I mentioned in my last post, about the roots of chronic pain, that in recovery from that you may want to consider chronic depletion levels of certain key nutrients in the body. On this topic, I happened upon reference to chronic deficiency of B1 vitamin (thiamine) in Trudy Scott’s excellent blog Every Woman Over 29 (which has thrown up just so many helpful healing tactics for me), towards the end of last year. She points out “Thiamine deficiency is very under-rated and under-recognized, and can have far reaching ramifications. And a magnesium deficiency and high dose magnesium can actually cause a thiamine deficiency. There are also many other causes of thiamine deficiency that may not be on your radar: a high carb/processed food/sugar diet, coffee, tea, alcohol, genetics, environmental toxins, medications, celiac disease, leaky gut, bariatric surgery and malabsorption” (Fatigue, sleep disorders, depression, anxiety, fibromyalgia and cardiac troubles as the expression of a classic mild thiamine deficiency).
Those symptoms aren’t all (by a long stretch). I learned, its a grosely underrated, largely unrecognised deficiency in the western world and its symptoms and cues look a lot like certain chronic conditions that I have and which, if you are reading this, you may have too – examples being fibromyalgia, PoTs and dysautonomia, chronic fatigue syndrome, peripheral neuropathy, brain fog, trigeminal neuralgia, EMF sensitivity, allodynia, long-covid, diabetes, lactic acidosis, tinnitus and other nerve issues to ears and eyes etc, memory issues, stress fatigue and anxiety or panic attacks, digestive issues such as GERD and low hydrochloric acid, exercise intolerance, tender muscles or cramping, Reynaud’s, interstitial cystitis and bladder issues, sleep issues including sleep apnea and aur hunger, oestrogen dominance…etc. See this article on Health Rising for the spark of interest B1 has generated in the chronic pain and fatigue community and Dr Berg’s video below for a comprehensive outline of other conditions it can provoke or mimic. By the way, depletion won’t show up in the standard blood tests!
So I got into researching the topic and came across two individuals who talk about B1 deficiencies extensively. In fact, its hard to search the subject without coming across the name of Dr Derek Lonsdale as he has pioneered research into the effects of chronic B1 deficiency, including linking it with Sudden Infant Death Syndrome (three of his papers are cited by The World Health Organisation), various chronic conditions and autism. The other person I quickly discovered to be talking about this subject is UK-based functional nutritionist Elliot Overton.
It is Dr Lonsdale who first came up with the B1 mega-dose protocol in order to tackle what he regards as a form of “high calorie malnutrition” running amok in the Western world. In other words, though people have never been better fed, they are often chronically malnourished because of a lack of what is a kind of key-holder nutrient in the body, essential for many other nutrients to unlock their processes. In other words, without B1 in the appropriate amounts, all the other B vitamins and certain other processes flounder and, in our western diet, we not only fail to take in enough but also lead the kind of lives that actively deplete B1. The result is a wide-array of symptoms and many chronic conditions, including those that I cover in this blog such as fibromyalgia, peripheral neuropathy and dysautonomia.
Some people are more prone to a B1 deficiency from birth (issues related to the MTHFR gene, which has strong links with autism) whilst factors such as stress, excess refined carbs incl. sugar or excess alcohol consumption can set the process off from scratch, or even tip a pre-existing tendency for B1 deficiency over the limit, in such a wholesale way that the body never fully recovers without B1 intervention (even after the stress or trigger has passed). For instance this may typically occur following what Overton refers to as a period of university “binge drinking” (bringing to mind my own binge years, accompanied by high-stressors). Its easy to speculate how lifestyle habits and repeated stresses or traumas could set a process of chronic B1 deficiency into motion, triggering off worse and worse manifestations of its side-effects with each turn of the screw, as I now speculate may have happened to me over the course of my first few decades, leading to my health crash. The good news is that, even if there is a genetic predisposition, Lonsdale maintains that B1 therapy as he describes can still exert an epigenetic influence to help reverse these chronic issues.
Without B1, the body is left without adequate protection from common environmental factors, such as those from certain food ingredients, chemicals and toxins, EMFs or indeed any other “everyday” stressor that someone with more adequate levels of B1 may remain unaffected by. Meanwhile, some of those stressors (including EMFs, vaccinations and certain meds including antibiotics, see Dr Berg’s video below), liver issues, gastric bypass and of course aging seem to be able to further deplete B1 levels, feeding the problem. In essence, B1 deficiency is a form of beriberi (which translates as “I cant I cant”…such an apt tagline for how it feels to live with a chronic condition), leaving you feeling too weak or just too systemically overwhelmed to get on with your life in the normal fashion.
I will now refer you to a whole array of useful articles and videos that will do a far better job of describing what B1 deficiency looks like symptomatically and how to tackle it but, in summary, it all comes back to a fundamental lack of crucial energy at the cellular level (the mitocondria are tired out!), which then impacts either the central/peripheral nervous system, the heart/circulatory system or the gastrointestinal system (and in some people, myself included, all three). If this resonates with you, I suggest you at least dive into some of the video materials that I have attached further down the page, being the most easily accessible and easy to digest in small bites.
If you want to first explore the articles of Dr Lonsdale you can dive in here.
The form of B1 he advocates is Thiamine tetrahydrofurfuryl disulfide or TTFD (see below for where to purchase this) which, in person-specific dose, may act like a magic switch in the cellular behaviour of the body, not because they are filling a nutritial gap like you migth take a vitamin C supplement so much as that they are bombarding the body as though BI was a targetted drug, or in his words:
“The completely non-toxic use of TTFD depends merely on its ability to introduce thiamine into the cells of the body that require its magic. Under these circumstances, the big doses of thiamine are acting like a pharmaceutical by stimulating the missing action. We are not dealing with simple vitamin replacement” (About TTFD: a thiamine derivative ).
In the same article, he talks about why TTFD is a more targeted and effective approach than taking one of the other forms of B1 that are widely available.
I have also found Elliot Overton’s material particularly accessible as I embark on my own experiments with B1. Here are some links to his YouTube videos and articles explaining all. I then recommend you do your own research, using these, to decide for yourself if this resonates with your conditions.
Mega-dose Thiamine: Beyond addressing deficiency
Vitamin B1 (Thiamine) Deficiency, Neurological Dysfunction & Disease
Vitamin B1 Deficiency Epidemic: Elliot Overton interviewed
Managing Side Effects of Thiamine Supplementation: The Paradoxical Reaction
and then continue exploring his channel for more on this topic.
Mega-dose Thiamine: Beyond addressing deficiency as above, transcript
Thiamine, Fibromyalgia and Chronic Pain
Thiamine for EMF Sensitivity
Thiamine for nerve damage, trigeminal damage and hearing loss
All of these and more can be found on his website EO Nutrition https://www.eonutrition.co.uk.
Also very useful, videos from Dr Berg:
TTFD is more difficult to get hold of than some of the other forms of B1 and the one that is often available contains fillers that may aggravate more sensitive individuals. To fill this gap, Overton has formed his own company to manufacture a version of TTFD, without fillers, called Thiamax, which is what I am taking in combination with two other forms (another bioavailable synthetic form called Benfotiamine plus the most common type thiamin hydrochloride).
You can order THIAMAX here https://www.objectivenutrients.com/products/thiamax-uk/ (I have no affiliation but this is where I get it).
The reason I am combining more than one type of B1 is to approach the potential deficiency from all sides and to ease my body into the protocol. It is a method suggested by Overton in a document he has produced, Thiamine Protocols and Nutrient Interactions (order here) outlining his recommendations for how to approach each of several chronic conditions, which I highly recommend if you are considering this rather than going it alone. The document covers different protocols for sensitive and non-sensitive individuals and other cofactors that may need to be considered as well as a mega-dose protocol for those who want to try such an approach. He introduces the contents of the pack here. Whilst you could just try TTFD and see what happens, I will say there are certain key things you need to take into consideration such as considering whether you need to also boost other B vitamins to support B1 if the protocol is going to work for you, and avoiding drinks that contain tannins when you are dosing since these can attach to B1 in the gut, therefore do your thorough research using these resources before starting (it won’t take long and is not complicated to understand).
It is also well reported that some people may experience a “paradox reaction” to the protocol, as in, they get worse before they get better and its important to know what this may look like and how to handle it (all covered in the above resources). This is not the same as deciding to give up at the first hurdle, as Dr Lonsdale discusses in the comments attached to his articles.
I have been building up to a mega-dose approach myself for just over a month now and my own paradox reactions have been very mild, enabling me to increase my doses steadily after a few days of adjustment.
Over the course of that time I have seen a remarkable upsurge in robustness and sustainable energy, including days when I have felt almost like an old version of myself from many years ago. During that month, I have walked up hills without need to pause half way (and with no adverse consequences), coped with Christmas and made a king-sized patchwork quilt over the course of an intensive week’s worth of cutting-out and sewing, which would have been unthinkable a few months ago. At the moment, I am having one of my pain dips but it is the first I have had for several weeks, provoked by extra cold weather, plus my PoTs symptoms have significantly allayed…before Christmas, I was having low blood pressure episodes every day and now it has been 3 or 4 weeks since this was a significant problem!
So its still the early stage of my B1 experiment, Rome wasn’t built in a day (certainly not when it took so many years to get to where I am) but I am quietly optimistic and keeping my eyes and ears open for further research, articles and videos on this topic as I strive to build a more coherent picture of ways B1 may have contributed, perhaps significantly, to years of chronic health strife. One thread I am certainly curious about, discussed by Overton, is whether peripheral and other neuropathy may have been at the very root of my developing fibromyalgia as I had symptoms of this predating my “crash” by at least ten years, but I will share more on that topic in another post.
FOR MY FIRST UPDATE of this protocol, almost 6 months in, see my follow-up post HERE.
FOR A FURTHER UPDATE at 10 months including some issues experienced with high levels of sulphur in these supplements and how I modified the protocol, see HERE.
Disclaimer: This blog, it’s content and any material linked to it are presented for autobiographical, general interest and anecdotal purposes only. They are not a substitute for medical advice, diagnosis, treatment, or prescribing. This article does not constitute a recommendation or lifestyle advice. Opinions are my own based on personal experience.Any links and information shared are for your own assessement and research purposes, I have no affiliation with any of the attached information sources and share them as point of interest, with no recommendation implied. You should check all health-related supplement and other protocols with your medical doctor before proceeding. Please seek medical advice from a professional if you are experiencing any symptoms or before you change your diet, your nutrients, your habits or anything else.