1. < Digestive Health

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.

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chrissey | @chrissey | Feb 26, 2019

@jk thanks for the reply. I have tried 2 different transplant center. My husband is 67. I know the cut off is 70. So I am really pushing for help. When my husband got really bad since last March, his liver doctor gave me the run around. Told me it was a sugar problem. His sugar doctor took a month to see and said it was not sugar, in fact his sugar was being very well maintained. So then I was told to try a neurologist, his brain is normal. I even had to go to another neurologist and he said the same thing. So I decided to go to the liver transplant center in Newark. He has no cancer, no brain problem but since last March he has trouble walking. High ammonia like I said. Newark said not mobile enough and was told not to come back. So I went to New York presy he gave me zinc which is a drop in the ammonia bucket. Zinc is from the 1950's
Thanks for the info on SRTR ORG. I will check it out. I really appreciate your sympathy.

REPLY
1 reply
JK | @contentandwell | Feb 26, 2019
In reply to @chrissey "@JK thanks for the reply. I have tried 2 different transplant center. My husband is 67...." + (show)
@chrissey

@jk thanks for the reply. I have tried 2 different transplant center. My husband is 67. I know the cut off is 70. So I am really pushing for help. When my husband got really bad since last March, his liver doctor gave me the run around. Told me it was a sugar problem. His sugar doctor took a month to see and said it was not sugar, in fact his sugar was being very well maintained. So then I was told to try a neurologist, his brain is normal. I even had to go to another neurologist and he said the same thing. So I decided to go to the liver transplant center in Newark. He has no cancer, no brain problem but since last March he has trouble walking. High ammonia like I said. Newark said not mobile enough and was told not to come back. So I went to New York presy he gave me zinc which is a drop in the ammonia bucket. Zinc is from the 1950's
Thanks for the info on SRTR ORG. I will check it out. I really appreciate your sympathy.

Jump to this post

@chrissey Not all transplant centers have an arbitrary cut off age. I don't believe mine, Mass General, does. They put you through a battery of tests and determine if you can withstand the surgery. I was actually surprised at how healthy I was/am! I was two days short of 69 when I had my transplant. There are people in their sixties who are not as healthy as people in their seventies, so it's crazy to restrict by age.

You may have seen previous posts of mine. My HE episodes were thought to be of neurological origin so I was sent to a neurologist. He was the doctor who first suggested that it was my liver, after which with further tests they diagnosed NASH cirrhosis.

Don't give up. Try another transplant center. I think those that are at teaching hospitals may have better. NY Presbyterian is associated with Columbia, isn't it? If so I am surprised that they were not receptive.
I hope and pray that you find a center that will take him on. What causes his mobility problems? I am wondering if that restriction is because part of the recovery process requires mobility. I did have PT after my transplant.
JK

REPLY
chrissey | @chrissey | Feb 26, 2019

@jk You have been very supportive. Thank you again. You are correct. I think mobility is part of the recovery process. At this point in time my husband mobility comes and goes with his ammonia level. That is why I want the drug RAVICTI It would improve his condition and increase his stamina. Lactulose causes severe diarrhea and he is locked to his bathroom closeness. It also saps his energy Talked to 3 doctors now about this and all I get is that is not good and that should not happen. All I think when they say this is "what the what????"

REPLY
1 reply
JK | @contentandwell | Feb 27, 2019
In reply to @chrissey "@JK You have been very supportive. Thank you again. You are correct. I think mobility is..." + (show)
@chrissey

@jk You have been very supportive. Thank you again. You are correct. I think mobility is part of the recovery process. At this point in time my husband mobility comes and goes with his ammonia level. That is why I want the drug RAVICTI It would improve his condition and increase his stamina. Lactulose causes severe diarrhea and he is locked to his bathroom closeness. It also saps his energy Talked to 3 doctors now about this and all I get is that is not good and that should not happen. All I think when they say this is "what the what????"

Jump to this post

@chrissey Lactulose is one of the few drugs that have to be "titrated" by the patient. If he has too many bowel movements he needs to cut back a bit on the lactulose. When I was in the hospital once for an HE Episode the hospitalist who discharged me put me on the maximum dose. It was unbelievable. I had to basically stay in the bathroom because if I didn't, I wouldn't make it there. I ended up basically cutting that amount in half.
Speak to the doctor about this, but this is what I was told, both by the local hospital I was in for HE episodes, and by MGH where my hepatologist is. When you and he are able to get him on the correct dosage he should have about three loose bowel movements a day. Some days I would not and I would temporarily increase the amount of lactulose I took. It's really a tightrope. When you get it right though, you can get out of the house and do things.
JK

REPLY
fcleaner1 | @fcleaner1 | Feb 28, 2019
In reply to @chrissey "My husband's falling became more frequent since March 3. No the doctors have not given me..." + (show)
@chrissey

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.

Jump to this post

Doctors just do not care anymore

REPLY
1 reply
fcleaner1 | @fcleaner1 | Feb 28, 2019
In reply to @contentandwell "@techi @chrissey @peder417 @kanaazpereira Hi all, somehow when these were originally posted they got by me..." + (show)
@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

Jump to this post

Lactulose is made to push food though the bowls and liver more quickly to take out the toxins out, that higher the ammonia level in your body that they call brain fog. But if the lactulose does not work it will give you a gut ache. And the Old doctors did seem to care about you but they retire and the New breed just do not care. I have been on a liver transplant list for 7 years, I go to the the University of Minnesota/Fairview and I have been to the Mayo in MN I did really like it there but they sent me to the U of M. I had a colonascipe done how ever they spell it and it felt like they tore out my intestines and gave me a hernia. That I still have it. I'm all screwed up. And the Doctor's don't care

REPLY
1 reply
JK | @contentandwell | Feb 28, 2019
In reply to @fcleaner1 "Lactulose is made to push food though the bowls and liver more quickly to take out..." + (show)
@fcleaner1

Lactulose is made to push food though the bowls and liver more quickly to take out the toxins out, that higher the ammonia level in your body that they call brain fog. But if the lactulose does not work it will give you a gut ache. And the Old doctors did seem to care about you but they retire and the New breed just do not care. I have been on a liver transplant list for 7 years, I go to the the University of Minnesota/Fairview and I have been to the Mayo in MN I did really like it there but they sent me to the U of M. I had a colonascipe done how ever they spell it and it felt like they tore out my intestines and gave me a hernia. That I still have it. I'm all screwed up. And the Doctor's don't care

Jump to this post

@fcleaner1 Are you seeing a hepatologist for your liver problems? If not, you should see one. They could probably prescribe xifaxan for you which is quite different from lactulose. For a long time that kept me free of HE. When I did eventually have HE again I did have to resume taking lactulose along with the xifaxan, but life was sure much better with just the xifaxan. It's costly but there are ways to get help with the cost of it if you qualify.
My doctors at Massachusetts General Hospital (MGH) were all relatively young, but they were all very caring. If you are not happy with the care you are getting is there somewhere else you can go? Can you possibly try to get the Mayo to see you again?
JK

REPLY
chrissey | @chrissey | Mar 3, 2019
In reply to @fcleaner1 "Doctors just do not care anymore" + (show)
@fcleaner1

Doctors just do not care anymore

Jump to this post

@fcleaner1 I did not try going to a hepatologist which was suggested by @jk. I will see and let you know.

REPLY
1 reply
JK | @contentandwell | Mar 3, 2019
In reply to @chrissey "@fcleaner1 I did not try going to a hepatologist which was suggested by @JK. I will..." + (show)
@chrissey

@fcleaner1 I did not try going to a hepatologist which was suggested by @jk. I will see and let you know.

Jump to this post

@chrissey What course of action are you taking? I hope whatever it is that it provides some success for your husband.
JK

REPLY
peder417 | @peder417 | Mar 4, 2019
In reply to @contentandwell "@techi @chrissey @peder417 @kanaazpereira Hi all, somehow when these were originally posted they got by me..." + (show)
@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

Jump to this post

I have yet to be diagnosed officially - they thought I had fatty liver MRI showed I did not - no abnormalities.

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