Trying to understand TMAU

Trimethylaminuria
#1

I am a 57 year old female and have had alternating foul odors since the age of 24. I have been to sooo many doctors, I can’t even begin to calculate the money I have spent, to have everyone of them send me to see mental health counselors. After years of research on the internet I find I am not nuts!!!


Like I didn’t already know that.
I have had a hard time all my life trying to raise my children and work, social enviroments have been and always will be my biggest fear. I didn’t at first think I had tma because of the fish odor description, but now I understand that I most likely do. I don’t think I have ever smelled like any type of fish but have always had uncontrollable odors, different odor, different days. My odors have always been urine odor, bowel odor (alot of times resembling dog poo),
stinky feet (exreme, but not to often), vaginal odor (like nasty need to douche bad odor), foul breath, (always, always)
I’m trying to understand what I’m supposed to do now.
I want to go to public places without the fear of the comments from strangers and the wrinkling noses and so on. Where can I possibly go to diagnois this disorder??
The dr.'s I see now r the same kind I have seen my whole life.
If I can share this feeling, because it is eating my insides up: WHY didn’t my family and friends tell me yes, I do smell this, let me go to the dr. with you and tell them. At least someone could have made them understand I didn’t just look well groomed, I was well overcleaned.
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#2

If you are eating a big meal Friday and Saturday night, the tma is probably still in your system until Wednesday because it takes about 3 days for food to travel throughout your digestive track. Maybe it would be better to eat a small amount of meat daily and take charcoal, mushroom extracts and cornstarch to absorb the tma.Can’t hurt to try, right?

#3

sunshine1981,
From what I’ve been reading there is no cure for our disorder. I am learning more and more by reading other post from people suffering just as we are. Even Wikipedia speaks of a diet restricted treatment with added supplements like copper chlorophyllin and charcoal. I’m going to heed their advice and try some of this. Even if it means just stinking less, then I’m all for the effort of it.
Read the post before yours and you’ll see that we are all we have for any type of odor releif remedies since there seems to be no medical cure. As each of us continue to research and try things, who knows maybe one of us will become famous for finding the cure. You never know, LOL!!!
God Bless,
Little Bit

#4

Hi Little Bit,
I really understand how you feel, 'cause I’ve suffered for 40years. From 13, I had bad vaginal odours,foot odours & used to walk home at lunch to change my underwear & wash myself. I was suffering, I know my mum had letters from school about my odours, but she just to shout at me & get me take 2 baths a day. In my 20’s I lost weight - 7stone in a year, 'cause I was overweight from a toddler. But despite that & then only eating 1 meal a day, the smells were’nt always under control.! I got fecal smells, and occasional urine smells. My smells come out like a big cloud of gas - I’ve not ‘farted’. The smell can fill the entire room so its very embarrassing. I wear pads, and the underwear is clean/no leakage.
Doctors don’t seem to know about TMAU, and most of them assume you’re imagining it, 'cause of course you may have had problem at work that day, but when you get to see the doctor there’s no smell. Some people cannot smell themselves, and their family can’t smell it either. I did have a FM03 blood test at one time & that showed up the inherited TMAU.
Last weekend I undertook a urine test. Decided to pay for it myself 'cause I’d like to have some written confirmation myself, and then be able to take that to the current doctor I have. I paid £193 including postage both ways. Mulhaven Laboratory are in UK, but they do mail order it you’re overseas. The thing is they do the
test FREE on the NHS via the same laboratory, but then you have to get the GP to agree to arrange the test for you…Anyway you get the kit in the post, and eat choline rich foods for 24hrs or more before taking the test, then you put urine into the tube, and there’s a small tube of acid - necessary for this particular test, which you put in with the urine, then you post it back to them and then it goes to the specialist in Sheffield & you get the results in about 4 weeks time.
I ate 2 eggs & large tin of baked beans (don’t like them but they are rich in choline), on Friday dinner time, Saturday morning I had 2 slices of toast with some tinned salmon, lunchtime I had some icecream, and dinner I had fish/chips/peas, and more icecream, I also had coffee to drink instead of tea. Sunday morning I took the urine test.
For TMAU we need to avoid lots of foods, fish, eggs, & liver & red meat if you like those, chicken ,turkey & pork are lower in choline, its also in bread - so white bread is better for lower level, and full milk has slightly less than skimmed milk, and its also in ice cream, coffee, chocolate… I have stopped eating green veg, beans etc, and banans and melon have a higher level too.
There are a few other websites with forums for TMAU sufferers now, so search them out, by reading about others & how they cope it’ll help you. I did look in a book shop but found no books on this subject, yesterday I noticed someone had written their story & its sold as an e book.
At present I’m struggling to hold down a job, & hear people complaining about me, last week I actually brought the subject up but they denied that I smell… & only smell my nice perfume… embarrassment - but also fear of being accused/found out of bullying tactics with an illness.!
I eat so little during the week really that my health is suffering. But I’m trying to prevent the big rotten meat// manure smells escaping at work. I eat cereal or toast for breakfast, nothing througout the day, and then a chicken sandwich & some fruit at night. Friday & Saturday nights I cook myself a roast chicken dinner & allow myself to eat more. Sunday its back to just a sandwich, Because TMAU is supposed to smell like rotten fish as apposed to fresh fish its dfficult to understand what the smell is. Understandbly at first we don’t think that can be what we’ve got 'cause of the 'fish odour ’ description, but many people also drescribe various smells attribued to this condition.
You Tube has several videos from TV show about TMAU and I suggest you have a look, its certainly an eye opener, and you know you’re not alone.

#5

Does anyone know any ways of beating this horrible condition. Is there anyone in this group that has found ways to get rid of the odors? Can you PLEASE share this information. Thanks and God Bless!!!

#6

Hi Sunshine & Little Bit,
Yes there is no cure, but it can be treated. Firstly we do need our Doctor to understand/know about TMAU being a true medical condition & not something we’re imagining & they’ve never heard of it/smelt it either.
Some people get better treatment from their Doctor & after the diagnosis get a course of anti-biotics, I’ve read they take antibiotics every few months on prescription, & that can help in some cases, then people take charcoal tablets after eating, chlorophyl & mushroom extract tablets are tried too.
Although there are more TMAU sufferers in the USA, we have a UK website now too, and a couple of good
specialists in the UK - but you need a doctor’s referral to get to attend their clinic - and most of us have trouble with our doctors!
Watching TMAU websties on the internet is the best way of trying to help ourselves, read what other people are going through. Some people have’nt had any success with the diet, some have’nt had any success from the tablets - which can be expensive. Or we pay to go privately to other types of doctor and they don’t know about TMAU & don’t diagnose us either.
Its like life is flawed. Because I can try & forget about my condition and try & control it the best I can & get some bit of confidence back and try & fit into ‘nomal lifestyle’. BUT this condition is always lurking in the background & like a ‘skeleton in the closet’ it’ll suddenly make me stink the place out. Never know when its going to be a bad day (smelly day), even though I’m sticking to the diet.