I have decompensated ARLD (Cirrhosis) with grade 1Varacies and slight mild aceities but all bloods are normal, I feel really healthy, good appetite, normal toilet habits, healthy weight but recently had fibro scan - result 48.2 out of 75 guessing not good ☹️ Any thoughts very confused.
Regards Danny.
Hello Dan, and welcome to this forum, I hope you find plenty of help and support here. The first question I would have to ask you is, Are you still drinking alcohol at all?
If you are no longer drinking alcohol, what are you drinking as an alternative please?
My second question is in relationship to the section on your profile that highlights your interests. Here is shows milk thistle. Are you taking milk thistle?
Have you been referred to a hepatologist or gastroenterologist consultant?
I can elaborate further once we know where you are presently at?
Many thanks
Richard
Stopped all alcohol intake on 10/1/2021-when I found out I was poorly after 5 day stay in hospital. I’m drinking normal fluids I.e water, tea, o.j, milk, juices, smoothies etc & yes started taking milk thistle about 2 weeks ago & I do have a gastro consultant doc. Thanks Danny.
Many thanks for that Danny. Well done on stopping alcohol, it certainly isn't easy. So, good for you.
The British Liver Trust does advise against the taking of milk thistle or any other types of complementary/alternative medicines: britishlivertrust.org.uk/in...
I think it's a natural response to want to try and make the liver better after we’ve caused all that damage. We are all pretty naive at this point, I remember asking my then consultant if I should be taking something to help repair my liver. I knew back then that the liver was a great source of iron, and asked if maybe I should take a course of iron tablets. He went on to tell me that in some cases there can be more iron in a damaged liver than in a healthy one. So, a little knowledge can be a dangerous thing and we could end up doing more harm than good, so please be careful.
Hopefully, this gastro consultant will be advising what they plan to do next. I should imagine they will want to know how badly damaged your liver is, so they have a better idea of what they are dealing with.
It would be unfair to say too much at this point, as you are now in good hands, and these consultants have seen it all before. Although the liver may be damaged, there’s nothing broken that can’t be fixed.
I’ll send you a private message if I may.
Best Wishes
Richard.
Yes a private message will be fine thank you Richard, I presume.
Regards Danny
Hi Dan2434, welcome to the forum! I see that from your reply to one of the forum members that you have stopped drinking - congratulations, it's not easy and that's a huge step forward. I'll attach a few links which you may find useful to read - if it's helpful we also have a nurse led helpline which is open Monday to Friday 10am-3pm 0800 652 7330.
britishlivertrust.org.uk/li...
s4p4i5g5.rocketcdn.me/wp-co...
britishlivertrust.org.uk/in...
Warmest wishes
Trust10
Thank you so much I’ve learnt more from this site in just the last few days than what any so called liver specialist has told me in the last 7 months since my diagnosis of arld (Cirrhosis) These liver specialists seem to have an undertone of that they really don’t give a sh*t, terrible bedside manner!!!!
Many thanks
Danny 👍🤟
Hi Danny, I'm really sorry to hear that has been your experience. Hopefully the other members of the forum shall be able to offer you information and support and we (us nurses!) are here on the helpline if you want to chat. Take care. Trust10
Thank you, I can’t tar all medical professionals with the same brush my G.P has been great and so were the nurses in hospital, just a bad experience with my gastroenterologist.
Thanks Danny.
Hi Dan. I understand where you are coming from with the attitude with some of the medical profession. I was diagnosed with Hep C last year after years of elevated liver LFT’s. I have had treatment for the virus, and have now been given the all clear. Unfortunately I now have cirrhosis, fibroscan 21.5. I contracted the virus from infected blood following a transfusion many years ago however, every time I see or speak to a doctor they mention my drinking, assuming that’s why I have liver disease. Obviously I have now stopped drinking but I find it very frustrating that they just assume I have caused this myself. I probably did drink too much, like a lot of other people, but was not what would be classed a a problem drinker. As professionals they should not judge. They appear to forget that if my GP had tested me for the virus earlier the liver damage could have been prevented. Again, the reason I was not tested was because I drank alcohol and this was, for years, thought to be the cause of my raised LFT’s. Good luck
Thanks for your reply, I’m glad it’s not just me who feels like this, medical professionals should not judge but some do they are human but is still doesn’t make it right. Thanks Danny.
Good luck as well.
I had an awful consultant in the Uk. He was very judgemental, like I had ‘Raging alcoholic who crawls under bushes to drink Whisky’ right across my forehead. I took a friend with me for the 2nd time just to see if I was being too sensitive and she felt the same about him. I didn’t feel he wanted to help. I managed to change consultants and hospitals in the Uk. I am abroad now and my consultant is excellent. It would be worth trying to see if there are any other consultants, even ask to change hospitals, you do have a right to get a second opinion and more advice. Best of luck.
Hello Ruby, I just wanted to agree with you on what you are saying.
I have known several situations on here whereby a person (unbeknown to themselves) have inherited Alpha 1 from their mother and have not known about it.
Because liver disease is known as “The Silent killer” a person like yourself with Hep C, can go through life for many years not knowing anything is wrong. Most of these people do normal things like partying and social drinking, and not know that their liver is being damaged on two fronts. It’s like the liver is having a double whammy of damage.
So in many cases like this, Alpha 1 is the condition, which is being exasperated by alcohol.
Alcohol could be misdiagnosed as being the cause of the damage, however, many doctors would have to take on board a person’s alcohol consumption before making a diagnosis and arriving at the real cause of the liver damage.
Hi Richard. While I understand that alcohol has probably contributed to my liver damage, if I had known I had Hep C I would not have been drinking. For over 10 years of raised LFT’s I was constantly told to cut my drinking down. When I told the doctors that I didn’t consider myself to be a heavy drinker I was told some people can still get liver disease without drinking excessively. My argument is that had I been a non drinker they would have most likely tested me sooner. I was told that I wasn’t tested for Hep C as I wasn’t considered to be “high risk “. As I had a blood transfusion before 1991 it would appear that I was definitely in that high risk group. In my opinion the doctors were defiantly at fault for assuming that it was my lifestyle that was the causing the problem! Thank you for your reply.
Sadly you are so right Ruby, I agree with every word.
Hi Ruby,I sadly have had a similar experience. Blood transfusion during chemo gave me Hep C, later high LFT's, no medical advice whatsoever (just suspicion of over-drinking, questions went right over my head since l was teetotaler at the time), later social drinking and menopausal weight gain were contributing factors that no doubt could've been avoided had l known about the Hep C and the damage it caused. In fact, l knew l had Hep C for 15 years before getting treatment, but didn't know that drinking was dangerous (and so was weight gain!).
I asked my liver specialist just last month, would l have gotten cirrhosis if l had had treatment right away? She pointed out that the drugs available then (interferon and ribivirin) would've made me very sick and probably wouldn't have worked anyway. l had resistant genotype 1a. The oral treatment l (eventually) had was extended from 12 to 16 weeks, with ribivirin added, and l still didn't clear until about week 14! I had forgotten about that, it has been almost 5 years. It seems like longer. l had planned a boozy retirement with margarita in hand, not a sober one taking handfuls of pills daily, but l am still here so that must count for something.
Hi Danny,Welcome to the forum! I'm glad you are feeling well, that's truly more than half the battle with this lousy disease. I am in similar shape, grade 1 varices, flat and never bled, and tiny amount of ascites in my case probably due to abdominal surgery.
I don't post very much any more, seems the tone has gone way too serious for some of us who like to take a more light hearted approach. I miss the silliness, had enough doom and gloom this past year to last a lifetime. Chin up!
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