In Jan this year I had a mildly elevated ALT of 80. As my mother had AIH they tested me for that. I am still waiting for that part of the test to come back 4 months after the bloods were taken although the LFT's showed that my ALT had reduced to 50 which I guess is good news. Everything else looked OKI
As part of the initial consultation they booked me in for a Fibroscan. I hadn't really thought much about it but mow I am terrified.
The consultant I saw at Kings in London was really negative and said that the ultrasound are only 90% accurate for detecting cirrhosis and that 10% of people with fatty liver also have Cirrhosis.
I am now really scared that I may have Fibrosis or even worse Cirrhosis. Do they give you the results there and then even if its really bad news?
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se31
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Auto-Immune Hepatitis can be difficult to diagnose and it is usually a combination of blood tests to look for specific anti-bodies, scans, a liver biopsy and often a trial run to see if there is a positive response to steroid treatment to bring down inflammation levels. The fact that your mum has it means they should look at whether you have this too BUT out of nearly 1000 people on the AIH facebook page only I think one lady has a child who also has the condition.
Your ALT is not wildly high and i've seen people on the AIH page with ALT's into the hundreds and even thousands during a 'flare' - have they definintely said you have a liver issue because ALT levels can fluctuate and can rise during other illnesses like having an infection or virus?
My hubby has cirrhosis due to AIH but his was only picked up after presentation with late stage cirrhosis symptoms ( I guess that doesn't comfort you much). His cirrhosis could/can be seen on ultrasound and words like 'dense echo texture' and altered shape of liver are mentioned.
He has never had a fibroscan but from reading other peoples experiences I think you do get given a 'score' or an indication of the points on the day, however, it is in the interpretation that things go a bit odd because in different liver illnesses the scale is different as to where fibrosis / cirrhosis starts. That's the bit you want them to make clear because we get loads of folks on here who've been given their fibroscan 'score' but no proper interpretation of the findings.
Fatty liver if left unchecked can lead to damage to liver cells which will then try and repair/protect themselves with collagen fibres and this is what leads to the fibrous build up in the liver (fibrosis) which can go on to cirrhosis. Even cirrhosis is now thought to be somewhat reversible if the cause of the liver damage can be reversed i.e. Hep C gets treated, AIH is treated, alcohol users stop drinking, those with fatty liver improve their dietary intake and exercise SO it's not all doom and gloom.
You need doctors to establish what is actually going on. Do you have a liver issue? What is it? What treatment options are available or lifestyle changes can you make? Future treatment plans & monitoring?
All of these need to be answered and when you go to appointments, go forearmed take a notebook and jot down all your symptoms, any meds you are taking and most importantly all the questions you want to ask, It is your health and you need to take ownership, you need to make sure you get the most out of the appointments and don't come away with unanswered questions because these just lead to niggling worries which make you feel worse (AIH has been shown to be exaccerbated by stress).
thanks for the detailed reply...much appreciated. No they haven't said I have a liver condition at all. The initial reading of ALT 80 came about as a result of a general health check screen. I asked for a scan the sonographer said nothing sinister at all, just some fat. I then cut out alcohol altogether and tried to cut down on sugary/fat foods. Lost a few pounds and after a second round of bloods, my ALT had gone down to 50. that was 3 months ago and now I have the Fibroscan. Hopefully it will be OK.
Sounds like you've done all the right things and results going in the right direction. Hopefully it has been a bit of fatty liver and you are managing to reverse it by doing all the necessary.
I'm amazed you're having a fibroscan with a mildly elevated alt but full marks for the GP in ordering it. I wouldn't worry about it-get it done and ask the operator for the results and get it in writing. My GP had never heard of a fibroscan.
So... I just had my fibroscan and I had a score of 6.8 with a fat score or 300. She said that its very mild stiffness and that its reversible. She mentioned that it can be the fat that causes the stiffness. Any ideas??
Sounds very much like the fatty liver which had been mentioned earlier. Many people in the Western World have fatty liver disease without knowing it and in many cases it's down to our poor diet which is too full of highly processed foods, salt and sugar. Alcohol can also contribute to fatty liver disease as can diabetes and such like. When hubby was first taken ill his consultant checked for fatty liver pointing out that even though in his words 'hubby was built like a racing snake' he could still have fatty liver.
Non-Alcohol Related Fatty Liver Disease is reversible as I indicated in an earlier reply. The British Liver Trust has guidance on that at:- britishlivertrust.org.uk/li...
I hope you are still going to get some follow up with either a hepatologist or gastroenterologist going forward so that you can continue to be monitored. Getting those inflammation markers down is a must so someone should be giving you guidance on how to obtain that.
thanks Katie.... yes they said there will be a follow up appt. I think it was a combo of too much of everything. Have cut out alcohol over the last 6 months but I still need her with my diet. I am not really overweight but as the person I saw today said... if you cant reduce what you put in then you need to exercise. I am no expert but in the scale of things are scores 6.8 on stiffness and 304 for fat quite severe?
No idea about the scores, as I said in my first reply to you the scores without proper interpretation cause no end of confusion. Hopefully all will become clear at your follow up.
It might be worth asking them to run the AIH antibody tests too just to assure yourself those are not in the mix too especially with mum having that.
i had them done months at the hospital and have ben chasing the results ever since. I had the LFT's back and they were all in range but they never sent the others. Very annoying
I am very confused about my fibroscan test results. IQR 47, CAP (dB/m) median 198, E (kPa) median 33.3, IQR 5.1 IQR/med 15%. I have autoimmune PBC. I haven't found the right place yet to Illuminate Me on how my liver is doing. The doctor did tell me I had cirrhosis according to what the gastro said. I asked about it last time I was there, she left and came back into the room and said the median was 12. and walked out. Can anybody help? I'll be dead from this disease beforeI find out what this test means. BTW, i'm compensated. (No symptoms but fatigue at times. I'm 79.
Unfortunately the most publicised 'score charts' for fibroscan don't include what the scores relate to as regards the auto-immune conditions although a kPa score of 33.3 which you seem to have received probably does confirm you have cirrhosis. Doctor was saying that anything over 12 is cirrhosis (which it probably is due to your underying condition PBC).
I would celebrate the fact you have no symptoms from cirrhosis other than fatigue. That's great news, your liver is obviously 'compensated' at present meaning it is continuing to manage to do most of its 500 different functions and doing the most important of them reflected in your symptom free state.
It's when your liver slips into the decompensated state that problems occur.
I wouldn't worry about the fibroscan score at all, just continue living life. My hubby has auto-immune cirrhosis and his doctors have never even suggested he has a fibroscan the reasoning being it adds nothing to his known diagnosis.
Being 79 years young you are already doing something right so keep living each day to the full.
I'd be happy-ish with 6.8. Mine was 7.2 a couple of years ago but I suspect has worsened because I didn't take enough care. reducing alcohol and refined carbs and a bit of exercise should sort you out. Keep an eye on it.
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