Hello all. I've recently quit drinking as of 4 months ago (4 year history of very heavy drinking, around 50-80 standard drinks a week, around 10 every afternoon.) I'm 29 years old. I've no plan to drink any more of this poison, massive regret with what I've done over the past 4 years.
I've been through a whole slew of tests (ultrasound/CT/fibroscan/gastroscopy/conolonscopy) but nothing definitive has turned up. Only thing that's shown up is nodularity and atrophy of my left liver lobe, and some mildly coarse echotexture on the ultrasound. The nodularity was of the left liver lobe only, so they think it's developmental.
I quit drinking after my first feeling of soreness in my liver, and unfortunately I did it without a proper detox, but I made it through that. Ever since, however, I've been having a constant dry mouth and a complete loss of the hunger sensation. I can still eat... but I simply don't feel the sensation at all, which has made it hard. I also have gynecomastia, not severe, but very noticeable when I'm lying down. It's frustrating since I'm at a healthy BMI for my age. Pretty tired too. I sleep very little and when I wake up, I feel like I've been hit by a bus, but this gradually fades over the course of the day. It's not a complete dry mouth, just like I only have 1/4 the saliva I normally had. I drink so much water but it doesn't seem to do anything about it. Had no issues with dry mouth (that I noticed) or appetite prior to quitting.
My fibroscan was around 4.4kPA, so my hepatologist doesn't think it's a liver issue, plus I don't have varices at all. Going to see the cardiologist for some chest tightness (echocardiogram) soon to rule out heart issues, it's all quite confusing as nothing at all seems to be conclusive. I feel like I'm a pincushion with the amount of blood testing and I might as well be radioactive by now due to all the scans, hahaha...
I tried to go for a run yesterday, to start on being a little more proactive with my recovery, but I couldn't make it more than 5 minutes before I had to sit down. My primary doctor initially thought I was just anxious, but the dry mouth didn't go away at all over these few months.
All my blood tests are normal except for bilirubin (but I got a positive test for Gilbert's Syndrome. When I was drinking, I did have quite raised ALT/AST/GGT, and in the past I had raised bilirubin as well, but not all of the time.
I'm just posting to sort of try and relate with someone about how I'm feeling, it's been very difficult to find a place I can talk to people about my problems. A little worried they won't find out what's causing my current symptoms. I'd at least like an answer I can work with, I guess. It's been very frustrating. Fibroscans are considered very accurate, so if not a liver issue, really questioning what could possibly be wrong...
Hi, you wrote you have Gilbert's Syndrome. Please rember to eat regulary not to stay long hungry. Doing that you prevent from bilirubin increase which might cause some mildy symptoms (but not for all with GS). But generally Gilbert's Syndrome should not cause much problem so you are doing ok looking for the reason somewhere else.
But 4 months of stopping drinking it is not a long time maybe you should give you to yourself some time to recovery?
Yeah, I received the UGT1A1 genetic test, so very likely Gilberts. Never had any noticeable symptoms from it prior, so likely not related to it, but it was good to rule out the raised bilirubin.
Yeah, it's not a lot of time. It is possible given more time, things will clear up a bit and a lot of what I'm feeling will fade (sleep especially, I'm certain) but there are a few things that have me worried short term. I know the liver can heal quite a bit, even if scarred, so I'm not terribly worried I'm going to like... drop dead or anything. I just want more definite answers, I guess. I'd like some more certainty for the future.
Hi Wandered
Radioactive lol, well it is nice that you still have a good sense of humour
My dry mouth is more noticeable sometimes when I eat and the lack of saliva makes it a struggle to swallow food. I'm pretty sure that mine is related to my type 2 diabetes which is related to my liver problem.
My dry mouth started years before my diabetes was diagnosed but it is possible that we can have diabetes for years before a diagnosis can be made. This might not be your problem, I'm just relating to the issue, and to mention I find smoothies (vegetables and fruit mixes) to be the perfect meal as it fills me up for a long time and helps my dry mouth.
I also make sure I eat some protein each day, usually chicken (I think I'm growing feathers ) and that way I feel like I am doing what my body needs, even if I do not feel hungry.
I have noticed a few things, like milk, make my dry mouth worse. I should really keep a log so I know and can minimise or remove them totally from my diet. It might be worth doing the same so you can see if anything exacerbates your dry mouth.
Seeing the huge quantity of alcohol you have consumed in such a relatively short time, you have done amazingly well to have stopped drinking totally, well done mate.
Dave
• in reply to
Thank you, quitting was tough but I think fear is a pretty strong motivator, haha. I love the feeling of alcohol, but I'd not trade my life for it. It's a shame the liver doesn't complain earlier, I'd have realised sooner. I'm trying to keep a level head and some humor about it, my current condition isn't as bad as what I've read some people have, so I have to think positively.
I'll have to go get tested for diabetes, I've not eaten particularly healthy over the course of my life so far. Eating is pretty difficult, food doesn't taste bad, but it's rough going when you're not feeling hungry. I'll have to give smoothies a try, sounds simple enough to put together. I've been taking some protein shakes, and I really want to get into some heavy cardio and fitness to make myself feel better.
First of all great job on what you've achieved so far. I'm sure it wasn't easy, so a big pat on the back to you.
There is clearly some damage to your liver, but with what you are currently doing you are doing everything you can to stop that getting worse, so again, well done.
Unfortunately, I dont really have an answer to the dry mouth issue but with the fatigue you may just be craving a bit of sugar. Alcohol after all is quite calorific. That's not to say you need to eat lots of chocolate, but some additional carbohydrate at intervals during the day and before you go to bed may help. A biscuit, some toast, even a bit of cake, lol. Jaffa cakes and mini chedders are pretty good options.
May also be worth speaking to your gp about this if you haven't done so already. I'm sure they can tailor something more specific to your circumstances, or at least refer you to someone who can. Hopefully that will provide some help with the tiredness and fatigue. Both are pretty common with liver damage.
From and exercise point of view, do keep trying. You will get fitter, but may be start with more walking instead of running. You'll still get tired but you'll be able to sustain that longer. Or, try the couch to 5k programme and just extend the time period for each step so its something you can manage.
With the dry mouth, that may be something that passes with time. You are still quite early on after stopping drinking so your body may still be adjusting. I cant speak from an alcohol perspective I'm afraid, so that is a bit of a theory. Maybe ask your gp to check you for diabetes too. Its probably not that, but there's no harm checking to rule it out. Having too much sugar in your blood can lead to being thirsty too. So given the advice I set out above, getting your blood sugar checked is probably sensible anyway, just to be on the safe side.
I'll give the running programme a try, thanks for suggesting it. It's still early days, so hopefully there's a lot of improvement to be had if I play my cards right.
I've actually lost a lot of weight because I'm not used to anything but my former ravenous hunger, so you're probably right when it comes to the carbs. Alcohol was certainly like drinking rocket fuel as far as calories go! I'll try to work on preparing some more meals/snacks so I don't forget. I appreciate all the advice I can get, it's been difficult to figure things out.
Keep drinking the water, keep on going, you are doing great, sadly you will expierence horrible after effects due to the alcohol, may take a while to pass, but trust me it will.Do you take any vitamins?
One thing I would suggest is that you take good care of your oral hygiene because I have learnt to my cost that having a dry mouth (in my case due to Sjogren's Syndrome) can reek havoc on your teeth and I have lost a fair few over the years.
Wishing you well and I hope you find the answers to the many health questions that you have.
I didn't think about it too much, but you're right. I'll go pick some mouthwash and remember to keep that on track. Guess I'll have to be more careful from now on, I've always been pretty lazy when it comes to flossing/brushing.
Thanks for your well wishes and advice, lots to consider.
I have the dry mouth too. They did a biopsy on me which showed Nodular Regenerative Hyperplasia how did they determine u had nodules?I also constantly have a raised bilirubin what is yours usually mine is always above normal range. Mine is linked to the liver though.
I also have a load of other symptoms...weightloss, pain, joint aches, feeling tired and sluggish....
My CT scan/ultrasound shows that my left liver is nodular and atrophic. I do have a raised bilirubin, could be gilbert's disease or something else. I have all the symptoms you describe there. I'm going to probably ask for a liver biopsy on my next appointment to the specialist, perhaps they'll find something similar.
Well, I returned from my specialist appointment. They're really unwilling to do a liver biopsy unless something else comes up, but they're doing a blood test for basically everything- the whole referral page is filled. Everything from alpha-1 to FE studies. I'll know if I have diabetes or something else from this test, likely.
Hi Wandered, how are you getting along two months later? I have a similar experience to yours although I have haven’t yet gotten a fibroscan or ultrasound. I have been having a hard time with dry mouth as well and a suspected case of Gilbert’s. Just wondered if you ever found answers
After thorough checks of the liver, my doctor is beginning to believe it's a case of dysautonomia caused by quitting alcohol improperly. Very likely something to do with the hypalothamus and pituitary glands going haywire. It could potentially still be the liver, but due to the abrupt nature of symptoms, my specialist doesn't think so.
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