After going to hospital yesterday and telling them I thought my liver was decompensated and telling them how I was feeling, and for them to tell me all my bloods are fine and examining me and telling me there's nothing for them to treat. Just don't know where to go from here feeling worse everyday.
Can my bloods be fine and my liver be decompensated?
No, if your bloods are fine and docs can find nothing wrong then you can't have decompensated liver disease. The BLT definition of decompensated says "People with decompensated liver disease or cirrhosis often have serious symptoms and complications such as portal hypertension, bleeding varices, ascites and encephalopathy."
From the symptoms you list your issue lies elsewhere.
Katie
Thanks for your advice
You put a post on earlier in support of Danubian who seems to have the same issues as yourself, you seemed to accept that Danubian didn't have liver disease but more a health anxiety related issue and yet not seeing that you were doing the same thing. You have several medics now telling you that you don't have liver disease but sadly you still seem to be trying to convince yourself you have end stage liver disease. You definitely don't have decompensated cirrhosis - it would be immediately obvious to doctors, blood tests would be deranged and you'd have very obvious symptoms.
It very much sounds like you've been looking up symptoms and trying to convince yourself you have them. You describe having Terry's Nails but saying the lunula is still present - therefore, this is not Terry's Nails since Terry's nails is a physical condition in which a person's fingernails or toenails appear white with a characteristic "ground glass" appearance without any lunula.
Whilst you might have some sort of issue going on it isn't end stage liver disease.
Katie
I was under the impression that danubian had it confirmed by tests scans that he didn't have liver disease. In my case its different as I've only had blood tests and ultrasound & obviously this is not a confirmation and I'm awaiting seeing a specialist.
Thanks for the advice.
Did you say you had ultrasound? Well I had this at one gastrodoctor in March and she told me my liver was fine and didn't even have fat and that I did not need and MRT or CT. I went ahead anyway with MRT towards the end of March and everything was OK ! So I reckon you are fine. PS. I wish that clever Phoenix dude could also reassure me after my 23 days stupidly drinking - but if anyone could have seen me they would certainly have thought I could do with putting on weight. I was basicaly killing myself with anxiety with no appetite. The beer helped with my appetite but made my liver anxiety worse - never again.
Nope. Your not decompensated. If you ask around the forum to those who have been decompensated they will tell you what thats really like. Your one of a few members on this site that seem to be convinced no matter what any medical professional tells you that you have decompensated cirrhosis. Id suggest accepting thst isn't true and start looking to solve this by finding out what your symptoms ARE being caused by whether that is physical, mental or both. Again your not decompensated and from what it seems the doctors are telling you, you dont have liver disease at all. Be happy about that. I sure would be.
Thanks. I'm sorry if it sounds like I'm been overly dramatic and I know there's people on this site going through or been through worse.
Just struggling at the moment.
Talk to your GP about anxiety, that is your illness. I was decompensated, you are not. Please try and relax and walk the dog. That is an activity that I resumed after my transplant. Enjoy the rest of the day and make the appointment tomorrow. ☀️
Thanks I will.
Not at all. Anxiety is a very real and very powerful thing. I ended up with liver disease from drowning my anxiety with booze. The panic disorder was so severe that I wasnt able to go out of the house or let alone function at work. The only way I could not feel its effects was when I numbed it with alcohol. Which worked until it almost killed me. Literally. I ended up in the hospital very very sick.
Im not saying all your symptoms are anxiety related. I cant say they are or not. But decompensated cirrhosis is very specific in how it presents. Its basically the liver slowly failing and shutting down. The only members we have that are decompensated and getting on "well" are on medications and have their ongoing struggles with it everyday. There symptoms and the struggles they face are very real and challenging.
So many symptoms that mimic liver disease can be caused by a myriad of other things. The only true to fact symptoms seen in almost every single case of decompensated cirrhosis are the symptoms you are not claiming to have. Again the mind is a powerful thing. Last year I had a hemotologist test me for myleoproliferative disease (cancer). Because my spleen is massive and MPNs are the most common cause of massive splenomegaly. For the month I waited for the results I started to develop every single symptom of a myeloproliferative disorder. Luckily I already knew that my anxiety was causing it because I know myself and can after so many years "appreciate" what intense anxiety and over thinking can present as physically. I knew I didnt have those symptoms before I researched them and while my body wouldnt let up on presenting them as physical manifestations, I knew they were simply that, manifestations. As a testament to that truth, as I suspected would happen, once the tests came back negative, the symptoms disappeared.
Noone here is shutting you down including myself. But as people who do genuinely care to help others we know that laying down the truth when you cant see it is sometimes neccesary in the quest to help you. Quality of life is the key. We want you to get help to solve this.. whatever this is. But the best steps you can make to help yourself is by deducing the facts logically and medically. Ok so its not liver disease. Awesome! Now check that off the list and keep chugging forward. Figuring out along the way what symptoms are real and which are being presented or amplified by the mind. Dont let one half of your mind fool the other half. The fight within oneself is the hardest. But with the right tools any job can be completed.
This is so true. While worrying for months about having PBC I developed a whole body itch which is a bad symptom of the disease. I was finally tested by paying privately for it. It was negative and the itch magically disappeared.
Phoenix- it is amazing what anxiety can do to the gastrointestinal system. The brain-gut connection. Gut/stomach is the second brain with more nerve endings. And to mine, it gave me debilitating nausea, weight loss, belly pain -- and when you google symtoms- oh no. But despite having a healthy liver I am really really ashamed about my 23 day drinking of 2 x 0.5 litre 5% cans of beer after clear diagnosis I would have been even more stupid had I not had anxiety over my liver. I know you can understand me, since I belive you know what anxiety can do! Best wishes
It’s all about the limbic system, you need to address the imbalance. Take care of yourself and the alcohol will only disrupt your mood. Exercise is great.
Yes as I stated just in a previous messege anxiety is very powerful. The guts are most commonly affected. They used to call it "nervous stomach" when I was growing up. That was clearly a very weak term to use to describe it. We know better now.
23 days of drinking isnt going to cause any body liver disease ever. The only thing it serves to prove is that you should recognize you are likely susceptible to dependancy. A great thing to learn now rather than later!
In the last 2 years I drank I was putting back 18 beers and about 10 shots of whiskey daily. That wasnt including the extra on the weekends. I was on a fast train to destruction and though I never intended to get to that place. I was stuck. Ending up in the hospital was the scariest shit that ever happened to me. Not because I was afraid to die, because honestly at that point i was ready and willing to but, because my kids almost lost their Dad. The guy whos responsibility was and is to raise them and keep them safe. The idea that blew my mind opened was that these kids are going to grow up without a dad and the only thing they can ever say to anyone is "i never knew my dad .. he died when I was really little from alcohol". Nope that wasnt going to happen. Unfortunately the liver disease did end up being cirrhosis and tho I still remain quite compensated, the presenting signs that were found on ultrasound were as plain as day that it was cirrhosis.
Thanks Pheonix - I pray you can continue being a good father for some time.
This place is wonderful with all you people out there. Thanks - I live alone and feel so alone, today I didn't! I was not alone with my worries. Yesterday I felt realy bad so I wrote my message here, and today - your all fantastic!
Thank you so much for the reassurance! Yeah "nervous stomach" was a very weak term. Due to not eating I was malnourished and had sores at the back of my throat. ENT doc asked me straight away if I had gastrointestnal problems. It was scary losing weight and still having no appetite. Not sleeping due to nausea. In a way it is good that I develped this anxiety - since it led me to more awareness of the liver - and I certainly drank more than average! I'll have to check myself into some anxiety clinic. But, as the good book says "sufficient are the worries of today" and I will go to bed feeling better than yesterday thansk to you all
Im glad to hear your able to recognize this all and take it all in. Sometimes some of the physical ailments that are apart of anxiety are cause by the things we don't do because of it. Like eat properly and exercise. Being alone with ones thoughts was always and is always a struggle for me. If I keep busy and keep myself with tasks and hobbies I find it really does help. For example this weekend im renovating the bathroom and thoughts of ill health and worry have been replaced with precise measurements, paint chip choices, and tile leveling. Also renovations are something that are in the " create" category as opposed to the " destruct " category. Leaves you feeling accomplished and optimistic at the end of the day.
Anxiety is all about learning how to change mental behaviours to rebuild the neuroplastic channels in the brain. The same way we can have a traumatic event train our minds to feel fear when placed in or near that scenario. The opposite training is also possible.
That is so true Phoenix. I have just spent the last 2 days gardening and cleaning up my Koi pond, and although now feeling knackered, I also feel very positive.
David
Phoenix - what an apt name for you - you rose from the ashes of alcohol - stronger than ever! And thanks for that reassurance "23 days of drinking isnt going to cause any body liver disease ever". AyrshireK was also a big help. My anxiety has gone down again (although still there) and I can sleep. Hahah I've got two reasons not to drink - firstly physical and secondly mental! Appropo mental - my brother say I'm "radio". Didn't know what it meant - "radio rental" = "mental" - cockney rhyming slang. I shouldn't laugh about my own problems - but hey better than crying! Cheers once again Phoenix - and no in UK it also means thanks not just when fools drink!
Anytime my friend Im glad I could be of help to you. AyrshireK is a great source or advice and counsel as well. Her and I seem to share quite similiar opinions and strategies for advice. So again on behalf of us both you are very welcome. Get out today and get your mind on to other things. You may always have anxiety. But you can learn to better control it and live with it and not let it control you. Best wishes! 🙂
Thanks - I went running for about 10 kilometres yesterday along the canal which links the Baltic Sea to the river Elbe (which flows through Hamburg). Today I was tired so stayed indoors! Well I developed this anxiety end of last year - I hope do not always have this - and I hope it is just a health anxiety problem not a general anxiety disorder (allgemeine Angststörung) because I'm sort of just existing - but at least now I know that it is in my head it is better than the first three months of this year - that was absolutely terrible and terrifying! That is why yours and AyrshireK's words these last days were extremely valuable - if I hadn't found this site I would be a nervous wreck!. Funnily, yesterday a man was walking his dog along the canal and was wearing a T-shirt with the words "its all in your head".
Powerful and inspirational stuff, Phoenix. To come back from that level of alcohol consumption is incredible.
Thank you. I literally got out of that hospital and never looked back. It had to stay in the past. Im surprised im still here to be honest but, its amazing what humans can bounce back from sometimes.
Phoenix, you are an inspiration to everyone. I have Nash caused by meds from drs. I do think you are all amazing on here. Take care Lynne
Hello all. Only just joined this site and am so glad to have found you all after reading the inspirational messages. I used alcohol with a vengeance to help cope with my moms death 8 years ago. Over time, the odd one more became a regular thing and the only way to cope was in the bottom of a bottle of gin. A bottle would last me a couple of days at most, and I would even start in the mornings. I became one of the “functioning alcoholics” with nobody knowing just how much I had. All came to a head when I fell down the stairs and ended up unconscious and in hospital for a week, detoxing. That was November 2017. I haven’t had a drink since but no surprise that I have cirrhosis and have just been diagnosed with PBC too. Haven’t been able to pluck up the courage to tell my grown up children the full extent of my illness which I’ve managed to hide so far. Nobody will give me an idea of how bad it is only that I am not decompensated at the moment. How long will that last, how long have I got, what happens when it gets worse? I have so many questions I don’t know where to start. There doesn’t seem to be any professionals who will talk to me face to face. Suggestions for a starting point would be appreciated. Do I deal with the cirrhosis questions first, then Worry about the PBC?
Hi Deborah. Write down the questions you want answers to and see your GP. If you let them know you want to know the extent of your illness they will be much more forthgiving with the info.
Take care
Laura
Thank you Laura. All of this has come as a massive shock and I’ve been to all appointments on my own so it gets a bit overwhelming. I think I’ll concentrate on the questions about my liver and levels then go onto the PBC. See thehepatologist in a month
Thanks x
Great. Take someone with you too if you can. 2 pairs of ears is better than 1. Good luck x
Im so glad you saw the light for your kids. My daughter, now almost 20, recently said exactly that.... " I can't remember anything of my Dad before he was ill! "
So sad. She now has photos of us up until she was about 5 years old altogether on fabulous holidays in the sun plastered over her bedroom wall !
Anxiety is a Badass. I’ve had Health Anxiety issues for a long time. When I had any symptoms of anything, I always assumed it was the worst. I’ve been reading Mindfulness books and there is definitely something to them. Dr’s can only give us information on the results of our labs and symptoms. The reality is, we are the only ones that can impact our well being by not being destructive to ourselves. The Mind is probably the most overlooked problem we face. Some are super unlucky with Cancer, Liver Disease, whatever. The rest of us are getting consequences ,and results, of past neglect to our bodies. Thank God for modern medicine and the Health Professionals to keep us going and manage our pain. I think we have mostly been told our whole lives not to do certain things to our bodies but, I didn’t listen. The good news is, It’s not over ,and the most important thing we can do moving forward, is to eat right, stop poisoning ourselves with sugar, and alcohol ,and get some exercise. The Drs. cant do it all for us. Treat the Mind, the rest will follow. God Bless! The people in here are Amazing😍😍😍
Feeling Desperate 
Travelling with Insurance 
Understanding doctors letter
any advice?
