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 mentionWeirdly 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