Correct Test?

help with getting a diagnosis

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Correct Test?

Postby mart77 » Wed Jan 13, 2010 11:46 pm

Hi All,

I am a 32 year old who has known I have had what I think is TMAU since I was young, but it is on and off. I.e I only seem to be effected if I eat seafood etc. But sometimes it can be caused by other food or exercise. However I really want to get tested so after seeing a few docs who gave me blank looks I finally have got a test to complete. I'm not sure its right though. I have been told to complete a 24hour urine test, but thats it, no instructions on what i should or should not eat etc. I thought I would be given a Choline drink and then give urine samples every few hour so they could measure the amount I was excreting in my urine?

I'm concerend that the test will come back as negative and then I will not be able to get any help.

Anyone shed any light on this? The lab that is completing the test is in Blackpool. Cheers.
mart77
 
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Joined: Wed Jan 13, 2010 11:37 pm

Re: Correct Test?

Postby admin » Thu Jan 14, 2010 11:54 am

Hi There,

Are you paying privately for the test, were you refered via your GP.

FYI, here's the advice from the test lab in sheffield, which does a lot of tests for TMAU, hope this helps:

Thank you for your enquiry regarding the test for Trimethylamine which we perform routinely here at Sheffield Children's Hospital.

To test for Trimethylaminuria (TMAU) we require a 20cc urine sample and a referral note or request form from a physician.

For intermittent odours, which may be associated with ingestion of certain foods or may occur during menstrual periods, it is important to collect this sample at the time of the odour (this may necessitate ‘loading’ with the foods known to produce the odour eg beans, eggs, liver).

The type of urine sample we would require is known as a 24 hour urine collection - during this period urine is collected into a 2.5 litre container with approximately 10cc of ‘5M’ Hydrochloric acid to acidify the sample and stabilise the trimethylamine. (This is the same sample collection as for a urine Calcium test).
Your doctor should then send us a 20cc portion of this sample for us to measure:
1 Trimethylamine
2 Trimethylamine-oxide.
(The urine can be sent by 1st class post at room temperature).

We should be able to return the results with interpretation to your doctor within 3 weeks of receipt of the sample.
The cost of this test is £134 (an invoice is sent after the results are reported.) (For NHS patients the test is free).
If you or your doctor wish to phone me to discuss this test or sample please don't hesitate. I've attached some more information about TMAU which I hope you may find useful.


Yours sincerely



Nigel Manning
Principal Clinical Scientist
Dept. Clinical Chemistry
Sheffield Children's Hospital
Sheffield S10 2TH
UK
admin
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