Important advice about visiting a doctor about this condition
DISCLAIMER: I am not a doctor or medical professional of any kind, and nothing here is medical advice.
One of the major problems people with this condition have is that doctors claim they can't smell them and dismiss them. I have what I think is some important advice on getting around this. The most important thing is to use correct medical terminology when describing your problem. If you just show up to the doctor and say that you have a malodor problem, there is a good chance that the doctor will not even be convinced that is a real thing. Combine this with possibly not being able to smell you, and they will likely dismiss you as having some kind of delusion.
The term TMAU is mostly being used here as general term for any malodor condition. This is NOT the medically accurate term to use unless you have the true form of TMAU. The true form means you can't convert TMA into TMAO. You would respond positively or negatively based on the amount of choline in your diet, as apparently that's where the TMA comes from. 'TMAU type 1' has symptoms appearing at birth, and 'TMAU type 2' is always/often the result of liver damage, and so shows up later in life, and usually long after puberty. There is usually a rotten fish smell that goes with this. It is TMA that gives fish their 'fishy' smell. Some people report responding to a low choline diet and having fecal smells however. It sounds like responding to the low choline diet, and having symptoms that show up at a time other than puberty is the key to suspecting the true form of TMAU.
The correct medical term for what most people are describing here is 'Bromhidrosis'. This is greek or latin for 'foul smelling sweat'. If you have read my posts, I have talked about how I cured my problem around 20 years ago through dietary change. At that time, people online (largely at a yahoo group that was just like this subreddit) used the term bromhidrosis to describe this condition, and TMAU was reserved for the true form of it. If you tell the doctor you have bromhidrosis, then that removes the idea that there is no such condition where people can't remove a bad smell with any amount of hygiene.
If you say you have TMAU, then you are going to get advice about following a low choline diet that does not apply to you. The medical world does NOT use TMAU to refer to a general malodor condition. That only happens in online communities like this one, among sufferers themselves. Also, TMAU has an incidence of around 1/250,000 based on diagnosed cases. Trying to account for undiagnosed cases brings this number up to something like 1/40,000 people from what I have heard. The point is that the medical literature about TMAU usually says it is a rare condition, and this may make doctors suspect you don't have it, especially if they can't smell you. Bromhidrosis is still rare, but its much less rare than true TMAU. The medical literature usually doesn't say anything about it being a rare condition like TMAU, meaning doctors are more likely to be receptive if this is what you say you have.
Bromhidrosis usually shows up at puberty or shortly after, which is what most people report here. If the smell is really coming through your pores directly, rather than through your sweat, bromhidrosis is still the most accurate medical term currently available to describe what you have. There are major questions about concluding the smell is coming directly through the pores, rather than from your sweat, which I will not go into here. The bottom line is that you need to be talking to the doctor about an actual, documented medical condition, so that the question of such a condition even existing is removed.
The second major thing I want to cover is that it is really important to call ahead of your appointment to say that you want to meet with the doctor about bromhidrosis, even if this is going to be part of an annual physical. If you just mention this with no advance warning as part of a regular physical there are some potential problems. The first is that there is a very powerful psychological barrier to directly telling someone they smell bad, and calling some time in advance to make clear that this is what the appointment (or at least part of it) is about gives the doctor some time to brace for this.
If you suddenly spring this news on the doctor, they might not be able to handle crossing the mental barrier needed to tell someone directly to their face that they smell bad. If you give no advance warning about what this appointment is going to be about, there is a real possibility the doctor will not want to admit that they have never heard of bromhidrosis, or that they have no idea how to treat it. This could motivate the doctor to insist this is all in your head to get out of the situation without having to admit they know nothing about the condition and how to treat it.
The story I always heard (back when I was dealing with this) from other people online is that doctors either had not heard of bromhidrosis, or had just heard it quickly mentioned in medical school and had no idea how to treat it. By calling in advance so that the doctor knows that this is what you will be seeking advice about, you take care of this issue. The doctor will almost certainly do a bit of research on the condition before your appointment happens. Just in case they don't, you want to print out a bit of material about this to bring to show them. You need to bring things from respected medical sites - not reddit/youtube comments. Here are a few resources to print info from:
https://www.sweathelp.org/home/sweat-and-odor.html
https://www.merckmanuals.com/professional/dermatologic-disorders/sweating-disorders/bromhidrosis
https://emedicine.medscape.com/article/1072342-treatment?form=fpf
https://www.healthline.com/health/bromhidrosis
If you call in advance about the purpose of your appointment, specifically mentioning bromhidrosis, and print out some of the above information to show the doctor, the issue of the doctor not even believing that this condition is an actual thing will be removed. If you just show up complaining about a bad smell the doctor can't detect, they may just dismiss your complaints as being some kind of delusion. Unless there is some huge change I have not heard about, doctors currently get no training on this topic in medical school, and the average person would probably be surprised to learn that there are people who smell badly, for whom no amount of hygiene can fix the problem.
Something I need to mention is that when you mention you want to talk to the doctor about bromhidrosis when you make the appointment, you also want to give a brief description about what that is. So tell the receptionist on the phone something like 'I want to make an appointment to see the doctor about bromhidrosis. This is a condition where someone's sweat smells bad. This is what I think I have'.
Doctors may assume that if you really had a malodor situation going on, it would be the result of some underlying dysfunction in the body. They may notice that you have no physical ailments that accompany the supposed odor, so that may be a reason for them to conclude this is in your head. If they do any research on bromhidrosis, they will learn that the malodor issue exists independently of any kind of body dysfunction that would additional physical symptoms. So, the bad smell should be expected to exist independently of any other physical problems. Abnormal lab test results should not be expected with bromhidrosis.
There is another major topic here I want to bring up, and that is the issue of the doctor not being able to smell you. You want to tell the doctor that your problem flairs up at times, and that you are noseblind to it (assuming you actually are noseblind of course) and that it is causing all sorts of problems in your life. If you make it clear that this problem only happens on some sort of intermittent basis, and is not necessarily constant, that should satisfy the doctor as far as why they can't smell anything.
When talking to the doctor, you need to be able to make a strong case that you really have this condition, if they are not able to smell you. Know that most people report doctors claiming they can't smell them during appointments about this. Think about how to make a strong case based on comments (and other things) that people have made about your condition. You need stronger evidence than people sometimes rubbing their nose around you. Make a strong case as well about the severe impact of this on your life, so the doctor will be motivated to devote resources to helping you.
Now, if the doctor likely has no real knowledge about this condition, then what is the point of all this? The first thing is that if the doctor is satisfied that this is a real medical condition that you actually have, they may be much more willing to order tests than they otherwise would. There may be many different underlying causes of this condition, so that may turn up something. The other major point of this is that if the medical community concludes that people complaining of malodor conditions really just have a delusion, then no resources will be devoted to actually understanding and treating this class of conditions.
I made a couple important posts about the topic of searching for medical treatments for this that should be of interest to everyone reading this post:
https://www.reddit.com/r/TMAU/comments/199ky6e/search_for_medical_treatments_and_then_look_for/
https://www.reddit.com/r/TMAU/comments/197wid5/how_to_make_doctors_and_family_believe_you_you/
The first post covers what medical treatments actually exist for this, and the second is about how to get evidence to present to a doctor that you really have this condition. For the first post, there is something called FMT (fecal microbial transplant, I think) not mentioned, and that's something to research.
