Help with test result levels please?

help with getting a diagnosis

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Help with test result levels please?

Postby coffeebean » Mon Jan 22, 2018 1:56 pm

Hi everyone

So after 12 weeks I finally received my first set of results. I know these are not fully reliable as I hadn’t had a choline load so it is being redone but can anyone help give me some context to the numbers please? It says it’s unlikely to be TMAU but I don’t know whether I’m borderline or not!

Free TMA: Creatinine 0.3 umol/Mmol (<7.7)
TMA-N-Oxide: Creatinine 23 umol/mmol (<119)
% N-Oxidation: 99% (>94)
Urine Creatinine: 16.61 mmol/L


Thank you ☺️
coffeebean
 
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Re: Help with test result levels please?

Postby PoetFire » Fri Jan 26, 2018 1:28 am

Hi

It's basically NORMAL.
in fact its very good.
99% of TMA was oxidized to TMAO.
You created a tiny amount of TMA in the first place (0.3 .... normal is <0.7)
So you had almost no TMA, and what little there was you changed to TMAO 99%.

BUT

Sheffield changed their test method last year, and since then the number of positives for TMAU have went from like ...
(made up numbers by me for effect) like around 15% positives to maybe 0.5% positives.
The founder of the test left in 2016.
Its now a legacy test in a lab that tests for many serious disorders like cystic fibrosis etc. (Im implying something).

So personally I dont trust their results and expect everyone to be NORMAL from now on.
Their heart isnt in it and imho I would like to see the test moved to somewhere else.
I don't think there's much point in retesting through them as all results will come back normal imho.
But if you can test again for free I would take it up.

My general message to the group is to contact your MP and ask them to do something about TMAU testing in the UK.
Such as : move the test to UCL ...
upside : possibly none but live in hope.... downside : no worse.
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Re: Help with test result levels please?

Postby coffeebean » Fri Jan 26, 2018 8:52 pm

Thank you poetfire!
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Re: Help with test result levels please?

Postby sweatybetty » Thu Feb 01, 2018 1:59 pm

PoetFire wrote:Hi

It's basically NORMAL.
in fact its very good.
99% of TMA was oxidized to TMAO.
You created a tiny amount of TMA in the first place (0.3 .... normal is <0.7)
So you had almost no TMA, and what little there was you changed to TMAO 99%.

BUT

Sheffield changed their test method last year, and since then the number of positives for TMAU have went from like ...
(made up numbers by me for effect) like around 15% positives to maybe 0.5% positives.
The founder of the test left in 2016.
Its now a legacy test in a lab that tests for many serious disorders like cystic fibrosis etc. (Im implying something).

So personally I dont trust their results and expect everyone to be NORMAL from now on.
Their heart isnt in it and imho I would like to see the test moved to somewhere else.
I don't think there's much point in retesting through them as all results will come back normal imho.
But if you can test again for free I would take it up.

My general message to the group is to contact your MP and ask them to do something about TMAU testing in the UK.
Such as : move the test to UCL ...
upside : possibly none but live in hope.... downside : no worse.



Hi Poetfire

If TMAU were not enough of a problem we now have an issue where the patient group has concerns about the validity of the test since Nigel Manning left!

You raise an important point, I know you were giving an annecdotal opinion when you commented that the positive test had fallen to a very low percentage and I agree and think it is critical we get to the DATA behind this. Malory emailed asking for feedback and has collated some results. I would also ask that people really dig into the detail as to effectively ask the scientist to respond to concerns about the test we need robust and detailed evidence.

I have offered to produce a data analysis to Dr Lachmann covering the pre and post 2016 (new and old tests) and trying to see trends if the patient data could be anonymised. I realise this may be tricky for them in terms of data protection so the only way we can probably do this is by getting accurate detailed and well evidenced data from the ground up i.e from ourselves.

In my case I had 8 tests pre 2016 that were all positive. I have put these into a spreadsheet which calculates the percentages (in the method we were familiar with for the old measurements. Since 2017 I had two totally normal test (like coffeebean) although my diet was far more relaxed and no anti Bs. Something is very odd.

Malory said the scientist from Sheffield might attend the patient support group in UCL. I think if we could produce a slide set with clear, detailed evidence of a number of people (as many as possible) who can provide the data of several positive test before 2016 but who are now produce negative results this would be powerful evidence to produce an evidence challenge. I am happpy to send round my spreadsheet with my anonymised data. People could either fill in their own data lines or I would be happy to do the data crunching myself if people want to send me the test results with their personal details removed. Also I could collating results producing a slideset but I feel need the actual exact measurements as per the result given to ensure that it is scientifically robust enough to ask them to look into the new test.

It is frustrating enough for people like me who have a "track record" of clearly positive results but it must be awful for people newly taking the test. Not only will they have had to jump hurdles to be given the test if they are testing negative under this new test they will be very unlikely to receive any support and be dismisssed.

sweatybetty
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Re: Help with test result levels please?

Postby PoetFire » Thu Feb 01, 2018 2:14 pm

THanks Betty

We were talking about this. Some prelim moves have been done about it.
I can maybe keep in touch with you by PM (or on the forum).

All we need really is for those that tested at Sheffield :
Date of test (say month and year) so we know if its Nigels test or the new test.
TMA level
TMAO level

From that we should be able to see a pattern.

We plan to maybe set up an anon google survey that asks for the above.
It acts as a spreadsheet and we should be able to make graphs.

Or people can send to you or post results here.

I have only heard of the new test giving very only normal results anecdotal and from chat,
so of course I may be wrong.

I will keep you updated.

From the test someone posted last month,
it looks like the TMA was unusually low (compared to Nigels test). 0.7 ?
TMAO was pretty low but believable I guess. 23 ?

Anyhow we are working on something and will keep you updated
(and others can do their own action if they want)

Yes the UCL meeting will be good.
Sheffield are sending their 2 lab testers.
Anyone who has been to UCL for TMAU can attend.
PoetFire
 
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Re: Help with test result levels please?

Postby PoetFire » Thu Feb 01, 2018 2:19 pm

People can also write the Sheffield lab if they want,
though I perceive us to be a nuisance (not a reason to stop)

They tend to keep their emails hidden now.
this is the dept ...
http://www.sheffieldlab.org.uk/site/home/about.asp

I think its :
Manager (overseer) : Camilla (probably the logical contact point)
The testers : Joanne and Edwin (not listed on the website)

I think its Joanne and Edwin who are attending the next UCL meeting
PoetFire
 
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Re: Help with test result levels please?

Postby PoetFire » Thu Feb 01, 2018 2:32 pm

I think Nigel also used to have a MINIMUM level ref range for TMA, which was around 2 ??
whereas the new test has results like 0.7.
very strange.
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Re: Help with test result levels please?

Postby PoetFire » Fri Feb 09, 2018 6:45 am

RE Sheff New TMAU Test :
It seems the official line is they feel that there's and Nigel's test give the same 'positives', except Nigel's gave more 'false' positives (due to technology, interference etc)

From what I have seen of results I reckon its the other way round.
The old test was reliable and the new test seems to make everyone normal.

I would say an aim should be to find a 2nd NHS supplier, such as UCL itself.
PoetFire
 
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Re: Help with test result levels please?

Postby EmptyCup » Tue Feb 13, 2018 3:40 pm

PoetFire wrote:BUT

Sheffield changed their test method last year, and since then the number of positives for TMAU have went from like ...
(made up numbers by me for effect) like around 15% positives to maybe 0.5% positives.
The founder of the test left in 2016.
Its now a legacy test in a lab that tests for many serious disorders like cystic fibrosis etc. (Im implying something).

So personally I dont trust their results and expect everyone to be NORMAL from now on.
Their heart isnt in it and imho I would like to see the test moved to somewhere else.
I don't think there's much point in retesting through them as all results will come back normal imho.
But if you can test again for free I would take it up.

My general message to the group is to contact your MP and ask them to do something about TMAU testing in the UK.
Such as : move the test to UCL ...
upside : possibly none but live in hope.... downside : no worse.



Hi,

I am very grateful that you told us of this change but...

The fact that Sheffield changed their test method is very distressing and depressing.

I will be having my first test within the next month.

I only want my test to be negative because I don’t actually have TMAU, and not just because they have changed their method/limits for no reason. Hope that makes sense.

I really don’t want to have TMAU but actually I also really do want to have it. Because otherwise what the hell is it? Having it would explain so much and just confirm to me that it’s not me, it’s not my fault. I’m sure this will make sense to you all, I feel I don’t have to explain it in detail. Also, maybe it would help me to bring it up to others, as apart from my doctor and now here, I have not previously talked about this with anyone. But at least if I had it I have the option of saying and knowing ‘Well hang on, it’s not me, it’s not my fault, I have…’ Always good to have options regardless of whether you take them.

I have suffered with this for over 30 years. I first came across this site and TMAU about a couple of years ago but I didn’t have the nerve to approach a doctor about it then. I wish I had done. I wish I had done the test whilst Dr Nigel Manning was still working and before they changed the test.

I don’t understand why they have changed it. It doesn’t make sense. I wonder if Dr Nigel Manning is aware that they have changed it and what his thoughts are/would be? I wonder if Dr Lachmann is aware of the change and what his thoughts are? It would be good to know.

Of course I will still do the test. Initially I was having doubts but I don’t want to waste this opportunity. I might not get another one. This news has just put a big dampener on things.

Just to mention

Weirdly enough, until about a half a year ago I have never been able to smell myself and then suddenly one day I just could and have been able to since then.
I always use to think from the reactions I got that if I did actually smell then I wish I could smell myself as it would be easier but actually in some ways it's easier when you can't, I say easier but that easier is still on the scale of horrendousness. Just for different reasons.

My referral experience (in case it helps anyone):

I will be having my first test within the next month. I have an appointment to see an endocrinologist at one of the hospitals mentioned in the Getting Tested list. Thankfully, getting my referral was not a horrendous experience. My doctor treated me very kindly and with dignity for which I will always be grateful. This was the first time I had even met this doctor, I had recently moved. I had actually enquired at the surgery reception about who their most approachable doctor was. I anonymously posted the doctor some information in advance including print outs of the Getting Tested and What TMAU is. I also included a letter explaining how deeply this affected me and how it impacted on my everyday life as I didn’t know if I would be able to tell her face to face and on the off chance that I was able to, I didn’t want to miss anything out which is what probably would have happened given the anxiety around this. I referenced the interviews with Dr Nigel Manning and Dr Robin Lachmann on this site and also where they worked as it obviously would give weight that proper doctors knew about this. I said I would bring a copy of the letter with me.

As it turned out my doctor never received what I posted so I just gave her the copy I took with me. I wonder who got the letter?.. Well it was anonymous and at least that’s one more person aware of TMAU who in turn could make someone else aware etc

EmptyCup
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