Test Results- Anyone Help Me Understand Them Pls

help with getting a diagnosis

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Test Results- Anyone Help Me Understand Them Pls

Postby sun-flowers » Sat Sep 17, 2016 6:49 am

Hi everyone,
I received a positive result for TMAU, I don't understand the report, it is as follows-

TMA 23.1
TMA-n-Oxide 31.2
TMA/TMA-n-Oxide 0.74

The night before I didn't overload nor a low choline diet, I just ate a normal meal (lamb dinner), is there anyone with roughly the same test results? or have any info? this would be greatly appreciated as I feel like ive no one or nowhere to turn to for advice and am struggling to accept this condition. Thank you.
sun-flowers
 
Posts: 7
Joined: Fri Sep 02, 2016 5:07 am

Re: Test Results- Anyone Help Me Understand Them Pls

Postby sweatybetty » Tue Sep 20, 2016 9:57 am

sun-flowers wrote:Hi everyone,
I received a positive result for TMAU, I don't understand the report, it is as follows-

TMA 23.1
TMA-n-Oxide 31.2
TMA/TMA-n-Oxide 0.74

The night before I didn't overload nor a low choline diet, I just ate a normal meal (lamb dinner), is there anyone with roughly the same test results? or have any info? this would be greatly appreciated as I feel like ive no one or nowhere to turn to for advice and am struggling to accept this condition. Thank you.



Hello sun-flowers and welcome

It is really difficult when you are first diagnosed and members seem to have very different experiences of the help and explanations given to them by their GPs.

Your test was probably analysed in Sheffield - when I tested I was able to speak to the scientist there although unfortunately he has now retired.

Were you given a copy of your test results? Basically the sheet would give the numbers you show above and then the reference ranges.

My result were similar to yours: at the time of the test I was 47 years old and the TMA test was conducted 11 days after the onset of menstrual cycle. Your menstrual cycle will impact the results which is why I am mentioning this.

I have stated the result as set out in the letter I received.

1)Tri - methylamine concentration 21.9 (normal range 2.5 -10.9)
2)Tri - methylamine N - oxide 28.5 (normal range 17 -147)
3)Ratio TMA to Tri-methylamine N - oxide 0.77 (normal range 0.05 to 0.21)


TMA-N-Oxide is the non smelly chemical and based on what I have been told by dieticians this should be around 100.
The amount of TMA you're expressing is the key and (like mine) is double the norm. I found it very hard to cope with especially as I was vegetarian and didn't really eat the problem food (eggs/soya etc.) and was still producing high readings on a lowish choline diet.

After the antibiotics you should ask for another urine test to assess the situation. If your readings are still high you should ask to be referred to a metabolic specialist /& dietician to help you with your diet. There is plenty of advice on the site about supplements i.e. riboflavin B2 and charcoal which are supposed to help with any odour. However I would really caution about following too restrictive a diet until you have a more confirmed diagnosis (i.e. a second reading). However, you may want to restrict very high choline foods i.e. egg yolks, organ meat (if applicable) seafood etc and to avoid brassicas (cauliflower/broccoli) that may impede the functioning of the FMO3.

I saw from your other post that you are based in Leeds /Wakefield area - I wonder if you can ask your GP for a referral to Dr Lachmann the metabolic specialist in London. I see him regularly and receive support from the unit and the dieticians. I found it very important to access this support.

Good luck!
sweatybetty
 
Posts: 29
Joined: Mon Sep 01, 2014 1:46 pm

Re: Test Results- Anyone Help Me Understand Them Pls

Postby PoetFire » Tue Sep 20, 2016 3:18 pm

Hi.

Im no expert and my interp could be incorrect.

My interp :
Its suggesting to me a TMAU1 result, meaning FMO3 enzyme did not oxidize the TMA load at normal levels.

FMo3 function was
Tmao / (TMA + TMAO) =
31.2 / (23.1 + 31.2) = 0.57 (x100 for %) =
57% of the TMA was oxidized to TMAO

REf ranges vary with each lab,
I think Sheffield suggest FMO3 should work at >79%
So this result is a bit lower than that.

Personally I think the test can throw up all sorts of results and wouldn't go on 1 result alone but I would suspect that FMO3 function is a good reason for any smells.
PoetFire
 
Posts: 290
Joined: Fri Jan 15, 2010 10:23 am

Re: Test Results- Anyone Help Me Understand Them Pls

Postby sun-flowers » Wed Sep 21, 2016 12:53 pm

sweatybetty wrote:
sun-flowers wrote:

Hello sun-flowers and welcome

It is really difficult when you are first diagnosed and members seem to have very different experiences of the help and explanations given to them by their GPs.

Your test was probably analysed in Sheffield - when I tested I was able to speak to the scientist there although unfortunately he has now retired.

Were you given a copy of your test results? Basically the sheet would give the numbers you show above and then the reference ranges.

My result were similar to yours: at the time of the test I was 47 years old and the TMA test was conducted 11 days after the onset of menstrual cycle. Your menstrual cycle will impact the results which is why I am mentioning this.

I have stated the result as set out in the letter I received.

1)Tri - methylamine concentration 21.9 (normal range 2.5 -10.9)
2)Tri - methylamine N - oxide 28.5 (normal range 17 -147)
3)Ratio TMA to Tri-methylamine N - oxide 0.77 (normal range 0.05 to 0.21)


TMA-N-Oxide is the non smelly chemical and based on what I have been told by dieticians this should be around 100.
The amount of TMA you're expressing is the key and (like mine) is double the norm. I found it very hard to cope with especially as I was vegetarian and didn't really eat the problem food (eggs/soya etc.) and was still producing high readings on a lowish choline diet.

After the antibiotics you should ask for another urine test to assess the situation. If your readings are still high you should ask to be referred to a metabolic specialist /& dietician to help you with your diet. There is plenty of advice on the site about supplements i.e. riboflavin B2 and charcoal which are supposed to help with any odour. However I would really caution about following too restrictive a diet until you have a more confirmed diagnosis (i.e. a second reading). However, you may want to restrict very high choline foods i.e. egg yolks, organ meat (if applicable) seafood etc and to avoid brassicas (cauliflower/broccoli) that may impede the functioning of the FMO3.

I saw from your other post that you are based in Leeds /Wakefield area - I wonder if you can ask your GP for a referral to Dr Lachmann the metabolic specialist in London. I see him regularly and receive support from the unit and the dieticians. I found it very important to access this support.

Good luck!




Hi Sweatybetty

Firstly thank you for replying to my post, it's just a relief to communicate with someone who is in the same boat as me.

Your results are so similar to mine roughly same time of month and same age! also for the last few weeks I've been on the restricted diet but coupled with the metronidazole antibiotics I've felt so ill, I think I'm going to take your advice and just eat normal but exclude really high choline foods and wait until I get my second results then speak to my GP about getting referred to a specialist dietician and hopefully Dr Lachman too. Since being diagnosed I've only left the house a couple of times so hopefully I'm on the right path to controlling this disorder instead of it controlling me.

Once again thank you.

sun-flowers
sun-flowers
 
Posts: 7
Joined: Fri Sep 02, 2016 5:07 am

Re: Test Results- Anyone Help Me Understand Them Pls

Postby sun-flowers » Wed Sep 21, 2016 1:08 pm

PoetFire wrote:Hi.

Im no expert and my interp could be incorrect.

My interp :
Its suggesting to me a TMAU1 result, meaning FMO3 enzyme did not oxidize the TMA load at normal levels.

FMo3 function was
Tmao / (TMA + TMAO) =
31.2 / (23.1 + 31.2) = 0.57 (x100 for %) =
57% of the TMA was oxidized to TMAO

REf ranges vary with each lab,
I think Sheffield suggest FMO3 should work at >79%
So this result is a bit lower than that.

Personally I think the test can throw up all sorts of results and wouldn't go on 1 result alone but I would suspect that FMO3 function is a good reason for any smells.



Hi PoetFire,

Thank you for your reply to my post,
I was hoping my results wouldn't indicate TMAU1, reason being I have an 11yr old daughter and the thought of her inheriting this condition and having to live a life like most of us on here have had terrifies me but if that's what I have I'll have to deal with it.

Thank you for this info it helps a lot.
sun-flowers
sun-flowers
 
Posts: 7
Joined: Fri Sep 02, 2016 5:07 am

Re: Test Results- Anyone Help Me Understand Them Pls

Postby PoetFire » Wed Sep 21, 2016 1:41 pm

getting a 'TMAU1' diagnosis is not as black and white as textbooks make out imho.
e.g. perhaps you didnt have a smell problem until well into adulthood etc ?
i think most of us are transient, and some maybe drift out the zone altogether imho.
others may never know they had a problem.
certainly theres a lot to be understood imho.
PoetFire
 
Posts: 290
Joined: Fri Jan 15, 2010 10:23 am


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