My Appointment

help with getting a diagnosis

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Re: My Appointment

Postby PoetFire » Thu May 10, 2018 8:31 pm

another possibility is to do the 23andme dna test to see if you have the common fmo3 variants.
but again the system will likely not accept any variants as proof
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Re: My Appointment

Postby EmptyCup » Sun Aug 19, 2018 4:58 pm

Hi,

I went back to the doctors who called the consultants secretary to refer me again and my doctor was basically told that I would have to go through the whole referral system again. Previously they said my doctor could just ring them up directly to arrange an appointment. Why say it if it's not true.

The main thing is that I finally have another appointment for a test. It will be a spot test as before.

I was wondering, is it advisable/worth me collecting a 24 hour sample myself and using that to take a sample from when they give me the collection pot at my appointment? Or do you have to put the acid in whilst even collecting? I would start collecting 24 hours before my appointment. Last time I just gave them a spot test sample and they added the acid in afterwards.

I am also going to speak to the consultant about why they haven't given me any figures for my last test. My doctor and I both thought it best to ask them face to face. Although it appears my appointment is with a different consultant this time.

Emptycup
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Re: My Appointment

Postby PoetFire » Tue Aug 21, 2018 12:01 am

re 24 hour :
Im not sure but maybe the concentration would be different from a spot.

I think Nigel used to do the 24 hour test.
Maybe it still is and its the GP saying spot test.
Maybe contact Sheffield to ask .... or even do 24 and write 24 hour on the sample.

I see now, the GP expects you to sample at the surgery ?
I couldn't do that. Just can't 'supply on demand'.
My GP at least let me take the kit home.
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Re: My Appointment

Postby EmptyCup » Tue Aug 21, 2018 6:55 pm

PoetFire wrote:re 24 hour :
Im not sure but maybe the concentration would be different from a spot.

I think Nigel used to do the 24 hour test.
Maybe it still is and its the GP saying spot test.
Maybe contact Sheffield to ask .... or even do 24 and write 24 hour on the sample.

I see now, the GP expects you to sample at the surgery ?
I couldn't do that. Just can't 'supply on demand'.
My GP at least let me take the kit home.


Hi PoetFire

If you had the choice which would you go for, 24 or Spot?

It was the consultant that said they only do the spot test. I'll ask at my appointment if I can take the kit come. I'll still do the choline load beforehand in case the consultant says no.

I did think about ringing Sheffield but to be honest I don't really trust them to give me the correct information. I trust more the people on here with regards to this.

I couldn't 'supply on demand' either. I sat in a waiting area drinking lots of water until I could do the necessary.

Emptycup
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Re: My Appointment

Postby PoetFire » Tue Aug 21, 2018 7:41 pm

I would try for the 24 hours and write it on the tube.
but I still expect 'transients' to now get a negative for sure.

I would contact Sheff to see what their instructions are.
To see if they changed.

GP told me a spot test years ago, but thats not what Nigel suggested.
That said, he said he took spot tests anyway, but recommended 24 hour.
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Re: My Appointment

Postby EmptyCup » Tue Aug 21, 2018 8:21 pm

Thanks for your advice.

I'll give Sheffield a call. I'll also ask them for the figures for my last results.
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Re: My Appointment

Postby EmptyCup » Thu Aug 23, 2018 2:44 pm

I rang and spoke to a clinical scientist at the metabolic laboratory at Sheffield's Children Hospital.

I was told the following:

They advise, if possible, a sample from a collection period of 24 hours.
She said it's better than a spot test as it can fluctuate, so 24 hours is better.

Hope I explain this next bit right...

She said that because results are given to doctors as showing the result being from a sample (of the 24 hours), consultants have assumed that only a spot test is required but really their understanding is not correct. Fluctuation means it's better to do a 24 hour test and then test from a sample of that and not just a from a spot test.

She said most should provide a 24 hour bottle with some acid in it for collection.

I asked her about collecting over 24 hours myself and then having them put the acid in it at my appointment. She said it needs to be fresh, so as long as it's the 24 hour immediately before my appointment and they put the acid in it straight away then it should be okay but if it's not the immediate 24 hours or they delay in putting the acid then this would affect the result.

I asked her about getting figures for my results and she said that she isn't allowed to give them to me and that the consultant would have been given a letter with the figures and then explaining at the bottom whether the test was positive or negative.

She said that the figures don't really matter, the important thing is what the result actually shows. I told her that they matter to me and as they are my results I have a right to know them. I forgot to ask what if the numbers are borderline? The result might be given as negative but actually be so close to positive. I tried calling again but can't get through. I'm sure I should have asked more.

I'm going to ask for a 24 hour collection bottle at my appointment.

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Re: My Appointment

Postby PoetFire » Fri Aug 24, 2018 8:36 am

Thanks for the update. Very useful.
Now we know, 24 hour is still their recommend.
Nigel also said 12 was fine (or at least, over a decent period of time), but 24 was the suggestion.

Really tho, they should make sure the GPs are clear on this themselves.
GPs know nothing about it.

I'm guessing you may have spoke to Joanne Croft, who was one of the 2 who gave the lecture in London to the TMAU group around March.

Yes I'd get the results if you can, just for the record.
In the end the positive/negative is just an opinion.

Great work. good to get 24 hour confirmed.
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Re: My Appointment

Postby EmptyCup » Tue Oct 30, 2018 6:14 pm

Hi

Since my last post, I have seen another consultant, one who was so much more informed about both tmau and sample collection and who had contact with Dr Lachmann. I was asked lots of questions and I was assured that even if it ended up not being TMAU, it wouldn't be left at that. I was having symptoms and those would be investigated with other tests.

I also got the results of my previous negative test. I don't feel like posting these yet but I will at some point.

The consultant explained the 24 hour test and how it's important I follow the collection instructions exactly and that it's vital I don't miss a collection in that time because that can skew the results. It's important for them to know the volume that you actually pass.

I had to go and get the bottle myself from the path lab. That was a horrible experience which I really don't want to go into, maybe another time.

Now I'm waiting for my results. Then I will have another appointment with the consultant to discuss what happens next, which of course depends on the results.

I won't lie. I really want them to be positive. For myself, I feel like that's the only thing that can explain this. In my mind there is nothing else with those symptoms that would be accepted by others or that I could 'justify' my symptoms. Not that I need to justify them but yeah I do, to myself and to others. Otherwise I am just a ...

I'll post again when I have the results and have seen the consultant.
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Re: My Appointment

Postby PoetFire » Thu Nov 01, 2018 3:04 pm

Thanks for the update

Do you think this consultant is more 'community friendly' than Dr Lachmann ?

I think the chances of being negative are very high.
New test just doesn't seem to pick up the 'outliers / transients ' anymore.
In Holland the lab does the DNA test first, and regards the urine test as 'unreliable' (I agree).

If you could get the DNA test done somehow, I would guess you carry 2 or more of the common variants or some other 'variant combo'.
They are taught this is still not enough to make a person 'potentially smelly', but I think they are mistaken.

you could maybe mention to the consultant the recent paper by Dr Wevers et al about new metabolic malodor suspect metabolites .... DIMETHYLSULFIDE and METHANETHIOL .... from a paper in 2017
https://www.ru.nl/english/news-agenda/n ... ad-breath/
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