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test results - help, please.

PostPosted: Fri Nov 29, 2013 2:52 pm
by LJNLindsay
Hi folks,

I got the results back this am & it says *significantly increased trimethylamine excretion.

Results are as follows:

Trimethylamine (TMA) - 56.6
TMA-n-Oxide - 79.6
TMA/TMA-n-Oxide - 0.71

Reference range:

Umol/mmol creat 2.5 - 10.8
Umol/mmol creat 17.0 - 147.0
0.05 - 0.21

It doesn't say whether I have primary, or secondary...

Can anyone offer any advice regarding this results?

Thanks in advance

Linds x

Re: test results - help, please.

PostPosted: Fri Nov 29, 2013 3:16 pm
by PoetFire
Hi Linds

From this one sample I would say it suggests primary TMAU1

The idea is that the ratio tells you if it's TMAU1 or TMAU2

Sheffield think the ratio should be <0.23 (although most other labs have the ratio at around <0.10). Your ratio is 0.71

The other labs usually work the ratio out as a TMAO % (which I find more helpful)

TMAO% = TMAO / (TMAO + TMA) = 79.6/136.2 = 58%

Sheffield think you should be above 79% (too low set imho), other labs say around 80-90%, and research papers tend to say a normal person should be >95%

Nigel Manning will have written a lot more about your result but if you got it from your GP the GP has probably only given what he wants you to know. Not unless you got a copy of the paper from Sheffield ?

The result probably says you should do the DNA test.

It does look very much like a TMAU1 result but I have done the test 3 times (once failed, twice passed), so personally I wouldnt go on 1 result alone. I would certainly do the DNA test. If your GP says no you could try asking to be referred to an Adult Metabolic Clinic where you know they are aware of TMAU.

Don't be too concerned we are all in the same boat. Personally I only regard TMAU as a biomarker of FMO3 function unless the person only or ever reports of smelling of fish.

Re: test results - help, please.

PostPosted: Fri Nov 29, 2013 3:19 pm
by PoetFire
also since your TMA + TMAO total is around 136, it says to me you have quite a lot of the gut bacteria that produce TMA.

Nigel reckons the limits should be around 157 (going by his ref range) but I'm guessing normal people are probably well under 100 (just a guess)

Re: test results - help, please.

PostPosted: Fri Nov 29, 2013 8:03 pm
by LJNLindsay
@ PoetFire,

Thanks so much for your thoughts, hun. I really appreciate your input.

I'm still not sure where to go with this...

I didn't see my own GP for the results (couldnt get an appointment with her now until. Dec 23rd) so I shall see if she has any more information to hand.

Thanks once again :-)

Linds x

Re: test results - help, please.

PostPosted: Sat Nov 30, 2013 8:09 pm
by bigvern
first off - well done on getting the test done and getting diagnosed, must be a relief of sorts ?
regarding interpreting the tests see this thread viewtopic.php?f=9&t=962
I was orginally diagnosed as tmau 2 , then tmau 1 so be careful and get expert input

Re: test results - help, please.

PostPosted: Sat Nov 30, 2013 8:40 pm
by LJNLindsay
@bigvern,

Yeah, it is a relief (in a way) to finally have evidence to support my claim, etc.

It will be interesting to hear what my own GP has to say to me on the 23rd. To be honest, an apology wouldn't go amiss but maybe that's expecting a tad too much.

Not sure how I feel to be honest. Although I was convinced I had a malodour issue, a huge part of me was hoping that it (the test) would come back negative, & that it was 'in my head' after all...

...nothing like a little denial, eh?

Linds x

Re: test results - help, please.

PostPosted: Sat Nov 30, 2013 10:24 pm
by PoetFire
btw Dr Lachmann in London lets people test 3 times, which I think is very fair of him (and the right approach)
But you would need to get a referral to his clinic and that would depend on your GP etc.

Re: test results - help, please.

PostPosted: Sun Dec 01, 2013 12:08 am
by LJNLindsay
@ PoetFire,

I guess I shall now have to wait & see what my GP says when I see her on the 23rd.

If I do get a referal to Dr Lachmann, in London, does that mean I would need to actually see him? There's just no way I could face a train journey to London. My anxiety was already high but, since confirmation of tmau, there's no way I could put myself through that :-(

Linds x

Re: test results - help, please.

PostPosted: Sun Dec 01, 2013 6:21 pm
by PoetFire
Hi.

I've not been his patient myself, so don't know really.

In theory you could be a 'patient' of his without him seeing you (to an extent). For instance authorising the test etc. But I guess they are still stuck in the 'olde worlde' and insist everyone attend (perhaps worried about new technology meaning job/money losses).

You could probably be referred to a local Adult Metabolic Clinic but it may be still quite far away ? (maybe Plymouth ? Bristol ?) Usually these clinics see people with diabetes (as it's a metabolic disorder, well type 1). But then it depends how 'sympathetic' they are (e.g. many may nly allow one testing) or even if they have heard of it (some won't have).

Dr Lachmann is known as the most 'sympathetic' professional for TMAU people

Or you could ask Nigel Manning if he knows of any GPs in your area who have ordered the test. I will give you his email private as the hospital seems to have removed all the public contact details,probably because they don't want the public contacting them (NHS and all).

Re: test results - help, please.

PostPosted: Fri Nov 14, 2014 6:22 pm
by Pebble
Hi
I picked up my test results today that I did back in May & the results were worse than my previous one. Can anyone help explain them please?
I was told that they were good results even though they were not as good as my previous test they were better than when I was first diagnosed.
TMA 12.0
TMA-n-Oxide 35.8
TMA/TMA-n-Oxide 0.33