Answers to Your Questions
If you would like to make an appointment with a SLU Liver Center Hepatologist, please call (314) 577-6000.
I have a question about my daughter as I am anxiously awaiting her appointment with a liver specialist. My daughter is 18, normal height and weight. I noticed her eyes were yellow and she occasionally complained of abdominal pain. Took her to a pediatrician for labs and then an ultra sound. Ultra sound was clear. Labs showed amylase 114, bili 3.6, ANA positive. We were referred to a GI specialist with more labs – bili still elevated, Mitachondrial AMA 64.3, INR 1.07, and the rest were negative. She had a gallbladder type attack after this visit while eating out and was rushed to the ER for chest and abdominal pain which showed a clear CT scan. We are awaiting an upcoming visit, still a month away, at a liver center. Do you have any idea what all this could possibly mean? She is scheduled for an upcoming MRI as well. Thank you.
“Unfortunately, we cannot make a diagnosis over the internet. With the bilirubin being elevated and positive tests for autoimmune types of liver disease, it is very important that she not wait a full month to be seen by a liver specialist. We would recommend that you request an earlier appointment for her”. – Dr. Brent A Tetri
I have elevated ALP, GGT, and AMA, liver biopsy was negative for PBC. What are the other possibilities that would cause these elevated levels? Also, I had discoid lupus in the 90’s, but I have been in remission for years.
“This is a complicated situation. With a positive AMA, there is still a chance that this could develop into PBC even thought there was no evidence of it on your liver biopsy (assuming there was not another cause of elevated liver enzymes on the biopsy). You should see a liver specialist regularly to decide if and when you might be treated for PBC.” – Dr. Brent A Tetri
I recently had my annual physical and was told that my liver enzyme level was 49, a little above the norm of 41. I was told that I should worry and to have my blood checked again in 6 months. I feel like that is too long to wait, should I get another opinion? Or is it really okay to wait the 6 months?
“Liver enzyme tests can be mildly elevated like this for a number of reasons. Sometimes it is worth waiting and watching but most of the time it warrants further evaluation with additional blood tests. Fat build up in the liver can cause this and so can several types of viral hepatitis infections and uncommon genetic disorders. We generally recommend further testing to sort out what the cause might be”. – Dr. Brent A Tetri
My husband has recently been diagnosed with PBC. Based on a positive AMA test and elevated enzyme test. Is there any point having these tests re-done? Are there any supplements he could/should be taking to help his liver function. I have read that reduced salt, fruit, water, exercise, limiting or abstaining from alcohol are all beneficial but his doctor seems to have dismissed these as unnecessary. To they have merit?
“The basis of the diagnosis seems to be a positive AMA and abnormal liver enzymes – presumably an elevated alkaline phosphatase. I wonder if a liver biopsy was considered. There is medication for PBC that reduces the rate of progression – ursodeoxycholic acidi – urso – is routinely used for this disease. The other things about a healthy diet, low salt, minimum alcohol are all good, but I would recommend a liver biopsy and consideration for urso treatment. Maybe he should see a hepatologist? “. – Dr. Bruce Bacon
I was diagnosed in my early 20’s with Lupus. In recent years my diagnosis was ‘downgraded’ to Undefined Connective Tissue Disease, (whatever that means). I have managed the syumptoms of the related problems – Meniere’s, Raynaud’s, anemia, migraines, constipation, joint and muscle ppain, etc. through diet and exercise for 3 decades (I am now 54). Recently, because my ANA numbers were higher than usual, my doctor sent me to a gastroenterologist, who ordered a liver biopsy. Although the results were inconclusive (both he and another live doc came to the same conclusion), he had me start taking 300 mg of Ursodiol three times a day because Ursodiol will prevent any further liver damage. I’m wondering if I really need to take the medication or if I an manage this through diet and exercise. I have read that this is a ‘slowly progressing’ disease. Is this always the case? If not, how fast can it progress? My Dr. said it varies widely, depending on the person, but I haven’t seen anything about how rapidly it can progress. I don’t want to cause myself any further damage but I hate the idea of being on drugs for the rest of my life. I have also read that one of the main contributing factors in autoimmune liver disease can be stress. My husband dies 2-1/2 years ago, so I have been under more stress than ever before in my life, but as I adjust to my new ‘normal’, my stress is becoming much less. How much of a difference will that make in the progression of this disease? What are your thoughts on Functional Medicine and eliminating autoimmune disease through dietary changes? I need to do the best thing I can for my health, my kids have lost enough. Any help and advice you can offer is greatly appreciated. Thank you.
“Your situation certainly sounds complex. Unfortunately, the only way that we can help sort through this would be to see you in clinic to go through your records, review your liver biopsy and discuss our recommendations with you”. – Dr. Brent A Tetri
I have normal liver lab tests and my liver biopsy showed liver is enlarged and fatty liver – no signs of PBC. However, my AMA is positive (Positive at >/=1:160). I also have some symptoms that may go with liver issues such as itching, osteopenia, swelling in legs and feet. I have fibromyalgia, am hypo thyroid and hyper parathyroid. All heart stuff is normal. Hep A, B and C were negative. ANA is sometimes positive and other times negative (negative with last lab run and other tests for lupus were negative). Can you have a high AMA with conditions other than PBC?
“This is an interesting question. It sounds as if you have been thoroughly evaluated including a liver biopsy. I have a few patients who have a positive AMA with no evidence of PBC, so I think that this can occur. In those patients, I follow them yearly and monitor liver enzymes. Mostly, they remain stable, but in one patient, liver enzymes because abnormal and a liver biopsy showed mild early PBC, so that can happen too. I would suggest yearly monitoring for you and work on treatment of the fatty liver disease with weight loss and exercise. Hope this helps.” Dr. Bruce Bacon
For years I’ve had raised liver enzymes. I believe it’s been years ago I was a heavy social drinker. Since then I’ve been trying to take care of my liver. Around 10 years ago I had a liver biopsy and they told me to go home as they couldn’t tell me what was wrong. I have no gall bladder. in 2003, an ultrasound showed: the biliary tree is moderately dilated with a diameter of 9mm. This is at the upper limits of normal post cholecystectomy. There is no intra hepatic billary dutcal dilation evident..so I regularly have liver tests and although in my last test, my liver enzymes are normal except for the Alp, which was 149. This is the best it’s ever been, it was really high over 200 and each test it keeps coming down.
While at the Doctor’s appointment for another concern, he looked at the liver tests and said I might have PBC. he asked me question, about itching, fatigue, etc and all my answers were no. I am 72, I exercise and try to keep healthy, so he did a battery of blood tests. Again, all liver tests were normal except for the raised ALP and it has come down, as I said before, a lot from where it was. The bilirubin and albumin are normal. ANA, anti-Mit2 negative, anti sooth muscle screen negative, antittg-Iga 3.3. The Doctor’s office phoned about my recent ultrasound and told me things were okay and that the Doctor was pleased with the ultrasound, but when I went for another test (not concerning the liver) the Doctor told me again about the Cirrhosis thing and wants to do another biopsy. But for me, except for the raised ALP, (and it’s coming down) I have no other symptoms and all the other tests are normal. So please tell me what is happening. Thank You.
“A liver doctor (a hepatologist) would typically evaluate a patient with persistently raised liver enzymes by taking a complete history, doing a physician examination, ordering some blood tests and perhaps an ultrasound and liver biopsy. A thorough evaluation such as this will usually reveal the cause for the liver problem. Some of the most frequent causes would include: fatty liver disease, hepatitis C and liver injury from medications such as statins. There are obviously a wide range of other, more rare, possibilities. There are some patients who have persistently raised liver enzymes for no apparent reason.”
A liver biopsy may serve two purposes – one to try and find out the cause of the liver disease and secondly to assess whether there is any significant liver scarring or fibrosis. A careful review by an expert of your previous liver biopsy may be more useful at this time in your life than doing another one, but at the end of the day we have to advise that you seek the expert opinion of a hepatologist.”
I recently tested postive for AMA, 52.7 on a value scale of 0.00-0.20.0 units. My primary physician said it was signs of PBC. He did a liver panel and everything came back normal (TP: 7.7; ALB 4.5, ALP 69, AST 31, ALT 38, TBIL 0.6, DBIL 0.1, IBIL 0.5). He thought I still had PBC but that we caught it before there was any liver damage. I saw a GI doctor today and while he agreed I had a high AMA, he said he would not touch me (as far as a liver biopsy) because my liver enzymes are 100% normal. He wants to do my liver panel every 6 months to monitor for any increase in the enzymes. Could I have a false postive AMA or could the high AMA be a sign of something else? Should I be doing more before my enzymes increase? I don’t want to wait until I have liver damage and then say I have PBC when I have already tested postive but have no liver damage?
This all began with a rash I am unable to get rid of (July 2012). The rash began around a trauma to my leg which occurred in June 2012 but has since moved to include knees and hands. My other symptoms are: enlarge lymph node in my neck (it comes and goes), constipation (I’ve never been regular, maybe once a week); stress fracture that will not heal (since May 2012), lack of concentration, easily distracted (I can be in the middle of a sentence and completely forget the word I was getting ready to say).
“AMA is a very accurate test for PBC. Studies have shown that among persons who test positive for AMA but have no signs of liver disease (i.e. they have normal liver enzymes), they will eventually develop more typical PBC. It is very appropriate to suggest monitoring of liver enzymes with a planned liver biopsy if and when they become elevated. A lot of time can pass while the liver is inflamed (evidenced by raised liver enzymes) without any liver damage (scarring) occurring and treatment can be started at an early stage before any actual liver damage has occurred” Dr. Adrian Di Bisceglie
I have a friend with hep c and not sure how/when they got it, but believe they were diagnosed over 10 years ago. I shared a straw with this person when we were in our 20’s (currently in my 50’s). I was tested for hep c about 5 years ago, and the test was negative. Do I need to repeat this test, and if so, how often should I request a hep c screening?
“Testing for hepatitis c includes antibody testing (anti-HCV) and actual testing of the virus (HCV RNA). If someone has been exposed, then subsequent testing with either modality is considered efficacious. If the exposure is very solid, then it is reasonable to do the testing on two occasions to be sure. Also, antibody testing may not become positive until 4-6 months after exposure, whereas virus testing is positive within a week of exposure. So, in the situation presented, I would get testing by either one of these modalities one more time and if negative, then, no worries” Dr. Bruce R. Bacon
I’m hoping someone can help me out. I’m a 22 yr old seemingly healthy male. About a year ago I had abnormal lfts. I was referred to a G.I. and tested for pretty much everything from what he told me. All which were negative test. I’ve also had ultrasounds done. CT and MRI. As well as a hyda scan. All showed nothing. I was then ordered to have a liver biopsy. The nurse called me and said they are puzzled and they want to send my biopsy to a “better” lab and want me to be tested for ANA or AMA. I guess to rule out PBC? I’m just lost and scared through all this. I can’t seem to get a straight answer and they act like they really don’t know what’s going on. I respect their work and like my doctor. Can you help me out? Maybe I’m ok? Thanks for any help you can provide.
“Although we have a lot of good blood tests to identify specific causes of liver disease, sorting out the causes of elevated liver enzymes can be difficult at times. It sounds like you are in one of those situations. It is always a good idea to get a second opinion on the interpretation of a liver biopsy when the answer is not clear. Diseases such as Wilson’s disease can be particularly difficult to diagnose and may require a number of different tests such as blood tests, a liver biopsy, a 24 hour urine collection and even an eye examination by an ophthalmologist.” Dr. Brent A. Tetri
My wife has liver PBC stage 2. diagnosed in 2007. She is 34 yrs old, we have 2 children ages 13 and 5 and I’ve noticed within the past 2 years that she has become withdrawn. She seems lost in her own mind? She seems not to care much about me or our kids. She’s kind of heartless and has no feelings anymore. I don’t know what to do anymore. Is this part of her PBC condition? I help her out around the house I’m good to the kids, and work hard to support her in so many ways. I never get a thank you. She’s still very itchy. She takes her meds. She also no longer wants to be touched. Any information would help me understand. Thanks.
“For most people, living with PBC is as simple as taking ursodiol and having regular checkups. However, for some people living with a disease that can cause fatigue and itching with a risk of progressive liver disease takes an emotional toll leading to depression and other difficulties. She should see her liver specialist and have a frank discussion about these problems. She may benefit from seeking additional help. You certainly seem to be on the right track in trying to be supportive.” Dr. Brent A. Tetri
I was diagnosed with Stage 2 PBC in 2008 from an AMA (52) and a liver biopsy. Started Urso on the day of dx. Weeks later, my slides were sent to Baylor Liver Center. Their labs (neg AMA) along with the review of my biopsy slides led them to believe I have NASH, but they were scratching their heads over the PBC. They said “on paper,” I have PBC, but the damage evidenced in the biopsy indicated NASH. They have flip-flopped numerous times over whether or not I have PBC, even asking me to stop taking URSO, over my own Dr’s objections. I stopped for 3 months. AMA was back up in the 40s. LFT were more elevated, too. I went back on URSO. 3 months later, AMA was negative again. Baylor Drs are stating they have NEVER SEEN ANY PBC patient who (1) also has NASH; and (2) EVER has a negative AMA. EVER. Therefore, they now say they don’t think I have PBC. I stopped the URSO 4 months ago. I am awaiting my labs from last week to see what my AMA and ANA counts are now. ANA has fluctuated between 1:320 with a speckled pattern, to 1:80 over the past 15 years.
My condition has bewildered several doctors for a long time. They felt certain I had Lupus… then possibly a pituitary tumor… then possibly sjogren’s… and a host of other auto-immune glandular diseases. Each time, they chased down
those rabbit holes and came back with nothing. (Besides Hashimoto’s – dx ’97, and Diabetes – dx ’00).
My gastro, my infectious disease specialist, and my internist are all in agreement that I definitely have PBC and should take URSO for the remainder of my life. They were all distressed over the fact that I stopped it again, just to see what would happen to my count (based on Baylor’s findings). They also have been quite vocal in their opinion that I have been given BLATENTLY misleading information from Baylor. Frankly, they think Baylor is “full of it,” where my diagnosis is concerned. I don’t know what to believe! I trust my personal caregivers completely. I value their opinions. They have repeatedly saved my severely handicapped sister’s life and we have a mutual respect for each other’s medical knowledge. Baylor, on the other hand, is focused on learning “for the greater good” of the general population, and are considered “liver experts.” I want to do what is best for my health, but am troubled by the advice given by valued physicians. Based on what I’ve shared here, if you were me, what would you believe?? And what would you do next?
“This is clearly a complicated situation and you were right to seek the opinion of others. Without seeing you and evaluating your records and biopsy slides, we are not in a position to help sort this out for you. Since there are clearly very different interpretations of what your diagnosis and treatment should be, we can only suggest that you seek yet another expert opinion. The hepatologists at the SLU Liver Center would be happy to see you if you would like.” Dr. Brent A. Tetri
My mother passed away on 8/10/2012 and while in the hospital they said she had PBC or maybe NASH. I test postive for both the ama and ana antibodies but the doctor does not think I have PBC because my alkaline levels are normal – but so were my mothers. I’ve also been tested for syrogns syndrome… neg… I’ve had dry mouth and dry eyes for 2-3 years and also have a lot of itchy skin with nothing there. What do you think I should do?
“Yours is a complex situation and we would recommend that you see a hepatologist (liver specialist) to sort this out.” Dr. Brent A. Tetri
With treatment (Urso) my LFT’s are in the normal range. My doctor thinks my fatigue should be gone, but it has not improved at all. I still have a period of several hours in the afternoon where I absolutely must go to bed, with some improvement in the evening. Is the fatigue of PBC expected to go away when LFT reach normal? This conflict in expectation/actuality has been very stressful to me.
“Fatigue is the most common symptom seen in patients with Primary Biliary Cirrhosis (PBC) and generally does not respond to any medications available. I frequently have patients with normal liver tests while being on Ursodiol who still have significant fatigue. I find no correlation with normalization of abnormal liver tests and improvement in fatigue.”. Dr. Bruce R Bacon
I’ve been diagnosed with NASH, but they’ve also said meds, like tylenol could be a factor because I’ve had numerous surgery’s and had chronic tension migraine’s. How can you differentiate the two or is the treatment the same? I’ve been told I had to have weight loss surgery to be put on transplant list. I’ve heard of many people dying from the bypass complication’s-is this true?
“Tylenol (acetaminophen) does not cause NASH. The recommendation of most liver specialists is to limit acetaminophen use to no more than 2000 mg daily because liver damage has not been found when the daily dose is kept within this limit. The discussion of the pro’s and con’s of weight loss surgery is beyond the scope of this email. You should discuss this with your primary physician.” Dr. Brent A. Tetri
I understand some headache and pain relief medicines are harmful to the liver; could you let me know what you recommend in these situations?
“Acetaminophen in high doses can cause liver damage. In doses up to 2000 mg daily (i.e., no more than 6 regular tablets or 4 extra strength tablets daily), acetaminophen is considered safe for the liver. Acetaminophen is found in Tylenol and combination pain medications such as Percocet, Vicodin and Lortabs. It is sometimes abbreviated “APAP” on pill bottles.
The “NSAIDS” such as ibuprofen (Motrin) and naproxen (Aleve) can be a problem for some people with cirrhosis in that they can irritate the stomach lining and cause kidney problems. As with the use of any medication, a careful assessment of risks and benefits should be made in deciding what medication is best” Dr. Brent A. Tetri
What is the most common liver disease in the adult population? In children?
“Nonalcoholic steatohepatitis (known as NASH) is probably the most common form of liver disease in adults and children now. NASH is associated with obesity, diabetes and the metabolic syndrome, all of which have been increasingly common over the past two decades. A recent study found NASH in 12% of adults seeking routine health care. In some people, NASH causes fibrosis (scar tissue) to accumulate in the liver, even to the point of cirrhosis, and NASH cirrhosis now accounts for an increasing number of liver transplants. Eating a healthy diet and exercise can reverse the liver damage of NASH if these lifestyle changes are adopted before the disease has progressed to cirrhosis” Dr. Brent A. Tetri
What are some of the common symptoms of liver disease?
“Fatigue is the most common symptom of liver disease. Other symptoms include joint pain, right upper abdominal pain, unexplained depression, malaise, increased liver enzymes, and many patients don’t have any symptoms at all” Dr. Bruce R. Bacon
Are there medications available to treat hepatitis B?
“Yes – tenofovir (Gilead) and entecavir (BMS) are both very successful at suppressing hepatitis B” Dr. Bruce R. Bacon