Elevated ammonia levels

Posted by Lisa @techi, May 12, 2018

I want to know what number is considered a high ammonia level. I just had a test done and l was told my number was 59. The nurse called and said ammonia levels were elevated. I had the test done because when l went shopping l couldn't walk and l was so dizzy. I try to pretend everything was ok because l get so embarrassed when l fall. Then when l got out the store l.had a hard time walking so l didn't want to drive right away so l waited and then l drove home. When l got home l had a hard time walking to the house but if l fell at home it would be ok. No one would be looking. I hurried up to get something to eat and drink but l didn't think l was dehydrated because before l left l had ate and drank. Then l went to sleep which always happen when l get like that. When l told the doctor that is when l asked to have my ammonia levels checked since a hepatologist doctor told me to discontinue my lactulose now my doctor has put me back on it. And now my upper stomach under my rib cage is hurting, l feel like l am going to threw up and my upper and lower stomach is swollen so l just want to know if anyone had that problem and if it means your levels are high. I just started back on my lactulose. So if anyone had or have that problem will you please tell me your experience.

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?

@kanaazpereira

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?

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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

@contentandwell

@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

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@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.

@peder417

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

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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/

@kanaazpereira

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/

Jump to this post

@kanaazpereira I don't know much about the use of lactulose. It came up for discussion with my son's doctor in January for prevention of hepatic encephalopathy. My son who has PSC has not presented with HE symptoms. His doctor brought up lactulose as a possible treatment down the road in the event he should begin to have HE episodes. I would be very interested to hear what the others have to say about it's use & side effects.

@chrissey

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.

Jump to this post

@chrissey My cirrhosis was caused by NASH — nonalcoholic steatohepatitis, which happens if fatty liver is not treated. With the diet in our country, this is getting more and more common and has not generally been tested for. I know that it is advised now that if a person has any risk factors — overweight, diabetes — they do testing. As it was, by the time I was diagnosed my hepatologist said I probably had cirrhosis for 10 years. Its symptoms start out vague.

I did take xifaxan and did hit the donut hole. When the hepatologist first put me on it I thought I would just take it on months when I really had to be OK, for instance when we might be vacationing or something, but my husband wanted me on it all the time. It was worth the sacrifice, it kept the HE episodes away for about 10 months. When I finally had an episode again I had to add lactulose back into the mix.
I had a liver transplant in September 2016. Hallelujah! When I was hurting in the hospital my husband would joyously remind me
"no more lactulose!" I hated that stuff.
So does your husband have cirrhosis, and is he a transplant candidate?

@stella25 As I mentioned above, it does work, but not nearly as well as xifaxan. I am not familiar with the newer drug that chrissey mentioned. Lactulose makes most people a bit nauseated for a while after taking it, but it helps if you take it in some juice, like cranberry, or soda water which was what I used.
Please feel free to ask me anything else about it… been there.
JK

Liked by stella25

@contentandwell

@chrissey My cirrhosis was caused by NASH — nonalcoholic steatohepatitis, which happens if fatty liver is not treated. With the diet in our country, this is getting more and more common and has not generally been tested for. I know that it is advised now that if a person has any risk factors — overweight, diabetes — they do testing. As it was, by the time I was diagnosed my hepatologist said I probably had cirrhosis for 10 years. Its symptoms start out vague.

I did take xifaxan and did hit the donut hole. When the hepatologist first put me on it I thought I would just take it on months when I really had to be OK, for instance when we might be vacationing or something, but my husband wanted me on it all the time. It was worth the sacrifice, it kept the HE episodes away for about 10 months. When I finally had an episode again I had to add lactulose back into the mix.
I had a liver transplant in September 2016. Hallelujah! When I was hurting in the hospital my husband would joyously remind me
"no more lactulose!" I hated that stuff.
So does your husband have cirrhosis, and is he a transplant candidate?

@stella25 As I mentioned above, it does work, but not nearly as well as xifaxan. I am not familiar with the newer drug that chrissey mentioned. Lactulose makes most people a bit nauseated for a while after taking it, but it helps if you take it in some juice, like cranberry, or soda water which was what I used.
Please feel free to ask me anything else about it… been there.
JK

Jump to this post

Thank you @contentandwell. I remember you posting not long ago about your extreme dislike of lactulose:-( I'm glad you mentioned xifaxan. That was the other medication my son's doctor told us about. She did say that would be her first choice to treat HE if needed. Congratulations on a successful liver transplant! My son is stage 4 cirrhosis. He completed his evaluation for transplant a little over a week ago. Not sure if & when he'll be put on the list as is the case with PSC patients his MELD fluctuates.

@stella25

Thank you @contentandwell. I remember you posting not long ago about your extreme dislike of lactulose:-( I'm glad you mentioned xifaxan. That was the other medication my son's doctor told us about. She did say that would be her first choice to treat HE if needed. Congratulations on a successful liver transplant! My son is stage 4 cirrhosis. He completed his evaluation for transplant a little over a week ago. Not sure if & when he'll be put on the list as is the case with PSC patients his MELD fluctuates.

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@stella1 It must be a huge relief to you and to him that he is now a candidate for transplant. What is his MELD now? I think when they put me on the list I was at 18. I was at 11 when I first went to the hepatologist but it quickly went up. I was on the list for about 16 months, maybe a little less.
My hospital is in Region 1 and I was told right up-front that other regions may be able to offer a transplant at a lower MELD. I was ready to list at Mayo, I had spoken to them and they felt they would be transplanting me at MELD 28, but my hospital (Massachusetts General) came through when I was at 28. At that time they were usually transplanting at MELDs in the low 30s. I think being blood type B helped.
I sincerely hope your son never has to deal with HE. Not everyone does. Even though I went a long time without an episode, I woke up every morning praying that I would get through the day without one. It was actually HE episodes that caused my doctors to diagnose cirrhosis. It took them almost a year and a half, but they weren't putting all my symptoms together very well. I know now to not stick around here with no diagnosis, to head right to Boston. What led your son's doctor to diagnose cirrhosis? It sounds as if he was pretty lucky for it to have been diagnosed.
JK

Liked by stella25

@contentandwell My son was diagnosed with Primary Sclerosing Cholangitis a little over a year ago. At the time they did MRCP, ultrasound, fibroscan, etc. which indicated he was stage 4 cirrhosis. They removed his gb last October and did a liver biopsy at the same time. Biopsy confirmed the stage 4 diagnosis. He decompensated shortly after the cholecystectomy. During the holidays he was in the hospital twice. He had a blocked bile duct and an infection. At the time his MELD was 34. After 2 ERCPs and a couple rounds of antibiotics he stabilized. His MELD right now is 17. He'll be transplanted at the University of Utah. He's blood type A so a little bit of a disadvantage. His weight was down quite a bit. The transplant team has him eating frequently throughout the day to gain weight which he has put on about 18 pounds in the past month. Plus they want him taking in 100 grams of protein a day. Believer it or not, it's not that easy. I'm sorry you had to go through the HE episodes. Must have been extremely scary for you & your family. Hopefully we don't have to face those. Thank you for sharing your story. I'm sure I will have more questions for you as we continue our journey. I wish you blessings and continued good health:-)

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