When you think about your experiences with healthcare are you pleased?
• Have you ever felt that the medical industry wasn't interested in you?
• Have you struggled with vague symptoms that were mostly ignored?
• Do you think your condition should have been recognized earlier?
This is a link to a blog post I just sent out. It is my view of the state of care for liver disease if that is of interest to you.
Wayne
Thanks, Wayne.
Hi Wayne, yes I read this when you first sent it out and yes. I do feel that way and yes, I absolutely feel cheated that I was not able to try to turn this around before I was so badly injured. I told both my primary and gastro that as soon as they knew I should have been put in a room to watch a video on liver desease that scared the hell out of me. I should have been told what could happen instead of mentioning a couple times a year, you really should lose a little weight. My primary said she was going to start using the fibrotest on her fatty liver patients. Gastro said they are tossing around some ideas about handling this issue sooner. Really, tossing around ideas?? What's to toss around, you know what to do, just do it! Thanks for your article even as unpleasant as it was to read...
I agree unfortunately primary doctors too often check only ALT and if it is ok they say nothing to worry about your liver.
Screening amongst fatty liver population should be more complex. There are some accurate procedures to apply. For example at least tracking Fib-4. Or fibroscan. But all this should have balance between false positive and false negative.
Hi, the thing about these test. I did the FIB4 with info from blood test it scored me as undetermined, the fibrotest run by clinic was T3 bridging and fibroscan T4 probable cirrhosis. So out of all result they go with fibroscan and determined no biopsy needed because they know the reason it happened and said it has been going on for years. So, I have been tested every 3 months for years and now at this point I'm told this ... where were they all those years back? I was there getting tested like a good girl doing my part for my health, where were they both gastro and primary. Gastro did ultrasound first for diverticulitis and fatty liver was there in 2019. He never said a word, in fact I never went back in he just prescribed meds. The primary just casually suggest losing some weight, nothing major!!!! I go next month for 2nd opinion but what will they tell me. Good thing, they are affiliated with a transplant hospital so might be up on current events.
Just wonder but not sure if you like to answer. During your blood tests all the years did your primary dr perform Fib-4? Although I am not sure when this noninvasive test started to be used widly. Anyway you can have F2 and Fib-4 is not so good in this case.
No FIB4 was not a test they ever did, through the years they did nothing but the usual blood test I had done every three months for my regular checkup. The FIB4 I did with their numbers just recently my number was 2.68. Is this what you are asking?
Yes, thank you.
no, Fib-4 was not considered to be useful ( and many docs still don't think so). The score is not really a diagnostic. It calculates a probability so it gives both a low and high limit which is a guide that you either don't have fibrosis or you have advanced fibrosis. In between it means you need more testing to figure out what is going on and that is the F2 area you mentioned. It is really best used as an early warning flag.
Yep I know nevertheless it can be useful along of course with other tests. And yes fib-4 is the best to exclude F3-F4. Of course not so good in every liver disease. But is cheap and can give some direction to follow liver condition. Better to check but still keep in mind its limitations.
There is always about probability. Even biopsy is not 100% conclusive. There is no one magic/ideal test.
I was lucky, mine was found when I had gastric by past surgery 21 years ago. The first gastric dr. I went to I didn't feel he really cared so I got a second opinion where they did liver transplants because I felt at the time that was my only hope. They care there and no what is going on and saw me every 6 months to a year to watch for change and then offered me the study option. I encourage people to go to a hospital or dr who is really working to save lives. We all know this is going to affect our children as well and I have preached to my kids, but their drs say, what do you want me to do cut you open to find it. Wrong answer. I'm working with my kids now to get checked. They are 40 years old the age I was when diagnosed. We need to educate this Dr.s about NASH. It is killing so many and they say they died of heart attack. Yea they did, after their liver shut down. I have experienced many heart attack symptoms and it was my liver crashing. But they don't know that, they don't know they have NASH. thanks for letting me vent.
Wayne,I mean no disrespect, but being a woman advocating for yourself is so much harder. The more I pushed for testing beyond the typical liver panel, the more I was viewed with a psychological problem or simply menopausal. Once these are in your chart, you have everything stacked against you labeled “past history.” They never go away!
I want to ask you about another concern. If NASH goes under the radar and no one pursues further testing, is contrast with imaging safe?
I’ve always been asked if I have liver disease or kidney disease prior to all imaging with contrast. Again, a good technician will run a quick liver test, but nothing ever alerts anybody. The contrast is given.
You’re a good man, Wayne. Everything you’ve said is sadly true. I am currently trying to let go of all my anger and frustration with past physicians and specialists. They remind me of the bullies on the playground, but I’m going to give them the benefit of the doubt. I try to put myself in their shoes…
There are a lot of inequities in medicine and too quickly judging women to have mental health issues is certainly one of them.
The big danger with contrast is kidney failure and since kidney damage is a common result of liver disease they ask the question that way using liver as a flag to possible kidney problems.
I still get angry at times but no value in the past but we hope to warn others. Thanks for being part of the community.
I’m new in dealing with cirrhosis diagnosis.I was told 20 plus years ago I had fatty liver. It never ever made a big deal, even though I’ve had elevated liver enzymes for all that time.
Had a cat scan/ultrasound on recent morning after weeks of illness, including pain, diarrhea, vomiting.
Ended up at ER that night with intense pain. Another ultrasound at ER found nothing. A cat scan with contrast showed cirrhosis/portal hypertension.
Days later, primary told me I was fine according to ultrasound/cat scan done morning prior to ER visit.
She didn’t understand my shock at learning thru ER I had cirrhosis/hypertension and she had no idea.
Not sure I can do much to change my health outlook but at least I know I need to try.
I’ve received education/help and good medical advice for decades on stopping progression of Chronic kidney disease, the result of a birth defect.
So now I have one bum kidney and cirrhosis! Two defective organs?
I’d like to help change this flawed medical system.
I’m terrified my adult kids are still not getting early intervention and helped with lifestyle/medical care changes. It may be too late for me at 60, but there are still many younger lives that must be saved.
My son, 42, also has fatty liver.
Thanks, a sadly common story but don't assume you have no chance now. If you can remove the things that are hurting your liver it will try to recover. I was first diagnosed in 2010 and I'm 79 now. The key tool so far is diet and exercise. Here is a link to our recommendations
fattyliverfoundation.org/li...
It is the traditional story, eat your vegetables and go out and play.
Thanks!You know I lost that 20% of my weight years ago following fatty liver diagnosis. I am overweight (by at least 50 pounds). Exercise is a struggle with maimed ankle from horse accident 15 years ago.That said, there are many changes I must make to diet.
This may be off base... I just feel it starts with insurance and so called "healthcare"... unless you pay cash and have money to spare you only get sickcare. Dr's are told to poopoo you so you give up... Been fighting this corrupted medical system for myself , my 26 year old challenged son and my husband for a long time as I'm sure others have... Maybe I'm just jaded.... Thanks for letting me feel safe enough to vent
Early data from the NAFLD/NASH Care Survey. Do you see yourself here?
Non-obese Fatty LiverI'm surprised to be nominated for this award programIs anyone in the group interested in genetic research about NASH? Do you have NASH, F3 or F4, and have an interest in helping educate others about this disease?
