I’m a 29-year-old male who has experienced a vast umbrella of odd symptoms over the last three years, including several urological and sexual capacity symptoms. Only a few months ago did I discover the relevance of thiamine in all of my issues. All of my problems began at the age of 27 years old. I was drinking three to seven cups of coffee per weekday and binge drinking alcohol one to two nights on most weekends. Despite this, I was and am still a very fit, muscular, and lean individual. If I were to describe all of my health problems to a stranger, they’d be very surprised to hear that I was dealing with such things given my healthy appearance.
Urological Symptoms and Reduced Sexual Capacity
The seemingly random downward spiral in my health began in October 2019. I remember being alarmed as I started to feel some odd urological symptoms. I felt numbness and burning in my penis, pain with ejaculation, erectile dysfunction, altered sense of ejaculation, and more. As you can imagine, as a 27-year-old male who is still in his reproductive years this was very troubling.
I went to a urologist and without doing any testing, they told me I had prostatitis. I was convinced for the longest time that I had something called Chronic Pelvic Pain Syndrome (CPPS), which is a poorly understood condition as well. I had all of the lab work that one would get done including an STI screening, hormonal panel, CBC, etc. I had no STIs, my testosterone was north of 800 ng/dl and all my other health markers were very well in range. On paper, I looked extremely healthy.
At the same exact time that I developed urological symptoms, I started to experience some very odd gastrointestinal symptoms as well. I’d experience extremely high levels of abdominal distention even after eating the smallest portion of food. I’ve always been into fitness and counting my calories therefore I knew it wasn’t because I was eating too much food. I’d also find myself constantly needing to burp, had reflux and I felt like food was just sitting in my stomach. I sort of ignored the GI symptoms a bit because the urological ones were so much more at the forefront of my brain.
Fatigue, Brain Fog, and Muscle Fasciculations
Three months later, I started to develop extreme levels of fatigue. A feeling of being “tired behind my eyes” and having no motivation to do anything. Just focusing on a task or even socializing with people became extremely difficult. Around this time, I also developed muscle fasciculations throughout my entire body seemingly at random. They weren’t painful, but just very odd. We’ve all experienced the occasional eyelid twitch, but this was way different.
Other Odd Symptoms
Other symptoms I’d experienced during the last three years included a hand tremor, feeling more “clumsy” than normal, anxiety, depression, SIBO, joint pain, muscle pains, random tingling and burning sensations. I had one panic attack, developed laryngopharyngeal reflux, and more.
My symptoms would wax and wane seemingly at random. I remember I tried cutting out alcohol and any form of caffeine for three months thinking that would help. Although it didn’t hurt, it didn’t completely resolve any of my issues. I also tried water fasting for three days and going gluten-free for a month.
Throughout the last three years, I’ve learned an exceptional amount about health, longevity, supplementation, etc. At one point, I became extremely fascinated by the process of methylation and was trying to see how various genetic polymorphisms may be playing into my issues (MTHFR in particular.). I knew I didn’t just have prostatitis or CPPS because it made no sense to me that all of a sudden all these different systems of my body were negatively affected (neurological, gastrointestinal, urological).
Then randomly, one day I stumbled upon one of Elliot Overton’s videos on thiamine when browsing Reddit. I must say that at this point I had never heard of anyone discussing thiamine. All of the information regarding B vitamins online was generally focused on B9 and B12. I binge-watched most of Elliot’s videos regarding thiamine in the course of a day. So many things started to make sense and I finally felt like I potentially had an explanation for all of my odd symptoms. I ordered TTFD fairly shortly after that.
The Path to Recovery
Of course, me being me I didn’t go “low and slow”. I started with a dose of 200 mg TTFD per day. On the second day of 200 mg TTFD, I remember feeling human again. It was as if someone gave me Adderall. I had an abundance of mental energy, I felt incredibly sharp, focused, relaxed and my ability to socialize with people improved tremendously. When I would walk around, I felt “connected” to people again. I don’t know how else to describe it. There was no need for my typical coffee when feeling this way.
On top of this, I noticed that my libido and erectile quality had massively improved. I was able to get aroused incredibly easily without any manual stimulation. I also noticed that the muscle fasciculations had reduced tremendously in frequency and were far less noticeable. This fell in line with the hypothesis of all these health issues being interrelated.
Unfortunately, this limitless pill feeling didn’t last. I noticed that despite the tremendous improvement experienced in those two days, my symptoms would constantly fluctuate. I remember I had some GI disturbances when I continued the 200 mg TTFD dose.
This is where I decided to become extremely detailed in my supplementation log. I’m highly analytical in nature and therefore of course I developed a spreadsheet where I would log my intake of all supplemental forms of B vitamins and what quantity I was taking. I would make notes regarding how I felt each day, my libido, the quality of my sleep, and anything else that may be relevant. I started digging more into Elliot’s videos, learning about the paradoxical effect, what each symptom may mean, etc.
At this moment, this is still a puzzle I’m trying to figure out. There are times in my supplementation with TTFD that I feel like I’m truly on the “limitless pill”. I’m a completely different person and it’s apparent to everyone around me. Things that would normally seem like a big deal were no longer a big deal.
One big breakthrough that I did have was that I realized that I may have gone too hard too fast with the TTFD. I was able to achieve the same level of success after bringing the dosage back down to 50-100 mg. I’ve also experimented with some different forms of thiamine including Sulbutiamine and Benfotiamine, although I’m not sure I’d say I’ve responded as well to those forms.
Diet, Medications, and Exercise
Although I eliminated foods with gluten for a period, I observed no noticeable change when I removed it from my diet. So I am back to eating breads and grains. If I had to give a rough macronutrient breakdown, I’d say my diet consists of approximately 150 g protein, 70 g fat, 300 g carbohydrates. This varies a lot day to day. I don’t go as far as tracking my macronutrients these days but I think this is a decent estimate. I definitely grew up on white rice and probably a generally higher carbohydrate diet. I wouldn’t say my carbohydrate sources are the healthiest, mostly bread and white rice.
I have really tried to minimize caffeine and alcohol intake. I may drink two to four cups of coffee per week max. I would like to eliminate it entirely because I feel like it does nothing but mask my symptoms and I know that genetically I have a SNP that causes me to be a slow metabolizer of caffeine. I am also trying to abstain from alcohol but it’s difficult and that definitely fluctuates. I’d say generally two nights per week I have 2-3 drinks for a total of 4-6 drinks.
I take no medications except Cialis on occasion.
I work out 3-4 days per week. It consists of a moderate volume of lifting weights and 20-45 minutes of low-moderate intensity cardio each time.
Every now and then I’ll take some BCAAs that have some sodium, potassium and a little bit of B6 as Pyridoxine HCl in each scoop. I only just started taking a whey protein supplement for the first time in ages. Maybe a scoop per day.
These are the supplements I have been taking.
- B Complex: Originally started with Thorne’s Basic B and switched to Thiavite.
- TTFD – 100 mg per day
- Vitamin C: 500 mg as Ascorbic Acid/ 75 mg citrus bioflavonoids per day.
- Vitamin D: I used to take more but lately only 10,000 – 15,000 IU per week. I live in Florida.
- NAC: 500 mg – 1000 mg: I’ve cycled this off and on. I heard that sluggishness and unrefreshing sleep can be due to low glutathione levels and that this could help. I’ve also heard it’s good for your liver health, which is why I originally started taking it.
- Magnesium Bisglycinate: 300 – 450 mg
- Creatine: 5 grams
- EPA: 4 grams
- Seed Probiotic
Current Status and Remaining Issues
My current symptoms wax and wane and are as follows: fatigue, unrefreshing sleep, low libido, variable erectile quality, neuropathy (burning feet and numbness in my forearm) and muscle fasciculations. My GI-related issues are pretty much gone.
I feel like I’m on the cusp of figuring this out but it’s a bit tricky to get everything in the right balance, especially with a lack of testing. When I look back on my life, I definitely think there’s some genetic aspect to this considering I can’t even remember when my brain felt as good as it did during those first few days of TTFD. Not to mention some of those lifestyle factors like excessive coffee consumption and weekend alcohol binges.
Just thought I would share in case this could help anyone else out there. Would also love to know if anyone has any advice.
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Curious if you’ve looked into The Root Cause Protocol (Morley Robbins). I have essentially merged Thiamine correction with the balancing of iron, copper and magnesium. My healing journey has been wildly successful.
Thanks for sharing, we have very similar experiences and backgrounds. Similar to yourself I look very fit and healthy on the outside (6ft2 and 170lbs) but on the inside my health has been a trainwreck.
I also overconsumed sugar/carbs and binged on coffee and alcohol throughout my 20’s and 30’s. I developed severe panic disorder, intense fatigue, muscle fasciculations and cramping, POTS, eczema, tingling and numbness up and down my arm and back, among other symptoms. I quit alcohol and coffee. I also tried plant based eating thinking it would be the healthiest route and everything got worse.
So then I tried the paleolithic-ketogenic diet (PKD) under the guidance of the paleomedicina clinic out of Hungary. It’s essentially a diet comprised of ruminant meat, salt, and water. Fat to protein ratio is 2:1 and I’m consuming maybe 500grams of meat a day. After doing this diet for the last 2 months I’m happy to say that almost all of my symptoms have improved dramatically; anxiety is very low, tingling/numbness is gone, POTS is gone and I can do gym workouts again, skin is clear with no itchyness.
But the fasciculations and cramping are as bad as they’ve ever been and my fatigue is still fairly bad. I’ve been to several neurologists and they rule out the bad stuff and label it benign, which isn’t that helpful as I’m assuming some nutrient or process in my body is deficient.
I recently stumbled upon Elliots work as well and I think for people like us, who have a history of consuming large amounts of alcohol and coffee, the thiamine link makes a lot of sense. Also my organic acid test results show b vitamin deficiencies and mitochondrial dysfunction. I’m on the second phase of Elliots thiamine megadose protocol and thankfully my body hasn’t reacted negatively to it thus far. I plan to keep increasing to the maximum dose which is roughly 1600mg, for several months if necessary. I suspect it will take time for the machinery of my body to recover and properly utilize the nutrients I’m now providing, so I’ll be patient with the thiamine and track my results as I go.
There’s also a chris masterjohn video on youtube where he runs through his algorithm for muscle twitching causes, for him beta alanine and potassium fixed it. If thiamine doesn’t resolve the issues then I will keep trying other things.
Nice write up.
In addition to your current protocols, have you considered some breath work?
There’s an idea of balancing out the sympathetic and parasympathetic systems – great videos on YouTube.
We all generally (here in the West) run our lives at pace and should make more effort on our breathing, for the body to recuperate.
I would recommend exploring oxalates (also discussed by Elliot Overton) and the work of Susan Owens and her brilliant Trying Low Oxalate Group. It is worth exploring.
I am sorry you are going through this, I was really surprised to read this blog because it matches with most of my symptoms. I am still struggling to find the right solution.
I am 32 years old, my journey started at 29 years around the same time frame oct 2019, my sexual function (erection and ejaculation) was badly impaired. Blood results showed three issues
1) Subclinical hypothyroidism
2) Low platelets (hematologist couldn’t find out the cause – assumed it was idiopathic)
3) Low vitaminD3 (12.8)
Doctors started treating me for low vitaminD3 and thyroid, I felt better 30% but it didn’t last for long. Around Nov 2020, I started developing intense burning pain from lower back, all the way to both my legs. Initially doctors thought that it was as a result of disc herniation but after 10 months of chiropractic and physical therapy – not much change in my burning pain – I confirmed that burning pain was not as a result of disc herniation.
Around the time my burning pain was intense (nov 2020), my gut health also got really worse constipation, bloating, chronic bad breadth etc.,
Doctors were not helping – so I started researching trying different diet changes, lifestyle interventions, chiropractic and acupuncture. I am ~20% better, still struggling with most of the problems.
As part of the research, I found that most of the healing happens during sleep. I know my sleep quality was not good – so I started trying different things to improve my sleep quality. While doing so I found this protocol – https://drgominak.com/rightsleep-method/ which I have been following since Nov 2021. Read about right sleep protocol – you are not supposed to be taking a random D3 dosage – it is a good idea to test and ensure you d3 level is in the optimal range 60-80.
Dr G has this theory for some people prolonged vitaminD3 deficiency if addressed only using D3 without high dose B vitamins will mess up the system. I suspect that is what has happened to me. Because I didn’t have any issues with nervous system before Oct 2019.
I am kind of in the same situation as you – while researching extensively I found out about Thiamine deficiency and this website. I am on right sleep protocol but not Elliot Overton’s thiamine protocol. I am also thinking something is wrong with me in the methylation or some gene issue which is resulting in depleting my body of some vitamins/nutrients which is resulting in all these problems.
Every day has been a battle – below specified are the supplements which I am taking right now
1) VitaminD3 – 7000IU
2) Fish Oil
3) VitaminBComplex50 – 1
4) Multivitmain – 1.5
5) Milk Thistle
6) Vitamin-B12 (methylated)
I am thinking about including lions mane mushroom as well. Sorry about the long message – lets keep collaborating – so we can help each other with things which are working and not working.
Thank you for your response! I think our cases differ a bit.
I know for a fact that I don’t and didn’t have a Vitamin D deficiency. My levels were > 60 ng / mL. I also have had a full thyroid panel with no issues.
As far as sleep goes, my sleep was REALLY bad prior to thiamine supplementation. I wasn’t able to sleep throughout the night without waking up. I couldn’t get into deep sleep. I almost never dreamed. When I started supplementing with thiamine, my sleep quality dramatically improved and I started waking up refreshed again.
I’ve actually taken lion’s mane a while back but it kills my libido therefore I stopped taking it. Not everyone has this side effect, but this was my experience as it does seem to be a very mild 5-alpha reductase inhibitor.
I think in my case, it’s definitely thiamine related. At the time I developed these issues, I was really abusing coffee and drinking too much alcohol on the weekends. TTFD has been a game changer. I take a low dose of tadalafil to address any erectile issues.
One thing I realized since I started tracking my diet through Cronometer is that my potassium was extremely low. I’ve since corrected this. I’m also now experimenting with adding in benfotiamine and ramping it up to see how I respond. I’ll keep you posted.
Check out manganese. It’s for energy and sex hormones, among other things.