3 Testing Questions When Trimethylaminuria Is Suspected

If an odor concern has made you hesitate before sitting close to someone, describing it at an appointment can take effort. You can explain what you have noticed without arriving with a diagnosis. Ask the clinician what would help distinguish the possible causes.

Three testing questions

1. Which urine measurement is needed? GeneReviews¹ describes measuring trimethylamine and its non-odorous metabolite, ideally on separate occasions. Ask where testing is available and how the result will be interpreted.¹

2. When and how should I collect the sample? Food intake and menstrual timing can affect interpretation. GeneReviews¹ advises against testing at the onset of or during menstruation. Get preparation and collection instructions from the testing team.¹

3. Who would supervise dietary changes? Dietary planning needs to preserve adequate choline and folate. GeneReviews¹ advises no restriction of dietary choline during pregnancy or lactation. Ask for specialist dietary advice before removing food groups.¹

Describe the effect on your day

Bring a short account of when you notice the odor, previous assessments and any products or dietary changes you have tried. You can include the social effect too: avoiding a meeting, changing clothes repeatedly or worrying about a conversation, if those examples fit.

Ask the team to write down the next step, including who will arrange testing and how you will receive the results. You do not need to remember every unfamiliar laboratory term.

Arms Up includes a Fresh Log and visit script. Use them to organize the pattern and the questions you want answered. See the book.