More symptoms: Has anyone with severe... - British Liver Trust

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buffy154 profile image
14 Replies

Has anyone with severe Liver disease notice strong body odor?. I am in the middle of tests and I cant seem to get rid of these. I take a shower and they are back within an hour. I also have what seems to be chronic low grade HE. The only way to describe it is you feel fuzzy and dizzy all the time. I see a counselor but am having a hard time dealing with all of this. Thanks.

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buffy154 profile image
buffy154
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14 Replies

I developed a strange body odor with my alcoholic steatohepatitis. This odor was not "stinky pits" / need a shower type smell, but a strange metallic smell like old copper pennies. It also didn't come from my arm pits, but seemed to come right out of my head & chest.

I would scrub myself from head to toe and dry myself with a clean towel, which would get stinky from me using it right out of the shower. My bedding & clothes would take on this smell, & it wouldn't wash out in the laundry.

The best theory I found was "lipid peroxidation" that generates Malondialdehyde (MDA) and Nonenal. My odor issues passed after a month or so into my detox, and in the end, it turned out I did not have advanced liver disease.

Hope this passes soon!

AyrshireK profile image
AyrshireK

There is certainly a condition called Fetor Hepaticus which is toxins building up in blood stream and making there way to lungs leading to a yucky breath - healthline.com/health/fetor... .

Body odour can also be related to toxins building up and leaching through the skin - "Diabetes, kidney or liver problems, overactive thyroid, and (extremely rare) genetic conditions can cause a change in your normal body scent. In some cases, an odd body odor can be a sign of something more serious. For example, a bleach-like or urine-like smell may mean kidney or liver problems."

Definitely something else to tell your specialists to help them with diagnosis.

Katie

in reply to AyrshireK

I don't have an odour but sweat profusely from my chest upwards. I also seen to have low grade HE, same description as you but I also have times when I have nodded off in the chair and can't remember anything from when I went to sleep and after I woke up, gradually certain things come back to me. my dr thinks it's my meds. Watch this space!! Love and hugs Lynne xxxx

buffy154 profile image
buffy154 in reply to

Yea, its a strange sweat on my upper stomach. Weird smells and the HE is better when sitting down. My body temperature just always is off. Feel like I have the flu continuously. I am having a hard time dealing with this because I did this to myself. I am hurting my mom and dad because I have to live with them now. They are in their eighties and should not be worrying about their 52 year old daughter. I am really sad all the time because I cant do anything to get better. They are having trouble understanding this. My gastro says it is likely I have ESLD but we are doing more tests just to have it on paper.From there after I get formal diagnosis I don't know what I will do. I am lucky they are in good health right now. My mom wanted me to look at jewelry to inherit today. I just said Mom, It is most likely I will go before you. She just looks at me like she doesn't believe me. This is so hard. Unless I have a transplant, I don't think I will live more than two years. I have been fighting with Drs for over a year. Now things are showing up. I am so stupid for everything I have done to myself. I wish I could go back even a few years and totally stopped drinking and I might not be where I am now. Thanks for listening.

in reply to buffy154

Hi

I really feel for you. I've got Nash with some fibrosis caused by meds from my drs but this doesn't stop me thinking of you. It isn't your fault so stop blaming yourself. Always here for you. Love and hugs Lynne xxxxje

in reply to buffy154

Hi buffy

What have doctors done to try and minimise HE. I had Lactulose, Rifaximin, self administered Enemas, and 2 and a half litres of water a day. Didn’t completely stop HE but I think it helped!

Miles

🇧🇧

buffy154 profile image
buffy154 in reply to

They haven't given me anything. I don't have a formal diagnosis. I have a Dr. now who is listening because all basic tests come back normal. He is willing to give me lactulose but I don't have episodes. It's constant dizzy and fuzziness been this way for a year. I have a fibroscan in about a week. I am bloated so I don't know about drinking about all that water. I have had 2 ultrasounds and they say everything is fine and they don't see fluid. Let me tell you, I am bloated and I see and feel it, but its not extreme so Dr. s label it as fat because nothing shows on ultrasound. I have had no appetite for a year. I make myself eat. Its painful at times that's how full I feel. Very uncomfortable but its not extreme yet. I guess I just wait. Everything is different from my skin and hair texture. the small veins that are around the bottom of my stomach. I look ten years older from last year. I hate myself for what I am doing to my family and it hasn't even gotten bad yet. I am so sad for what I am doing to my mother and father.

Simonbaxter1 profile image
Simonbaxter1 in reply to buffy154

I totally agree, that's exactly how i see things! But all the very best and good luck!

in reply to

Hello lynne master of arts - i still have exactly same symptoms as you (well from what you say in your post!) and now 4 months post tp - but so many other things are great, and I deffo feel like a new man in comparison to pre op 😁👍

Miles

I think I know exactly the smell your talking about. It's not a B.O smell. It's like a pungent stink. Leaves your pillows and shirt smelling like you might have died iinside. I use to get it quite frequently when I was a heavy drinker and smoker. I still do smoke ( working to cut that out currently) but every once and a while if I have to many cigarettes that smell has returned. Do you smoke?

buffy154 profile image
buffy154 in reply to

No, I don't smoke. It started about 3 months ago. It just lingers and I never feel clean because of it. Drives me insane.

My thoughts at the time were that the pungent smell was coming from my husbands rotting internal organs

buffy154 profile image
buffy154 in reply to

Maybe it is.

Julie8 profile image
Julie8

Yes in the last few months using the same regime as always but early morning arm pit smell. Glad someone said I was too embarrassed to bring it up. Never thought about it being toxins will speak to nurse

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