Elevated ammonia levels

Last week l went to the doctor about my ammonia level and its up so unfortunately l am back on my lactulose. And now my general practice doctor is retiring so it's like l have to start all over again. My hepatologist is still around but you usually dont see them that often. So you have to know the side affect of when your levels are high. And some people don't have the same symptoms. So l am suppose to see one of the new doctors in his office he says is good. We will see. It's seem like the older doctors are retiring and we are getting younger new ones. But maybe that's goof because alot has changed.

Hi @techi,

With regard to high ammonia levels, I couldn't find other members besides @contentandwell, who may be able to give you more information.
Ammonia comes from protein in the diet, and there is some evidence that shows people with high levels of ammonia do better when they get their protein from vegetables (beans, lentils) and from dairy products (eggs, milk, yogurt) instead of from meats.
The Lactulose is prescribed to push food through the bowels more quickly. That way, less food is absorbed, the liver has less work to do, and fewer toxins make their way to the brain.

The same thing is happening to my husbsnd. He is falling a lot now. When he takes the latulose his stomach has the same problem. My husband has been pushed to many doctors. Neurologists see nothing wrong with his brain. 2 liver doctors deny that it is due to high ammonia level. I see the doctor reply to your message below and it does not address your walking problem. This is bring ignored and it is strange. There is a drug that is on the market that removes ammonia through urine and easy on stomach. Super expensive in the thousand of dollars.
I talked to a pharmaist and she said to take half doses of latulose until you get 2 bowel movements or meet the full daily dosage amount that your doctor gave you. It is easier on the stomach. I am still checking on this walking issue. Wish the doctors woukd acknowlege it.

Welcome to Connect @chrissey.
I noticed you mentioned, "I see the doctor reply to your message below and it does not address your walking problem. This is bring ignored and it is strange.”
I thought I’d clarify that the responses you see (as above) are from Moderators and Mentors on Connect – I’m a moderator. Moderators monitor the messages posted by Connect members to keep the community safe, supportive, inclusive, and useful. We cannot diagnose conditions, and the messages are solely the views of the members; they do not represent professional recommendations, diagnoses or advice from Mayo Clinic.
You can learn more about the moderation of Mayo Clinic Connect here, https://connect.mayoclinic.org/page/about-connect/tab/moderators/

@chrissey, I’m so glad that you’ve met @techi, and I’d like to connect you with some other members who might be able to share their insights with you. When did you notice that your husband’s falling had become more frequent? Have the doctors offered an explanation for the high ammonia levels?

My husband's falling became more frequent since March 3. No the doctors have not given me a reason for his falling. I am guessing that it is due to high ammonia levels or HE. I got the run around to see 2 neurologist and then a regular general doctor. Then I went to a liver transplant center and they didn't know and just wanted to get rid of him as a patient. I am very mad that they will not even acknowledge this has anything to do with his liver problem I am only being straightforward about this because this issue seems to be ignored.

I was just diagnosed with high ammonia levels, I also have gastroparesis. Taking lactulose. Anyone else?

@techi @chrissey @peder417 @kanaazpereira
Hi all, somehow when these were originally posted they got by me without my noticing. I apologize for that.
Have any of you actually been diagnosed as having liver problems? I had non-alcoholic cirrhosis which is a cause of ammonia, and HE (hepatic encephalopathy) episodes and was on lactulose for them. My high ammonia levels were discovered and that led to tests which diagnosed cirrhosis. After cirrhosis was diagnosed I went to a hepatologist. She then prescribed xifaxan for the HE episodes, and to discontinue lactulose. The xifaxan warded off the HE episodes for almost a year. When they resumed I had to start taking lactulose again along with the xifaxan.
If you have not been diagnosed with liver problems, to what are your doctors attributing the confusion/dizziness/falling?

I don't know if high ammonia problems can be caused by conditions other than liver problems, but if not I think you should definitely be seeing a hepatologist. Lisa, when I was seeing the hepatologist my appointments were every three months. If I recall correctly, as my condition worsened I did see her more frequently. Of course if I had a problem I could call and speak to her or her NP and see one of them.

Chrissey, I presume that xifaxan is the drug you referred to as being expensive but helpful. It is both of those but I have heard that the drug company has a program to help patients who do not have the means to afford the drug. Your hepatologist should know more about that and may even be able to give you a form to submit to the company.

Kanaaz, I didn't know that "Lactulose is prescribed to push food through the bowels more quickly", I thought it helped to dissipate the ammonia but those two things are probably not mutually exclusive and I find your explanation to be more understandable, knowing personally the effect of lactulose.

If I can answer any questions I would be happy to help. Again, I apologize for jumping in here so late. I know the agony you all must be going through. I went a very long time with no diagnosis and that too was agonizing, not knowing. Since the ammonia affects your brain I was sent to a neurologist because my doctor thought my problem was neurological. The neurologist was the one who actually first suggested liver problems and had them do an ammonia test on me, leading to a diagnosis that was metabolic, not neurologic.
JK

@jk

Thank you jK for responding. My husband has been taking both lactulose and rifaxan for the last 5 years. These are as not effective as they once were. I now go to 2 doctors. The new one put him on zinc supplements which is a drop in the bucket. These drugs and supplements except for rifaxan are from the 1950's. Rifaxan is costly but the expensive drug that I am trying to get my husband is RAVICTI.
Drug companies will not help you with the cost of the drug after you are on Medicare. You have not hit this disgusting thing called the donut hole. I have MS and only use orphan drugs. I get no help from the drug companies since I am on medicare.
So this past year, my husband and I spent $15,000 for medicine. Yes I have applied for assistance but if you get it is very little
I think the doctors are stuck in the 1950 because the new drug are so expensive.
Jk is your cirrhosis caused by hepatitis? Please take that new drug that cures it. Again very expensive but worth it.

Welcome to Connect, @peder417. I’d like to invite fellow members @adah @frankw54 @kltchrmn to join this discussion as they’ve talked about high ammonia levels as well.

The most common cause for elevated ammonia (Hyperammonemia) is liver damage and abnormal liver function. However, it can occur without liver failure, and because such occurrences are much less common, diagnosis may be missed or delayed.
– https://journals.lww.com/ccmjournal/Citation/2018/09000/Features_of_Adult_Hyperammonemia_Not_Due_to_Liver.33.aspx
– https://journals.sagepub.com/doi/full/10.1258/acb.2011.011206
@contentandwell, I do agree with you, that prompt diagnosis and appropriate intervention by seeing a liver specialist/hepatologist is especially crucial in these cases.

Lactulose is a synthetic sugar used to treat constipation. It is broken down in the colon into products that pull water out from the body and into the colon. This water softens stools. Lactulose is also used to reduce the amount of ammonia in the blood of patients with liver disease. It works by drawing ammonia from the blood into the colon where it is removed from the body. https://www.healthline.com/health/lactulose-oral-solution
I’m tagging @banzai @stella25 @gaylea1 have also written about lactulose, and I hope they will be able to share their thoughts on its use and effects.

@peder417, you might be interested in going through a few discussions on gastroparesis, where members have shared some incredible insights. Here’s one you might want to join in; feel free to share your concerns and tag members in this conversation:
– https://connect.mayoclinic.org/discussion/gastroparesis/