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| Old SCH TMAU ref range |
whereas their previous test had maybe 15-25% abnormals.
This is a very worrying situation.
You could say worse than having no test at all.
The official line is :
The number of true positives will be the same as the old assay, however there will be less false positives. This is because the new assay is more accurate and has less interference from other volatile substances.
Basically saying the old test was unreliable and gave too many false 'positives'.
My first impression from comparing old results to new is that it's more likely the new test method which is wrong.
Sheffield Children's Hospital UK has a long history of TMAU testing :
1997 : TMAU Test started by lab member Nigel on his own volition (it seems).
est. 2015 : Nigel retires.
2016 : Machine breaks.
2017 : New machine and method used (still GC), with more 'liberal' ref range in line with consensus.
2018 : Do not make stats public, but the trend seems to be everyone gets very low TMA levels and everyone is 'normal'.
Some comparison of the old and new :
old test : minimum TMA level possible for a human was >2.5.
TMA levels could be from 5 - 80+.
new test : most TMA results are under 2.5, even under 1.
old : TMAO levels could be like from 20 - 500+.
new : TMAO levels probably around 10 ?
I would guess for any other disorder there would be much head-scratching at the difference, but the test has been running a year with no sign of concern or loss of belief.
What is SCH attitude ?
Defensive.
Resistant to change. May give crumbs.
Community should be grateful (Oliver Twist style).
What can be done ?
1. Until now we have relied on kindness of lab members for a National TMAU Test (at all).
This is unacceptable.
The Gov need to order a National TMAU Test endorsed by the community.
Individuals can contact MPs about this.
Maybe longer term we need a campaign (e.g. petition etc) lobbying selected politicians.
The 2 lab staff who oversee the test will be attending the next UCL meetup.
Only UCL patients can attend (looks like it will be full, maybe 20 attending ?).
This is the chance to start afresh with a spirit of mutual respect,
Or they could be defensive.
Stats to be made public
A promise has been made to make stats PUBLIC, but of course theres stats then stats.
Lets hope its in the spirit of complete transparency.
SCH TMAU test LAB Dept
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15 comments:
I'm Italian and I'm putting aside the money to buy the test for the tmau from smartnutrition.co.uk, is it better to wait? I would not throw the money in a test that does not detect well, it's more than 20 years that I have problems with odors and I would finally have an answer :(
Hi. It's difficult to say.
I have a feeling everyone will be normal.
The TMA and TMAO levels seem to be far lower than the old test.
There's a few labs test on mainland Europe but we don't know if their results are any better.
It's all very disappointing.
If you use Smart Nutrition it does go to Sheffield.
I would say you are better for now focusing on a DNA test.
I would suggest an ancestry site like ancestryDNA.
If they give the raw data you may be able to rummage around for the common FMO3 variants.
I would help you out.
Hi, thank you very very much for the reply.
So I have to find the gene FMO3 and see if there are any problems? DNA testing is safe? that is, if I can find this gene and it's actually not normal, is it 100% safe that I have tmau?
Sorry but of these things I have not yet understood well :( then anyway with urine there would always be the problem of sending them within a day, with the fear that the enzyme will evaporate etc
sadly its not that simple.
the main reason for suggesting ancestry is cost.
also its saliva or cheek swab.
FMO3 is a 532 amino acid code.
But they will probably only test a few codons.
Maybe 5-20.
Then you have to hope its common variants.
Then if/when you know, an expert will say carrying those faults does mean mean you have TMAU.
A bit like understanding the creation of earth before Darwin.
I would guess you carry E158K
and maybe 256 or 308.
Many carry these but when you carry 2 it shortens the odds a lot.
Let me know if you test.
Thank you very much, I sure I'll do test for DNA, it costs more or less 69$ and for now I have about €80 aside, so I order tomorrow the test. Website is this right? https://www.ancestry.com/dna/
Impute.me replied me: "While an ancestryDNA sample already has 19 measured SNPs in and around the FMO3 gene, the imputation algorithm increases this to 404 SNPs."
Thank you very much,
Debora
I will need to check again but a site like ancestry.com should do.
My reasons for choosing ancestry is they are cheap and often give the raw data, which is what you really want.
I don't suggest a health DNA site like 23andme or genos cos their 'selling point' is their big event 'list of your terrible disorders'.
Its bad enough smelling without finding out you carry cystic fibrosis.
Really we want the raw data to choose what we look about for, but they use their lists as the selling point.
Problem with the raw data is they might not test every point, so its like getting a bag of records from a jumble sale, some might be useful, some not.
23andme does about 50 codons of the 532, IIRC.
Is impute one of those 3rd party data crunchers ?
I will need to check it out.
Im afraid you are the lab mouse for this experiment :)
I have tested 3 times (with full sequence, should be once) ...
23andme, genos, and a private lab.
Im pretty certain I know my coding part 'variants' now at least.
But had to jump through hoops.
this is a UK compare site.
maybe myheritagedna is even cheaper
https://dnatestingchoice.com/ancestry
Bad that goes, at least I will have some information about my ancestors :D
Have you found any variant in the FMO3 enzyme with these DNA tests?
However I don't think, at the 99%, to have tmau, because to me it works in this way: I think I have one thing, I have all the symptoms, I do tests etc and I never have anything. I did breath test for lactose, SIBO, urinoculture, celiac disease (the dentist had told me to take the celiac disease test because I have very fragile teeth and he suspected celiac disease) and nothing, no infection, no intolerances. I don't know! but in the meantime people keep saying "what stinks", the smell seems to invade even a room.
A few years ago I was talking to neighbors near home, a woman after a while I heard her whispering "what a fish smell", covering her nose. There was no fish anywhere, we were outdoors, trash cans were far away and I could not smell fish.. I don't know.
Since I was a child I have a bad smell problem, the first to let me notice were the classmates in third grade (7/8 years old), the classmate behind me didn't want that I touch his desk, otherwise it would remain my "smell" on his desk.
In addition, the teacher often told me to wash and I obviously did it, every day, but when I told her that I had taken a bath the night before she looked at me with a facial expression like "it's not true, you still smell bad".
In middle and high school the condition got worse and worse, the classmates told me in face that I smelled bad and keeping the windows always open even in the middle of winter.
Sometimes they told me there was the smell of "feces", other times of garbage, other times of potato chips.
I left school without taking my diploma because I could no longer cope with the constant teasing. I have always been very shy in character and this problem has destroyed me. I left everything because I started to feel very bad even physically, with panic attacks, nausea and stomach ache every day just thinking about going back to school and continuing to suffer in continuous.
I tried again a few years later to go back to school, in an evening school. Same problem, after a few months I was targeted for the bad smell, isolated from everyone, all to say always "what stinks", when I moved they sprayed the perfume in my place.
Until about 2-3 years ago I did not smell anything except the normal smell of perspiration after a run etc. But lately, almost every time I have the menstrual cycle I smell burned by the skin, a smell never heard before and now almost seems that during the menstrual cycle other people smell more this mysterious bad odour.
I went to the endocrinologist, I had high testosterone and hypothyroidism (hashimoto), now I take Tirosint and almost all the values are normal now. But the bad smell seems to be there yet.
Blood sugar always at the maximum limit (but I have no diabetes), I have no celiac disease and I have vitamin D deficiency (but because I probably don't go out often, but I'm integrating it with supplements).
I'm going to the dentist to fix some teeth (and even to the dentist I had episodes, for example they said there was a smell of gas, or when one day a downpour came and I was wet I heard them say "at least she is finally washed ", this recently).
For a short time (about 1 week, years and years ago) I ate large quantities of rocket salad (because I liked it a lot, only with oil and salt and sometimes a little of bread), I ate it at least 3-4 times every day, I did not eat anything else, just a some milk at breakfast and in that week it seemed almost as if the smell had diminished (confirmed by a classmate to whom I had difficulty asking for the information) and I felt full of strength only that obviously more than a week I could not go on and I started eating normally again...and even the smell seemed to be back.
yes that sounds very typical.
my guess is you carry E158K and E308G (same as me).
or some other combo.
But I believe in FMO3 being probably to blame for most, and I could be wrong.
I'm guessing you are smelling of sulfides, maybe a few amines thrown in.
I think 'FMO3 smells' are fairly common.
Say maybe 1% population 'AT RISK'
the 158 variant, maybe 40% carry it
308, maybe 25%.
Its a case of enzyme versus the load.
I think fmo3 might play a role in the gut, and so often associated with gut complaints.
AncestryDNA is not available in Italy :( My usual luck.. It remains only 23andMe, 123$ (100€) "Ancestry", the only available worldwide: https://www.23andme.com/en-int/
I hope next week to find the latest 20€ for the test.
I see.
there are a few ancestry sites.
23andme should do i guess.
but they like to make big news of big disorders, which is offputting.
I guess since money is so tight, the points are :
1. you might not get the data you want ? (bit of pot luck)
2. If you find fmo3 variants, no Dr will likely say 'this causes TMAU'.
such is our fate.
ok good luck :)
https://isogg.org/wiki/Portal:DNA_testing
maybe this Turin team would take an interest in your case.
https://www.ncbi.nlm.nih.gov/pubmed/29116146
Hi, I finally found a lab that agreed to test my urine sample, but it's in another country (still close enough).
The problem is that I don't know how to send the sample so that it arrives perfect. For example the freezing temperature to what should be? -18 C can be good?
Can I use synthetic ice? Dry ice I don't know where to buy it and then it is a hazardous good (also for me ..) and I should have various permissions to send it .. I don't know how to do..
Hi again.
I don't know to be honest.
Have you contacted the lab about it ? That would be best.
In UK they use HCL as a preservative and I think it doesn't need freezing, but most countries dont seem to use HCL and require freezing or similar.
Could you say where the lab is ? Its ok if you dont want to.
I wondered if it was the Rome lab.
I would say freezing could be -10 or less. just as long as its ice (if it needs freezing).
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