Hi, where to start? I'm a 39 year old female with a history of alcohol dependency since my early 20s.
Three months ago I had an episode of jaundice & stopped drinking. Since then I've developed other symptoms, including clonic jerks/muscle twitches, especially at night but now during the day too.
My bloods came back within normal range, but my AST was more than double ALT and my platelets were only 2 points above the lower limit. My albumin was near the upper limit, I think 49.
An ultrasound came back clear but didn't seem very thorough. I'm going to go to my GP to request a fibroscan.
I think I am going to be diagnosed with advanced cirrhosis with hepatic encephalopathy & am struggling to cope. Does anyone have any tips on getting through the next few days?
Thanks,
Helen
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nerd1
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Hi Helen, sorry to hear about your issues. You are doing the correct thing in seeking further tests in light of your issues. Fibroscan would be a good one to see if indeed you have any degree of fibrosis.
One thing that strikes me is you mention these symptoms which have gotten worse after you stopped drinking. How did you manage your withdrawal? Did you have medical guidance with it or just stop? Cold turkey is an extremely dangerous way to stop if you have a history of heavy alcohol intake. If you didn't do a managed de-tox it's possible some of your symptoms are due to alcohol withdrawal & you perhaps need support with this.
I have no experience with alcohol withdrawal so I couldn't confirm this one way or another but perhaps that could be the source of your jerks and twitches rather than advanced cirrhosis which in most cases would be seen on ultrasound and HE which results from increased levels of ammonia in your blood stream and should have been i'd in blood tests.
Hi Katie, I had been cutting down for a few weeks and then did just stop cold turkey.
At first I thought it could be withdrawals too, but it's been three months now so seems unlikely. I've also had some hair loss, have a yellow coated tongue, an abnormal period a month ago and some small spider veins on my face.
I'm so, so scared & ashamed. Thanks for your reply.
Don't be ashamed, you've acknowledged the problem and are taking steps in the right direction to improve your health. No one here is judgemental about alcohol related liver issues we just support each other. There are reasons why people fall into a pattern of alcohol usage and that is very individual to each person. The fact is you've taken one of the biggest steps possible by acknowledging the problem and now seeking help for the issues you've potentially been left with.
Get further tests, be honest with medical professions at all times even if that can be embarrassing or upsetting. They need to know these things to get you the best possible care and you should be supported every step of the way.
As far as getting through the next few days, focus on your mental wellbeing and relaxation, if you can, with whatever works for you. Getting evaluated for liver disease (to confirm or rule out) can be a long process--weeks or months. And it can be very stressful either way.
No one here can diagnose you, but I'm not sure you mentioned many clear symptoms of liver disease, or HE for that matter. HE often comes with many symptoms besides muscle twitches, as does a failing liver.
That said, everyone experiences liver disease (if that's what you have) differently. Keep getting tests/evals until your doctors can tell you why you feel ill if you in fact do--you know your body better than anyone and are in the best position to know if something is off. Allow for the possibility that it's not your liver--many things can make you feel ill. Your docs may order a neurological evaluation to show if you have nerve/brain issues that are causing some of your issues.
And keep checking back in here. There are many people here who have been through every aspect of liver disease and who will likely be very helpful whatever you find out.
Hi Nerd. Just in case you aren't already aware, alcohol does not cure anxiety, it causes it and constant use just keeps fueling it. Alcohol also causes paranoia and depression. So basically it's a pointless dangerous drug... messing with your mind and destroying your organs. However, your GP would have been able to tell in an instant if you were suffering from HE and in my husband's case, taken straight to hospital for a safe and medically assisted detox and ongoing repeat prescriptions for lactulose and many other meds for all the other horrible symptoms of cirrhosis. So dont be ashamed, just build a good relationship with your GP to get plenty of support to help you give up drinking for good so it doesn't get out of control.
So look after yourself, with a healthy diet, fresh air and exercise also drink plenty of water each day.
Hi Laura, yes I realise now that alcohol does not help with anxiety - several decades too late!
With HE, I understand that there are degrees of it, so if it was only moderate it might not be apparent to a doctor? I am very concerned that the jerking is a form of asterixis..
I have tried lactulose for the past few days but so far it doesn't seem to have helped.
You are brave for not letting yourself slip into denial. Keep moving forward!
HE symptoms are... confusion, slurred speech, clumsiness, trips and falls, hallucinations and you aren't even aware you are going through it. My husband was convinced the extractor fan was playing music, monkies swinging through the trees and the firing squad were at the foot of his bed when he was in hospital. Lactulose removes the toxins from your blood through your pee and poo very quickly and you have to take it daily and indefinately. Don't attempt to diagnose yourself through googling. Wait for a medical diagnosis.
Good luck
Hi Helen,
If you are in the UK and would like a supportive chat, our nurse helpline is open Mon to Fri 10am to 3pm on 0800 652 7330
Sorry to hear you are suffering, totally understand what you are going through, I have been alcohol dependent for about 30 years, don't be despondent you are still young. The aches and pains and itching are unbearable at times. Unfortunately resolved back to the alcohol. Now find myself in a very difficult situation. Remember it's a disease and no one would choose to be this way. Good luck with your doctors appointment x
Sorry wilmawemyss, I didn't realise you were saying you had relapsed...
I found stopping tough at first because for some reason it seemed to make my symptoms worse - I developed ruq pain and started aching all over! It's just a matter of pushing through & ultimately life is much better without the booze - I'm mentally better (despite the health worries), have lost some weight & am not wasting money on booze.
I know you can do it - just start again and take it a day at a time. nerd x
Thanks wilmawemyss, sorry to hear about your diagnosis & congrats on your sobriety.
Unfortunately it's looking like I might have autoimmune problems on top of the previous drinking, so it's a good job I've finally managed to stop. I just hope I've managed to avoid serious damage..
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