After discovering that thiamine (vitamin B1) deficiency might be a factor in my insomnia, fatigue, brain fog, and chocolate/sugar cravings, I began experimenting with different formulations of it. Starting with the usual drugstore stuff, I moved on to two Japanese concoctions and then for a grand finale I tried a series of IV treatments to the tune of $1,700, almost none of it covered by insurance, with promising if not miraculous results.
Why thiamine?
I initially tried thiamine after discovering it is involved in GABA production, an inhibitory neurotransmitter that’s a big factor in sleep. Thiamine is also involved in carbohydrate metabolism — converting food to energy — and I figured out a long time ago that my infuriating chocolate/sugar cravings must be caused by my brain’s inability to process glucose, which is what the brain runs on.
Thiamine deficiency is most commonly associated with alcoholics and diabetics. If you are neither one of those, your doctor won’t consider deficiency as a possibility. Extreme deficiency has recently been implicated in autism (but then, what hasn’t?), dysautonomia, or dysfunction of the autonomic nervous system, and multiple chemical sensitivities, among other things.
Thiamine hydrochloride (HCl), benfotiamine, and tetrahydrofurfuryl disulfide (TTFD)
A post at C for Yourself alerted me to the different types of formulations and their wide variations in quality. (It’s disturbing to think that a lot of nutrient deficiency research is based on crappily manufactured, minimally effective supplements.) Thiamine HCl made me nauseous. Benfotiamine, at 900 mg a day, tripled my energy in about four days, reduced my sugar cravings, made me able to sense my muscles again for the first time in years, improved my brain fog, and rendered my insomnia total.
The TTFD was harder to locate. At first I could only find a topical cream formulated for autistic kids who can’t take pills. As I’ve mentioned elsewhere, a lot of people with longstanding unresolved health problems find themselves on autism websites and forums, because parents and doctors of autistic children have been forced to go far beyond conventional medicine in their search for help for their kids.
Holy cow, it was awful. Did I mention that thiamine is derived from garlic? It took three showers to get the smell off. I did feel safe from vampires for the first time in a long time, though.
Eventually I found 50 mg TTFD tablets online, but couldn’t find any info about dosage ranges except for the bottle’s instructions, and I haven’t paid any attention to that in years.
The doctor’s appointment
When I realized that one of the biggest thiamine researchers, Derrick Lonsdale, was 20 minutes away, I made an appointment with him to see if 1) he thought thiamine deficiency could indeed be a major factor in my symptoms and 2) what the heck dosage I should use.
He said I presented an interesting case, that he uses up to eight tablets a day of the TTFD with his patients, and that IV application is a good way to get your levels up fast. (Here’s a list of the lab tests he ordered and a total rundown of my expenses.)
Advantages of IV administration
As I understand it, the IV dose (he uses 25 mg) is used almost entirely by the body and gets the thiamine where it needs to go faster and in a more uniform application than tablets, which are at the mercy of the vagaries of your digestive system. The TTFD is thus more likely to find its way to your brain faster. I picture a sort of basting of the tissues, but I also don’t really know what I’m talking about and sometimes I doubt the experts do, either.
After the IV sessions I went back to the 50 mg tablets. Dr. Lonsdale said he doesn’t know how much of each is absorbed by the body, and that I’d have to experiment with the dose.
The IV treatments
The IV treatments require at least a day in between each. They take either 30 minutes or three hours apiece, depending on which accompanying nutrient therapy drip you get. I signed up for a three-hour “bag” for the first treatment, but couldn’t sit still that long and left after 2.5 hours. For the remaining treatments I used the smaller “Myer’s cocktail” drip. (Sorry, I lost the list of the ingredients for the two preparations.)
The flophouse clinic is pleasant and quiet and has lots of light. Rows of blue recliners fill two rooms and white chains (for the IV bags) hang from the ceiling on either side of each chair, like a very relaxed slave ship.
The TTFD is shot into the IV from a syringe . It is an odd sensation. For about three minutes my head fills with the smell and taste of garlic-infused melting plastic. One of the nurses told me that other patients describe it as burning rubber.
Observations a week after treatment
- small increase in energy, but not back to what the benfotiamine was doing
- lowered magnesium, as Dr. Lonsdale warns about. Symptoms for me are lowered mood and dry, peeling skin. He advises soaking the feet for 30 minutes in epsom salts, but I just take 400-600 mg of magnesium citrate.
- a little light-headed after each treatment, but not so that I can’t drive
- lowered riboflavin (vitamin B2) levels. B1 and B2 seem to work together and if you’re low in one, you’re often low in the other. My eyes get tired and feel like sandpaper and my lips crack.
- sleep was not adversely affected. After the fifth treatment I slept better, but it only lasted a few days. I had to start taking iron again, which always stops me sleeping, as it was getting so low I couldn’t function. I found a reference in a Science Daily article indicating that thiamine binds to iron, which would be a big problem, but couldn’t find any other citations to back it up.
- chocolate/sugar jonesing was a bit reduced, but not as dramatically as with benfotiamine. The effect wore off within three days after an IV session.
- the abdominal pain I complained about in this post disappeared. I didn’t notice until Dr. Lonsdale asked about it.
I did have two strange experiences in the hours just after the first treatment. At the grocery store I suddenly felt that all the food smells were a lot stronger and more intense. It lasted a few seconds and then was gone. At home it happened again. I’m guessing that it was due to something in the nutritional IV, rather than the TTFD.
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When this content was published or posted
This content was first published on 2/27/2012 and updated on 1/12/2023.
Hi Marjorie,
Thank for this post. I’m dealing with low thiamine & based on my symptoms, I’ve had it for years. I just read your comment from 01/31/17, where you mentioned mold poisoning. I don’t know if you are still replying to these comment, but I’d really appreciate more info on that because it’s come up in my situation.
Thank you!
Two years ago a few people recommended Ritchie Shoemaker’s books to me. I think I read Surviving Mold and Mold Warriors. His patients’ experiences were basically extreme versions of mine. I found a Shoemaker-trained doctor in Chicago, who, based on a 90-minute interview and a big panel of tests, mostly measuring inflammation, agreed that mold was a likely culprit.
Getting an appointment with a Shoemaker doctor is hard because there aren’t many of them and they’re becoming overwhelmed with patients. Shoemaker’s website (survivingmold dot com) and books explain how you can get your own doctor to order the tests and how to read the results.
Some people don’t bother with the labs and instead try a “mold sabbatical” to see how they feel when they are in a place they know is mold-free. You need to do a lot of research before attempting it, though. Most people’s assumptions about mold exposure are VERY wrong.
I followed a protocol of strict avoidance and two toxin binders and improved radically over the next six months. (After seven days I went from less than one hour of sleep a night to five hours.) I’ve since had some very frustrating backsliding due to mold exposures and because I let my iron get WAAAAY too low — a victim of the binders — but I can still sleep and exercise and do my own laundry, cooking, and housekeeping. Also, now that my inflammation is so much better, iron supplements actually work, where before they did nothing and completely stopped me sleeping.
The protocol I follow is actually stricter than Shoemaker’s, but his books are still a good place to start. Hope this helps.
Hi Majorie, Thanks for posting the details of your experiences with thiamine. I’m curious — if the benfotiamine was working for you, why did you give that up, or did you start back on it? It is my second day of taking Allithiamine 50mg, which I decided to try instead of benfotiamine based on some of Dr. Lonsdale’s writings found on the web. Before that, I’d taken 100mg of the HCl form for a few weeks with no obvious effects, though I’ve been sick with a cold and the lingering effects of it. I’m taking it for fatigue and because I have diabetes, hoping to preserve my kidneys, eyes, and brain.
The problem was that it made me completely stop sleeping — I went from two hours of sleep a night to nada. (Many of the health issues turned out to caused by mold poisoning, and if I ever get my act together I will write a post on that.)
This is a really useful and interesting post about what is available regarding thiamine supplementation and IV delivery. In case it is of interest, I wanted to highlight that benfotiamine seems to have positive effects on my son who had an autism diagnosis when he was younger. In case it is of interest, I wrote this up here: http://epiphanyasd.blogspot.com/2016/03/benfotiamine-for-autism.html
Thank you, Seth. The comments on your post are also interesting.
Hi Marjorie,
I wanted to mention Dr. Lonsdale is a indeed great guy, and he permitted me to interview him about TTFD supplementation in autism. In addition he also made a lot of points generally about thiamine in inflammatory disease. I have posted a transcript of the interview here: https://autismrc.com/2016/04/16/autism-research-connections-3-a-conversation-with-dr-derrick-lonsdale/
I realize this is a very old post, and your views may have changed since then, but don’t you think it’s odd that if thiamine deficiency were your problem, and thiamine binds to iron, that you’d then counter the effects of thiamine by reintroducing the iron that the thiamine was binding? My point is that in my experience of cheating iron using cilantro,m and thiamine I’ve been able to clear up a huge amount if health problems. Iron is very toxic and we need very little of it. What usually accounts for anemia is not always iron, though doctors assume it is without actually measuring body tissue iron.
I was definitely a candidate for low iron, but never technically had anemia, just extremely low ferritin, which was the lab result I found had the most correlation to my physical symptoms. However, supplemented iron never seemed to get where it needed to go. I am wondering now if iron supplements stir up the lead deposited in my body during my decade living with lead plumbing.
Please pardon my blunt comment which I preface with acknowledgement of not being 100% sure of this info. I believe the TPP/Carboxylase I.v. dose for deficiency is usually closer to 100mg/ml. If you only got 25mg no wonder it gave little effect. Seems getting the Thiamine “closer” to possibly correcting the deficiency with more careful attention ensuring the Mg. level is being kept shored up is the least you ought to get for that kind of $$$. It is a tangled web though–I’m guessing by now in your quest you are aware of “intractable” (chronic) Mg deficiency, the need for manganese to make Mg able to work etc. and the labrynth of intestinal/gut permiability & delayed food intolerances that make it so awful trying to figure any of this stuff out. Good luck to you. Despite the cost the recliners for getting ivs sound grand. Been getting nutri. Ivs for years for medical problems–gotta say the recliners are something I have fantasized about.
I am not familiar with TPP — I take it it is the coenzyme form of thiamine. I do remember being annoyed that there was only 25 mg of TTFD given at a time, but they said it was because it was so much better absorbed than other forms. Perhaps they had to economize to pay for the blue Barcaloungers. The IV also had 100 mg of thiamine hydrochloride.
I wholeheartedly agree that trying to iron out all these issues makes for a maddening existence.
My latest experiment seems to point to an interaction between vitamin D and thiamine — D3 supplements or even strong sunlight exposure will give me a headache that disappears with thiamine supplementation. Now I just use TTFD pills, which seem to work fine, but I don’t think I have a leaky gut problem so YMMV.
That definitely matches my experience. I wonder what else that coenzyme works with.
To Marjorie,
I find you thiamine deficiency interesting. I found I had two deficiencies magnesium and thiamine. Then I found out they are coenzyme related. Thiamine depends on magnesium to function in the body.
http://www.ncbi.nlm.nih.gov/pubmed/4050546