Elevated ammonia levels

@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.

@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????"

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.

@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

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

Doctors just do not care anymore

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

@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