Hi from what I have read your level is high, if you are already on lactulose and it is that high then there might be a problem. Are you sleeping more than usual or are you having trouble concentrating or thinking? Sometimes the doctor will take in to account how you are feeling/acting then add in the ammonia number. I have also read that there are times when a person is having no trouble at all but then they are told that there ammonia level is high
I was told that the lactulose would not bother my sugar...but of course I have been told many things :)
Down below is an article about probiotics helping with encephalopathy
I don't know a lot about ammonia levels, so hopefully Randy or Hector will chime in. From what I've read ammonia levels can affect people differently. Based on my small amount of knowledge, I would say that 78 is medium high, and you may be experiencing some cognitive symptoms, perhaps some confusion, forgetfulness, or irritability. But then again some people nay have lower levels w a lot of symptoms or higher levels w fewer symptoms. Either way, it is essential to manage your ammonia levels because you may not cognitvely be aware of when your ammonia levels might cause enough HE to create dangerous situations, i.e. mixing up meds, causing an accident, leaving a burner on, forgetting where you're going, etc.
@Dee Not to be complaining, but to answer your question...I have been feeling like poop and even more exhausted than normal which is saying something lol. As for the blood sugars.. it might not be the lactulose causing that... it might be the pain I'm in right now due to something else that is going on. I spoke with the doctor and am monitoring it today and tomorrow afternoon and calling her tomorrow close to her closing time to report in. She definitely up'd the lactulose dosage though.
@Advocate1955 Yeah, after researching more, I see cirrhotics go into the triple digits frequently. So I don't think 78 is too bad. But I'm thinking that my number might have gone up since the test because I noticed today I was having trouble saying words. Normally I just forget words, today I couldn't say them right, was putting the wrong letters in front etc. This has definitely opened up my eyes that I need to get some things in writing right away while I am able. Not saying I'm not going to get this under control, I'm sure that I will with the lactulose...but I need to get a wiggle on getting things in order. I know I also need to adjust my protein intake... but that is going to be tricky getting my diet to fit with my diabetes, kidneys and now liver. I need to get to a dietician sooner rather than later. Kinda spooky how fast things are going.
I forgot to thank you for pointing out that link. I will definitely give it a read.
You are very welcome, I hope things improve.
Advocate was right about 78 being med/high I just thought it was high considering you are taking lactulose.
Hello Shelley and welcome to MedHelp.
There's really not much I can add since Dee and Advocate have as usual done a great job answering your question. As mentioned above it is important for you to manage your symptoms of HE and Lactulose alone doesn't seem to be doing the job. You might mention Xifaxan (Rifaximin) for treatment instead or in conjunction with lactulose to your GI doctor.
A combination of these two medications and a carefully planned diet should be able to help your symptoms tremendously.
The following factors may trigger HE:
Dehydration (loss of water from the body)
Low oxygen levels in the body
Eating too much protein
Medications that affect the nervous system, such as tranquilizers or sleep medications
Intestine, stomach, or esophagus bleeding
So as you can see surgery with symptoms of HE can lead to dangerous or even life threatening complications. Persons with cirrhosis normally have a lowered immune system and are more prone to infection. Whenever possible antibiotics should also be avoided but will likely be necessary after surgery.
You are wise to consult all of your doctors and I hope everything goes well for you.
Thanks Randy, I did have the appointment with the new GI and the Cardiologist. Neither want to ok me for surgery. The GI said NO surgeries because of the HE would probably put me into ICU immediately after surgery...as well as she thinks my liver is to decomponsated. I told her I was not loving the effects of lactulose, she did switch it to the xifaxan...but when I went to fill it, my cost after insurance was over $400 so ummm didn't get that. The pharmacist is going to call dr in the morning and see if he can switch it for another med. I appreciate all of the triggers you gave for it. I definitely have to write those down.
May I ask another question of you while you're here?
I am again confused. I guess instead of one biopsy in my liver, they took 4 from all different areas. I was told there is not one part of my liver that is not cirrhotic. That sounds rather bad to me. Besides that, I have slight ascites (on waterpills), my stomach is not emptying for some reason, she is ordering a test for that, I have HE and was told I am decompressed.have the rashes etc etc. No varices yet though... how can my liver be this bad but my meld score only be at 7? How can it be so bad that I am not to have ANY surgery unless it is life or death because of liver...but still meld at 7. Also my platelets are pretty low. I am also getting a hida scan tomorrow,. But my entire digestive system is now effected... enlarged speen also. I am so exhausted and all of these appointments and procedures and info is exhausting me even more.
any info would be awesome
Cirrhosis is divided into two stages: Compensated and decompensated.
Compensated cirrhosis means that the body still functions fairly well despite scarring of the liver. Many people with compensated cirrhosis experience few or no symptoms.
Decompensated cirrhosis means that the severe scarring of the liver has damaged and disrupted essential body functions. Patients with decompensated cirrhosis develop many serious and life-threatening symptoms and complications.
Such symptoms include:
Ascites (fluid buildup in the abdomen)
Variceal hemorrhage (bleeding in the upper stomach and esophagus from ruptured blood vessels)
Spontaneous bacterial peritonitis is a form of peritonitis (inflammation of the membrane that lines the abdomen), which is associated with ascites. Other bacterial infections are also a common complication of cirrhosis.
Hepatic encephalopathy (brain dysfunction). Impaired brain function occurs when the liver cannot detoxify harmful substances, and can lead to coma.
Jaundice. This yellowish cast to the skin and eyes occurs because the liver cannot process bilirubin for elimination from the body.
Liver cancer is a serious long-term risk with cirrhosis.
This is why it is critical that you are being treated by a hepatologist at a transplant center where you will have the best treatment made available to you. Your treatment will depend on your diagnosis determining your prognosis. Despite the good intentions from any other doctor they just don't have the training required to treat a cirrhotic individual. Liver disease is very complicated and every patient is different. The liver performs over 500 vital functions daily. (Once decompensation occurs, mortality rates without liver transplantation can be as high as 85% within 5 years.) Any medical treatment needed should always be approved by your hepatologist first to include prescription medications and certain OTC drugs and certainly not to omit any invasive treatments.
Your liver biopsy is used to determine you have cirrhosis, your symptoms and blood labs are used to stage your cirrhosis. With your symptoms of decompensation a MELD score of seven seems unlikely. You can obtain a copy of your lab testing (at no charge) as you should every time for your own records anyways and calculate your MELD score yourself. This link will help you do so: http://www.mayoclinic.org/meld/mayomodel6.html
Once you have obtained a few copies of your lab results you can begin to chart them to compare as I have done here: http://www.medhelp.org/user_photos/show/358616?personal_page_id=1830091
This will help you better monitor your disease. Finding the cause of your cirrhosis is critical in hopes of discontinuing any further progression if at all possible.
I see that you have a lot of other health concerns so other factors for determining the cause of your ascites should also be considered. These causes are listed here: http://www.nlm.nih.gov/medlineplus/ency/article/000286.htm
It's very tough to manage everything going on right now so I am glad you found us here. We are glad to be able to help the best we can and I hope you will continue to let us know how things are going. Take care Shelley!
Coupons for Xifaxan/Rifaximin are available online and save you up to 75%.
Use "Google" to search for "Discounts on Xifaxan/Rifaximin"
Take a look at these:
Thanks for all of the info Randy and for the coupon site, I know that will certainly come in handy as will the chart. I'm going to call my insurance company today and see if I can refer myself to the U.W. I hear they have a great transplant center. Whether or not I can get a transplant I know that's the place I want to be. And I believe they are the ones to make that determination, not the GI Doc or my PCP. I do also have the inflammation of the stomach lining.. just an fyi thing. :) But I believe my top concern right now is getting clearance to get this ugly tumor out of my spinal cord.. which is proving a lot more difficult than I thought it would be. One day at a time right :)
That would be great if you could get in to U.W. It seems like your PCP could refer you expressing the urgency to get you in right away. I want to make sure you know that many of us here seek treatment at a transplant center but it doesn't mean we will need a transplant and hopefully you wont either.
I can understand the urgency but I think both are equally important. The transplant center should quickly be able to determine if it's safe for surgery or maybe present a quick treatment option. Are you managing a healthy diet in a effort to bring this ammonia level down?
I admire your strength Shelley, one day at a time is exactly right!
I'm trying to do a healthy diet...I am far from being there, but a lot closer than I was a month ago. It's tough because I have my husband, a chocoholic and my daughter in law..ice cream addict, and my 2 year old grandson and my 7mo granddaughter living here. They are not thrilled with meal plans...I try not to bring things in the house that I shouldn't have, but with two other adults who just don't seem to get the importance of it.. bringing things in, I'm finding it difficult. Especially when I have a real hard stressful day and think..oh forget it, I deserve this. My fault totally. I need more will power and I need to change my thinking... to instead of "I deserve this" to "My body does not deserve this". But my mind goes into thinking that I am trying to be strong in this area and in that area...this is just to many areas to be strong in all at once. So I am in a battle with my own mind...and unfortunately I have a strong mine. ha ha ha. Not funny really, but gotta get the humor where I can.
Any suggestions for high fiber meals/snacks and/or healthy meals would not be turned down ;)
I'm such a bad person to ask since I'm so picky my diet is far from what it should be. One thing I like to do for a snack is buy unsalted mixed nuts (excellent source of protein) then mix in raisins and dried cranberries (very high in antioxidants) making an all around good snack.
oh, now see...that is an excellent suggestion... Love all of those. Love raisins but being diabetic those raise my sugars to the moon and back. But I can do the cranberries and nuts. Thanks bunches. I too am a picky eater, at least that's what I've been told. I don't think so, I just know how I like my food that's all. ha ha ha
About the ammonia, In my case just about anything stressful can send my ammonia up to the moon. It was never a problem with my regular DR. But when I was diagnosed with ESLD /cirrhosis . I went to the transplant center, anyway
It is always (how can you live????with 310.) now they know I get it done by my DR. before going to transplant center because they now know the stress of a trip to the center sends mee. In may it was fine here at transplant center it was165. The variables are astonishing. I remember once it was less than 14. I've stopped taking the lactulose . I am not recommending anyone do that .but I did. I was taken of the transplant list a year ago because my Meld score has dropped to 5. I still have to go once a year for bloodwork and CT scan. An expensive long trip to go on just in case . I did fail to say I can tell when My mind gets muddy. I do go back on lactulose
I think your MELD score has probably changed in the last few weeks since that labwork that you had at the GI's office a month or so. My guess is that you are up around 12 or 15 now. Still probably not high enough for a transplant, but you still definitely need to be seen by a hepatologist asap. Randy is right, Xifaxin will better control your HE. The trick now is for a hepatologist to keep your liver functioning well enough so that it doesn't fail.
Have you tried Kristalose instead of lactulose? I had the same problem with lactulose and insisted that my GI dr. place a special order for it since Kaiser normally does not carry it. I told him the syrup had an effect on my blood sugar and could not take it and he placed a special order for kristalose - it is a powder that comes in packets. It does not seem to have as much sugar in it, what a difference ..now i can take it 2-3 times daily and no problem. Check your insurance on what your deductible would be for it before you pick it up! It depends on your insurance. Be pro-active about this is so important for you to take. Take care.
@cat I ended up stopping the lactulose because it was just doing icky things to me. But, on a recent ER visit (last Friday) the E.R. Dr ordered me back on it. I still haven't started it again though. I hate that stuff.
@advocate All of my bloodwork has changed since then. As a matter of fact I've had Mass labs recently, on the 1st with pcp dr, the 10 for cardiologist & GI dr & the 12 for ER dr. And with each one the blood work was worse. I didn't realize it could change so quickly. My platelets went from 109 or 107 whatever.. on the 1st to 85 on the 12th. All of the numbers are just a lil worse the creatinine, bilirubin etc etc. So yeah, I'm sure my number is different now.
@sunru I haven't even heard of Kristalose...I'll have to ask about that. Thanks. How does it taste? It's not thick is it? I am trying to be as proactive as I can. :)
Shelley, the lactulose is really essential for managing your digestive tract and minimizing the build up of ammonia and other toxins. The higher the ammonia level, the more severe the HE, and the more severe the HE, the more difficult it will be for you and your liver doc to manage your liver disease. You have to control the HE, so that you can manage your meds, your diet, and other aspects of your liver care.
Please don't skip your lactulose.
Adv, I have totally stopped the lactulose...I hate it,it makes me cramp and other unpleasant things that I wont mention. and I just don't like taking it, it's like drinking syrup. But, I guess since I've been ordered by my pcp, the gi dr and the gi hep specialist and then Friday by the er dr...I should probably start it again. (I'm making a puke face right now) hows that for acting like a grown up. lol I'll just have to wear my big girl panties every day I guess. ha ha ha.
Thank you all for all of your advice and help and support. I know you all have gone through so much nmore than I am going through right now and yet you still have compassion. You are all special people .
My brother has a liver disease called Wilsons and his ammonia levels are staying in the 163 140 230 its been low a few times like 42 this has been going on since September 19 he has been in the hospital since they give lacalos for his condition but they called us in yesterday and said his liver has shut down they took him of the list because his levels are to high and i want tho know of he was to have surgery with levels that high can our do more damage
Oh Deehart1911, I am so sorry. I do not have any advice on this. But I am terribly sorry that you are all going through this. Can you repost this question as a new question so that more people will see it? There are a lot of very knowledgeable people that would be able to help you so much more.
My thoughts and prayers are with you. Please keep us posted
Levels are different for everyone in their reaction. I was near coma last year when i found out rather quickly i had cirrhosis and HE, can't remember what my level was. Mine was 224 a few weeks ago, dropped with more lactulose to below 100. I hate lactulose these days and quit taking it 3X a day and my ammonia shot back up to 181. Back to 3X/day. I don't eat much, mainly fruits and vegetables along with some Ensure. So there's still hope he can get it under control. Maybe you need a different doctor, or different advice. I personally start falling down and sleep a lot over 200.
I am new to this site and not really sure how to use all the functions. I have completed hep c treatment in Jan 2013 and was ud post 6mts. I am scheduled for a GI doc apt in Dec. All my labs were pretty much in range at 6 mts except my ATF(?), but was told that I have F4 cirrhosis when I started my treatment journey. I tried your site:
"Once you have obtained a few copies of your lab results you can begin to chart them to compare as I have done here: http://www.medhelp.org/user_photos/show/358616?personal_page_id=1830091"
But was unable to pull it up. I am trying to have all my questions written down when I go to the docs. Any advice will be welcomed...jem