Liver disease: Hi I’ve recently been... - British Liver Trust

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Liver disease

Janden12 profile image
26 Replies

Hi I’ve recently been diagnosed with liver disease I saw a consultant in November and bloods were not good and results from fibroscan taken in April was 8.6kpa he said I could possibly have NASH/PBC and has referred for elastography scan and CT scan I now don’t see him till May today I had a elastography ultrasound and I asked my kpa reading and was told 14 that seemed quite a jump in 10 months from 8.6 has anyone experienced an increase like this before

I go for CT scan in couple of days but then got 5 month wait for results I’m dieting and exercising and doing as much research as I can but the wait is worrying.

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Janden12 profile image
Janden12
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26 Replies
Mkvi profile image
Mkvi

Is your disease caused by poor diet or alcohol?

Janden12 profile image
Janden12 in reply toMkvi

Poor diet I very rarely drink alcohol

Mkvi profile image
Mkvi in reply toJanden12

Mine was 8 KPa last year. Only 22 years old, weight was at 330 pounds. 10 months later, I now weight 190 lbs- 7.2 KPa. Still in the high zone but I’m hoping to be in the 6’s in the next 2-3 months and finally cure my liver disease. I make all food from scratch( all organic). I’m in the US and it costs me about $800/ month but it’s so worth it. When it comes to NAFlD, If you eat clean, your liver will be clean. Simple as that! Good luck

Onesmallstep1969 profile image
Onesmallstep1969 in reply toMkvi

Great result, Mkvi! You're on your way. Normal is right around the corner.

Janden12 profile image
Janden12

Thanks and good luck on your weight lost

MINTVCX profile image
MINTVCX

Please do not compare results from elastography ultrasound and fibroscan. The same kpa unit but different scale I think for staging fibrosis. Check this with your hepatologist.

Please try to contact your specialist when you have all tests (incuding CT) and ask for everthing. Stay health and positive.

pushthrough profile image
pushthrough in reply toMINTVCX

I have to agree with MINTVCX. I have had an MRI with elastography 10.7 and a Fibroscan 18.7. They follow different methodologies when considering stiffness. If yours was a CT that will also be different. Unfortunately and fortunately at the same time I have compensated Cirrhosis from alcohol. They have to run several tests prior to a diagnosis. It took me almost a year in the USA to be officially diagnosed at 39.

Janden12 profile image
Janden12 in reply topushthrough

Thanks for the info only when I checked they seem to be the same regarding the kpa figure and it was a shock to find I had gone from 8.6 to 14 and having to wait 5 months to see consultant doesn’t help so I am grateful for any information given

Onesmallstep1969 profile image
Onesmallstep1969 in reply topushthrough

18.7 is not as terrible as others on have experienced. It's cirrhosis but still within the range of numbers that, with changes in your lifestyle, could improve. You could dial it back to simple fibrosis rather than cirrhosis. Stop the alcohol of course. Then, drink plenty of filtered coffee (American style, not expresso etc), at least 3 cups a day. Eat many colors of vegetables and fruits of many colors. Walk daily. Your liver is capable of healing if you give it a chance.

pushthrough profile image
pushthrough in reply toOnesmallstep1969

That’s what I’m hoping for onesmall step. I drink at least 3 cups with only almond milk. I have cut out sugar, almost all salt, beef etc… I’m def eating wayyyy better than I was. I do need to excercise more but even without it I’ve lost around 7lbs by eating clean. My specialist said there’s a 99.99% chance it won’t reverse. I’m more optimistic though. I’m not even on medication yet. Knock on wood.

Onesmallstep1969 profile image
Onesmallstep1969 in reply topushthrough

Way to go. Use that naysaying doctor's pronouncements that the cirrhosis is irreversible as fuel. Vow to shock them with your good results. It's a beautiful day when you get to see a naysayer to eat crow!

Janden12 profile image
Janden12

Thanks I did ask was there a difference in the scale but she said she wasn’t sure about fibroscan

Janden12 profile image
Janden12

I have had a couple of symptoms a red spider vein on chest and I had a couple of days where I felt a little bit itchy but apart from that I feel fine.

pushthrough profile image
pushthrough in reply toJanden12

Go through the process of getting a proper diagnosis and don't research on Google. The more you research the more symptoms you will have. See a dietician. I can only have 2grams of salt, fish, chicken, veggies, fruit. I'm basically on a low fat high fiber diet with very little sugar. No beef for me and I miss it far more than alcohol.

Janden12 profile image
Janden12 in reply topushthrough

I have been googling can’t help it I didn’t even know I had anything wrong with my liver until I was admitted into hospital last year with gallstones which still haven’t had gallbladder out.It was them who referred me to liver specialist I saw him November and he went through blood test and fibroscan results if thought I may have NASH but now I’m worried it’s more worse then he thought

pushthrough profile image
pushthrough in reply toJanden12

I understand. I didn’t know there was anything seriously wrong with me either until I ended up in the ER by accident because the gastro doctor thought I had portal vein thrombosis which I didn’t. They kept me 3 days in there and it was a rollercoaster after that.

Belleben profile image
Belleben

Hi, there is a web site you can join and it gives you your results etc. Bloods come back sometimes in a day. Scans a big longer. It's called Patients Know Best. Good Luck x

Whyt profile image
Whyt

My first Fibroscan was 15.1, possibly elevated by a coffee I drank right before it having not been told not to. My second was 10.1. My bloods had been way out of line for the first and my liver was swollen, they were normal except Gamma GT for the second and I had zero alcohol from 1m before both

Whilst mine is heading in a comforting direction rather than alarming one we arent far apart on the ranges and I think it serves to prove all these readings can swing around, possibly not reflecting lasting change

Ruggerhead profile image
Ruggerhead

janden, as a matter of interest, what bloods were out of line, ie what prompted having to get a fibrascan etc. If it is not alcohol related and is diet related, are you seriously above weight ie high BMI? Sometimes other problems can stem from Hep B/C, medications, genetics etc. One has to look at the whole picture and that may take time. I had a number of fibrascans that each came back different, and even a meal or coffee etc can change some results. The only way I guess is to get another direct comparison, ie another fibroscan? Just to compare and contrast, and maybe with the same operator, i had different operators and they were all different. You can get these results down, even NASH, with medications and lifestyle. While you are waiting, change your diet, include more exercise, no smoking etc. Get your bloods redone in that period to check any changes in liver function, not just AST/ALT. Try and get another FS with the same operator to compare. You need to self advocate rather than wait another 5 months.

Janden12 profile image
Janden12 in reply toRuggerhead

Hi ruggerhead I had blood test due to gallstones I was taken into hospital as 2 stones had blocked my bile duct and had to be removed that was a year ago I was referred to liver consultant but didn’t see him until November.I had the fibroscan in the April then waited till November when I saw him he then explained that I had liver damage and wanted me to have a CT scan and elastography scan which I’ve just had. I’ve got a copy of the letter he sent to my doctor which shows fibroscan kpa 8.6 bloods ALP/235 ALT/59 CRP/10 platelets 121 can’t see any reading for AST I know I amber weight and been on low fat diet so I am exercising and dieting drinking plenty of water I was not expecting to see my scan show thickness of liver gone up which as caused me more worry.

Hi,

After you have had your CT and the results are available, you could request to see the hepatologist earlier to fully discuss the results and management plan.

Best wishes.

Ruggerhead profile image
Ruggerhead

from my experience there are a lot of ifs and buts, Fibrascans are great as an extra snapshot, but they are also quite varied, mine was different everytime, did not make sense, and despite change in diet etc mine doubled. So can be operator driven too, despite the machine needing a number of good scores to get the average. 8.6 in terms of liver damage could be a lot worse, the cut off for normal is around 7 anyway. I had a friend of mine who enjoys a drink or too, have one and his score was 8.5 and he was not even worried about it. You need to get as much info as you can before your next appointment, and the advice is stay off Dr Google, if everything you read there you believe we are all doomed. Even if you look at the latest blood pressure levels, a few years ago 140/80 was good now we need to be 120/80. The point is things change depending on perspective. Your ALT score would indicate some bilinary problems alright, as spotted with gallstone issues. At 8.6 KPA, you only have to get that down a few points to be in the normal. It is estimated that nearly 50% of the population has fatty liver and some liver damage, thats 1 in 2 of us. Take it as a positive wake up call. You got this

Janden12 profile image
Janden12 in reply toRuggerhead

Thanks ruggerhead I think it was the last fibroscan that worried me more as it was 14kpa which seemed a big increase from 8.6 I’m due my CT scan Tuesday so I’ll give it a couple of weeks and see if I can get an earlier appointment with consultant. Can I ask I’m doing fine with diet but finding it hard when asked out for meal tomorrow supposed to be going Indian for friends birthday and I’m worrying what I can eat only don’t want to do any hard have you any advice please

Onesmallstep1969 profile image
Onesmallstep1969 in reply toJanden12

Indian food? May not be your best choice right now. Be super careful. Here is a recent study showing that fatty liver disease is reaching epidemic levels in India:

"Nonalcoholic fatty liver disease (NAFLD) is emerging as an important cause of liver disease in India. Epidemiological studies suggest prevalence of NAFLD in around 9% to 32% of general population in India with higher prevalence in those with overweight or obesity and those with diabetes or prediabetes."

pubmed.ncbi.nlm.nih.gov/211....

A British study in the Lancet estimates that worldwide the prevalence of fatty liver disease is 25%, so India is doing worse than the world population in general:

he estimated worldwide prevalence of non-alcoholic fatty liver disease (NAFLD) in adults is 25%

The problem I think is how the food is prepared. Too much oil. Many restaurants re-use "ghee" to save money, but the ghee may have a high bacterial count and toxin count.

Janden12 profile image
Janden12 in reply toOnesmallstep1969

Thanks for info regarding Indian food I have decided not to go and stick with my chicken and salad tonight. It’s just hard when your asked out and everyone is able to go and you know you really shouldn’t but that’s a small price to pay for your health

Jennydoesntknow profile image
Jennydoesntknow

Hello! Just wanted to say I've had both a fibroscan and a MRE (MRI Elastography) while I'm not sure if ultrasound Elastography is the same thing, I do know the fibroscan and MRE had VERY different scales even though both used "kpa" to measure stiffness. Fibroscan anything under 6kpa was normal and MRE was anything under 2.5kpa. anyway you can call the MD/his office to clarify or send a message?

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