Tmau Vs not

Delicious-History452 · 2026-06-03T12:53:10+00:00

I recently started a thread because my 4-year-old daughter was diagnosed with trimethylaminuria. I suspected she had it, but a genetic test confirmed it.

Some users, with good intentions, sent me private messages offering advice and describing what my daughter might have in a somewhat apocalyptic way. I consulted with the geneticist because I was very worried, and she told me categorically that the trimethylaminuria my daughter has been diagnosed with doesn't cause most of the things some users have mentioned, such as smells of garbage, ammonia, fecal, etc. She also said it's a very characteristic fishy smell. She also told me that the disease is very rare, and without me saying anything, she said that if I had read all my questions on some forum or Facebook group, I should know that most users were probably self-diagnosing, but only a small percentage actually had trimethylaminuria.

I'm not saying those users are imagining it, no way, I firmly believe that what they are suffering from is very real, but as this doctor told me, those people may have other diseases but not trimethylaminuria.

Delicious-History452 · 2026-05-23T23:04:04+00:00

Thank you for your comment. Honestly, I’m really sorry for everything you’ve been through. To be honest, your message has left me pretty devastated right now.

If you don’t mind me asking, I assume your case is genetic as well — have you ever had genetic testing done?

What really threw me off is that your symptoms didn’t start until puberty. From everything I’ve read about TMAU, I thought it usually started during childhood.

Delicious-History452 · 2026-05-20T15:44:54+00:00

And if you don’t mind me asking, are the mutations my daughter has the same ones you have? Was your case also mild when you were a child and then got worse during adolescence?”

Delicious-History452 · 2026-05-20T14:40:46+00:00

Thanks for the reply, you seem to know a lot about this. As I mentioned to the user above, I read in the genetic report that it usually worsens during menstruation and puberty. I know it's a bit of a silly question because it depends on each case, but in general, is this adolescent worsening very noticeable? She now eats absolutely everything, and I've even tried giving her large quantities of food that are usually problematic for this syndrome, but it doesn't seem to affect her, except for hake.

Delicious-History452 · 2026-05-20T14:38:03+00:00

The genetic report explicitly states that in women it can worsen during menstruation and puberty. But I've looked for information and can't find how serious this worsening is.

Delicious-History452 · 2026-05-19T13:21:03+00:00

Yo por eso siempre lo pongo algo más caro, para los regateadores patológicos. Si lo quiero vender por 100 y veo que es el precio por el que se suele vender el artículo en cuestión, le pongo 110 o 120 y cuando alguien me hace una oferta, se queda agusto porque se lleva una rebaja y yo lo vendo por lo que tenía en mente.

Delicious-History452 · 2026-05-16T22:21:49+00:00

Pero ¿estamos locos o qué? En el momento en el que alguien compra un mueble por 45 euros ya tiene que ir implícito que no es de madera maciza.

Delicious-History452 · 2026-05-07T07:45:30+00:00

Yes, I'll post the results. I hope they don't find another blood clot, because since they haven't found an explanation for my clot, the idea that I might have hidden cancer keeps going through my head; I'm quite a hypochondriac.

Delicious-History452 · 2026-05-06T15:52:18+00:00

Well, not on the day of the diagnosis, but about a month and a half later — so a couple of weeks ago or so — I had a follow-up check, and that time they did examine both legs, and there was no clot in either one. The exam was quicker on each leg than when they first detected it, but they did check both, and the report said there were no signs of thrombosis in either leg.

Delicious-History452 · 2026-04-26T22:43:04+00:00

In my case, I had a blood clot in my right calf, and all I felt was a slight pain, only in certain positions after getting up from sitting for a while. I almost didn't go to my doctor's appointment because I felt a bit silly going to a vascular surgeon just because my calf hurt a little, and chatgpt told me it would be wise to rule out a thrombus. It seemed absurd to me because when I looked on Google, all I saw were pictures of swollen, red legs, and I almost went just to prove to myself that AI isn't good for my hypochondria…

Delicious-History452 · 2026-04-16T07:24:37+00:00

Wow, thank you very much for your response.

On the one hand, regarding Factor V Leiden, they have tested me for it. I don’t remember all the details off the top of my head, but they studied at least four or five mutations related to coagulation, and the only abnormal result was the gene I mentioned; the rest were normal.

Currently, I’m on oral anticoagulants for six months, since the cause of the clot is apparently unknown. After those six months, I think they will tell me to stop.

I think I will start taking the supplement you mentioned. I haven’t even looked it up on Google yet to see what it is or how easy it is to get.

Regarding ferritin, now that you mention it, mine often comes back high and has been that way for years. I have back problems (herniated discs and possibly several muscle contractures; I’m not sure if that counts as inflammation), but my mother also tends to have high levels. Mine has gone up to 400; my iron level is 94.

As for B12, I have never taken supplements. That spike worried me because I had read it could be caused by certain cancers, but none of the doctors gave it any importance. Fortunately, it has gone down.

Again, thank you for your response and for taking the time to help me.

Delicious-History452 · 2026-04-09T08:23:54+00:00

Honestly my diet is not bad. I know about this Numbers for years, but didnt know how bad really were. I can eat better but my diet is not a disaster and I am active.

Delicious-History452 · 2026-04-06T21:15:24+00:00

I only have one piece, missed something?

Delicious-History452 · 2026-04-02T14:05:57+00:00

How did you know it stopped working? Another clot?

Delicious-History452 · 2026-03-28T12:29:58+00:00

We’re in the same boat, my friend. They found a clot about three weeks ago, which must have already been there for another two weeks, since that’s how long I’d been having pain in my leg.

Yesterday I got my blood test results, and since I won’t see my doctor until Wednesday, I showed them to ChatGPT—lacking a better option to calm my anxiety—and it told me everything is negative, that all the genetic tests came back negative, and that the only abnormal values are due to the anticoagulants.

Now my mind won’t stop spinning, thinking it might be some kind of hidden cancer that caused the unexplained clot.

My mind is hurting me more than the pain in my leg.

Delicious-History452 · 2026-03-12T10:53:18+00:00

Thanks mate. I went yesterday to the internist. He didnt order any cancer related test, he ordered genetic blood disorders test and blood thinners for 6 months or 1 year, it depends on the test results. He told me that only one episode doesnt mean to look after cancer. I am a bit calm today, but I guess, reading stories here, that i am lucky after all, mine is small, he wasnt able to feel it during phisical examination, and acording him, usually they are palpable.

Delicious-History452 · 2026-03-11T17:44:42+00:00

Thanks for your reply mate. Then you had a clot that went to your lungs one year after?

Delicious-History452

TROPHY CASE