Anyone else aware of testing delays?

help with getting a diagnosis

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Anyone else aware of testing delays?

Postby coffeebean » Thu Dec 07, 2017 9:48 pm

Hi everyone

I had an initial test for TMAU done by University College London Hospital almost 6 weeks ago and still no news. I assume the sample went to Sheffield for testing, and although the specialist has chased the results, there is still no news. Is anyone aware of delays at the lab?

It's incredibly frustrating as I'd been following the low-choline diet for months before the test and the specialist has already said it'll likely have to be redone following a choline load. Makes me worry that with the delays in getting the first results, Christmas, getting a new hospital appt and then waiting again it could be Spring before I finally get a diagnosis!

Coffeebean
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Re: Anyone else aware of testing delays?

Postby PoetFire » Fri Dec 08, 2017 3:45 am

Not heard of any delay, but I know they need to wait until they have a 'batch' ... probably 24.
But I don't think that's why.

You could contact the head of dept at SCH ... Camilla Scott
https://www.sheffieldchildrens.nhs.uk/l ... chemistry/

Nigel Manning was the 'founder' of the SCH TMAU test, and so probably had more sympathy with community networking.
He's retired and now it's a legacy test.
I could guess to them it's perhaps a subconscious hindrance test.

I would like to see the test program moved to UCL but no sign that SCH want to give up the prestige.
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