My Appointment

[EmptyCup]

Hi,

My last appointment was actually for the wrong department, I did query it but I was told it was fine. It wasn't. Waste of time, money and all the stuff that comes with getting there, emotionally I mean.

Today I finally got to see the right person in the right department.

Just thought I would share it with you. Bare with me, I am not articulate.

Got there 40 mins before I had to be, but was seen by the nurse straight away to do my bp, height/weight. Then just a 5 minute wait to see the Dr.

After saying hi and introducing themselves I was asked what my symptoms were. I just felt a wave of anxiety and replied "isn't it in my notes or in the letter that my Dr wrote to you?" The Dr said it was but they wanted to hear it from me. I started talking but had to stop a few times because of the build up of emotion. Although what I did say just didn't seem adequate to me, I was jumping from one thing to the next trying to think what will convince her that TMAU could even be a possibility for me.

I mentioned peoples reactions and how long this odour issue has affected me. The Dr wanted more detail about peoples reactions including family and what they said in particular. I said that they didn't ever say it directly to me but always in earshot and that it was sometimes in their behaviour rather than them saying something. I have dealt with this for over 30 years, there are so many moments and examples but my mind was just blank and also I didn't particularly want to give examples. I started being defensive, I didn't mean to be but I was. I was thinking if you could just somehow know for a brief moment everything I've experienced then you wouldn't ask me anything you would just get the test done. I did mention that I have had to give up a lot of stuff that I have started and that I have basically stopped starting now. I just isolate myself as much as I can.

The Dr said a few times that TMAU is very rare and I think that is what put my defences up more, the fact that she repeated this a number of times. So what if it's rare, doesn't mean I couldn't have it. When the Dr asked me what kind of smell, I said it's about three different smells. Sulphur, fecal, rubbish. The Dr said well TMAU is a very particular smell and is a fish like smell not anything else. I explained that when I say sulphur I relate sulphur to fishy. It was explained to me that sulphur is actually egg like. I explained the egg like smell is when I say rubbish which is a mixture of rubbish and egg like.

The Dr asked if I noticed any changes with regards to the food I eat. I explained that I couldn't previously smell myself. I have only been able to smell myself for about the last 7 months approx. and that I don't know - I was just feeling so tired at this point, not physically, it was easier to just say I don't know. The Dr said something about only choline affecting the TMAU and that if I didn't notice any changes... but I didn't really take in what was actually said and so can't relay that to you.

I did say I'm sorry if I seem defensive, I don't mean to be, I just find it hard, I've been through so much. The Dr said it was fine but they had to ask the questions. To be honest I don't think the Dr was being a negative way, I think that it was just to do with my state of mind.

Anyway the Dr explained to me about the urine test and asked me if I was restricting my diet. I said no and was told that's good because some people read up on it and then restrict their diet before they come for the test. I said that would defeat the object. I had actually done a choline load yesterday evening - I didn't tell the Dr that. I didn't know whether they were actually going to get me to give them a sample then or give me something to take away and bring back so I just did the choline load anyway. The Dr told me that there is only one lab in the UK that does the test (which I know but I didn't make out that I knew) and that it would probably take a couple of months to get the results. Also made a point of telling me that if the results came back positive then they would see me again but if it was negative then they wouldn't because they only deal with TMAU with regards to odour issues and I would have to see someone else specialised in that field. I have no idea what this other field would be.

I then went back to the waiting area and was given a pot by the nurse and well, normally I have no problem but I just didn't need to go. So I had about 5 cups of water and walked around for a bit and then I was able to give a sample. I gave the pot back to the nurse and then I left. I wonder when they put the acid into it? They had better do it, I was going to ask but I just wanted to get out of there. It seemed like I was there for hours. They did say to allow a couple of hours as tests may need to be done. All in all I was only there for about 45 mins in total.

I was so relieved to get out of there. I know my sample is going to be tested which is the main thing, so that is positive. I just have a lot of negative stuff going through my head. This result better come back postive because otherwise I have no idea what I am going to do. I don't want TMAU but it's the only thing that can explain everything. If I don't have it then there isn't really anywhere to go. If it is, then at least I can do the diet and antibiotics etc - it's something and I can feel like I'm moving forward. I feel like I have been at a standstill for most of my life while the world is just moving on.

Right, well, I've given myself a headache so I will leave it there.

EmptyCup

[PoetFire]

Thanks for sharing. Sounded not a pleasant visit.
I think to consultants of serious disorders, we might be the trivial one.

Often the urine test is a collection of 24 hours of urine (then a sample taken from it).
Sounds like the Dr just went for a 'spot check'.

Nowadays I would suggest doing the DNA first, but NHS dont allow the DNA test unless you 'fail' the urine test.
The urine test now seems harder to 'fail', going from 33% fail in the old test, to 16% now.
Personally I think this means more 'false negatives' but just my opinion.
Sadly not much we can do as only one test supplier.
Be interesting to know how you got on.

[EmptyCup]

Thanks for sharing. Sounded not a pleasant visit.
I think to consultants of serious disorders, we might be the trivial one.

Often the urine test is a collection of 24 hours of urine (then a sample taken from it).
Sounds like the Dr just went for a 'spot check'.

Nowadays I would suggest doing the DNA first, but NHS dont allow the DNA test unless you 'fail' the urine test.
The urine test now seems harder to 'fail', going from 33% fail in the old test, to 16% now.
Personally I think this means more 'false negatives' but just my opinion.
Sadly not much we can do as only one test supplier.
Be interesting to know how you got on.

Hi PoetFire

I would have preferred doing the 24 collection sample. It just makes more sense and they should do the same with everyone.
I did know about the 24 hour collection sample, from this site, but I didn't bring it up at the appointment because I was fearful that they might not even do the spot check as you called it.

I have never wanted to 'fail' anything so badly as I want to fail this but if the test comes back negative (high probability and not because I don't have TMAU) then I will use the 'Spot Check' to reason with my GP the need for another test.

Why is there only one test supplier?
What is stopping there being others? Do they need permission from Sheffield or something or is it that the medical industry just doesn't deem it necessary?
Excuse my ignorance, I am neither scientifically nor medically knowledgeable.

Oh and if consultants can't realise that this is a serious disorder, then they are the one's that are being trivial (and unprofessional in my opinion). All they need to do is think if someone did have TMAU then how would it affect them... It's common sense... and from that they should realise how badly someone can be affected in all parts of their life. I don't think they should be determining the seriousness of TMAU by comparing it to other disorders. Any disorder that affects a persons day to day 'living' so negatively is serious.

People don't just get up one day and think I know, I'm going to go and ask for a TMAU test for the fun of it. Something has lead them there. Something that has been probably going on for a long time and affected them so much and it's a relief for them to finally find something it could be... That is not the time for the medical world to start putting barriers in their way with attitudes or not letting them do the test.

Anyway, I will post my results here when I get them.

EmptyCup

[EmptyCup]

Hi

Well I can't seem to get the fact that they didn't do the 24 hour urine test off my mind.

I should have just said something at the time of my appointment.

Should I wait to get the results of this test? Or should I just go back to my GP and ask for another referral because they didn't do the 24 hour test?
Or should I contact the Dr I saw at my appointment?

Also how does the 24 hour test work? Do they give you all the stuff - like container and acid etc at the appointment to take home and then you go back to hand the sample in? Or do you then send it off to Sheffield yourself?

What if they just say no the 24 hour test?

I had two large eggs and 400g of baked beans the evening before my test. Is that okay?
I always smell but the smell varies both in type and intensity but even at it's weakest it's noticable.

ShouId I make out that I didn't do the choline load even though I did? Would that be wrong? I'm thinking they might accept it as reason to do another test.

I remember when the Dr asked me whether I restricted my diet and I said no, the Dr listed a whole range of food types like fish, lentils, eggs, prawns, shellfish, meat. I explained that I don't eat red meat that often, only about twice a year but I forgot to say that actually I don't eat prawns or shellfish at all.

Any advice or guidance would be appreciated, thanks.

EmptyCup

[PoetFire]

I wouldn't worry too much. The Dr will have put on the sample it was a 'spot test'.
You had a high choline load the night before.
24 hour is a 'gold standard' I suppose.
The idea you take a sample from it and this represents 24 hours.
It's not very practical, as 24 hours of urine is surprisingly a lot.
I used a 2 litre bottle and ended up doing just 12 hours.

tbh I reckon you will be 'negative'.
The new test is just too difficult to fail.
TMAU2 doesn't seem to exist anymore.

I guess you could use 24 hour as an excuse for a new test.
You could ask your GP, he can sanction the test.

[EmptyCup]

I wouldn't worry too much. The Dr will have put on the sample it was a 'spot test'.
You had a high choline load the night before.
24 hour is a 'gold standard' I suppose.
The idea you take a sample from it and this represents 24 hours.
It's not very practical, as 24 hours of urine is surprisingly a lot.
I used a 2 litre bottle and ended up doing just 12 hours.

tbh I reckon you will be 'negative'.
The new test is just too difficult to fail.
TMAU2 doesn't seem to exist anymore.

I guess you could use 24 hour as an excuse for a new test.
You could ask your GP, he can sanction the test.

I think doing it over 12 hours is still better than the spot check because what if when they do the spot check and the choline hasn't taken full affect and result would be negative but just a couple of hours later it may have had a fuller affect and had the test been done then it would be positive.

Yes I understand about the new test being too difficult to fail.
I guess I am just hoping for a miracle. I'm up and down a lot with my emotions regarding the outcome and hoping for a miracle, however deluded, seems to lift my anxiety even if it is just temporarily.

I will wait for the result and then ask for the 24 hour test when the miracle doesn't happen.

Thank you for replying PoetFire, you have put my mind at ease somewhat.

EmptyCup

[EmptyCup]

Be interesting to know how you got on.

Hi

I got my results. No figures though.

The letter says:

The analysis shows normal trimethylamine which excludes Trimethylaminuria. Therefore, we were unable to identify the underlying causes of your symptoms.

No change to your diet and no restriction of choline intake is therefore required.

Based on the above results, we have therefore discharged you from the metabolic clinic.

If you have any queries or require any further information please do not hesitate to contact me.

Well yes, I do require further information actually so why not send it in the original letter. They know that people want numbers and details.
It's like they just can't wait to get you off their books, that may not be the case but that is how it feels. Why don't they wait for a week at least to see if I contact them before discharging me. They are so quick to discharge and not quick with anything else.

Anyway I have left them a message and am waiting for them to call me. I have asked for them to send me a letter with all the figures etc.
I also said that I am not happy that I only had a spot test and that I would like another test with 24 hour collection. They are going to say I have to be referred again. Well, I have already made an appointment with my doctor. I am going to push for another test.

I am so vexed. Well vexed for a bit and then feel down and then I get vexed again and on it goes until I will just feel down.

The results are like a big smack in the face saying it's YOU, YOU STINK AND IT'S YOUR FAULT.

I am not unhygienic. I have something. Something is causing it which is not in my control. TMAU was suppose to be the answer. I haven't imagined peoples reactions or comments. I haven't lived my life the way I have out of choice.

Empty Cup

[PoetFire]

I think this will be the new typical.

One option might be to contact your MP to show them how useless the NHS is in treating metabolic body odor.

Its a double whammy now, with the test now backing up the consultants attitude, both getting TMAU off the books.
I would guess we are the biggest 'rare disease' group on their books and a trivial nuisance.

it's good to get a copy of the results.
I guess a 'transparent' dept would do that automatically.

[EmptyCup]

You were right before and you are right now.

They really should not be in their professions if they think us a trivial nuisance. These are people's lives they are dealing with and they are adding to the negative stuff we have to deal with.

I did start an email to the local MP but can't seem to get the wording right so am still working on it.

I got a call back earlier from someone in the metabolic department of the consultant I saw...

She said she wasn't sure if the consultant had the figures, so I told her to get the consultant to ask Sheffield for them. It's just the way she said it though, plus the pause after I had asked her. It gave the impression that she knew there were figures but didn't want me to be asking about them.

She also said that although I have been discharged and need another referral to see the consultant again, this time the doctor would just need to ring the consultants secretary to refer me. So that is a good thing within a non good thing.

In relation to a spot test v 24 hour test, she said that they only do a spot test. I explained that other metabolic specialists have done the 24 hour collection and that it makes more sense and that it should be the same regardless of who you go and see. She went quiet and then said she couldn't comment on other specialists. I then asked her why some people struggled getting even one test done, others just the one and some got many. If there are symptoms then the tests should be allowed and that just like how people can have a false positive they could also get a false negative and so at the very least everyone should be allowed to have two tests. Hardly anyone would make up that they have the symptoms of tmau. She said she couldn't comment on what others allowed.

Next step go back to the doctor. Merry go round. Except it's not merry. I couldn't put the correct word that it actually is here... but I'm thinking it... a lot.

Oh and finish that email.

Empty Cup

[PoetFire]

you answered them well.
I think dr Lachmann allows 3 tests.

metabolic bo/halitosis is in a dire way with the system, and in the uk its now got worse.