TEST RESULTS - HELP NEEDED!

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TEST RESULTS - HELP NEEDED!

Postby Sophie1999 » Thu Feb 04, 2016 1:33 pm

Hi!

I recently got some TMAU urine test results back and am looking for help to decipher them..

TMA 9.4 (ref range between 2.9 - 10.8)
TMA N OXIDE 30.5 (17 - 147.0)
TMA/TMA N OXIDE 0.31 (0.05 - 0.21)

I am 24 and the odour has only occurred in the last year, so I am unsure if it could be TMAU1 as I would have thought I would have had odour problems from a young age, or at least since the onset of puberty?

I am currently waiting to be referred for DNA testing, but any help in the mean time would be amazing.

Thanks in advance guys!
Sophie1999
 
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Re: TEST RESULTS - HELP NEEDED!

Postby PoetFire » Sat Feb 06, 2016 9:26 pm

Hi
My own non-expert interp of your result is :

TMA 9.4 : this is below Sheffields tma 'threshold' level. Meaning in practice you shouldn't smell of it.
It's quite near the ref range of 10.8, so maybe theres a chance you sometimes dip over the border.

TMAO :
30.5
your total tma presented to FMO3 was 39.9
that doesnt sound much to me
by that I mean the TMA load doesn't sound that high

TMA/TMAO ratio :
This is to do with FMO3 function. How much TMA you oxidized.
result : 0.31
Sheff ref range : normal <0.21

Most labs use a % for this instead of a ratio
your FMO3 turned your TMA load into TMAO : 76.5%
Sheff reckon it should be >79%

It suggests a FMO3 weakness, but there are 3 factors to remember

1. imho very little data has been collected about TMAU, or much research past stage 1, so there's still a lot to learn about it. By this I mean, the knowledge is limited.
2. I think one urine test is probably not enough to be sure. Someday we will have tma sensors and can detect all the time.
3. I think most peoples FMO3 function may vary a lot. As you say it only started at 23. I would expect you to be able to drift back out of the zone, but not sure how.

I thik there's a lot more to learn about tmau and fmo3, so while I would certainly not rule out FMO3 being a factor in your malodor problem, I also can see you drifitng out of the zone same as you drifted in.

Dont take any of this as correct, and I consider myself a 'left-winger' when interpreting results (i.e. way off from conservative).
Sheffield is a very conservative lab though (imho)
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Re: TEST RESULTS - HELP NEEDED!

Postby Sophie1999 » Sun Feb 07, 2016 1:09 am

Thanks for your response poetfire! Before the urine test I ate an egg in the morning and an egg and 400g of baked beans for dinner then did the test in the morning so I tried to load myself with choline prior to taking the sample. I'm hoping to get the DNA test done soon and then hopefully get some clarity. It would be amazing if I could drift out of this zone as I drifted in!! I also just got back a good intolerance test which found I had multiple intolerances, so currently eating really healthy and having some positive results. Many thanks poetfire :)
Sophie1999
 
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Re: TEST RESULTS - HELP NEEDED!

Postby PoetFire » Sun Feb 07, 2016 10:38 am

Yes the important bit is whether you smell or not. Not so much the result.
My guess is the DNA test you may be suggested as a 'carrier', but if you have a smell problem then the carrier tag doesn't fit.
Maybe you will be a compound heterozygote with a mix of minor variant faults or homozygous for one minor variant of have one bad copy thrown in the mix
I think most of us are in that situation
I think at the moment the DNA list for 'TMAU1 genes' is quite strict and not been contested much.

TMAU doesn't seem to be like cystic fibrosis where you either seem to have it or not.
It's more a case of being severe to mild

But like I say, the important bit is whether you can get away from the risk zone, which you seemed to do until 23.

Just my 2 cents. Not fact, just opinion
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Re: TEST RESULTS - HELP NEEDED!

Postby PinkPanther » Sun Feb 07, 2016 4:16 pm

Hello Sophie

I'm glad that Poetfire answered your post, I read it but had no clue about the numbers so couldn't help.

I'm intrigued at your problem only starting at 23. Can you think of anything you did then or anything that happened to you at that age, like starting on the contraceptive pill or other medication, a new diet or lifestyle or an illness? Or a stressful event? Some women only get the BO around their period, or get it worse then. Being on the pill can supposedly make it worse.

Don't reply here if you don't feel comfortable with it, but do have a good think about it, it might help you if you could pin it down to something. I know you've probably already racked your brains over it, but it could be something you considered to be insignificant.

Edit:
Btw, I should add I've never had the courage to get tested myself. I'm really worried about having to choline load - can I ask you, did you notice the egg and beans having an effect on you, the next day or a fews days after? Did other people notice anything?
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Re: TEST RESULTS - HELP NEEDED!

Postby Sophie1999 » Tue Feb 16, 2016 12:44 pm

Apologies for the slow reply!

I am still waiting for my referral for the gene sequencing. I will post my results when I know, it's such a pain waiting, I just want to know whether I have it or not!

In response to Poetfire, the smell seems to come and go, although I can only sometimes detect it. No one else in my family suffers from it thank goodness, I wouldn't want any of them to deal with this awful illness. Is it possible to develop a fault in your genes later in life which could cause TMAU1? Or is a fault in your genes something you are born with? Also, does the TMA come out in your sweat? I frequently go to the gym and smell nothing, then i'll be sat at home not moving and suddenly get a whiff of smell? Sorry for all the questions, it's so nice to talk to someone who has an idea about this disease, the GP is clueless!

PinkPanther, thanks for your message! I've been trying to have a think about what it could have been and I can't seem to pin it down which is mega frustrating! I had been at my new job for over half a year and it wasn't too stressful at this point. I'm not on the pill either, all I can think of was that I wasn't getting much excercise at that point as I sit down in my office, and my diet probably wasn't the best. I only started noticing it when I was commuting to work, I would be sat in my car and suddenly I would smell something. I can;t remember the first day I smelt it, i think i must have thought I'd trodden in something! It really did seem like it happened completely out of nowhere! When did you start noticing the problem? After doing the choline load, I didnt notice anymore smells that usual, if you can could you load up over the weekend, do the test monday to send off and then perhaps take a day off of work if you are concerned and flush it all out of your system before returning back to work? It's definitely worth loading up so you can get a true result. I think that getting tested might give you some peace of mind, even if it does come back positive, atleast you know what you're tackling. And its important to not limit your choline if it is not TMAU! Get yourself tested we will all be here in support! :)
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Re: TEST RESULTS - HELP NEEDED!

Postby PinkPanther » Tue Feb 16, 2016 2:28 pm

Thanks for your reply, Sophie1999 :)

My problem started when I was about 13. Up until then I'd been "normal". Had a couple of bouts of tonsilitis when I was in primary school, but apart from that I was healthy. I'm guessing it was puberty that brought it out.

That was nearly 40 years ago! Thank goodness for the invention of the internet. It's the only place I can find out info from other sufferers. I have actually worked with someone who had a metabolic type BO, but typically, we never spoke about it. He used to get a lot of stick off our workmates, but I very rarely did. They'd only make a comment if we were arguing or they'd gotten angry with me over something. Apart from him, I've never met anyone else with this condition.

When you say your diet wasn't the best, what exactly were you eating? I only ask because I once gave up eating sugar and anything that contains it and there was a very noticeable change in other people's reactions to me. Checkout operators turned from brusque sourpusses to smiling and friendly. Coffee can also be really terrible, did you suddenly start using a coffee shop?

I hope you come back and share your results when you get them. I'd love to know how someone suddenly gets this in adulthood. Hopefully you can get rid of it just as suddenly as it came. Fingers crossed!

Btw, if it turns out not to be tmau you might want to look into SIBO, leaky gut or Candida (I'm a Candida skeptic, but who knows?)

PM me anytime if you want to chat.
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