Fatty Liver Disease and Fibroscan Testing

As per the Canadian Liver Foundation:

FibroScan (FS) is a completely non-invasive diagnostic instrument to measure fibrosis (scarring of the liver) of the liver. FS uses an “elastic wave” (transient elastography) to measure hepatic stiffness which correlates with fibrosis. FS is based on the premise that as the liver becomes more fibrotic, the tissue density increases and the liver becomes less elastic. FS is easier to perform, safer and less expensive in comparison to a liver biopsy.  Measurements with the FS can be taken at multiple locations of the liver whereas a liver biopsy tissue sample is taken from one location in the liver.

Fibroscan is a new technology that assesses the stiffness of the liver. The stiffer your liver is, the more damaged it is by fibroids and dead liver cells.  I was very interested in this new testing method as my daughter has never been considered for a biopsy.  I also run a group on Facebook with almost 1200 members around the world. This is important as a new testing and monitoring tool for Fatty Liver Disease.

Biopsy is currently considered the gold standard in testing the condition of your liver. This is done with a needle that is inserted into the liver to take sample tissue out and analyze its condition.  The problem with this method is that you can’t test the entire liver. So if you are gathering samples and you don’t happen to hit an area where there is damaged tissue, the result will falsely indicate that you do not have liver damage. Blood testing also does not provide consistent reliable results. I have members in my group that are in the more advanced stages of the disease who receive clean blood tests. I do not understand why that happens but as of 2014 I do not see either of these as a complete picture of the condition of your liver.

The fibroscan machine looks very much like a standard ultrasound. There are 2 probes that are positioned on both sides and a computer screen in the centre that has 2 testing abilities.

The first test is looking for the fatty infiltration in your liver. They will use a probe with a short tip that captures the shear wave velocity. If the probe receives a quick response it has found damaged liver tissue and been returned because the wave cannot continue past the damaged liver. If the probe takes a longer time to get the wave returned it means that your liver is healthier.  My daughter lay on her back and then had right arm up over her head. She was directed to turn towards her left side so that the technician had the best possible access to the liver. A spot of ultrasound gel was placed in 3 spots on her liver.  The technician took the probe and placed over the gel spot. My daughter described the sensation like it feels when a doctor is testing your reflexes.  Approximately 10 readings are done for this test.

There is an important consideration for this test. If there is a lot of belly fat around the liver this test may not be able to access the liver with this probe.   My daughter was able to get this probe to read her liver.

The second test is looking for Fibrosis and also dead tissue in the liver.  The probe is longer and it is able to read deeper within the liver. The same process is used and the results of both tests are sent to your hepatologist to be assessed.

The test results can provide you with a sense of the current status of your liver and if it’s done yearly you can monitor the progress of your recovery or additional damage that is occurring.

The Fibroscan technology was just released and approved in the United States in April 2013. The Toronto Fibroscan Clinic is receiving patients from the states as there are long waiting periods for the testing and the costs can be very high.  In Toronto you are not going to have a long wait to get the test done and you will be paying closer to 100 dollars versus 400 +. The Toronto Clinic can be reached via :

Sun Life Financial Centre

3300 Bloor Street West

Centre Tower, 11th Floor, Suite 3140

Toronto, ON  M8X 2X3
info@liverscan.ca

Tel: 416-268-0150

Fax: 647-494-3243

www.liverscan.ca

 

My daughter’s results came in with the following findings:

“ This FibroScan® suggests mild steatosis (grade 1) with mild fibrosis (stage 1). The prognosis is excellent. In patients with liver stiffness <6 kPa, the estimated 3-year risk of liver-related complications/mortality is ~3%.

 

RECOMMENDATIONS:

1) Management of risk factors for fatty liver (e.g. weight loss, optimization of diabetes and dyslipidemia, and alcohol minimization).

2) Recommend a repeat scan in 1 to 2 years for disease monitoring. “

 

Robert P. Myers, MD, MSc, FRCPC

Hepatologist, Medical Director, Liver Scan Direct

Dr Myers sent the following note along with the results:

Hi Michelle. Attached is Megan’s report. The good news is that it suggests only mild, stage 1 fibrosis so the medium term prognosis is very good. I hope it reassures you two somewhat. Unfortunately the Fibroscan can’t differentiate NASH from non-NASH, but fibrosis is the most important outcome.

 

What this gives is a baseline, we do not know if when she started with this disease in 2008 it was better or worse than the stage 1 steatosis and mild fibrosis. Now we will refocus our efforts for clean eating and have this test redone in a year to see if this is reversible with diet and exercise or this will be permanent damage that my daughter will need to be aware of.

So with these comments and the results I want to stress that Fibroscan will not be the only test that you should rely on for answers about the current stage of your disease. You should note that this test cannot differentiate between NASH and NAFLD.

My recommendation is that when you receive a blood test that indicates higher values in the ALT and AST results have that confirmed via an ultrasound. The ultrasound will confirm if fatty cells are present in the liver based on the difference in the way they are displayed on the screen. The ultrasound can only tell you if they are fatty cells whether there is fibrosis, or NASH is not confirmed via ultrasound. If both the ultrasound and the blood tests confirm the presence of fat in your liver, then you can use the non-invasive Fibroscan test to determine if there is fibrosis. If there is further clarification required the Liver Biopsy can provide an analysis of a specific section of liver tissue.

Fibrosis indicates that there is Scar tissue in the liver. This occurs when the liver tries to repair damage in the liver and the repair process goes wrong. The more often this happens the more serious the liver disease will be. The damage can be caused by alcohol, prescription drugs and viruses.  When the liver is composed of more scar tissue than healthy tissue the disease has advanced to Cirrhosis.

I would advise patients with fatty liver disease to consider the Fibroscan an important part of monitoring the progress or improvement of the disease.

 

Another Fatty Liver Death, Get Tested, Find Support!

One of my Fatty Liver Disease group members sadly shared that her good friend’s brother Dan had died from NASH last week. Dan did not find out he had the disease until he went to hospital in December after thinking he was experiencing a stroke. Once he got into hospital they discovered it was extremely advanced Fatty Liver Disease.  Dan spent December – February in hospital with no hope of recovery. He died within 2 months of learning of the disease.

This chills me at a number of levels. Firstly….EVERYONE needs to have a yearly physical. I know there are a ton of people who hate going to the doctor, I am even one of them. BUT yearly you need to demand that you are given a blood test and that liver panel tests are done. IF you find this disease early YOU CAN REVERSE IT. Doctors DO not know why this disease progresses to the more serious level of NASH. So unless you are diagnosed early and you find the support you need to make changes to improve your health there is an unknown risk of this developing to a deadly diagnosis.

Even if you find out that you have NASH with Fibrosis  finding a good support group can mean that you SLOW or stop the progression of the disease. I have a large number of members who are staying stable at a higher level of the disease by altering their lifestyle choices to prevent further damage to the liver.

Our Fatty Liver Group on Facebook was created in 2008. We have over 1200 members from all over the world and we are a very active supportive group. Please see some of the comments below for what people said when I asked what the Group means to them. I am sure you can relate to one or more of their stories if you have been told you have fatty liver disease.

To join the group https://www.facebook.com/groups/fattyliversupport/

 

Elisa Davis I love this group…you all have made a huge difference in my life since joining…i have more answers to my illness….the support is so wonderful

Mike Murray It’s so hard to talk to people about our fears, enzyme numbers, successes. Who knows what enzyme levels even mean? It’s meaningless to most people. I can’t imagine the past few months without the support I have from this group

Theresa Prebula I don’t feel as lonely and crazy about how feel with my liver disease.

Bill Pinson I wish I had checked on a group like this or had more information, I may have been able to keep from needing a Transplant, could still have my old job and my life would be as it was. I lost my retirement, nest egg and all savings along with material things I had accumulated to keep the family going.

Priscilla M Simoneaux I have enjoyed the fellowship with other people who understand what I’m going through bc they have the same disease that I do. I don’t have to make excuses or explain myself. I’ve enjoyed getting info and encouragement from others to help me with this and to stick to this new healthy lifestyle before it progresses. Mostly, the friendship from you Michelle Clermont and the info you’ve given with your work that your doing to take this to a national stage to get the world to notice what’s going on and to take this seriously. Not enough is being done to make the younger generation realize or understand what leads to this. I don’t feel alone or lonely bc I have this group and I know bc of you that there are others out there going thru the same thing I’m going thru.

Nancy Fowlkes I love being a part of this group. Sadly I didn’t know about it before all of this happened to me but I feel like I have learned a lot and hopefully I have helped others too. No one else knows quite how it feels unless you are going through it our helping someone else go through this. I don’t know if many people know this or not but this group knew about me way before I knew about you guys! Pam Qualls Maloley heard about my story through a good friend of mine and shared my journey with this group and some of you joined my prayer page and followed me. That meant a lot to me! Fortunately I made it! But I was in the same position her friends brother was in. It was too late for me to reverse it. You guys are great and I appreciate the friendships that I have made and this group helps keep me sane sometimes.

.Pam Qualls Maloley The friendships I have made in this group have become family, one even helping me out financially. No matter what the outcome of this disease for me, I will count it a blessing because of these people.

Linda D Roy I am new to this group but have learned so much. Group of loving people who understand because they are experiencing or have experienced similar things. Glad that I found this group and hope I can in some small way help someone or encourage someone else. One thing I can certainly do … Pray for everyone

Francine Irwin McGerty I know I haven’t been around on here a lot lately..but this group has changed.my life! You’re my family, you’re my friends and your the only support I have. Without this group I would have given up. And I can vent to anyone on here and no one judges me. You are all always here for me. Xoxoxox

Ganny Piro The people on here have made me believe that I am not crazy! My Doctors have not taken me seriously for years. I am now taking control of my life and my health. I will be eternally grateful for the support and information you have given me. Although we may live worlds apart you all feel like part of my family. Thank you!

Melissa Harbin Waid I felt alone & in the dark 4yrs ago when I was diagnosed. I was constantly reading and searching on the internet for answers to my questions..even though I have a fabulous hepotologist and supporting family I was afraid of dying. when you go in the hospital to get your gallbladder out and the surgeon tells you “you have cirrhosis ” that’s hard to swallow! 
I am very thankful for this group & all of you..there are few that I have become very close with and have a personal relationship with & feel like I have known forever though i’ve never meet them in person. 
Michelle Clermont, the founder of this group, I ‘ve said before to you that it saddens me that you found it from your daughter’s illness.. I applaud you for being the mother that you are and fighting for her. In the process we are benefiting from it..I thank you and I love you! We are here for each other whether it’s 2:00 in the am or 2:00 in the pm..that’s why I love this group.

Sara Skinner I was very scared and confused at first. I am only 30 and not a big drinker. Although the DR said it was Non-Alcoholic I only ever related liver disease to people who were considered heavy drinkers…and that is what most people think where they hear that I have liver disease. I don’t even argue with them. I know that people who really know me and care know that I am no alcoholic that drank my liver bad. This group gives me strength and courage to face the disease. It made me want to learn more about what is going on in my body and what can happen. I have learned of certain signs to look for to know what to ask my doctor about.

Gwen Davidson I didn’t think it was a big deal as I was told you have fatty liver. Lose weight exercise more. Nothing else. This group has made me realise it is a big deal and that I need to take control of my health  I also now have a list of questions to ask my doctor when I see him on the 27th.

Belinda Anne Tamara Sydenham I love this group. I have made so many special friends like Dalibor, Michelle, Ruth to name a few I know there are others that has helped me as well and still are. for me I find I have trouble talking with people cause I am so shy and all so I always bottle things up inside of me. so when I found this group I thought why not join and since then I have been given words of encouragement and have learnt alot along the way in my healthy journey in trying to stay healthy. So I thank you to this group for everything!

 

Kiran Chatha It gave more insight in to what is happening inside my stomach. It gave me a hope that, yes, I’ve real friends who can understand my situation and propose possible solutions. It gave more knowledge about my situation and now I can ask the Dr more questions. Can take more informed decisions. It made lot of difference. My mother passed away almost 15 years back with Cirrhosis. Had this group existed that time and had I been part of it, it could have made a difference. This group means a lot to me. Thank you all for your support. And thank you Michelle, for creating this group and making me part of it.

Robin Shaw When I was told I had NAFLD, I was also told that lots of adults have it and it’s nothing to worry about. So for a year, I took the advice and went on my merry way. When other health issues came up and I started looking for answers, I found this group. It has been encouraging, informative, at times heartbreaking, often funny…it is a safe place for me to learn how to cope and how to care for myself. In this group, I feel loved, accepted, understood, challenged to keep making the right choices…it feels like family, and I’m so very thankful for y’all!

Ruth Pinciotti Shegda I have tons of health issues from having an undiagnosed autoimmune disease until my 40’s. When my doctor told me 4 years ago that i had a fatty liver – – and do not worry just lose weight, alot of people have it”..i believed him. In 2013 when i had my annual ultrasound for the liver he told me you have gallstones. I decided to research on my own and found this group. it saved me!!! I finally understood what was wrong and what proactive steps that I had to take to help it not progress further. So many people here including Michelle Clermont, Melanie Melaine Smith Dalibor Smolík to name a few have been so patient and kind in answering even the smallest question that I had. I also made amazing friends in several members.

Marguerite Elliott Even though I’m 4 years post transplant, it was not until joining this and the Transplant Survivors and HE group, that I have become more aware of what happened to me. Although diagnosed with NASH in 2007, I personally had no idea of what lay ahead. I truly thought that having the varacies banded was my cure! Following my BIG HE coma in June 2009, my brother became quickly educated, but I did not really comprehend the seriousness of everything. I know some people figured I had just given up, as I found it difficulty to walk, eat, carry on a conversation and basically just live. I now recognize that the disease and particularly HE robbed me of almost two years of energy, cognitive reasoning and memories. Prior to my HE coma, resulting in two days on my bathroom floor, I didn’t have the where with all to do anything, but the most rudimentary research on NASH. In the past month, I have learned more, just by reading people’s comments and following links. I’m not sure if knowing would have made a difference in what was happening, but I don’t think I would have become so depressed thinking I wasn’t trying hard enough or that the confusion was permanent. Also, reading other people’s comments has triggered some memories, which I am thankful for. I am so happy that I stumbled upon this and the other groups. Perhaps, doctors should inform their patients of these groups, so that people can prepare themselves as best as possible, for what may lay ahead.

Denise Miller-Powers When I found out just a couple of weeks ago, I felt to overwhelmed and afraid. So I thought well lets just see if there is some one on FB. I found this group and I am so glad. It has helped me to know what to ask, what to look for in some signs. How to eat and most of all the great support from people. At one time we were strangers to one another and are now a family struggling through liver disease together.

Terri Stone Bordelon I came here in April 2013 suggest by a friend. I was so alone, my family thought because I was trying to find information on the Internet I was adopting all my symptoms from that. Even my dr would tell me to stay off the Internet. Everyone was mad because I was researching every symptom I could think of, because my doctor told me absolutely nothing. 
When I found this place and I got such warm greetings and most of all understanding, I cried like a baby. I kept on fighting and researching everything and learning from you guys. I got a diagnosis a couple of weeks later. This group has been a comfort zone and my strength! Thanks to everyone here! OXOXOXXO

Connie Kaye In 2011 when I was diagnosed I was so lost. The docs told me what I had but they were so vague as to what to do. Lose weight and exercise. Ok. How do I do that? There was so much conflicting information on the internet and I felt utterly alone. I floundered around and didn’t get anywhere. My family didn’t understand. They still think I am just a hypochondriac. Maybe I am. But there is good reason to obssessively worry about one’s health when you have the possibility of a transplant at some point in your future hanging over your head. Finding this group more than a year ago literally saved me. Support, information, and friendship helped me develop a plan and gave me the motivation to stick with it. I honestly don’t want to think about where I would be today if it were not for this group. I love youMichelle Clermont, and all the friends I have made here!

Cheryl Lynn First and foremost, sadly I know I am one of many…too many. This group lends support to each member and education is added daily. This is a constantly evolving disease. Every day we learn something new it seems. Some days I am ok dealing with this and others get pretty down so its good to have a group to sound off in. Thank you!

Suzy Freeman I find this group very comforting. There is a great deal of support and patience with we newbies to the group. I feel that I can come here and not only learn but I could vent if I feel the need. It’s nice to “be around” people who don’t think that you’re being a whiner. And, I really do appreciate the knowledge that I’m finding. So many people aren’t getting information from their doctors. Sadly, I don’t think a lot of doctors are educated about NAFLD/NASH.

6 Years for a complete diagnosis! This HAS to change!

My daughter was first told she had NASH in 2008 at age 11, now I know that there is NO way that this pediatrician could have known if this was NASH or NAFLD from the ultrasound and blood test results but he was the first to say no reason to do a biopsy or any other tests. My daughter would just have to exercise and eat better.  No other advice was given, no direction as to what it means to eat better with liver disease.

As the years went on we had all kinds of doctors discount my daughters illness, I asked for referrals to a hepatologist and we were sent to a gastroentologist who also shrugged their shoulders and said no point doing any additional testing. My child has been through hell for the last 6 years with extreme vertigo, broken bones that wouldn’t heal, extreme menstrual bleeding and more colds and flus than I can count. Nothing is simple for my daughter any type of trauma to the body in illness or injury takes her down for weeks, never just days like the rest of us. 4 months for a broken toe, that the rest of us would see heal in 6 weeks!  No doctor has ever said hmm well maybe the issues in her liver are causing other things not to work as well in the body.

The liver controls our immunity, the liver controls our metabolism, our eyes, our toxins to the skin causing rashes. When your liver is compromised then there are serious impacts on your day to day life.  But no doctor has ever figured this out for my daughter.

So last week my daughter had a new non invasive test in Toronto called the fibroscan.  This does not need a referral and we were able to book a quick appointment If we had not had this test done we would still be in the dark as to the actual condition of my daughters liver.  The test was easy and fast and no negative impacts on my daughter. The results say that she has mild stage 1 steatosis and mild stage 1 fibrosis. The most important part is clearly fibrosis. This means that she has scar tissue in her liver and it means that the disease is more serious that any doctor has ever considered.

The good news is we now have a baseline to work from and we will focus everything on getting that fibrosis reversed. However, what we will never know is was the disease worse 6 years ago? Has it improved or gotten worse?

If any doctor in the last 6 years had considered the full picture for my daughter ,maybe we could have done this sooner. but nope she will be just fine they said…. Fibrosis folks …not just fine.

Demand that your doctor get the official details of your disease with a biopsy and/or a fibroscan! DO not let them say you will be just fine! IF we did not take this seriously my daughter could be on the transplant list by now. If not for my supporting those with this disease and not letting it go….this could be a much worse story!