Ammonia smell

[Ladyprudence]

Do any of you have a scent of ammonia about you? I could swear I am smelling it on myself, and don't know who to ask around me. It could be in my mind because I've read you can get that smell with Kidney Disease. Otherwise my sense of smell is a bit poor, so it really could be my imagination. Any help will be appreciated.

[S_dillow]

i have it when i go bathroom but thats the extent as far as i can tell.

[drmind]

You may not be imagining the ammonia smell. I goggled "ammonia and kidney disease" and found numerous posts about this. Here's one thst msy help "Why do I randomly smell ammonia?Your kidneys are responsible for filtering waste products from your blood, which are then excreted in urine. If the kidneys aren't functioning well, waste materials may build up in the body. These materials may produce an ammonia-like smell that you could notice in your breath and the taste and perspiration. "

Please talk to our kidney doctor about this as there may be some treatment neded.

[Mich1949]

Yes, that is quite common with kidney disease....

[CKD3Khan]

I had the ammonia smell on my breath or even burps after eating a meal. I found out I had CKD Stage 3B. My blood test revealed my urea level (ammonia) was at 80 and should be below 20. I spent 4 days in the hospital receiving fluids to reduce Creatinine and Urea. That brought the levels down to a safer level, but it took several weeks of careful eating and drinking a lot of water to reduce the levels further. Ultimately, with kidney damage, my levels may never return to normal, but the ammonia odor/taste did go away. It's one of the things I watch for to alert me to possible issues like UTI, other illness putting strain on the kidneys.

[orangecity41 NKF Ambassador]

I had the ammonia smell until my CKD 3b was put under control by my CKD diet. Maybe was result of high phosphorus, potassium and sodium in my blood?

[Darlenia]

This question was recently asked in the Kidney Dialysis community. Maybe you can do a search - it's probably been brought up in other places too. It has a name - uremia - which can develop in CKD, usually the latter stages. Uremic levels in the blood can be "off" due to various imbalances which can lead to an "ammonia" type of body odor. (If you're a diabetic, the smell can also be a bit sweet.) It can alter the sense of smell so some don't notice it. Another member mentioned probiotics helping her. My hubby never tried probiotics specifically for that but it's worth checking out in my opinion. (He used probiotics for c-diff while on dialysis; his body loved it.) Above all, bring your concern to your nephrologist's attention - a lab check and change in treatment plan or diet may be possible. Maybe do all three - change diet, change treatment , and add probiotics! I truly hope you find a solution

[Ladyprudence]

I appreciate all your responses. It's good to know that I haven't been imagining the ammonia smell. I was Stage 3a and am probably in stage 3b now. I am 'tested' for everything every 6 months by my GP, haven't been to the nephrologist for several months because of extensive street repair around him! Thought I was doing okay.

I did not notice this smell before I was put on Farxiga a few months ago, but that will soon be a moot point because insurance has cut me off that drug.

I got lax in my diet. So there are a few things I'm going to be changing anyway.

Darlenia, I've always been interested in probiotics, but there are so many variations on that shelf, I never knew which one to try. Maybe the doctor can answer that, but she's best at ordering tests. Thanks again.

[PecanSandie in reply to Ladyprudence]

A good probiotic for me was Align. I took it for many years to help with IBS and it helped.

[Ladyprudence in reply to PecanSandie]

Pecan Sandie, my husband uses that too and likes it. Good place for me to start.

[Ladyprudence]

A follow up on my post to you a week ago about the ammonia smell, and hoping you can tell me if all this sounds right. My doctor had me come in for a urine culture. Results from that were abnormal for Glucose, Blood UA, Squamous epithelial, and bacteria. My Egfr is 53.3, which is down from probably 56.

The blood in the urine, I am not that concerned about because I've had that a few times over the years. Maybe I should be though.

She didn't seem to be too excited about any of it. Said I 'tested negative for true infection', and to follow up if symptoms persist.

She didn't address the ammonia smell/breath at all, but I mentioned to her that I was stopping the Farxiga in case that was the cause. Insurance is cutting me off in a few weeks anyway, so I went ahead and stopped on my own. I also adjusted my diet again. I had chocolate, salt and sugar for a few days. Went crazy, I guess.

So, in about 3 days after stopping the drug and eating better, the ammonia smell is gone as far as I can tell. I feel good, BP is okay, and urine output and color seem to be fine. But I don't want a sense of false security, so will be monitoring myself carefully as I can.

I have a couple of questions to you. My research on Farxiga mentioned that what I've just described could point back to that. Have you ever heard of this happening? Also, I hear many of you talk about size of food portions. Would you mind explaining why that can be helpful? I'll take any help and ideas I can get.

[Ladyprudence]

I'm really disappointed that no one has addressed my questions regarding Farxiga and food portions. It's discouraging and makes me wonder why I'm even in here.

[Badger2024 in reply to Ladyprudence]

Maybe start a new post. People often just skip past old posts

[Ladyprudence in reply to Badger2024]

Thank you, Badger2024. You are right. I'm floundering through this. I was using the old post because I didn't know how to start a new one. I'll learn.

[Badger2024 in reply to Ladyprudence]

There is a menu at the bottom that says my hub/chat/post/alerts/menu

Just press post and it will then ask which community you want to post in. Press kidney. That’s it. You can start a new post

[Ladyprudence in reply to Badger2024]

Thank you, Badger 2024. That was really helpful. Not gonna give up.

[nonna70]

Hello, I am glad to take Farxiga as it helps my sugar. As to food portions, about 1/2 cup is usual for most vegetables and fruits; then there's 4 asparagus spears and one tomato slice. Meat is 3-4 ounces about the size of your palm. I found these on kidneyfund.org under kidney kitchen.

[Ladyprudence in reply to nonna70]

Thanks, Nonna70. I believe I've been eating too much. As for the Farxiga. They turned me down for another 90 days, so I just stopped. I will get all this straight with my doctor when I see her next. As I see it, you have to have CKD and Diabetes 2 before Insurance will pay for it, but maybe she can think of something else to help.