Trimethylaminuria [TMAU] Awareness and Support
Trimethylaminuria or TMAU for short [also known as fish (mal)odor syndrome] is a lesser known but common liver disorder/disability in many people internationally. To put in layman's terms, TMAU carriers have a not-so-pleasant odor that range from smelling like raw fish to dry urine and so forth. No matter how clean and/or hygienic a carrier is the odor will still be present. In addition, TMAU symptoms [from what I've observed] do not usually show itself to the carrier until teen and early adult years making it hard for the person to diagnose. To this day there is no cure or realiable treatment of TMAU making life for TMAU carriers stressful to say in the least.
To educate yourself and others more, please visit this list of references.
I myself am a carrier but fortunately I do not have the worst case yet since I am in my early twenties. Since I avoid seafood, egg yolk, and products with soy ingrediants, I think it is only noticable once I break even a little sweat. So far it has not majorly impact my life but when I do notice other people hold their nose or give me a demeaning look after I sweat, I do get depressed at times.
People like my mother become antisocial at work and do not dare to go to social events because of their TMAU symptoms. Also many people end up having to retire early and apply for disability.
I created this thread in order to spread the word and for people with these experiences to release their feelings but to also deal with them in a positive way.
@KuroYouri
Thank you so much for starting this thread, lovely, this was a condition that I was unaware of, so it's been fantastic to learn more about it and what it's like for you to suffer with it. It must be so scary for you, knowing that it could worsen as you get older and all the effects that it will end up having on your life.
You've said that you get depressed when you know that people are judging you for your odour, and it must be so frustrating and embarassing for you, I can't even begin to imagine. I'm really proud of you for opening up and helping educate others about it.
There are 2 types of TMAU : TMAU1 is genetic deficiency, and TMAU2 is TMA overload.
Someone with TMAU1, the genetic disorder, has a deficiency in the FMO3 enzyme which oxidizes the odor causing TMA to non-odorous TMA-oxide.
Someone with TMAU2, or TMA overload, is generating too much TMA by their gut flora.
TMA (Trimethylamine) is an organic compound that has a strong "fishy" odor in low concentrations and an ammonia-like odor at higher concentrations. Regardless of the pathway utilized, TMA overload is a nitrogenous waste by-product of the deficiency of the FMO3 enzymes or other gut microbiome dysbiosis.
Certain strains of probiotics can metabolize and use the nitrogenous waste buildup as nutrients. This process helps to eliminate the source of the odor. These probiotic microbial strains of beneficial bacteria include: S.thermophilus(KB19), L.acidophilus (KB27) and B.longum (KB31).
The mechanism of these beneficial bacteria work by regulating build up of the odorous nitrogenous waste. The nitrogenous waste fed probiotic microbes, are then eliminated from the body by normal excretion.
Here is a brand of Probiotic Enzymes which include the beneficial strains of S.thermophilus(KB19), L.acidophilus (KB27) and B.longum (KB31). Anecdotal evidence has shown a reduction in odor and improvement in skin complexion.