I was just diagnosed with NAFLD. I already have PBC and cirrhosis because of it, diagnosed 6 years ago.
What is the difference between NAFLD ... - Living with Fatty...
Living with Fatty Liver and NASH
NAFLD is the umbrella term for excess fat in the liver. NASH is the point where inflammation begins to cause damage to the cells. Tough challenge on top of PBC as both make for worse cirrhosis.
Thanks very much for your reply. So now I have more questions! If I'm understanding you correctly, the damaged cells create the scarring of cirrhosis? Also, what tests would be given to differentiate between a diagnosis of NAFLD and NASH? In other words, how could a doctor actually tell if a person has NASH? If I already have cirrhosis due to PBC, I suppose I could also have NASH. I didn't get a chance to ask my doctor about all this during our recent brief consultation.
Your situation is complex. You would probably have to do some liver specific blood tests such as NIS-4, ELF or LIVERFASt to see what chemical changes are actually happening. The usual liver stiffness tests won't help you though you can make some inference from actual fat content.
Thanks very much for the reply. I'm going to be doing my regular 2x a year blood test next week and I'm pretty sure none of these tests have been ordered. I was actually wondering about the validity of my last fibroscan which showed fatty liver despite nothing showing up on my ultrasound 1-1/2 months before. That seems strange enough to wonder if the fibroscan was accurate. It was a little rushed. By the way, my BMI is in the healthy range so this recent diagnosis is even more perplexing.
I have to do a fibro scanas well and I've they are not accurate at all ,soi really want it. I did have a fibro test and it was normal my nash test was mild and I do pain where my liver is. My liver enzymes are not but being lost 40 lbs but my ALT is 9 points above normal. Have you had the blood fibro test ?
I have mild NASH I found out in Feb 2021 I've 40 lbs my liver enzymes have gotten better my ALT is 9 points from normal. I have not hafa fibro scan done yet and I really don't want it cause I've heard they are not accurate, but blood fibro test was 0. I've been eating as I should so I believe from what I've watched and walking. This is nightmare I'm living now, I cry everyday. Sorry this written someone else's post. I wish you all the best.
Try to have some optimism. I have all these conditions but I feel fine and my bloodwork is normal. I've had cirrhosis and PBC for six years. I don't know how long I've had fatty liver or NASH...or if I even have it at all. I'm wishing you luck!
Oh my goodness that's amazing your liver enzymes are normal and you have cirrhosis, you say have it 6 years, do have symptoms for it. That's amazing about your blood work. So do you need a transplant at this point? What stage? This is all scary for us all. Dis you eat the way we are supposed too or did just find all out?
It sounds like you are on a good path. While it is true that the best use of FibroScan is to rule out advanced fibrosis if you have a good lifestyle going and your general indications are improving there is every reason to be optimistic as NASH can managed with lifestyle most of the time.
Thank you, that's encouraging! I'm feeling more optimistic these days after the shock of those seemingly negative tests. I feel like I'm still in control of my future. It still bothers me that I can't really nail down my GE as far as true diagnosis, etc., but like he said, regardless of an exact diagnosis, I just have to do my best to have a healthy lifestyle and I'm definitely an optimist when it comes down to it.
Thank you for your response, I'm in fear the Fibro Scan Due to the fact I've heard it is not very accurate. What is a ALP test? Do know it takes fir the fat to release for the liver when you've lost 45 lbs?
Serum alkaline phosphate, think it’s correct spelling. Not sure but wow! You’ve done brilliant! Xxxxxxx by the way talking UK measurement.
Thank you so much yes I've had that test and it's normal I appreciate your response it's been hard but since January I've managed to accomplish a lot unless you're a lot just have to do this fiber scan and it's not something I really want to do
It’s painless and you get result straight away. I would love another one but GP won’t send me for one and I can’t find anywhere private.
Why won't the doctor send you for another one I don't understand that that's awful if the patient request 1 the doctors should just go ahead and do it it's for your health for your benefit so how did your test result turn out if you don't mind me asking? I've heard they're inaccurate
Because she has had all the tests and scans which showed no more than mild fatty liver. Her diagnosis was diverticulitis or diverticular disease. Her liver is fine.
Mine was 6.2. I have made enquiries and the operator isn’t a liver nurse. She didn’t know what ascites was. If I have another one I want it to be done by someone who knows about the liver. There’s lots of tales on the forums about over estimation and people being worried unnecessarily. I don’t think underestimation happens as much but I have a friend who it did happen to.
My liver specialist did a liver biopsy to diagnose NASH
Thanks for your reply. My GE has never mentioned doing a biopsy and I don't know if I'd want one anyway. I'm starting to think that these Fibroscans are kind of useless...
I have blood test that diagnosis it., my liver enzymes were elevated so my Gastro doctor tested for NASH and fibrosis through blood. I have stage N1 Nash and 0 fibrosis but he wants to do the scan ,I don't not at all heard they can be off. I'm just scared to death about all of it. I just found Feb 2021 ,I have 40 lbs I had stage 4 fat on my liver, my doctor due the weight it should come down.
My specialist said the only way to positively diagnose NASH is as with a biopsy. I was dreading it but it didn’t hurt.
Well biopsy is definitely the most positive way to diagnose anything, I'm just glad that my daughter said there was no need to do that I really don't want to go through that period so what was your outcome and how bad was it?
My liver specialist told me there was no need To do a biopsy at this time I had a blood test that diagnosed my Nash I have mild Nash and 0 fibrosis on my blood test but stage 3 fatty lover my liver enzymes are not too bad only my ALT which is 39 then you want it under 32 under 32 I've lost 40 pounds to make that happen it used to be a 100 I wish you all the best
Well, FibroScan does have an operator error aspect so hard to know. Those tests would not be on a regular order and you would want to coordinate with your insurance as a lot of them don't pay for them. A lot depends on your docs point of view about testing, I assume you are dealing with a hepatologist given your status with PBC.
No, he's a gastroenterologist. We have a huge doctor shortage where I live and there isn't a single hepatologist in my province. Luckily I don't normally have to pay for any tests because I'm in Canada however once or twice I paid some small fee for a blood test that wasn't covered. My doc is extremely laid back about all this. In fact, I practically had to pry my CAP score out of him. I asked him why my US wouldn't have shown fatty liver and he danced around but ended up saying that PBC sometimes makes these things difficult. I guess my regular blood tests will give me more information next week.
Yes I got NY blood test now, I need a fibro scan and don't trust it. My doctor is same ,he evan I could drink, no way I look at him like he crazy, he said what you have not drinking that nit the point it says everywhere don't drink , I evan looked up how to eat and I've 40 lbs and I still 15 to go, he was impressed. No thanks to him. My NASH is mild I think N1 and blood showed 0 fibrosis but the doctor still want a scan and I trust it, I think will show something and it be wrong freak out more. We are fighting for our lives and I'm terrified. Good things my liver enzymes are not bad only my ALT is 9 point above normal. I do pain where my liver is, it comes and goes everyday very scary. Good luck to you.
BTW I didn't even know I still had cirrhosis after my initial diagnosis six years ago until a new GP told me the results of my US this past July. All this time I had assume that I was reversing the cirrhosis because my fibroscans done every two years were showing lowering scores, down to 10.5 for the last one. My GE never shared any reports or gave me any info or updates. And now that I've asked for past reports, they don't seem to be available.
That sounds like progress. A 10.5 would normally be an F3 grade stiffness so you may be in a definition conflict zone. That's pretty good against PBC so keep it up.
Well, not so good maybe because my score was 10.5 in Dec/18 but apparently went up to 15.9 a month ago. CAP score was 291. When I asked about previous CAP scores he didn't have them and tried to tell me that fibroscans were only invented recently and CAP scores not taken. He doesn't have any of my past fibroscan reports aside from this year's. I find that pretty darn strange.
Anyway, I was feeling pretty encouraged until this last fibroscan. I'm hoping for operator error!
This is why I'm so terrified to have that scandal my doctor wants me to have it and I refuse I'm just going to go by what the blood test says that I have 0 fibrosis and just stick with doing that test the fiber scan I've heard can be very off and that terrifies me I don't want to go through any more added stress I'm already going through so much anxiety and fear from finding out I have NASH
Oh my that is horrible, I'm so sorry that you're going through this but yes I definitely would just go by what's happening today and doctor's offices I work for one and yes you have to be your own health advocate and be off the advocate and be on everything and make sure you get copies of every report appear in so. So what are your tests showing today how are you? How are your liver in times?
That is a big jump so your concern is appropriate. The original FibroScan's didn't have CAP so your doc may have had an older system and getting a report printed wasn't automatic so may not have been captured at the time. The data was probably lost when they upgraded. I wonder if they know how their newer machine calibrated against their original. (assuming what I described is what happened)
Aha, I didn't know that! I guess that's what he meant although that isn't what he said . However that sounds like the most likely explanation for the lack of CAP scores until now. I only have my kPa scores (five of them, going down each time until the last one at 15.9) because the GE included them in the synopses he sent to my GP through the years.
I can't remember if I already said this but the GE mentioned that there is some difficulty getting accurate readings from all these tests with a PBC patient. And he kept talking about "grey areas".
I'm super curious to find out how my blood tests turn out this week. I feel like they will tell me much more about how I'm actually doing. Despite all that's going on, I feel just fine.
I’m in Alberta and I ask for print outs of my tests and I don’t think they do cap scores.. I looked over all my results numerous times and no cap score. I don’t know how long it takes in other countries to see a specialist but my kpa score was 13.6 and I have to wait 8 months to see a specialist.
I don't know what to make of it. I'm going to assume that if a CAP score was even done, they would let us know if it's high.
What is a KPA score?
It’s what the liver stiffness is. I had a shear wave ultrasound done and my kpa was 13.6 which is high. I don’t drink, smoke, do drugs, take Advil or Tylenol etc. I take meds for epilepsy and an inhaler for my bad asthma. I don’t have diabetes or pre-diabetes etc. I’m so frustrated not knowing what is causing it. I do have A LOT of stress in my life but idk if that alone could make my liver this bad.
I'm so sorry to hear this so so what that shows how much fibrosis correct? What are your liver enzywe are liver in zymes? Yes yes I take meds especially for my cholesterol which I know is hard in the liver been taken them for years but I do have Nash were you diagnosed with Nash?
Did the doctor say there's any way of improving that like coffee I've heard 3 cups of coffee A-day can help with fibrosis
I was never a coffee drinker but I read about it being good for the liver so I drink it now. I have to wait so long to see the specialist that I do hardcore research and doing things I can until I see them. I can’t remember what kpa stands for but mine is high and according to all the different scales I have at least fibrosis. My U/S said no cirrhosis so that’s good. I’m exercising more, doing intermittent fasting and taking supplements for now.
That's wonderful I'm glad that you're feeling just fine fine and did you get your blood test back yet? How did it turn out? I'm with you I prefer to just go by my blood test at this point wait and eat right oh and by the way by the way did you hear about drinking 3 cups of coffee A-day how it helps with fibrosis I've been doing it I've been reading a lot of literature and watching a lot of videos so I have definitely educated myself myself doctors are saying different things than what I hear on Google or videos I don't know how to eat my doctor never told me how important it was and what to eat and I'm doing the best I can at what I have learned
I was told Mediterranean diet. I spoke to an internal medicine specialist yesterday and she said that. She also suggested fasting which I already do. My blood tests were fine last year but this year my Alt was 87 and my GGT was 99 or somewhere around there. I’m lucky though as so many people and sites say numbers don’t even show until it’s bad fibrosis or cirrhosis. I’m hoping I can reverse the fibrosis. I also cut out all diet soda and only drink water, tea and coffee.
What was the stage of your fatty liver mine is a 3 and do you know what the stage of your nashes or do you even have Nash? Yes my liver enzymes were never real bad in the beginning my AST was 80 and my ALT was a 100 now my AST is normal and my ALT is 39 My blood test showed I had 0 fibrosis but I have not done the scan yet I'm terrified to know where I am with that you're right I don't even know how long I've had this because in some cases it doesn't show on your liver enzymes
Well my stage of fatty liver would be 1? It just said mild. Idk if Nash is the same as fibrosis, if so then stage 3? It’s really confusing to myself and the Dr’s I’ve talked to as I don’t have a real fatty liver or other things to make it stiff and we are all baffled. When I finally get to see a liver specialist I’m going to make sure they get to the bottom of the cause.
Yes it's very confusing and upsetting all at the same time, what type of doctor are you saying now I see a gastrologist
Well I’ve seen 3 GP’s and an internal medicine Dr. I’ll just have to try not to go crazy with worry for the next 8 months until I see the actual liver specialist. I’m going to see if there are any private ones I can see sooner and how much it costs.
Well don't know you have yrt,yet, what I have and it's not good ot will that inflammation on your and than scaring much faster than fatty liver, that what have NASH I need to see where I am today iys been 9 months now. Don't worry my friend just eat healthy low carb and low fat try to stay 1200 calories a day till you see the liver doctor and excise walking if you can.
I was told by the Dr’s that I’m just below cirrhosis due to the liver stiffness but maybe it wasn’t accurate 🤷🏻♀️. I was told I have a stiff liver due to scarring but only a mildly fatty liver. The big question is why is it scarred. I was a party girl in my teens and half of my 20s but rarely drink since then.I don’t smoke or do illegal drugs and the epilepsy meds and asthma meds I’m on are supposed to be safe. It’s a mystery but all I can do it eat low fat and exercise more and cut out any drinking. I also used to drink A LOT of Diet Coke but I have now cut that out too completely.
I can’t believe that your dr left you in the dark about your diagnosis for 6 years. I always demand a copy of all my blood work and test results because I know how often this happens
I'm able to get my blood test results online but not anything else. For some reason it never occurred to me to ask for copies of my other results. I only saw my GE every two years after I was first diagnosed because my bloodwork returned to normal. Now with these latest results (fibroscan and US) he's going to "see" me in a year. (I say "see" because ever since Covid, he doesn't actually see patients, he does phone conferences.)
A ray of sunshine in my dark-ish story. I had my 2x/year blood test yesterday and the results are already in - they're still totally normal! I'm kind of blown away.
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