Hi me again. I was just wondering how everyone was first diagnosed did you have really noticeable symptom or none at all. What were the reasons behind your diagnosis. Thankyou.
Diagnosis. : Hi me again. I was just... - British Liver Trust
Diagnosis.
60 Replies
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Feel free to read my first few posts for details. I had a few symptoms but not enough for me to think my liver was in terrible shape. First ones were lack of appetite and extreme fatigue. I ended up going to the ER because my gastro doctor thought I had portal vein thrombosis. That was 3 days. It was there I was diagnosed with alcoholic hepatitis but they didn’t think I had f4. I quit drinking went to the gastro for my double scope and she found a varice. From there was sent to a liver specialist and 7 months later diagnosed.
• in reply topushthrough
Thankyou for reply. I hope your doing well now. May I ask how old you were when diagnosed
pushthrough• in reply to
I was 38 when I was diagnosed.
• in reply topushthrough
So did they pick it up on a blood test that was abnormal at first. I’m so so scared and worried sorry for being such a pain
pushthrough• in reply to
Julie you are not being a pain at all. Ask as many questions as you want. Most people on here are willing to share a lot. I went in for a regular blood test because covid shut things down in 2020 in the states. In 2018 or 2019 my bloods were normal. When I went in early Jan 2021 my bloods showed very high ALT and AST and my doctor knew I drank. She ordered a ultrasound because she expected my liver to just be enlarged. From there I had a MRI and was referred to a gastro. It was the gastro doctor who looked at the scans and told me to leave her office and go to the ER immediately because she suspected portal vein thrombosis. That ended up being portal vein hypertension. Keep in mind she had those scans for 2 weeks and waited until I came in to tell me that.
After the ER my family doctor ordered a blood fibrotest and it showed results consistent with f4. That test was confirmed with the MRI with Elastography and Fibroscan months later. The best thing you could do is see your doctor and tell him/her your concerned about your liver and would like a fibrotest. They will likely ask why you want one. Just be honest with them. The earlier you catch it the better off you will be if you even have anything.
At this point I think the USA should mandate fibrotests as part of yearly blood work. We pay a lot for insurance. There are probably hundreds of thousands of people walking around with liver damage to some extent and have no idea. I know I had no clue but I know Cirrhosis didn't just happen over a few years. I catch myself looking at some people saying I wonder if he/she has a liver disease.
• in reply topushthrough
So when these bloods were high were you seen straightaway has I’m thinking if his first bloods were really high they would of called him in straight away rather then wait surely when you say you drank and I’m not judging we’re you drinking lots sorry if that’s rude you don’t have to answer that if you don’t want to
pushthrough• in reply to
I was drinking far more than I should have been. I couldn't even begin to tell you a number because it varied but it was more than usual. Still not at the level most of my friends drank though which I found odd. Typically I was a beer drinker. But when covid hit I slowly switched to vodka and sprite which is where things started going down hill. When my bloods were high my doctor told me to ease up on drinking and scheduled an ultrasound right away.
After the ultrasound it was nonstop testing. MRIs, CT, Different blood work etc... My family physician did not take it lightly at all. When all of that was done she sent me to a gastro doctor. The gastro doctor sent me right to the ER as soon as I walked in. She said there is no time for me to run all the tests needed to rule out your condition. Take this paperwork and hand it to the ER receptionist. They will be expecting you. I almost didn't go to be honest. My wife made me.
It was during the Delta wave here but I had more blood done there and was quickly taken to a CT machine where they scanned my blood vessels I guess to rule out portal vein thrombosis. Then I stayed 3 days to stabilize my malnutrition and get me through the worst of the withdrawal symptoms. The hospital did not have to do that but they did and I'm extremely thankful they did. All of my bloods were a wreck.
Once I got out I was fine other than anxiety. Speaking of which, do you have an anxiety disorder like me? I'm not judging at all obviously because I have had the disorder for a very long time.
I just looked at your previous posts and it makes me think you might. Going to the dark places immediately is usually a sign. This is coming from a place of compassion for my fellow anxious people.
Anxiety disorders have skyrocketed since Covid. Too bad I had it before covid so I'm use to it! LOL
• in reply topushthrough
Thankyou again for in depth reply. Ido suffer from anxiety badly
pushthrough• in reply to
I assumed so, I'm very sorry to hear that. Many people don't know how to empathize with the disorder. I have to take meds for mine otherwise I'm a wreck and that's after 8 years of psychotherapy. They have great meds for it now if you want to speak with your doc about it. It's helped me a tremendous amount.
I not only have anxiety but also panic disorder. The important thing is this. Nothing can be done until the results come in. When things creep in your head that it could be this or that, say to yourself, my son is alive and well.
Keep repeating that over and over again. You will be surprised what happens when your sub and unconscious mind take hold of that mantra. I still use it to this day even though I'm currently sick obviously. I believe the mind can heal the body and one day you will hear me say you won't believe this, I no longer have Cirrhosis. Then I will post a picture of myself eating a burger. 😂
• in reply topushthrough
You have been Amazing Thankyou xx
Hi JulieBookworm1968, I can see that you are really anxious and waiting for results is really difficult. As other forum members have mentioned, liver enzymes can be raised for lots of different reasons but unfortunately right now all you can do is to wait for his results. Everything else is purely speculative. Take care and let us know how he gets on,Trust10.
• in reply to
Thankyou so much I’m am so anxious and googling like crazy. I can’t sleep either just keep looking for symptoms and asking my son if he’s got them. I know I’m being a pain in here and I’m sorry because everyone on here is actually poorly and I shouldn’t just be consumed with my own thoughts. Thankyou again for the message.
AyrshireK• in reply to
You arn't doing yourself or your son any good with all the googling and fuelling your anxiety.
At the moment he has had one set of out of range bloods with no obvious symptoms. They have repeated them to see if this is just a blip (which is entirely possible for any number of reasons) or is a pattern of elevations. If there is a pattern of elevations they will arrange necessary follow up to see if there is actually anything to be concerned about.
Please try and relax and just await the results.
Katie
• in reply toAyrshireK
Thankyou so much you are so right I’m making myself I’ll and my son anxious. Thankyou for such a kind message x
Zukosmile07• in reply to
Hi Julie.... don't ever say that, people on here don't mind.... When you are poorly and stuck indoors, nothing better than taking your mind off things by having a chat with people who have been/going through the exact same thing. Don't ever apologise for a post..........! It is a waiting game and you do have to wait. Try not to worry and do a jigsaw or solitaire 😃Danny x
• in reply toZukosmile07
Thanks Danny x
pushthrough• in reply to
Julie please stop Googling. That is exactly what freaked me out.
• in reply topushthrough
I’m really trying xx
First and only symptom I had was vomiting up nearly all the blood in my body, apart from that I felt perfectly healthy right up to the day of my transplant.Hilary
• in reply toYellowsydney
Thankyou I hope your well now. Did you have enzymes showing in blood x
No , liver function bloods were always in normal range
• in reply toYellowsydney
Oh god that’s worrying even more. I’m so so scared
For me, liver disease was picked up incidentally. I didnt really have symptoms I recognised at the time. I was being monitored for other things and it was picked up incidentally that I had persistently abnormal liver blood tests. Tests that were well out of range on a number of occasions over a period of time, so not just 1 offs. Indeed, actually liver disease was only confirmed once all the simple common causes were ruled out. So, just remember, just having abnormal liver blood tests doesn't necessarilly mean there is any significant liver disease present.
My first real symptom that I could recognise was tiredness and then fatigue. Other than that, for much of the time there wasn't much else until the later stages of progression. Chronic liver disease can go a long time without manifesting any real noticeable symptoms.
Please also remember that having liver type symptoms or abnormal tests doesn't always mean there is any lasting long term liver damage. Acute infections or reactions to medications can lead to liver type symptoms manifesting. However, once treated, the liver can usually heal itself perfectly well with no lasting damage or long term issue. In the vast majority of times this is what happens. Its human nature to always focus on the worst outcomes. However, for the vast majority those worst case scenarios will never manifest. Look at the simple first, those are far more likely and much less troublesome.
Hi Julie,
I am also new to this group and have been silently reading away in the background.....and it was probably one of your posts and a combination of others that prompted me to call the nurse led helpline is open from 10am to 3pm Monday to Friday on 0800 652 7330.
I was googling like mad and making myself feel more sick / stressed with it. While they are not there to give medical advice I found can share actual facts and advice on what to do next unlike google...
I will still ask on here for others experiences on here, as everyone is different in their journey...like I still have numb / tingling toes, does this go away or is it forever...I forgot to ask this so will post separately. Make a list with every thing you know - you dont have to give personal details - thats up to you. Wishing you all the best and hoping you will call them. xxx
• in reply toRockie153
Hi have you been diagnosed
Rockie I have numb toes still but it does improve the healthier you are. I mean I had a transplant and I could feel the difference as soon as I stood up out of bed the first time. The healthy diet and exercise works well and my consultant said wait until 6 months time.Right I know you haven't had a transplant but I found out getting healthier before then improved my feet. Also summer time works wonders. Move to Florida with pushthrough hahahaha 🤣🤣 then you will be fine. They do get better Rockie but never heal completely, I know from experience.... sorry Danny x
Hi Thank you for your reply. Yes it feels like they have a sock rolled up between my toes and the ball of my foot (both feet). I am guessing that maybe linked to lack of vitamins from drinking and not eating. I am going to post another question and give some history in my own feed. I am loving your posts and banter with Aotea. xx
Hi julie ,for me it was when i had gallstones my enzymes were up plus they found out i had high bloodpressure ,so i had my gallbladder removed 2018 still on blood pressure tablets and i had a fibroscan last year all ok liver bit stiff but nothing to worry about as i was changing the way i ate and cutting more things out and walk everywhere, but went back this year for check up and its got worst so just need to look into it now whats causing it but i have to say everyone on here is fantastic i tend to look here instead of google now lol .
• in reply toNalabanana
Thankuyou so much his first blood test was borderline so I don’t really know what that means
• in reply toNalabanana
Thankyou have you been diagnosed
Nalabanana• in reply to
I have f3 which when the nurse showed me was servere fibrosis that was the result of my last scan, i have an appointment to see a consultant in april so just see what they say ,hope you get him sorted .
• in reply toNalabanana
Thankyou I hope you do well with everything xx
No symptoms. Bled out at home when variciles burst. Bled out next day when they operated to band them. Stage 4, fibrosis, hepatitis, cirrhosis. Never drank alcohol. 1 week in critical care, 10 weeks in hospital. 18 gastroscopies to tie off variciles. Put on insulin as it killed my pancreas. Portal vein thrombosis. Complete change of diet. Liver function tests all OK. 3 years later I am still smiling. I was 54 when this happened.
• in reply toScrags64
Wow wow and well done you for coming through it x
My husband had severe itching and welps
Hi Julie, like others have said please stop Googling as it only portrays the worst events or outcome.
I'll just post this as you can see when you have symptoms of liver failure, not to mention odema In my legs, they were swollen like the elephant man, I hope your worries will be sorted out soon. Take care.
Ashx
Me at my worst!
• in reply to
Hi Hidden thankyou for your message. I can’t believe that’s the same person. How did you turn it around. Well done you. What liver disease have you got I hope I’m reading this right and am looking at the better picture of you. How you doing now
• in reply to
Hi Julie, I've got cirrhosis compensated at the moment thank god 🙏. I've turned it around in the past by getting my ass moving, walking 10k a day, boxing with my bag and then getting a bike so I was very active until October last year and I messed up massively, getting back on the drink.
But I'm currently doing well after another stint in hospital, so fingers crossed I carry on with this same path. I just posted that pic like i have b4 as its possible to turn it all around if you keep trying, if anything I'm a tryer. I have my wobbles and struggles don't we all, I've just not to go back to the poison of alcohol, which will kill me and everyday day I'm sober I beat it for another day 👍. Take care.
Ash x
Zukosmile07• in reply to
I think you just put that in a nutshell for all of us who drank, not everyone is here for that reason but will all are still fighting the same old disease and with the right guidance and support, diet and exercise we can turn this nasty disease around. Superbly written Ash.......Dan
Zukosmile07• in reply to
Just missed out these chuffing sleep patterns..... hahahaha 🤣 x
• in reply to
Hi again Thankyou for being so honest and inspiring it’s amazing you have turned it around. May I ask were you drinking everyday. Not judging at all. It’s just an inspiring journey x
Hi Julie,
For me it was when my 'hernia' got worse, so I went to see my doc and she said she'd refer me for a scan. The gastro doc said she'd send me for a fibroscan and after that I got a letter saying I had fibrosis.
It was all a comedy of errors really and glad it hadn't got worse. About ten years ago I was sent for a scan (can't even remember why now) and I remember the nurse saying I had fatty liver - I remember this now, as then she said I had a gallbladder fit to burst and after that the liver got forgotten. I kind of thought 'well of course my liver is fat, the rest of me is' - never even thought of googling it! Roll on a few years and I was having problems with a pain I was getting just below my breast on the right side. It happened every time I strained my muscles, but the doc said it was just a hernia and to come back if it really impacted my life. Roll on another few years and I went back - though now to my new doc (I moved) and she thankfully referred me to that gastro doc.
Sorry, went on a bit there. What I will finish with is this, google will tell you you're dying - my Daughter has a thousand times, every time she gets a pain she googles, she 'had' a brain tumour last month!!! Take the middle diagnosis and you'll probably be about right. (though, not if you actually do have a brain tumour)
Take care, hope it all goes well for you and yours x
• in reply to
Thankyou Hidden for such an amazing and uplifting message you are truly right about Google as so many people on here have told me and I know your all right about that it’s just my overwhelming anxiety that puts me on that path. I’m truly grateful for yourself and all the others on here for such kind messages and also there uplifting journey they have been on. Xx
• in reply to
Doctors really don't help on that score - they tell what you've got then send on your way. At best you'll get a pamphlet - or you would have but they've run out! You're desperate to know more and you have google at your fingertips.Then you go back to the doctor and he tells you off for using google!!!! (true story)
I think most of us on here are happy to comment, even if it doesn't help the problem it does help in a way as there's someone there who'll listen.
All the best Julie xx
• in reply to
Thankyou I really appreciate your kind message it means a lot. Xxx
• in reply to
We all need to look after each other xx
• in reply to
Your so right. Your very kind. Not all people are like that though unfortunately xx
• in reply to
That's very true - if they were we would be a world at peace with no hate crimes and no racism and no bullying..............aaah, we can dream xx
• in reply to
We certainly can dream. Would be lovely wouldn’t it xx
• in reply to
I think we should bundle up all the trouble-makers and send them off to an island all on their own so the only people they can hurt are other trouble-makers, and just leave them to it, no rules, no internet, bye bye and forget about them, lol xx
• in reply to
Oh Hidden im with you on that one. I feel there are some very bitter people around. Why I don’t know. Doesn’t take anything be kind xx
• in reply to
Hi Jacky did you ever have elevated blood liver. This is what’s making me so scared xx
• in reply to
I had a blood test after being referred to the gastroenterologist which showed my enzymes weren't right.
• in reply to
Thanks jacky. I know I’m a pain x
• in reply to
NO, we've all been there at the start of this journey, doctors don't seem to tell you anything or give you a number to call when you need an answer. Incidentally, BLT does have a helpline run by nurses if you have any questions. Failing that if the rest of us lot on here can help we will.
• in reply to
Hi jacky Thankyou I’m hoping it’s nothing seeing as it says routine telephone appointment but the more I listen on hear I seem to think it is something because people say it’s normal to wait 2 weeks xx
Ubwa• in reply to
There is a saying in the medical world I think you should subscribe too:
"hear hooves think horses not zebras"
You are more than likely is a worse state through your constant anxiety than your son is in with some borderline results. You won't help him by having a heart attack 
• in reply toUbwa
Thankyou that is a very good saying. I have to say though I don’t Google and then tell my son
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