by Seth Bittker
In recent decades populations of wild bird species in the
Baltic Sea have been dying off in large numbers from a paralytic disease. When some of the birds with signs of this disease
are given thiamine, they rapidly improve.
So it would appear the immediate cause of these large scale population
decreases among the birds of the Baltic is thiamine deficiency [1]. The same
thing appears to be happening to large mammals like elk [2].
Setting aside the question of underlying cause, could it be
another mammal high up the food chain also has many members of its population
suffering from thiamine deficiency? There is no good standardized test for
thiamine deficiency that does not involve supplementing with thiamine. So whether individual humans are somewhat
deficient in thiamine is not obvious.
However, a particular constellation of symptoms was recognized as the
disease “beriberi” before it was understood that the underlying cause was
thiamine deficiency. And what are the
signs of beriberi? The symptoms are
variable but some that have been observed are mental confusion, irritability,
difficulty moving, loss of sensation, loss of muscle function, rashes, involuntary
eye movements, digestive issues, abdominal pain, and sometimes lactic acidosis [3].
Many of these symptoms match the symptoms of some with autism. So one might naturally wonder whether some
cases of autism are in fact unrecognized cases of beriberi and perhaps more
likely that thiamine deficiency could play a role in other cases of autism
depending upon other genetic and environmental factors. A Dr. Luong and Dr. Nguyen previously noticed
this similarity and developed this idea into a paper from 2013 which is
available here [4].
Pulling from their Abstract:
“A relationship between thiamine
status and the development of autism has been established, with thiamine
supplementation exhibiting a beneficial clinical effect on children with
autism. Thiamine may involve in autism via apoptotic factors (transcription
factor p53, Bcl-2, and caspase-3), neurotransmitter systems (serotonin,
acetylcholine, and glutamate), and oxidative stress (prostaglandins,
cyclooxygenase-2, reactive oxygen species, nitric oxide synthase, the reduced
form of nicotinamide adenine dinucleotide phosphate, and mitochondrial
dysfunction). In addition, thiamine has also been implicated in autism via its
effects on basic myelin protein, glycogen synthetase kinase-3β, alpha-1
antitrypsin, and glyoxalase 1.”
A researcher named Derrick Lonsdale found in 2003 that a set
of 8 of 10 children with autism had clinical improvement on suppositories
containing thiamine tetrahydrofurfuryl disulfide (TTFD), a thiamine derivative [5]. There was no control group on this
study. So one should be cautious when interpreting
these results. In addition Lonsdale was
interested in metals excretion – TTFD can serve as a chelator. He found that TTFD increased excretion of
such toxic metals but it also would increase thiamine levels as well.
I have not experimented with TTFD, but Lonsdale’s work did
get me thinking about oral supplementation of thiamine. I tried experimenting with my son on regular
thiamine hydrochloride. I thought there may have been a very modest effect
in terms of increasing his energy but it was not a sizeable effect. However, there are other forms of
thiamine. One lipid soluble form that
has been used with some modest success in diabetic neuropathy is benfotiamine [6].
There are case reports of neuropathy in cases of autism [7]. In addition one symptom of some with autism that
are significantly affected is arm flapping.
It seems to me a person may flap his arms if he is feeling numbness and
he is trying to get blood flowing to reduce the discomfort. For the same reason somebody who is cold may
move his limbs rhythmically. In other
words, I think arm flapping may typically be a sign of neuropathy and that
neuropathy is an under-recognized and often comorbid condition with autism.
My son does not have neuropathy, but we did try benfotiamine
on him. My experience is that on it he
had a significant reduction in irritability, increased cuddliness, and more
energy. I also feel he was mentally
sharper initially but this diminished with higher doses. Another result was he had flatulence some of
which was pungent soon after starting supplementation. In retrospect I take this as a sign that his
digestion was beginning to operate more efficiently and relatedly he may have
been dumping xenobiotics into his bowel when starting benfotiamine but this is
pure speculation on my part.
After about a week on benfotiamine he got a rash and I began
to feel that his mental acuity was leveling off. I found that if I gave him biotin the rash
went away and his mental acuity became sharper again. Biotin and thiamine are both sulfur
containing B-vitamins and there are
genetic diseases where both are involved [8]. My experience with my son suggests to me that
there may be some common pathways with these nutrients. In other words, I think befotiamine
supplementation may exacerbate biotin deficiency. As some may be aware, biotin deficiency is
also sometimes seen in autism [9]. So for this reason I think they should be
taken together when given for autism.
Thus, if you do a trial of benfotiamine, I would include
biotin as well. I am currently giving my
son about 120 mg of benfotiamine per day and 5 mg of biotin per day. He is about 90 pounds. I give these to him in a juice smoothie
because benfotiamine tastes a bit tangy.
You might also consider providing them in something sweet.
In interest of full disclosure when communicating about
benfotiamine in the comment section of a separate post, Agnieska Wroczynska mentioned
that benfotiamine had a positive effect on her child but increased
hyperactivity. So she found it was not
ultimately helpful, and RG reported no positive affect whatsoever. So it is possible that the experience that I
have had with it with my son is highly unusual.
If you do wish to do a trial, as with any other supplement,
start with low doses first to avoid risk and increase modestly if you see
positive effects. I am interested in
others experiences with it and hope if you try it you will leave a comment here
with some color on the results.
I thank Peter Lloyd-Thomas for the opportunity to write this
guest blog and for providing a wonderful forum on autism treatment and autism
research.