nafld and fibrosis: Hi I'm new here so... - British Liver Trust
Hi I'm new here so here goes.
I'm a reasonably fit and active 58 year old male who had no health issues other than rash under arm so doc did some routine blood tests which showed high ferritin levels. Follow up results were even higher so sent me for liver biopsy which came back as nafld. He then sent me for a fibroscan which was 11.8kpa. I haven't heard anything since (6 months). Does this sound ok.
Robboref
A FibroScan score of 11.8 kPa puts you in the F3 category (9.5 to 12.5 kPa) which suggests that you have severe fibrosis and if you aren't careful from now on you will wind up with cirrhosis with all of the associated misery that comes with it. If you are overweight you need to lose weight gradually and try and get your body mass index into the normal range (19 to 25). You should abstain from alcohol for the rest of your life and avoid drugs except prescription drugs prescribed by your doctor after he takes into account that you probably have severe fibrosis. You should also exercise regularly and eat a healthy diet.
Ferritin is a non-liver specific marker for inflammation. I've never had a ferritin level in the normal range but the highest mine has been was 535 ug/L with my latest level being 385 ug/L after living clean of painkillers for 11 months and abstaining from alcohol for 2 years and 9 months. I have arthritis and there's always some inflammation present in my body so a slightly raised ferritin level isn't a concern. I'd be worried if my level went above say 600 ug/L and very worried if it was over 1000 ug/L. Anyone that regularly drinks alcohol or takes drugs (prescription or otherwise) that stress the liver is likely to have raised ferritin. It may be worth having a blood test done to check for haemochromatosis in case that's the reason for your raised ferritin because then blood donations would help lower your ferritin level.
The choice is yours as to what you do but if you make light of what your FibroScan score indicates you will likely wind up posting on the forum in a few years’ time about how horrible you feel because you have cirrhosis!
Robboref in reply to
Many thanks for your reply and I'm going to give the doc a ring. My ferritin is just above 3000 ug/l.
janine541 in reply to
Hi ive seen you have comented about the gentle man what is 7.7 kpa
in reply to janine541
7.7 kPa puts you in the F2 category (7 to 9.5) with significant fibrosis but definitely reversible if you do the right thing-abstain from drinking alcohol, avoid drugs other than prescription drugs (and only take those for as short a period as possible), get your weight down if overweight, exercise regularly, eat a healthy diet, keep stress levels down and get regular good quality sleep.
The news is even better if alcohol was the reason for your score of 7.7 kPa as opposed to say fatty liver from being overweight and having metabolic syndrome. A score of 7.7 kPa due to alcohol may still put you at the top of the normal range according to slide 17 in the following link. If that's the case it doesn't mean that you don't need to make healthier lifestyle choices.
slideshare.net/shaffar75/li...
Hi mine is not alcohol related. My consultant said its genetic. Ive started to change my diet completly
High ferritin can indeed be an inflammation related "acute phase reaction", but any time you get an abnormal ferritin lab, an additional test should be done to be certain iron is not actually high. Transferrin Saturation (aka TSAT or simply "iron saturation") is the lab to look to for this. It's a dirt cheap test, so there's no reason not to rule out excess iron.
Ideally you want to see iron saturation in the middle third of the normal range, & not high or even marginal when ferritin is also elevated. Iron has been associated with liver inflammation, & clinical trials have been done (with mixed results) to see if lowering iron might be helpful. Seach: "Outcome of Phlebotomy for Treating Nonalcoholic Fatty Liver Disease: A Systematic Review and Meta-analysis" for more on this.
Iron reduction through blood donation or a referral to hematology for phlebotomy is fairly safe and will rule out the possibility this is contributing to your inflammation.
The "PIVENS trial" showed Vitamin-E to be helpful with NASH, & some doctors are accepting this as a legitimate therapy, with little risk and potential rewards.
As there aren't a lot of effective therapies for NAFLD/NASH, it couldn't hurt to explore the possibilities. Neither of these are miracle cures, but anything that might slow progression of disease is something that should be considered carefully.
Hi Robboref,I had multiple organ failure starting at 12.5 up a on coming out if hospital on a fibroscan ,3 years on it's 20 9 up and cirrhosis as well .its been stable at that for 2years now.i feel dreadful most if the time .very tired and get a lot of infections. The fact you have stage 3 should be an indicator to keep to a good diet and take exercise IFF possible.. it's scary I know as I'm stage 4 with cirrhosis now .I hope your feeling better for knowing your gp should be giving you a proper care package with a specialist which I assume he is/ or will now .make them take care if you an do the correcttests regularly .wishing you well x Mandy
sunnysmile in reply to Mandy1983
Hi, I think the replies on here are so heartwarming. You are obviously finding life harder than you would like, yet you come across with positivity.
There is an abundance of support on here and it does give us newbies some hope at least. It is a scary scenario when first realising what you have got yourself into and feel like life is over but reading these posts does help one comes to terms to get on with it and listen to what is being suggested.
Bless you and bless all you guys. Keep posting.
Mandy1983 in reply to sunnysmile
Thank you very much too so nice of you to say so .we're all in the same boat just with different stories xxx take care were always here to lend an ear x
Robboref in reply to Mandy1983
Thanks Mandy, I did get in touch with doc and am having more blood tests tomorrow. He says he will be in touch when he has the results. I'm really pleased you took the time to reply and wish you well. I will keep you informed.
Mandy1983 in reply to Robboref
Glad your gp is helping you ,I hope they come back as good as can be for you.it can be scary for us all but it's better facing the devil than turning a blind eye isn't it .Hopefully your on the right track getting your gp to help with tests now,at least you will know .,All the best xx
AnnaTT in reply to Mandy1983
Sorry to hear about your suffering Mandy. I had no idea. It's lovely that you give so much support, especially given what you've been through. Not sure how I'd cope so I better not drink again! Big hug and I hope you're doing OK xx
Mandy1983 in reply to AnnaTT
Thank you Anna,it's a good site to be on were all there to chat and help IFF we can .,what the mind can conceive and believe you can Always I'm sure .Best wishes and thank you for your reply xx
I'm sure with your determination your life will settle down and can turn good .we just sometimes need to prioritise our needs and it looks like you've made your mind up .Here if ya ever need a chat xx yes I've been through the mill ,like yourself I try not to allow myself to wallow though lol sometimes I get really down.life can be rubbish when your I'll but I try thinking of all the things I haven't done yet and are on that list of to do stuff.That cheers me up .crossing off goals .maybe you could try aiming for what your like .more clothes ,a holiday break,bowling it's just something simple as a spa for 2 day with a friend .it will all help you take care of you along the way to recovery xx good luck
Your very welcome ,I hope your ok too xxx
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