My search for relief from insomnia and fatigue led me to IV treatments of TTFD (tetrahydrofurfuryl disulfide), with promising if not miraculous results.
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.
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.
When this content was published or posted
This content was first published on 2/27/2012 and updated on 1/12/2023.