i think i have TMAU, can someone help?!

help with getting a diagnosis

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i think i have TMAU, can someone help?!

Postby penguin » Sat Mar 13, 2010 10:56 am

Hi

As the subject says, i think i have TMAU. I know some people will probably tell me to see a GP and get diagnosed, i would rather seek opinions on here first from people who have experienced it first hand :)
I am a 19 year old girl and the problem started for me when i began puberty at about 10. I have been reading through the forums and some people mention that eggs, meat etc can cause them to smell. Some people also mention a faecal odour. Mine's is different and i think uncommon. My private area smells fishy for about 3 days after i eat any type of fish, could this be TMAU? No matter how much i shower, the smell is still there and it makes me feel really uncomfortable, especially in public. My boyfriend has mentioned that he can smell it even if i am on the other side of the room! Can someone help me and tell me whether it can still be TMAU without other body parts smelling, eating other foods? Any help would be greatly appreciated!
xxx
penguin
 
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Re: i think i have TMAU, can someone help?!

Postby bigvern » Sat Mar 13, 2010 6:05 pm

Hi penguin

welcome to the forums,,I am not an expert nor medically qualified but will try and help.

If you have a look at the faqs from dr lachmann I thnik he does mention about hormones / puberty etc:
""In adult women, symptoms can be worse around their periods, so hormones probably are important""

having an effect on TMAU, possibly making the symptoms worse.
The faqs are here (or access them from the home page)

http://www.tmau.org.uk/index.php?option ... &Itemid=41

Your symptoms certainly sound like TMAU, have a look here for further info.
http://www.tmau.org.uk/index.php?option ... temid=62ve a look here for further info.

It is a rare condition so you will probably have not come into contact with anyone else with TMAU and will therefore think that your smell is uncommon.

For me, I have primary TMAU and I used to take 2 or 3 showers daily which had little or no effect because the smell comes out through sweat, breath etc,,.

The condition CAN be managed and I would urge you to seek a diagnosis from your GP,, even give him details of this website so he is aware of the condition before you go and see him.

I think it can be TMAU without other parts smelling,, but again you would need a diagnosis, the links above give details of how to get this (see your GP and ask him to refer you to Dr Lachmann)

Finally I believe TMAU was covered on channel 4 emabarassing bodies last night, may be worth watching that for you. (I have recorded it but haven;t watched it myself yet)

So the good news is there is help out there. :D :D
Please get back to us with any questions..
I would avoid fish if you can because most fish contains large amounts of choline which is a precursor to tmau.

Have a look at the links page on this website for a list of foods high in choline
bigvern
 
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Re: i think i have TMAU, can someone help?!

Postby smelly » Sat Mar 13, 2010 8:26 pm

Penguin or no penguin, you're going to have to give up fish by the sounds of it!

The good news is that you can smell it, so you can monitor it, and your boyfriend can smell it but he is still your boyfriend, so all good so far!.....

I have a too short attention span to be relied upon to digest and regurgitate medical information well, but I'll have a go......

If you know for certain odour is preventable by avoiding fish, and just want to know if it is TMAU for your own information, you can always do the challenge that doctors recommend before doing urine test for TMAU. Eat 2 eggs and big tin of baked beans, DONT tell your boyfriend and see if he makes any comment about a smell. Dont know how long it should take for smell to start coming out of breath (or in your case your groin area?) but I think doctor said it should start showing up in urine an hour or so after?

This will let you know if you are both smelling the same thing (odours are very suggestable, no one can smell anything then someone says something and then suddenly everyone can smell it!) and if it is just related to fish or a wider group of foods which would make it sound even more like TMAU.

By the way, I have read that it is thought to be medically 'normal' for women to be capable of producing a fishy smell after eating large quantitites of fish - nothing to do with TMAU. Also, this site? says that urinary infection can cause simillar odour symptoms (and would give a false posistive for TMAU, but wouldnt be helped by the TMAU-treatment antibiotics because they are specific for gut?) i think these infections can be detected by simple urine test - you should have no problem getting arranged by GP or even practice nurse if that is easier for you. If it was me i would check this out befroe trying to get TMAU test because it will be quicker/easier to arrange and might even be more likely statistically speaking and becasue you are just getting odour in that area not on breath or anywhere else.

Good luck and let us know what happens on testing because it could help someone else witht he same symptoms as you!
smelly
 
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Re: i think i have TMAU, can someone help?!

Postby sunny » Wed Mar 24, 2010 3:29 pm

I also think I have TMAU...I saw the programme Embarrassing Bodies. I have actually suffered this for years without consulting. I thought I was the only one...and as no-one close to me ever talks to me about it...So for years I have been trying to get on with life. But every day there is at least one person in the train or bus who makes a comment. Strange how it is always people we don't know.
I have seen in this forum lots of good info and a lot of talk about choline. Does anybody know what we can eat..what is low in choline ?
Thanks.
sunny
 
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Re: i think i have TMAU, can someone help?!

Postby smelly » Wed Mar 24, 2010 10:39 pm

Sunny,

see my treatment post for diet ideas but be REALLY careful about self treatment without a diagnosis . low choline can cause serious problems - it has been linked to liver problems and Alzhiemers (spelling??) I must say on my self-designed low choline diet i have been so forgetful and slow thinking that I can completely believe the link with nerve/brain function and choline - thi sis not to be messed around with....

If no one has directly said to you that you smell, its tricky to say you have definately got a problem. I might get the same train as you and it might be me they are commenting on! You really need the test, to put your mind at rest. if you are nervous about the GPs reaction, load up with greasy fish and chips night before appointment and first thing in morning eat 2 eggs and a big tin of beans. If you have this condition you will hopefully be peeling paint off surgey walls during your appointment, so the gP will be a lot more considerate of your problem. if you take along the print out of suggested treatment they will be much more likely to give you test. They worry that they dont know what to do if you do test positive so that makes them more reluctant to start the whole process. But if they know that a diet change and some antibiotics is all that is required they will be put at ease!


Good luck :)
smelly
 
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Re: i think i have TMAU, can someone help?!

Postby smelly » Wed Mar 24, 2010 10:50 pm

Sorry sunny, just read your other post where you say people have directly commented to you about odour - I am not using this site properly and randomly click on posts to look for new ones when I think there is a more thorough methodical way of doin git so you dont miss any - just too stupid and tired to work it out :shock:
smelly
 
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Re: i think i have TMAU, can someone help?!

Postby PoetFire » Fri Mar 26, 2010 5:52 am

sunny wrote:help in France
Thanks.


Hi Sunny. I noticed you were looking for a specialist in France. This French researcher has done some work. Perhaps he could advise on where to test if he is contactable
http://www.orpha.net/data/patho/GB/uk-FOS.pdf
PoetFire
 
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