Bad urine odour, how can i find the cause?

[jamienoble]

Im 30 years old and i have been sick for many many years and i still don't know what the problem is. It feels so hopeless, i have almost given up ever living a normal life.

One of the symptoms i have is bad body and urine odour.
I rarely notice any big smell when i pee but afterwards smelling the crotch area it smells beyond awful, like rotten fish or something.

A few years ago i did a Trimethylaminuria (TMAU) urine test, the doctors simply smell the urine test and decide.
First they told me that i had this disease but 2 weeks afterwards they changed their mind.
But the fact that they were so unsure is not a coincidence, my smell is caused by something in my body that also causes all my other symptoms (Mental problems, pale skin-colour, fatigue, dry hair and possibly bad breath). And just to be clear, i definitely don't have TMAU, those people smell alot worse then me.

I asked them to help me to find out why my urine smell so bad because this could be a very valuable clue to what disease i have. There is something in my urine that should not be there or there are high levels of something, i need to know what.
Just because i dont have TMAU doesn't mean i dont have a disease affecting my body odour.
But they basically told me that they dont know what to look for so they could not help me.

Is there anyone who has any suggestions on how i can find the cause to the bad smell?
Is there a lab or a doctor somewhere on the planet that can help?

Thanks alot for your help

 

[xrayspex]

some people get it after eating fish
you could try cranberry tablets or charcoal,and experiment with that unless yr docs think that not advised
sounds frustrating
https://en.wikipedia.org/wiki/Trimethylaminuria
Seafood makes my vagina smell? - Reproductive System Question

 

[jamienoble]

For me its not related to specific food or lifestyle, something is wrong in the body.
The only thing that would help is finding out what exactly in the urine that makes it smell bad.

 

[Timaca]

My urine can smell differently if I eat asparagus or green beans.....

Here's an article on the asparagus / urine connection.
Best,

 

[Timaca]

Have you considered possible limiting the choline in your diet (as if you had TMAU)?

You can read the first paragraph under Toxicity at this link: http://lpi.oregonstate.edu/mic/other-nutrients/choline

It couldn't hurt and maybe it would help.....

 

[Timaca]

This paragraph might also be of interest to you:
As an aside, some people have defects in the enzymes for converting TMA to TMAO, and TMA accumulates in their system and produces a fishy odor (know as trimethylaminuria). The authors noted that, "In fact, individuals with trimethylaminuria often become vegans, as reducing the ingestion of dietary animal products rich in lipids decreases TMA production and the associated noxious odour."

The above paragraph comes from this link: http://www.veganhealth.org/articles/choline (It is the paragraph right above breast cancer.)

If your diet is high in animal products, you might consider a switch to a vegan diet for a month (whole foods NOT processed junk foods---and low fat) and see if that helps.

 

[jamienoble]

I appreciate the information.

Its highly possible that my odor changes depending on what i eat, but its never normal or good.
Although i can try switching to a vegan diet for a month i don't think it will help since this odor is connected to all my other symptoms. People with TMAU "only" have odor problems because it doesn't affect anything else.

When i got temporarily cured many years ago all my symptoms went away including the bad odor, i smelled better and different. I know that this is connected to my other symptoms and is caused by the same disease.

I need to do a urinalysis that also involves smelling the sample, but i don't know where to do that.

 

[Sea]

A few years ago i did a Trimethylaminuria (TMAU) urine test, the doctors simply smell the urine test and decide.
First they told me that i had this disease but 2 weeks afterwards they changed their mind.
But the fact that they were so unsure is not a coincidence, my smell is caused by something in my body that also causes all my other symptoms (Mental problems, pale skin-colour, fatigue, dry hair and possibly bad breath). And just to be clear, i definitely don't have TMAU, those people smell alot worse then me.

I wouldn't necessarily say TMAU has been ruled out.
Firstly, it can be caused by a variety of genetic mutations and some have more effect than others and so some people smell more than others.
Secondly, the proper testing for TMAU is an enzyme test and/or a genetic test - not a doctor smelling the urine.

Whether or not you do have TMAU though, it is not necessarily related to you being ill.

 

[Gondwanaland]

@jamienoble do you have symptoms of a specific vitamin deficiency that coudl be getting wasted in the urine? My first suspect would be vit B1.

 

[jamienoble]

I have done DNA test and secondary TMAU test years ago, i definitely don't have it. This is caused by something else.
I don't have any deficiency that can explain the symptoms i have.

I checked urine amino acid levels but they were all normal.
I will post pictures of my greyish / yellowish skin colour later on.

But i hope to somehow find out what makes the urine smell bad, perhaps its like finding a needle in a haystack?
I cant really explain how it smells either, it smells bad, rotten, i think its abit different depending on what i eat.
From tomorrow and forward i will drink alot of water each day, much more then im used to, just to check if the smell is still as bad or changes.