chemical compositions

 

[Gondwanaland]

MITES, especially, love me.

Interesting you mentioned it, looking back I might have had problems with them during times of probable hyperglycemia (= low B1).

 

[Lolinda]

Anyone interested in diagnosing a B1 deficiency:

The most valid test is "red blood cell transketolase TPP effect". Here you see my really bad results on that test, plus comparison with research on beri beri. However, this test is hard to get. people and people seem to have issues with that in different countries.

Good news: In Europe, Synlab does it (and they have exchange between the Synlab labs across countries. So you probably could convince them to get the test done, even if it is not available in your country).

Better news: The two inferior tests (measuring the level of the vitamine itself and the transketolase activity) are not that bad either as shown by the following research. (Legend: VB1 = vitamin B1 = thiamine; TKA = transketolase activity = activity of an enzyme that only works on the presence of B1)

Best news: you do not need any test at all.
If you look at the above diagramm, what do they actually take as proof of having beri beri? They take "clinical" evidence. Reading the study, this means the combination of two things: 1. symptoms compatible with beri beri + 2 improvement upon thiamine. In simple words: the only fully valid test of beri beri is improvement of whatever beri beri symptoms upon thiamine. And, as there are other health issues than beri beri brought about thiamine deficiency, I would generalize: the only valid test for thiamine deficiency is improvement of any possibly thiamine-related issues by thiamine. Even the best test (the TPP effect), even in combination with the two other tests (transketolase and vitamine levels), does not correctly diagnose all patients, but only 87.7%.

There are, however, other arguments for getting tested:

• Improvement upon thiamine can last anywhere between days, weeks, months or even more (if you are interested in this, let me know, I have a few examples collected, and I would like to learn more if you have any references or personal experiences). So, testing can help to motivate patience in case the wonder does not happen tomorrow...
• In my case, it helps to stand through bad bad paradoxical effects during thiamine supplementation . So I know it is for a purpose and not simply torturing me in vain...

 

[Asklipia]

@Lolinda Thank you for this very useful post.
I am still improving on thiamine. But this is very difficult to measure because I felt very well before supplementing!
And I am also supplementing with carcinine.
But I definitely feel better!

Mosquitoes now stay clear of me and DH. This is the very first time in my life.
Maybe my aura is more difficult to penetrate?
It might be the case because I now remember that when we got sick around 1991-92, we found that people kept bumping into us in the street. At the time I thought they were just too engrossed in their thoughts/cell phones. But now they don't do this anymore! Even when texting they move apart in front of us!
Worse or better, last week I was walking briskly and about to overtake a pallid small elf-like woman. When I came about 4 yards behind her, she just fell flat on her face, as though I had pushed her to the ground. At least 4 yards behind! I wonder if it is not like a case of involuntary "iron shirt".

Also chelation is happening. I had 8 amalgams removed after I started to be sick. Now from time to time I get a grey blueish spot on my cheeks over the teeth which had the amalgams; This takes about two-three weeks to fade away completely.

At the moment we are on daily
- 150 mg benfotiamine + 12 mg L-leucine (Doctors Best)
- 50 mg fursultiamine as Allithiamine (Ecological Formulas)
- 66 mg fursultiamine + other Bs (Alinamin Ex Plus)
- 400 mg sulbutiamine (Arcalion)

Started thiamine as 50 mg Allithiamine about January 2016, then added progressively the rest in January 2017. Been feeling better all the time.

I do feel it takes time, but that time is more and more enjoyable.

 

[Gondwanaland]

INDUCED THIAMINE DEFICIENCY IN MAN
The degree of debility induced by the withdrawal of thiamine from the diets of these persons was impressive; fatigue, lassitude and loss of interest in food developed early and increased progressively as the period of deficiency was extended.

The time of development of severe symptoms was not the same for all and seemed to be related to physical activity, the more active subjects developing symptoms earlier. Depressed mental states, generalized weakness, dizziness, backache, soreness of muscles, dyspnea, insomnia, anorexia, nausea, vomiting, loss of weight, slight roughness of the skin and atony of muscle were encountered.

Faint heart sounds, lowered blood pressure and bradycardia when at rest, and tachycardia and sinus arrhythmia on exertion were likewise observed. Changes in the size of the heart were not found in any case, nor was edema observed. The concentration of plasma proteins remained within normal limits in all cases, as did the values for calcium and phosphorus in the serum.

Neither anemia nor cheilosis was present, but capacity for muscular work fell progressively. Also of interest was the development of electrocardiographic abnormalities, which consisted in the diminution of the amplitude of all complexes and particularly of the T waves of the chest leads.

These observations on the effects of uncomplicated thiamine deficiency in man are of unusual interest and importance. While edema, cardiac dilatation and peripheral pain are often encountered in beriberi, these symptoms were entirely lacking in the disease induced by restricting the dietary intake of thiamine.

In view of their observations, Williams and his associates have been led to question whether a deficiency in thiamine alone is responsible for the classic features of beriberi.

 

[Gondwanaland]

B1 increases thyroid hormones (possibly by turnover from T4 to active form T3... the specifics aren't important).

I might be having Selenium deficiency while re-trying B1 supplementation.

Also chelation is happening. I had 8 amalgams removed after I started to be sick. Now from time to time I get a grey blueish spot on my cheeks over the teeth which had the amalgams; This takes about two-three weeks to fade away completely.

Did you notice it happening before the carcinine? Because research says carnosine is a powerful chelator.

You mentioned "softer skin" in the anti-glycation thread. As per what I just posted above, softer skin would be consequence of healthy B1 metabolism. Carcinine and B1 seem to work together. Taking it might have used up my meager B1 stores.

 

[Asklipia]

Did you notice it happening (mercury chelation) before the carcinine? Because research says carnosine is a powerful chelator.

It happened to me some years back but I don't recall what I was taking at the time. Also it came with unbearable side-effects. I think this time it is due to the carcinine + thiamine, and it not at all unbearable.
It did not happen with HCl thiamine, nor with 50 mg Allithiamine per day. It it is the carcinine, it means that carcinine does not only chelate aluminium, I don't think there was any in my teeth.

You mentioned "softer skin" in the anti-glycation thread. As per what I just posted above, softer skin would be consequence of healthy B1 metabolism. Carcinine and B1 seem to work together. Taking it might have used up my meager B1 stores.

Be well!
You have been an and deserve all happiness! Praying for you when I take my pills! I know it will work!

 

[Asklipia]

In view of their observations, Williams and his associates have been led to question whether a deficiency in thiamine alone is responsible for the classic features of beriberi.

Yes. It fits with my ideas of the Japanese Connection of Fake Folates.
Even though it always existed, beriberi became prevalent in South-East Asia at the time portable soup came with the ships from the West. And there was a sharp increase of fake folates in the diet. MSG has been around for much longer that you know.
I think for beriberi you need thiamine deficiency + too much carbohydrates, + a general deficiency of B vitamins due to the fact that the fake B9 of the fake folates use up the other Bs but do not do their work properly.
The West had alcoholism on its shores near the villages that were cooking the portable soup, and scurvy on their ships.
The Japanese had beriberi on land and on ships, and they cured it with thiamine.

 

[tango]

@Lolinda Thank you for this very useful post.
I am still improving on thiamine. But this is very difficult to measure because I felt very well before supplementing!
And I am also supplementing with carcinine.
But I definitely feel better!

Mosquitoes now stay clear of me and DH. This is the very first time in my life.
Maybe my aura is more difficult to penetrate?
It might be the case because I now remember that when we got sick around 1991-92, we found that people kept bumping into us in the street. At the time I thought they were just too engrossed in their thoughts/cell phones. But now they don't do this anymore! Even when texting they move apart in front of us!
Worse or better, last week I was walking briskly and about to overtake a pallid small elf-like woman. When I came about 4 yards behind her, she just fell flat on her face, as though I had pushed her to the ground. At least 4 yards behind! I wonder if it is not like a case of involuntary "iron shirt".

Also chelation is happening. I had 8 amalgams removed after I started to be sick. Now from time to time I get a grey blueish spot on my cheeks over the teeth which had the amalgams; This takes about two-three weeks to fade away completely.

At the moment we are on daily
- 150 mg Benfothiamine + 12 mg L-leucine (Doctors Best)
- 50 mg fursultiamine as Allithiamine (Ecological Formulas)
- 66 mg fursultiamine + other Bs (Alinamin Ex Plus)
- 400 mg Sulbutiamine (Arcalion)

Started thiamine as 50 mg Allithiamine about January 2016, then added progressively the rest in January 2017. Been feeling better all the time.

I do feel it takes time, but that time is more and more enjoyable.

How do you find the sulbutiamine? I found it overstimulating. It kept me awake. I can take 2,000mg of benfotiamine without staying awake but a tiny bit of sulbutiamine really kicks things into hyper mode

Other than that I can say that thiamine has been one of a handful of things that have helped in 30 years of trialling meds, supplements and lifestyle changes. Unlike you, I've been in very poor health, with fatigue, pain and mental, physical and emotional symptoms.

I've had benefits from thiamine and benfotiamine. The jury is out on lipothiamine. I take it because it's supposed to cross the BBB but I have noticed no incremental improvement and am dialling it back. If I stop and get worse I'll know to pick it back up again but despite all the studies and claims of Lonsdale I notice nothing other than garlic-scented poop

 

[tango]

Yes. It fits with my ideas of the Japanese Connection of Fake Folates.
Even though it always existed, beriberi became prevalent in South-East Asia at the time portable soup came with the ships from the West. And there was a sharp increase of fake folates in the diet. MSG has been around for much longer that you know.
I think for beriberi you need thiamine deficiency + too much carbohydrates, + a general deficiency of B vitamins due to the fact that the fake B9 of the fake folates use up the other Bs but do not do their work properly.
The West had alcoholism on its shores near the villages that were cooking the portable soup, and scurvy on their ships.
The Japanese had beriberi on land and on ships, and they cured it with thiamine.

I wasn't taking fake folates. Our food isn't enriched with folic acid in New Zealand

Too much carbohydrates I will put my hand up for. We were brought up on porridge and wheaties for breakfast and lots of bread, potatoes, desserts and so on. Not to mention that my mother pretty much reared me on sugar.

I think, given I've been taking massive doses of thiamine for a couple of years and still seeing improvements (or feel worse when I stop) that I probably have a transketolase or enzyme problem stopping my body from properly utilising thiamine

 

[Asklipia]

How do you find the sulbutiamine? I found it overstimulating. It kept me awake. I can take 2,000mg of benfotiamine without staying awake but a tiny bit of sulbutiamine really kicks things into hyper mode

I have never taken more than 150 mg of benfotiamine so I would not know.
In the beginning sulbutiamine gave me a kind of high, but I started low at 200 mg every five days and have very slowly increased. I take with it some magnesium/potassium aspartate. Now I take 400 mg a day no problem.

Unlike you, I've been in very poor health, with fatigue, pain and mental, physical and emotional symptoms.

I was very sick, just as you describe, and for more than ten years. Now I am well, but older

lipothiamine

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).

I think, given I've been taking massive doses of thiamine for a couple of years and still seeing improvements (or feel worse when I stop)

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