Abnormalities in the urine of people with ME/CFS? A clinician asks for feedback

T

Tom Kindlon

Senior Member (Voting Rights)
An interested clinician sent me the following observation/question. I will pass along any responses that I find of interest, or perhaps simply direct them to this thread.

This aside, the reason for my message is a patient I saw today. She noticed that whenever she's experiencing PEM the smell of her urine is different too (more "chemical"), which her husband confirmed. I have tried to find a case-report or more systematic literature on this and failed. However, if this is a common (overlooked) symptom or if there is literature about single patients I thought you, or someone you know, would probably know it. If so, could you send me link? Personally, I think a changing smell of urine during PEM makes a lot of sense and in the long run identifying what is different in the urine (which would probably be detectable with a mass spectrograph, but not routine urine tests) could be a starting point for further research (but only if it is common, and not only a thing just this one patient noticed).
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I wasn't sure which forum to post this to.
 
Tom Kindlon said:
An interested clinician sent me the following observation/question. I will pass along any responses that I find of interest, or perhaps simply direct them to this thread.
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If I remember right Chris Armstrong/Neil McGregor measured urine during PEM. According to the University of Melbourne website this is his email. n.mcgregor@unimelb.edu.au

Neil talks about urine in PEM in this presentation around ~6mins. "Dramatic increase in amount of metabolites in urine". I recommend the clinician watch the full presentation, it is very thought provoking.
https://mecfsconference.org.au/videos/neil-mcgregor/
 
@Tom Kindlon

An observation based on my n=1 research :

After crashes there was a definite change of the colour in my urine. Darker urine was always associated with severity of symptoms/crashes. Lighter urine was always associated with "good days". I tried drinking more water (to make sure i was hydrated) several times but there was no apparent change to the colour.
 
There may be an interesting logic to looking at urine.

The homeostatic systems of the body are designed to keep the composition of blood constant, more or less.

Those homeostatic systems depend on other compartments being very inconstant. So the air you breath out changes in response to burning of glucose to CO2, or the ingestion of acidic material. More than anything, the urine changes in whatever way is needed to keep the blood constant. It changes in terms of water content, pH, sodium content and also waste products like urea, rate and urobilinogen that are produced at different rates.

So during PEM it makes sense not to look at the blood being kept constant but at the fluid that does all the shifting needed to achieve that. I guess the urine is a bit like the stock exchange - an indicator of flux.

Change in the urine during PEM might be very simple. It might be more concentrated or contain more haem breakdown products or more ketones. Some time back I suggested that it might be worth PWME wearing actometers for several months to get a picture of the pattern of activity and the way it differed from normal not so much in quantity as in pattern. Repeated urine testing might show something up in the same way. It might show nothing very interesting but I think there is an argument for considering it.
 
Yes my pee absolutely stinks when I am bad. Not the same regular urine smell but stronger, but just i dont know, nasty & 'not right'.
I do get very very thirsty when I'm bad & therefore pee a bit more but nothing changes that smell. I not noticed a colour change but I will observe.
FWIW it was one of the first 'odd' things I noticed when I was milder (& in denial that there was anything wrong)... That my pee sometimes smelled very strong & unusual. When I mentioned it to doctor he rolled his eyes at me so I never mentioned it again.
 
strategist said:
I don't have a habit of smelling my urine.
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LOL neither do I! But when it smells strong you dont have to actively 'smell' it, it wafts up at you out of the bowl. Ugh sorry that's a bit TMI :sick: :speechless: :D

Mind you i do have a very sensitive sense of smell, always have had since i was a kid. I could smell a bonfire with the windows shut & would alert my mother to get her washing in off the line :D
 
Yes I've noticed recently my pee stinks mostly in the morning. I've only noticed this recently as I've gotten even sicker. The one thing I noticed from illness onset which has continued is foul smelling sweat. Completely different to pre illness sweat. Really gross.. Toxic!! I've noticed change in odor in other areas but I will go no further. It's nothing something I've looked for, it's just obviously there. Bizarre.
 
For me more frequent urination is a symptom of crashes and it seems to smell more at these times.

I first noted it around the time frequency became an issue, seven or eight years ago, when it seemed to have the asparagus pee smell, even though I had not eaten any. My GP did not seem to consider the smell significant once we had ruled out prostate cancer, so I have not discussed it since.

Subsequently frequent urination is almost invariably linked to PEM, at its worst every 15 minutes, returning to nearer normal in good periods. It seems to smell more at such time, not just the normal diet related variation, though food related variation in general seems more noticeable too (but it is harder to be certain whether this is just the potential ME habit of desperately trying to establish symptom patterns, indeed I wonder if this rational attempt to make sense of our diverse varying symptoms is a factor in some doctors regarding us over focused on our physical symptoms).

Now the smell seems to vary at such times [during crashes], sometimes still the asparagus smell, sometimes fishy (I had wondered about possible infections, but there are no other related symptoms) and sometimes the more chemical odour people describe above.
 
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