Cirrhosis: Early last year really red... - British Liver Trust

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Cirrhosis

Steven57uk profile image
23 Replies

Early last year really red itchy legs,heavy drinker.

To cut it short I am petefied and the only thing that helps is the thing that started it in the first place.suffer with bad depression too been on anti depressents for years.doctor has never sent me to see liver specialist because he says my liver function tests are ok.can anyone please help me?I am scared witless only peace in my head I get is with alcohol

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Steven57uk
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23 Replies
Brummi profile image
Brummi

Hi again, the trouble with drinking is the problem is still there when you have finished. Insist to your GP that you want a liver blood test if only for your piece of mind. As for you , you have to want to cut down on your alcohol intake, not easy but possible. Hope you can sort things out..

Millie09 profile image
Millie09

Hi Steven; I can so relate to your situation, first off stopping drinking cab be done it's the staying off it that is a daily thing . I have detoxed myself on many occasions at home but with support from my dr and back then Aquarius. You have to want to really want to stop. Are you alcohol dependant may I ask or habitual maybe binge drinker.

It seems to me like my own doctor did when first diagnosed with cirrhosis 9 years ago and I was still drinking; it was left to me to stop. I went from 7 cans of cider a day down to 2 with help from my own dad god rest his soul. I then developed ascites and was sent to the hospital then where I remained for 6 weeks. I was very poorly and given 6 months to live .

Go back to your doctor ; ask for an alcohol counceller ; and further tests. They have a duty of care and trust me I have had to fight to get things done in the last 9 months. Be strong... you can do this.

peteingloster profile image
peteingloster in reply toMillie09

Hi Steven57uk; Also, insist on an ultrasound, it's similar to the pregnancy scan using gel, my bloods weren't too bad but when scanned they saw that my liver was smaller than normal, that is when they did all relevant tests, ct, cat, echo, lung, too many to remember, now on active TX list, But you must keep on. ALL the very best

Millie09 profile image
Millie09

yes as peteingloster said , just because your liver function test results come back as working ok that is not an indication that all is good .I have great function tests but I'm stage f4 fibrosis with mild hepatic encephalopathy, sleep trouble, itchy skin etc all that comes with cirrhosis at some point.I'm not at all saying that you are at any stage of liver problems but best to have all the tests done to make sure.. Good luck

ayjay64 profile image
ayjay64

hi steve, join the club mate. i had itchy skin too , drove me mental-- all i did was scratch day and might but it never did any good--just bled and got painful--then i started taking anti-histamine pills --it doesn't always work i'm told , but it improved my itching a treat--if ur in the uk get them in lidl only 89p a box there's a red box or a green box i dunno the difference--piriton are well expensive £6-00 for 2 boxes an less pills-- btw i hav cirrossis and kidney probs stage 4-- through drink --stopped a year and a half ago as i only had another month to live apparently-- i swelled up like the michalin man they drained 19 ltrs of fluid from my tum--

BigSpuds profile image
BigSpuds in reply toayjay64

Hiya

I was the same - not everyone gets the itchiness or works well with the antihistamines, but God doesn't it do your nut in? The worst of it was I was also on opiates for the pain I had with a long running 'untreatable' knee problem - I've got to wait a few years before I can have a knee replacement as they'll do anything not to give you more than one and as I'm so young they're leaving it as long as I can take it because of the expense! But the 'opiate itch' added to the bile made scratch morning til night.

Anyway I was really lucky as the drug 'atarax' which is mainly the antihistamine hydroxyzine worked great for me thank God - as after all the itching comes from an allergic reaction to the bile produced by the liver ( worse with cirrhosis ( I have Primary Biliary Cirrhosis) and it's also a mild anti anxiety sedative which sounds like it may help with how you're feeling. You can only get it on prescription so it means gritting your teeth and forcing the issue with your doc for further liver tests. I agree that a lot of liver function tests can't be relied upon to give a thorough explanation or reading as to what's going on so get on the case. I'm not going to bother with the 'stop drinking' bit - you know all of that.

Jill

Steven57uk profile image
Steven57uk in reply toBigSpuds

Thanks Jill and all of you who have answered.

in reply toayjay64

My Dr prescribed fexofenadine for my itching which is great . Please take care xxxx

mrsmerlin profile image
mrsmerlin

I agree that you should demand further tests.

However, I also have to say that maybe your being so scared is a wake up call. You might not have any liver disease apart from your liver screaming at you to stop drinking and take care of it.

I was never a drinker but have been around alcoholics for much of my life. Stopping cold turkey rarely, if ever works. That's because alcoholism or dependency on alcohol is a disease. You would never be allowed to stop a strong prescription drug like that. You would be weaned off. So cut back on the drink gradually. You should find it helps with your depression as well - another physical disease as it relates to an imbalance of chemicals in the brain. Brain chemicals - physical.

I wish you well with this journey and hope not to see you join our club because you have a chance to heal or be free of permanent liver damage

Rita

Steven57uk profile image
Steven57uk in reply tomrsmerlin

But I already said I'm scared because of the cirrhosis

AyrshireK profile image
AyrshireK in reply toSteven57uk

Have you actually been diagnosed with cirrhosis? You could be worrying about something that doesn't exist. You could instead have alcohol related hepatitis (liver inflammation) which gives similar symptoms to cirrhosis.

You really do need to push for an ultrasound scan as a minimum to see if you have inflammation in your liver or indeed signs of cirrhosis.

I know you are scared of cirrhosis but if you can deal with your drinking you could potentially slow down or even reverse some liver damage.

mrsmerlin profile image
mrsmerlin in reply toSteven57uk

I realise that you are scared. I was trying to calm you a little if you have no diagnosis - as your post suggests.

If you have a diagnosis then my advice about tests and alcohol still stand. The only way to reduce a fear like this is to have definite answers which are often better than we feared.

I was not belittling your fear or ignoring it and I'm sorry if it came across tgat way.

One thing everybody on here has in common is that fear, either for ourselves or a loved one and it's bloody scary. By educating ourselves and sharing experiences and feelings we begin to crawl back out of that darkness.

Rita x

Steven57uk profile image
Steven57uk in reply tomrsmerlin

Hello Rita and thanks for what you just said.

I don't feel sorry for myself,I'm just scared and don't know which way to turn.im 57 live alone,and no friends that I could risk speaking to

My mom who is 80 and a good woman she's not like an old woman she does all sorts.thing is I don't want to inflict it on her,coz I love her with all my heart.she knows about the cirrhosis and have had no real symptoms.my doctor doesn't seem to want to help.

mrsmerlin profile image
mrsmerlin in reply toSteven57uk

The problem with the written word is how to use inflection and tone without filling up each comment with damned emoji nonsense.

I was not meaning feel sorry for yourself but feel scared and face your own, or a loved one's, mortality. It scares the bejesus out of me at times if I'm totally honest and I'm sure it does many on here.

I hadn't read before my comments that cirrhosis has been found using an ultrasound. I'm assuming this was requested by a specialist and if not kick up a stink till you do see the correct specialist.

No doctor should judge your lifestyle, if they keep giving the same advice but you don't act on it (guilty your honour much to my shame but not drink and/or drugs .. far too rural an area haha) it can piss them off and but none of us are perfect. I can understand when you feel their frustration. Not judgement though, not on here and not with a doctor.

I try not to give details of my health in full to anyone other than my husband and recently my brother. I have other health problems and am used to the cloud of dust as people run to avoid the uncomfortable truth.

Please know we are here for each other on here, I have only once seen any different but that was somebody lying about being a fellow sufferer to belittle us.

Most of all remember the phrase ...

We are not dying from cirrhosis/liver disease, we are living with it.

X

Steven57uk profile image
Steven57uk

I did have an ultrasound last year,saying cirrhosis is there.

AyrshireK profile image
AyrshireK in reply toSteven57uk

If you have a definite diagnosis of cirrhosis then you should be having regular monitoring - as a minimum an ultrasound every 6 months plus 6 monthly bloods. You should really be under the care of a liver specialist - but, because you are still drinking there might be a reluctance in the medical profession to push you forward for specialist treatment.

If it comes to needing a transplant you would need to have proven abstinence for at least a minimum period of 6 months before you'd be considered for assessment and you would have to sign a pledge of lifelong abstinence (& be regularly tested) in order to be considered to receive an organ.

I understand that you are in a tough situation with alcohol dependence, however, you must acknowledge that you have an issue here and your liver is only going to get more and more damaged and you could eventually suffer liver failure as you continue to 'assault' it with the booze.

Booze is also a massive depressant drug - as a result you are taking a prescribe anti-depressant drug to try and help with your depression illness but taking a depressant drug at the same time which is counteracting your treatment.

There is only one person who can tackle this situation and it's yourself. There are organisations out their who can help with your alcohol issues but you do need to take the first step. It's no good being terrified of cirrhosis if you've already got it you need to prolong your liver as long as you can and that means addressing your alcohol issues.

Katie

Steven57uk profile image
Steven57uk in reply toAyrshireK

Thank you Katie for what you've said.

I have been to Aa too.but with all the issues in my head I couldn't follow their program as well.its a horrible situation.i do have faith in God too,but even that doesn't seem to be enough.

I still love to go to pub and be 'normal' and I do, while I'm drinking.then all the liver worry comes back.kind regards steve

annaserena profile image
annaserena in reply toSteven57uk

You could ask to see a different doctor and say you really want help to stop drinking - and are ready to accept help - and ask what support is available in your area? Also maybe some counselling for the anxiety.

There's reasons why we drink and suppressing feelings is often one of them - so counselling might be good?

Wanting to be 'normal' is what we all want, and soft drink options in pubs aren't great I know. But your health is so important.

Keep looking until you find the help you need x

Faithfull profile image
Faithfull

Please get gp to send you for full blood count and also important liver blood test the more I was told about drink more I was drinking but after fooling myself yr in yr out dreading if I had to go hospital as I had no water only vodka I drank during night ,also could not leave house without disguised drink I was a nightmare but after one illness serious one I became worste sticking morning noon and night I still drunk as I was under the spell of I cannot do it I have addictive personality I never wanted to stop but became worse and blood test was bad so bad straight in hospital I have not drunk 2and half years and wish to God that I new what alcohol does the fear is getting to gp and the wait but belive me your worrying about itching it could be nothing but worry will make it worse ,I have the worste case of ADHD at 53 yrs old so mind works overtime put you mind at ease and then you can move on the fear all of it I no all on here no and we are all here for you.

Steven57uk profile image
Steven57uk in reply toFaithfull

thanks for that and its sound advice.im still drinking coz its my lifei am scared of even thinking of the future.and some say live each day at a time,and thats sound.but i am so scared of 'the cold light of day' i suppose.

is it silly to say that i just want to feel 'normal'?

Faithfull profile image
Faithfull

I feel exactly same I am up in night bed in day and apart from the liver grief upon 4 kids that don't give a ,,,,,,,!and one that there for me there all adults by the way.you ain't silly one day at a time it's getting over the next hour I am told I'm a hyperconderact as I have to many different serious things wrong with me I'm scared to look in the mirror in case I've turned yellow ii cheek me hands I'm scared to live this life as I'm so lonely you are brave to join this as it took me 3hours to pluck up courage now I'm writing novels on here ADHD as you can see I can't spell but belive me when I get a reply I cry and cry as someone feels the same or the help I'm getting on here is overwhelming so I'm begging u have the test when you feel able to make that step as the not knowing is hell for everyone .all the best to you

Steven57uk profile image
Steven57uk

Thanks for the kind words,and i really feel for you.

the thing i cant understand,is why last year ultrasound showed cirrhosis,and blood tests were sky high!my ggt level was 500,and all other bloods were way out too.got tested a couple of times after that and they showed near as.trouble is i am drinking again because i cant handle the ifs buts and maybes!!if that makes sense.trouble is no one has sad me down and told me anything much at all,and anything they have said is without any urgency at all.what do i do just carry on and die before they sit up and help me?

Steven57uk profile image
Steven57uk

near as normal i meant to say

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