Significant Improvement Story -- Focus on Thiamine Deficiency

Wayne

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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
As a 24-year veteran fibromyalgia patient, I became accustomed to not having much energy. For many years the fatigue was so bad, most days it was a struggle just to get out of bed. Then a few years ago, I began taking Ubiquinol (CoQ10) and NADH. They helped quite a bit, increasing my energy levels enough that I was able to continue supporting myself by working from home on a computer. But doing that work took up just about every ounce of energy I had gained. There was very little left over to do much else.

Then a little over a month ago, a new fibromyalgia study caught my eye – “High-dose thiamine improves the symptoms of fibromyalgia.” It was a very small study conducted by a group of reachers in Italy. In fact, the study was so small – only three FM patients – that I normally wouldn't give it much weight. But the dramatic improvement in fatigue and pain levels experienced by all three participants piqued my interest.

Below are the results for each patient following 20 days of high-dose thiamine therapy:
  • Patient 1: 71.3% reduction in fatigue; 80% reduction in pain.
  • Patient 2: 37% reduction in fatigue; 50% reduction in pain.
  • Patient 3: 60.7% reduction in fatigue; 60% reduction in pain.
Wanting to know more, I contacted the lead author, Dr. Antonio Costantini. I learned that in addition to the fibromyalgia study, the same group of researchers had also been studying the use of high-dose thiamine (also known as vitamin B-1) for several other diseases in which fatigue was a significant factor (including ME/CFS) – all with similarly impressive results.

The Story Behind the Research

In June 2010, Dr. Costantini and his associates noticed that the fatigue and related disorders in patients with ulcerative colitis improved after therapy with high doses of thiamine. From that they formulated an hypothesis: “Chronic fatigue that accompanies inflammatory and autoimmune diseases could be the clinical manifestation of a mild thiamine deficiency, probably due to a dysfunction of the intracellular transport or due to enzymatic abnormalities, and responds favourably to high doses of thiamine.”

The study authors stated, “From that moment, we systematically searched for and treated with high doses of thiamine chronic fatigue, when present, in any type of disease.” Not surprisingly, one of the diseases they decided to test this therapy on was fibromyalgia, since fatigue is a major symptom for most people with FM.

While researching the scientific literature on thiamine and FM, they came across a 1998 study that stated, “A number of similarities exist between Fibromyalgia and thiamine deficiency. They include irritability, frequent headaches, unusual fatigue, muscle tenderness upon pressure palpitation, muscular weakness, irritable bowel syndrome and sleep disturbance. Studies published in JACN [Journal of the American College of Nutrition] have demonstrated abnormalities of thiamine metabolism in FM.”

Learning More About Thiamine

By the time I finished reading through several of the high-dose thiamine studies Dr. Costantini sent me, I knew I wanted to try it out for myself. But since the dose was so high, I wanted to be sure it was safe. After all, thiamine is not a nutrient we typically hear much about. In fact, until reading these studies, I knew nothing about thiamine except that it existed and was usually included in multivitamins as part of the B-complex.

So I began doing some research and here's what I learned about thiamine:
  • Thiamine is another name for vitamin B-1.
  • It can be spelled as thiamine or thiamin. The final “e” is optional.
  • Thiamine is an essential nutrient, meaning our bodies do not make it so we must get it from the foods we eat and/or supplementation.
  • Dietary sources of thiamine include legumes, beef and pork, Brewer's yeast, whole-grain breads and cereals, oatmeal, rice bran and wheat germ, milk, nuts, seeds and oranges. When it comes to grains, it's important to eat whole grains because thiamine is found mostly in the outer layers of the grain and in the germ, both of which are removed during the refining process.
  • Thiamine is important for a variety of bodily functions, including nervous system and muscle functioning, carbohydrate metabolism, healthy digestion and more.
  • A severe thiamine deficiency results in a condition known as beriberi, which can be fatal if left untreated.
  • Up until now, thiamine deficiency was thought to occur most often in alcoholics, the elderly, people with malabsorption syndromes and people on kidney dialysis. However, newer studies are beginning to show that a mild thiamine deficiency may be more prevalent than once thought.
  • Thiamine is considered safe and nontoxic, even at high doses. Few side effects have been reported. Although no side effects were seen in the fibromyalgia study, a few people in other high-dose thiamine studies did report side effects like insomnia and tachycardia.
Interestingly, when given a blood test, many of the people in these studies had normal blood concentrations of thiamine, yet they experienced significant symptom improvement when taking high doses of thiamine. The study authors speculate that this “may indicate a dysfunction of intracellular thiamine transport or structural enzymatic abnormalities.”

My Personal Experiment with High-Dose Thiamine

Once I was convinced that thiamine would be relatively safe for me to try, I decided to follow the basic protocol used in the fibromyalgia study. Those patients started at 600 mg/day and increased the dosage by 300 mg every three days until they reached a therapeutic dose. (It can take up to 48 hours to experience the effects from an increased dose of thiamine.)

The first patient reported dramatic improvement at 600 mg. The other two did not experience any changes until they reached a dose of 1500 mg. The final therapeutic dose for both was 1800 mg, at which time they reported an abrupt improvement.

Since I couldn't find thiamine in 300 mg tablets, I worked in 500 mg increments. Within 24 hours of taking my first 1500 mg dose, I noticed a huge increase in my energy level. I then tried taking 2000 mg to see if it made even more of a difference, but I actually felt a little worse, so I dropped back to 1500 mg/day and have remained there ever since.

I can honestly say that my energy level now is much, much better than it has been in 24 years!
By the third day after starting the 1500 mg dose, I almost bounced from one activity to another and kept thinking, “I feel so good! What can I do next?”

While I can't say I've also experienced the same reduction in pain as the study participants, I'm hopeful that will come in time. But even if it doesn't, I'm thrilled with my increased energy! It's a lot easier to cope with pain when you have the energy to move around and be more active.

Need-To-Know Information About Thiamine
Following are a few additional pieces of information that are important to know about thiamine deficiency and supplementation:
  • Thiamine is water-soluble and can be taken with or without food.
  • Drugs, such as antacids, barbiturates, diuretics, alcohol and tobacco may decrease the body's ability to absorb thiamine properly.
  • Betel nuts and horsetail supplements cause a chemical interaction with thiamine that can damage its ability to work.
  • Eating raw seafood or drinking large amounts of coffee and tea can destroy thiamine's effectiveness.
  • If you are pregnant, may become pregnant, or are breastfeeding, consult your health care professional before taking thiamine supplements.
  • Diabetics are typically deficient in thiamine. However, Dr. Costantini cautions that diabetics should keep a close eye on their blood glucose levels while taking high doses of thiamine because he has seen a couple of people whose glucose levels have gone up. Benfotiamine is a synthetic form of thiamine that seems to be particularly effective for diabetes.
 

Wayne

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Thanks Consuegra for the link to your article, and also the link to the story that piqued your interest in Thiamine. I read the entire story (which is a bit lengthy). Here's a short snippet from that article for anybody interested in how a woman who had been diagnosed with CFS for nine long years discovered she had a thimine deficiency instead, and is leading a normal life today.

Thiamine Deficiency ...
... The interesting thing about thiamine deficiency is that it causes symptoms identical to those described by many people with CFS. According to the Merck Manual, early thiamine deficiency causes fatigue, irritation, poor memory, sleep disturbances, precordial pain (pain over the heart and lower part of the thorax), anorexia (uncontrolled loss of appetite for food), abdominal discomfort, and constipation. I have heard many people diagnosed with CFS complain of these symptoms.

The severe form of thiamine deficiency is called Beri-beri. There are two forms of Beri-Beri, wet beri-beri and dry beri-beri. Wet beri-beri causes problems with the cardiovascular system such as tachycardia, vasodilation and eventually heart failure. Dry beri-beri causes peripheral neurological changes such as pins and needles in the lower extremities, muscle cramps in the calves and eventually footdrop and toedrop. I have heard of these problems occuring in people diagnosed with CFS and before we discovered my thiamine deficiency I had already started developing cardiovascular problems.

I am not suggesting that everyone diagnosed with CFS actually has a thiamine deficiency and I'm certainly not suggesting that daily thiamine injections are a quick-fix for people with CFS. I am just suggesting that it might be worthwhile for people diagnosed with CFS to consider thiamine deficiency, whatever the cause, as a possible problem.

When I first found out about my thiamine deficiency I looked on the Internet and in books for any reference linking CFS to thiamine deficiency. I was amazed that there were none. Has no doctor considered the possibility that some people diagnosed with CFS may have a metabolic disturbance resulting in a thiamine deficiency?

Finding the reason for my illness has answered many question. It explains why graded exercise never helped (the more I did the more thiamine I used up) and rest did help (if I rested what little thiamine I had was preserved). It explains that my illness was not my fault or the fault of my parents. I simply had a vitamin deficiency caused by a metabolic error and it took nine years before a doctor was skilled enough to find it....
 

dannybex

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Thanks Lotus -- and Wayne. (So Wayne...you're still sneakin' over to Prohealth? :) )

Yes, thiamine is a biggie. Although about 9 years of brain fog got in my way, when I was moving to a new apartment three months ago, I found a receipt from 2004, where one of my old docs had prescribed thiamine injections. I had been doing methylb12 too -- and that had really helped back then -- but the thiamine helped calm me down and give me more energy at the same time. I only took it for a couple of months -- the injections do sting -- and back then, even though I couldn't work full time, I took my "health" for granted, (plus, was also taking other supplements), so I forgot about the B1 shots...but that was the last "best" time I had -- for about a year or more -- taking b12 and then b1.

I have a feeling that the reason she has to take so much orally is because of the thiaminase factors that are not only in a lot of foods besides the ones she mentioned, but also created by certain gut bacteria -- they can inhibit and sometimes completely destroy the thiamine content of the food or supplement.

Of course there are other factors, but lack of thiamine can create symptoms almost identical to ME/CFS.
 

Sasha

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Since this is an easy and low risk-experiment, I'll try 1500 mg thiamine per day for a week and report the results.

I'm thinking of doing the same thing but I was going to build up from 300 mg in 300 mg steps - it sounds as though you can overshoot!
 

Sushi

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How about Benfotiamine instead of regular B1? I haven't read the whole article, but wondered about using this form?

Sushi
 

helen1

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That's the form I use, too, the benfo form. I increased mine today and will increase in careful increments. Will report back in a few days too!
 

A.B.

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I'm thinking of doing the same thing but I was going to build up from 300 mg in 300 mg steps - it sounds as though you can overshoot!
Agreed. I will titrate up from 500 mg in 500mg steps.

Also since B1 is water soluble, the therapy should be enhanced by spreading the dose over the day.
 

Sparrow

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How about Benfotiamine instead of regular B1? I haven't read the whole article, but wondered about using this form?

Sushi
I believe that benfotiamine is a fat-soluble form of vitamin B1. That means that it is generally better absorbed by the body, but it also means that it stores up. ...So you might want to be careful about taking too much of it for too long. With the water-soluble kind, it is generally thought that any excess is flushed out with the urine, and that's what makes overdoses less of a big concern there. I would be very cautious about taking this kind of mega-dose of benfotiamine. If you want to try that much B1, a tiny bit of benfotiamine and the rest regular thiamine might be safer. Or at least, I would consult a knowledgeable naturopath about it.
 

dannybex

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dannybex Are you taking the thiamine right now? If so, how much?
And what, if any, positive results are you having?
After about six weeks, my old doc finally called back (he doesn't check his email), and prescribed thiamine shots again.

But those are kind of painful, and only suppose to take them twice a week, so someone else on another forum recommended Source Natural's Coenzymated B1 -- it's the active form of thiamine -- and it's sublingual, so it hopefully gets into the system faster and easier. Only downside is that it's a rather small dosage -- 25mgs, and I think -- emphasize 'think' -- that I need more, but there's only 60 tablets in a bottle, so if I take more...then I could go through a bottle in 2 weeks.

I have noticed a little less pain in my feet at times (less lactate?), and also don't seem to need as much hydrochloric acid caps with my meals. Thiamine (along with zinc, etc., ) is required to produce stomach acid.
 

Sasha

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someone else on another forum recommended Source Natural's Coenzymated B1 -- it's the active form of thiamine -- and it's sublingual, so it hopefully gets into the system faster and easier.

That's something I should have been asking - if there are different kinds, what should we be buying? If coenzymated is the active form, is that the one to go for? Any other issues?
 

Sasha

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Source Natural's Coenzymated B1 -- it's the active form of thiamine -- and it's sublingual, so it hopefully gets into the system faster and easier. Only downside is that it's a rather small dosage -- 25mgs, and I think -- emphasize 'think' -- that I need more, but there's only 60 tablets in a bottle, so if I take more...then I could go through a bottle in 2 weeks.

I just checked their site and I can't find that product (I checked under 'C' for 'Coenzymated' and 'T' for 'thiamine' too!):

http://www.sourcenaturals.com/products/alpha_search/B/

Edit: do you mean the coenzymated b-complex?
 

Dreambirdie

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After about six weeks, my old doc finally called back (he doesn't check his email), and prescribed thiamine shots again.

But those are kind of painful, and only suppose to take them twice a week, so someone else on another forum recommended Source Natural's Coenzymated B1 -- it's the active form of thiamine -- and it's sublingual, so it hopefully gets into the system faster and easier. Only downside is that it's a rather small dosage -- 25mgs, and I think -- emphasize 'think' -- that I need more, but there's only 60 tablets in a bottle, so if I take more...then I could go through a bottle in 2 weeks.

I have noticed a little less pain in my feet at times (less lactate?), and also don't seem to need as much hydrochloric acid caps with my meals. Thiamine (along with zinc, etc., ) is required to produce stomach acid.
Interesting. Thanks Dan, for sharing this info.

After watching Terry Wahls video on her recovery from MS (with a paleo diet and supplements that included B12, B1, and folate), I bought a bottle of the Source Naturals Coenzymated B1, and included one tablet in my daily routine, until I eventually ran out. This was about a year and half ago. I didn't notice much of a change. But also no drastic side effects, like I get when I take just a little too much B12.

How much B1 would you need to take to actually feel a difference? And how do you know if you have a REAL B1 deficiency? There's so many things that claim to help fatigue, but not everyone has the same deficiencies. So just because it's helpful for some, it might not work the same for everyone.
 

dannybex

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Perhaps it is, since it's absorbed in the mouth, and wouldn't encounter the thiaminase (anti-thiamine) enzymes in the foods we're eating or in gut...???