Are CKD and body odor related: Hi everyone... - Kidney Disease

Kidney Disease

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Are CKD and body odor related

kaeyreed profile image
12 Replies

Hi everyone! My husband has been diagnosed with CKD stage 4. Numbers all out of whack! We are waiting for referral to kidney specialist! My question today is if you have CKD stage four will it cause a strange body odor? My husband who is super clean has never really had a body odor! But he has a body odor now! I mean it’s awful! I’m not trying to be mean, I’m concerned! I almost can’t even take it! I am not trying to be insensitive I understand he is not well! What I am is worried and wondering if this odor means something scary! His gfr was 29! Bun 57! Creatinine is 2.36 and we cannot get his blood sugars to stay down below 226! Anybody have any info on this or maybe some advice? Thank you! Oh, don’t know if it makes a difference but he also has high blood pressure!

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kaeyreed profile image
kaeyreed
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12 Replies

Unfortunately yes, kidney failure can cause body odor. Especially the smell of ammonia.

I was a respiratory therapist and I have kidney disease. I remember when I was working with kidney patients that sometimes the smell reminded me of cat pee.

I worry about it a lot now.

Bassetmommer profile image
BassetmommerNKF Ambassador

Hi Kaeyreed,

I looked up your situation. You did not say what the smell was so I am going to go on two things. One can be the build up of toxins in the blood that come out in sweat. That could be related to CKD. ( read on) Does he have fruity smelling breath? That is his diabetes. Here is a good site about both: thompsontee.com/blog/medica...

this is an article on body odor or breath that is fishy in smell:

"Dietary adjustments include avoidance of choline-rich produce (eggs, liver, peas, soybeans and sea fish), which reduces the excretion of trimethylamine and may reduce the odour. The restriction of milk has proved useful in some cases" ncbi.nlm.nih.gov/pmc/articl...

It looks like that diet might have an impact on helping. His BUN is high which might indicate he is eating too much protein. That too can cause high urea which may also be connected to his odor problem. I would speak to the doctor and try cutting out all red meat and limit chicken and even fish and less dairy to see if he can get the BUN down and if that will impact his problem.

uofmhealth.org/health-libra...

You said he cannot get is diabetes below 200. That is a bigger concern. He needs to work with his doctor and a renal dietician to get that down. Diabetes is one of the leading causes of CKD. Is he diligent about his diet? I know it is hard because I was having issues with my diabetes. Turned out the medication I was on (Trajenta) was not working at all. My sugar was out of control, which exacerbated my CKD. I switched to Januvia. I was able to get my levels significant down and use less insulin (Lantus) which helped me to lose weight. Insulin makes you gain weight which is a cruel situation because it makes diabetes worse.

kidney.org/news/newsroom/fa...

Keep in touch and let us know how he makes out.

kaeyreed profile image
kaeyreed in reply to Bassetmommer

We saw kidney specialist yesterday! She wasn’t positive! She doesn’t think his gfr is going to come back up! She is sending him to an endocrinologist for help with blood sugar! It is so erratic! Said he needs to keep blood pressure down below 130! His blood pressure hasn’t been under 139 in over twenty years! So ijdk order a bunch of other blood tests and urine test to be done! Said that if there is protein in urine his prognosis is not good! If no protein not as bad! He’s been on BP meds for about thirty years and bs meds over 15/10 so ijdk what the future holds for him! We are doing everything they tell us to do

Bassetmommer profile image
BassetmommerNKF Ambassador in reply to kaeyreed

HI Kaeyreed,

This is all good. The endocrinologist will tackle the glucose. There are so many new diabetes products out there to help. My hubby was on metformin for years, which is not kidney friendly. He went off it and with the help of newer and better, he has completely gotten control over his glucose. I was also on a medication that was doing nothing to control my diabetes. I switched to something else, went on a renal diet and my glucose is now in a normal range and has been for months. Once your hubby gets his glucose in control, he will also be helping his kidneys. It may even help with his BP.

Try to take it one step at a time. The one thing you can do right now is look at what he/you and the family are eating. A renal diet is the best thing to get him on. He might be able to maintain his GFR if he is careful. It will help immensely with his glucose as well. Just watch the carbs. We have a lot of information on this diet if you are interested.

BTW, did you figure out the odor issue?

healthline.com/health/type-...

WYOAnne profile image
WYOAnneNKF Ambassador

Make sure you tell his doctor. He may be able to figure out better than we can what is truly going on. We can only comment if we have had the same experience. We are not medical professionals. I sure would make sure to call your doctor or make an appt especially since it is so bothersome.

Best of luck to both of you!

Momofson profile image
Momofson

My son sometimes loses a lot of protein. At these times we always smell a strong oily kind of body odor. He does not have kidney disease, just has a benign protein lose probably due to his thyroid problems.

On the other subjects, and ask your doctor since you are sick, but for leg cramps, the best thing in the world that will help is magnesium. Low magnesium can be a cause of leg cramps. I take it for restless leg syndrome and it’s like magic within 15 minutes! The problem with high sugar can be helped with taking cinnamon, and the best true cinnamon is Ceylon, though any pure cinnamon will help. Put it on your food or take cinnamon capsules. The only place you’ll find the Ceylon cinnamon is usually at the health food store or online. Read the very good studies done on both of these online.

In my opinion, it’s always better to take natural things first but since most doctors are not familiar with the natural process of healing, they will not know about these. The cinnamon helped my youngest son and many people I know keep their sugar within range. Hope it helps you!

WinterPortRose profile image
WinterPortRose

I am stage 4 with Amyloidosis AL with kidney involvement and I have just noticed a really bad smell...on my pj top...so i smelled my arm and I REEK!!! I smelled in the store recently and thought it was a mas passing me....it was just this morning that i smelled it again and realized it was me! It does not smell like rotten fish,like i read in one post...just nasty,dirty like I have always thought was when people didn't bathe or do laundry often.....you. i called my husband..and he said yes...you and your sheets smell bad....until this AM all I ever noticed was an occasional urine smell from needing to wear pads for leaks....but i have always freshened up my nether regions and put on a new pad when i smelled thst.....THIS is different. I read the rest of your post and i am glad you are getting more testing done for your husband. I am very interested in the smell issue.....I am going to call my neph. and ask what he thinks.. I also have Multiple Myeloma,,,but I am in partial remission for that. The Amyloidosis is a very rare condition...that affects different organs..mine affects my kidneys. Good luck and God bless you both. Rosie

AvaMarie profile image
AvaMarie

So relieved to see this thread. Newly diagnosed and appreciate finding this and seeing the support and information. My eGFR is also @ a 29. Seeing Nephrologist’s next week. In all honesty I am anxious. I was so shocked, I just thought I was being a baby with the extreme fatigue, pain in back, and the other problems that go with this. At first after I thought the shock set in I fooled my happy self into charging to live every minute to the fullest. Fell asleep pretty quickly there. But still trying so hard to be positive. But underneath it all I am scared.

Shawnallen profile image
Shawnallen

Hi my boyfriend has been just diagnosed with stage 4 kidney disease too. I had noticed an odor as well awhile back before knowing this. Started doing some research and yes they will have an odor almost like an ammonia smell. I’m not sure how to bring it up. He thinks which maybe for a normal person he can shower every other day but for someone who has this it should be daily. I’m a fanatic on hygiene I shower daily. I just don’t know how to bring this to his attention without hurting his feelings. I understand how you feel. I know this may not have helped much but I thought I should say something. This is tough!

cvzxc profile image
cvzxc in reply to Shawnallen

I literally just had this happen to me today. I couldn't understand why my mother (age 87 with CKD stage 4) was smelling really badly. Then today it was just awful. I stood over her chair for something and the smell was rising up. I bent down and smelt her neck and this dreadful odour hit me. I feel so sorry for her as she showers every day and changes her trousers and underwear daily. She has an in-dwelling catheter and this is washed out every day. I know it's simply her skin which is giving off the smell. I was hoping someone might have ideas on how to disguise it? Highly perfumed body lotion on arms and neck. I've even thought of a cardboard car airfresh she could pop in a pocket or something.I have to get used to it as I'm her carer but I don't want her to be embarassed when socialising.

If anyone has any ideas they would be most welcome

My_Kidneys profile image
My_Kidneys

Good question. I am stage 4 ckd and sometimes my odor smells like strong ammonia. I don't know what what causes it.

cvzxc profile image
cvzxc in reply to My_Kidneys

Have you found a way to conquer the odour?? I would be grateful of any ideas.

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