New diagnosis - help and info please

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New diagnosis - help and info please

Postby sweatybetty » Mon Sep 01, 2014 2:16 pm

Hello everyone

I have been taking a look at this site for a few days now. I am reeling from my diagnosis - relieved that I can finally have some answers but overwhelmed as it is clearly a difficult and upsetting condition to manage.

In the course of (finally) receiving treatment for hyperhidrosis I tested positive for TMAU (diagnosis received last week). I am principally vegetarian and had not eaten high choline foods in the days before the test as I was not aware I was going to be offered the test during the hyperhidrosis consultation. I have suffered from hyperhidrosis for 35 years and it is a family problem. I have always been really worried that I smelt but thought it was due to the severity of the hyperhidrosis. The hoops I have jumped through - only wearing natural fabrics, buying a small flat in very central London so that I could walk to work and avoid getting sweaty. Showering so frequently! In spite of all this I still had problems at work /with friends and was often sidelined leading me to change jobs/social groups frequently. At my last job people were getting up and moving away from me and I have lost confidence in feeling I will ever work again!

I am a 47 year old female and the TMA test was conducted 11 days after the onset of menstrual cycle.
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)

Is it possible to determine from the results whether this indicates primary or secondary TMAU? The second figure seems to be the conversion rate so I am worried that I the level at which I am processing Tri methyl is extremely low ??

I remember my grandmother had an extremely strong odour (rotting smell) and sometimes I notice a fishy odour coming off my mother if she eats fish. I am aware that TMAU can also lead to other odours but I cannot smell myself!

My G.P. said he is not knowledgeable about the condition. I live in Central London and have asked my G.P. to refer me to Dr Lachmann.
sweatybetty
 
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Re: New diagnosis - help and info please

Postby bigvern » Sun Sep 07, 2014 12:08 pm

bigvern
 
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Re: New diagnosis - help and info please

Postby PoetFire » Sun Sep 07, 2014 2:34 pm

Hi sweatybetty

It's unfortunate that the Sheffield lab uses a different metric(?) for working out the ratio compared to other labs. A bit like using shillings instead of pence.

Here is my interpretation of your result, which may be incorrect to varying degrees :

Primary TMAU is generally regarded as the % of a TMA load that you oxidized. Then they use a 'cut-off' point to define what is 'normal' and what is not. This normal cut-off point can vary from lab to lab. The Sheffield lab uses 0.21 (which most other labs would refer to as around 79%). Some suggest the cut-off point should be around 90%, which would make Sheffield's cut-off point very conservative.

Looking at your own result, the amount of TMA you absorbed was TMA + TMAO was 21.9 + 28.5 = 50.4
Of that you oxidized 28.5, making your oxidizing capacity about 56.5%
This does sound like TMAU1 and would have been a 'TMAU1' result at every lab I know of, although I have seen people be around there before and then be normal in follow up tests. I think there's still a lot to be known about FMO3 etc. I would suggest a follow up test and a DNA test. Personally I think the urine test should be a home test that can be checked all the time, but currently we are regarded as a very rare disorder (not correct IMHO) and be grateful for any lab that offers the test.

The total of 50.4 doesn't seem very high, suggesting a large TMA load was not generated.

Dr Lachmann will be able to elaborate more or correct my interp more guess.

Could I ask who offerered you the test ? I mean profession rather than their name (i.e. was it a GP). It would be nice to think some hyperhydrosis speciaiist unit was offering the TMAU test. I think a lot of 'bromhydrosis' and other types of 'surface' malodor problems may in fact be people with an FMO3 issue.
PoetFire
 
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Re: New diagnosis - help and info please

Postby sweatybetty » Thu Sep 11, 2014 1:35 pm

bigvern and PoetFire - thank you both for your replies. Understanding the different approach used by other labs was extremely helpful as having listened to the Webinars on MEBO I was initially confused by the alternative calculation.

PoetFire - I had a initial consultation for my severe hyperhidrosis at the Dermatology Department Kings College London with a Registrar. Being a belt and braces sort I had produced a focussed 1 pager on my medical and family history, personal experiences, duration of condition, actions taken, my understanding of options etc. I referred to my grandmother's strong maladour and also mentioned I had smelt a fishy odour on my urine (I had only recently started fish about once a week as I was concerned about my B12 deficiency)I questioned whether it could be linked with TMAU and asked whether I could test. I was quite taken aback when they said I could test then and there! I had not done the choline load or eaten trigger foods for at least a few days before the consultation.

I would tend to agree with you that the condition is under recognised - I can think of at least one or two person in every workplace I have been in who has had a maladour issue that I was aware of. I worked for large corporate /professional service firms. Since very few people these days are unaware of general hygiene practices, lack bathing facilities, or are prepared to disregard the social censure towards malodour it would seem to suggest that something else (i.e. medical issue)is causing their odour problem.

I was also aware that a few people seemed to make comments about me and I sent myself crazy showering midday and wiping down with wipes but I always though previously that it was due to my severe hyperhidrosis.
sweatybetty
 
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