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.

@peder417

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

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@peder417 So they still have no idea what is causing high ammonia? Have they indicated what else can cause that?
Can gastroparesis cause high ammonia? My cirrhosis was diagnosed by way of a CT scan if I remember correctly. I went through so many tests over time that's all a mish-mash in my mind, and I am not medically inclined.
Sorry, lots of questions but since I am only familiar with high ammonia from cirrhosis I am curious about other causes.
Thanks.
JK

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Hi @mjgstewart and welcome to Connect. I will try to answer what I know from my experiences but I suspect you will get other responses also.

I was on xifaxan due to having NASH cirrhosis. When you have cirrhosis your liver cannot filter out the ammonia as it should so it can go to your brain and cause problems, generally confusion, and sometimes more serious — delirium, coma, and even death if not treated. The ammonia did not cause me to have dizziness and seizures, but we are all different. I got very irrational, and one time very unresponsive.
I would definitely see a gastroenterologist, they are the most experience with this.
Are the memories you are concerned about from things that have happened when you were experiencing these episodes? I lost some of those memories but other memories were still intact.
Do they say if this is something you will need to take forever or can they do something that will prevent these problems?
I will be very curious to see what the doctors have to say, I had never heard of ammonia problems for conditions other than cirrhosis but I knew there were some.
JK

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I have an ileostomy with 6 inches of small bowel. I’ve been on TPN for 12 years. Recently, about a year ago, I started having seizures, dizziness and lost of memory. After 2 MRIs and 2 neurologists I was told there were no medical reasons for my symptoms. After my primary doctor ran a blood test my ammonia level was 300. Due to the TPN and fluconazole (which I have to take to avoid another heart valve infection), my liver produces high enzymes and isn’t processing the ammonia. I can’t take other meds that cause diarrhea. I just started taking Xifaxan. My primary recommended me following up with my gastroenterologist. Should I see another specialist? Will this medication stop the dizziness and seizures? I know I’ll not get my memories back.

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Hello @mjgstewart,

You may notice that I moved your message and combined it with this existing discussion on high ammonia levels. I did this as I thought it would be beneficial for you to meet a few other members who are discussing much of what you are experiencing – I’m confident @peder417 @adah @frankw54 @kltchrmn and other will return and join this discussion.

If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

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@three

Please help. My husband in Oct was found at the side of the road not knowing who or where he was. His ammonia level was 176. He has been on lactose since then waiting to get into a liver Dr at KU. He said that he does not have liver disease. Today I took him off his lactose per the liver dr. at KU. He feels a little nauseated and weak. Dr. said a channel could have formed in his body to go past the liver. The test that he looked at was from Oct. Does your body form channels in a short period of time?
TKA

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Hello @three,

I’m so sorry I didn’t see your message earlier; I sincerely hope your husband is feeling better now. Since you mentioned that your husband may not have liver disease, I did a bit of research which led me to this information about "Noncirrhotic Portal Hypertension or NCPH.”

Portal hypertension is abnormally high blood pressure in the portal vein (the large vein that brings blood from the intestine to the liver) and its branches. Cirrhosis is the most common cause of portal hypertension, but it can also be present in the absence of liver disease like cirrhosis – noncirrhotic portal hypertension. https://aasldpubs.onlinelibrary.wiley.com/doi/pdf/10.1002/cld.497

@three, has your doctor offered a treatment plan for your husband?

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@mjgstewart

I have an ileostomy with 6 inches of small bowel. I’ve been on TPN for 12 years. Recently, about a year ago, I started having seizures, dizziness and lost of memory. After 2 MRIs and 2 neurologists I was told there were no medical reasons for my symptoms. After my primary doctor ran a blood test my ammonia level was 300. Due to the TPN and fluconazole (which I have to take to avoid another heart valve infection), my liver produces high enzymes and isn’t processing the ammonia. I can’t take other meds that cause diarrhea. I just started taking Xifaxan. My primary recommended me following up with my gastroenterologist. Should I see another specialist? Will this medication stop the dizziness and seizures? I know I’ll not get my memories back.

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@mjgstewart

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Xifaxcin will help but not that much. Please ask your doctor for RAVICTI. It removes ammonia through the urine. It is extremely expensive which is why doctors will not prescribe it. But it sounds like this is what you need. I am trying to just get a prescription of it for my husband but doctors go deaf when you ask for it. The cost of this drug will not drop until 2025 when it comes off patent. I worked in big pharma research for 38 years and I am not sure how to get it. But I think you need it. Maybe if enough people push for it. Good luck to you. I will leave a message here when I am able to get it for my husband. So far all I got was a prescription for zinc something from the 1950's Try cutting back on protein but do not give it up altogether.

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@chrissey

Xifaxcin will help but not that much. Please ask your doctor for RAVICTI. It removes ammonia through the urine. It is extremely expensive which is why doctors will not prescribe it. But it sounds like this is what you need. I am trying to just get a prescription of it for my husband but doctors go deaf when you ask for it. The cost of this drug will not drop until 2025 when it comes off patent. I worked in big pharma research for 38 years and I am not sure how to get it. But I think you need it. Maybe if enough people push for it. Good luck to you. I will leave a message here when I am able to get it for my husband. So far all I got was a prescription for zinc something from the 1950's Try cutting back on protein but do not give it up altogether.

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@chrissey I’m not sure who this is a response to, and what was causing their high ammonia levels, but when I had cirrhosis and high ammonia levels it kept things in check for almost a year. Then my cirrhosis progressed to a point where I needed to supplement with lactulose. Prior to taking xifaxan I was having problems at least every couple of weeks. I was taking lactulose but the xifaxan worked so much better.
If the other drug can’t be prescribed, xifaxan is a good alternative in my experience.
JK

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That is the problem. Xifaxcin has little effect now. It was very good. But it is different for different people. Lactulose is really the only thing that effectively lowers ammonia. This is through poop. The person that I answered has had surgery on his bowels. Laxatives for this person is scary but that is what this doctor wants to give him. The only drug out there that would help is Rivicti. There is also a lower cost version but the sodium in it causes blood pressure problems. Rivicti will lower ammonia through urine thus be easy on this person's digestive system. Doctors will not prescribe this only because of cost. This person has to ask for it.

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@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

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Have you ever been told You did not have HE? But they said it was sinus imflammation? On the cat scan?

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@adah

Have you ever been told You did not have HE? But they said it was sinus imflammation? On the cat scan?

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@adah No, I was never told I did not have HE. HE was what brought my cirrhosis to light, although prior to having my first episode I had other cirrhosis symptoms that the doctors did not connect to cirrhosis — low platelet count, shaky hands, recently diagnosed diabetes, leg cramps, and edema. The HE episodes were thought to be neurological so I went to a neurologist. He was the one who said he thought the problem was my liver, at which point I was sent for a CT and that confirmed cirrhosis. A couple of the HE episodes had put me in the hospital and he suggested they test my ammonia level, which of course turned out to be high.
I am very thankful that it was diagnosed when it was because it turned out I had malignant lesions in my liver and if there had been more or if they had been larger, I could have been eliminated from being a transplant candidate.
JK

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What kind of symptoms made you be hospitalized for HE? If you don’t mind me asking?

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@adah

What kind of symptoms made you be hospitalized for HE? If you don’t mind me asking?

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@adah I don’t mind you asking at all. It was a terrible time but if what I went through can help anyone else I’m happy to talk about it.

Some of my HE episodes were mild. I would have a bad stomachache, feel out of it, go to bed and wake up hours later, or the next morning and be fine. The more serious ones caused some delirium, non-sensical behavior, and complete forgetfulness. For instance one time I was thirsty and I kept going to the kitchen to get a glass of water. I ended up with about four glasses in front of me on the table. I also put some clothes on backwards. One time I became very unresponsive, I just sat on the sofa staring into space. That was probably the worst because HE episodes can cause coma and even death so the unresponsiveness was probably heading to that. I was also very belligerent and combative. There was no way my husband would have been able to drive me to the hospital so I ended up going in an ambulance about three times.

My episodes always started with a stomachache and fatigue. If I was out anywhere and my stomach felt the least bit off I would immediately head home. Most often it was a false alarm but better safe than sorry. I was fortunate in that most of the time I was able to lead my normal life whereas some people are in a constant fog.

Please feel free to ask any other questions you want answered, either here or in a PM.
JK

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@contentandwell

@adah I don’t mind you asking at all. It was a terrible time but if what I went through can help anyone else I’m happy to talk about it.

Some of my HE episodes were mild. I would have a bad stomachache, feel out of it, go to bed and wake up hours later, or the next morning and be fine. The more serious ones caused some delirium, non-sensical behavior, and complete forgetfulness. For instance one time I was thirsty and I kept going to the kitchen to get a glass of water. I ended up with about four glasses in front of me on the table. I also put some clothes on backwards. One time I became very unresponsive, I just sat on the sofa staring into space. That was probably the worst because HE episodes can cause coma and even death so the unresponsiveness was probably heading to that. I was also very belligerent and combative. There was no way my husband would have been able to drive me to the hospital so I ended up going in an ambulance about three times.

My episodes always started with a stomachache and fatigue. If I was out anywhere and my stomach felt the least bit off I would immediately head home. Most often it was a false alarm but better safe than sorry. I was fortunate in that most of the time I was able to lead my normal life whereas some people are in a constant fog.

Please feel free to ask any other questions you want answered, either here or in a PM.
JK

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Thanks for posting this. In my case it is my husband and he damaged my relationship with some of his family. I was the problem. I tried to explain about the HE but was ignored. I guess that is easiest route to take for some people. Some relatives and friends stuck with him and I am grateful for that

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