Hope everyone is keeping as well as can be and coping during these difficult times. New here, but have been reading though some of the posts and everyone seems so supportive.
Little bit of background, I have a history with alcohol; a good number years of moderate social weekend drinking, but unfortunately I slipped into habitual evening drinking throughout the week. I’d say this became a routine for around 3 or 4 years, a few glasses of wine most evenings around dinner time but sometimes up-to a bottle a night. Often a bit more at the weekend.
About a year ago I developed pain in my upper right side and occasionally my right shoulder. I immediately became concerned about my liver, quit drinking completely and went to the gp for tests. Blood tests came back normal and an ultrasound was also normal so my gp was not concerned.
However the pain has persisted. Over the last year I’ve had numerous rounds of blood tests; LFT’s, full blood count, platelet count and coagulation screen have always come back in normal limits. AST/ALT ratio 0.8, normal bilirubin and albumin. Had another ultrasound which was again normal, a normal CT scan and two fibroscans, first was 4.5kpa second was 4.9kpa with 190 CAP.
I know I should be a least a little reassured by the test results, however I’m completely worried sick and I just can’t shake the idea that I’ve severely damaged my liver. I’m aware that blood tests etc can appear completely normal even in advanced disease. I’ve completely abstained from alcohol for the last year, exercise and eat a fairly healthy diet but I still experience right upper quad pain, front and back on a daily basis. My sleep is disturbed and I’ve been experiencing hormonal issues. I’ve not been diagnosed with anything, yet I’m terrified I’ve potentially got ongoing alcoholic hepatitis or even early cirrhosis which is not showing up on the tests.
Just wondering if anyone been in a similar situation with ongoing liver pain despite relatively normal test results, or if anyone has experienced a false negative on fibroscan?
Thanks for taking the time to read all of this and I appreciate any thoughts
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Bob83
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My gallbladder was checked on the ultrasounds and reported as normal. Also the pain is fairly constant and doesn’t appear to be related to meals at all.
I’m at a bit of a loss with my gp unfortunately - spoke to them a number of times, but as my blood tests have been normal, my symptoms are dismissed as anxiety.
'Ongoing alcoholic hepatitis' as you describe it would elevate your bloods - hepatitis means liver inflammation, you would not have normal bloods with ongoing liver inflammation - your inflammation markers would be elevated.
Yes you can have fairly normal bloods in very advanced liver disease but in this scenario your liver would NOT look normal on scans as advanced as a CT scan. Normal ultrasounds, normal CT scans, normal Fibroscan (x2) and normal bloods all equate to one thing (as regards the liver and that is it's normal - whatever you've got going on it isn't cirrhosis or advanced liver disease).
Stay drink free, eat well and exercise might deal with the fatty liver aspect but ongoing pain might be related to something else entirely.
I thought I had some liver issues when I had the same pain. I went to a gastro dr and followed his recommendations and went through blood work, endoscopy, ultrasound. All came back normal. He sent me for a hida scan. My gallbladder wasn’t working and there were no stones. We did an mri before surgery to make sure there was nothing else to find. I had surgery and removed my gallbladder. Dr said liver looked good when he was in there.
I spent nights crying thinking I was dying bc I was convinced it was my liver before all the testing.
I would suggest you ask for a hida scan if you continue to feel it.
Hi, anyway you can describe your symptoms in more detail? Did you have pain after alcohol and fatty foods or just alcohol? Did you itch at all? Thank you!
Nausea all the time. Right upper quadrant pain that didn’t stop. It could be sharp stabbing pains or it could just be tender to the touch. A lot of times it radiated around to my back and shoulder blade. I never could figure out the exact thing that set it off, but alcohol and fatty foods were major factors in it. Sometimes it was itchy just in that spot
If your levels are normal and a CT scan didn’t detect anything then that would personally put my mind at a complete ease.
The liver doesn’t have any pain receptors so you can’t actually feel liver pain, you can only feel pain if the membrane around it becomes inflamed which I’m pretty sure your liver tests would have shown? I’m not a doctor though so don’t take my word for it, I just know you can’t feel liver pain.
The liver is remarkable and can come back from near destruction to healthy in as little as 30 days if you abstain from alcohol, which you have. I have no doubts that your liver is completely fine.
As for your pains, these can be caused for multiple reasons. Anxiety is a huge cause of random pains in people, myself included. I have health anxiety which causes random areas of my body to ache, from my heart to the right abdomen where the liver will be. The more I think about it the worse it gets. But if I ignore it, then it goes
You cannot regenerate a liver nearly destroyed from alcoholic drink (or for any other reason) in as little as 30 days, sorry to break it to you. In fact, cirrhosis is incurable.
I haven't touched a drop in nearly four years, still have cirrhosis and varices.
I am sure the nurse was trying to calm you, maybe she detected in your voice how much anxiety you were having. Some people when you read their liver has returned after years of alcohol is due to alcoholic hepatitis, during this time you might be diagnosed with cirrhosis but if you make a lifelong commitment not to drink again, your liver can regenerate itself but that's only with alcoholic hepatitis not cirrhosis.
yes, you can have normal bloods with cirrhosis but look at the platelets, I haven't seen anyone with normal platelets and cirrhosis, maybe there could be someone out there but I haven't seen it. Many say they have normal liver enzymes, but they are only talking about AST/ALT. My doctor said, always look at your platelets, albumin,GGT, Bilirubin.
I have never had anyone tell me anything about platelets before and I’m experiencing a lot of liver issues though I’ve only been told stage 1 fatty liver. I just checked mine from the Er when I was in a lot of right pain. My platelets then we’re 447 while drs are telling he I’m totally normal in all blood counts. Is 447 sign of liver scaring?
We are talking about 2 different things, you have fatty liver, i am talking about people with a diagnosis of cirrhosis, I have no idea if you have scarring but seem like from your previous post your doctors didn't find anything after giving you several scans. If you are still having symptoms as you mention in previous post maybe have your thyroids checked, this can cause itching, night sweats and the list goes on. good luck
I guess that due to the guilt of my past alcohol abuse and ongoing symptoms it’s really hard to shake the idea that there is a lack of liver involvement.
That combined with learning that symptoms don’t appear until it is too late has lead me down a path of extreme anxiety which I’ve been struggling to cope with, despite what should be reassuring test results.
Hey Bob, I’m having the exact same issue, even a very similar drinking history. though my pain went away after I stopped drinking for 8 months. When I started drinking again (social events only) the pain started up again after a few weeks. I get it off and on instead of constant. Does your liver also hurt when you eat a lot of sugar? I’ve noticed mine does that but only if it’s already hurting from alcohol (which I’ve once again gone back to no drinking at all).
Anyways, I sought out a well known liver specialist in my area, had a ton of blood tests ultra sound, two Fibroscans and a MRE (which is like a MRI and Fibroscan combined basically) all came out completely normal, and my liver specialist said I’m no longer his patient bc my liver is perfectly healthy. Right before I stopped drinking I was also noticing that I would get a little itchy the night I was trying to sleep when I drank.
I haven’t had a drink in a couple months but still getting liver pains. I wish I had an answer but just wanted you to know you’re not alone.
Hi Bob, thanks for sharing your story, thanks to Jenny for yours too.
I’m on a very similar boat here. Similar drinking history for about 10 years, above the recommended levels, not full blow alcoholic but ended up drinking easily a bottle of wine every night over the last 5 years until i was 35 paired with dinner but still. Didn’t drink much at uni it really started afterwards. I started having constant discomfort on my upper right quadrant that radiates to the back and side about 2 years ago. Totally freaked out i had damage my liver and i was into deep trouble. Now 2 years on and after 3 sets of blood tests of all sorts, stool tests, upper and lower endoscopy, ultrasound, CT scan, MRI, fibroscan, everything within normal/healthy range except mild fatty liver found on first ultrasound, not shown on the other later tests after stopped drinking for several months seems like it is gone. Doctors told me pain couldn’t be because of that or any liver issues, and now fat is gone anyway. Done low fodmap diet for IBS. Nothing changed. Pain still remains and not sure what to do. I’ve stopped drinking twice for around 3 months each time, and obviously over all i don’t drink anywhere close to what i used too, mostly at social events, thankfully in my case whilst i found it hard the first year, no so much the second, now i’m generally alcohol free.
Partly came back to drinking even if moderately because all doctors have told me my liver is fine, partly because even after quitting for 3 months i didn’t experience any improvements. After reading Jenny’s testimony and how her pain improved after 8 months dry i’m on a quest to go for 12 months and see what happens. I too still feel te guilt of all those years of drinking and the anxiety of somehow still thinking i have some damage there that is causing this pain. I had to convince my Gastro to refer me for a Fibroscan, which was, as he predicted normal.
On the mental side of things, i do feel your pain, it is very stressful thing to have, being in constant pain and not getting any answers, besides from obviously having to live in constant pain. I has sleepless nights freaking out i was going to die as i has damaged my liver beyond repair. I have been doing CBT, and lately been prescribed a low those of amytriptiline to deal with the pain as my gastro considers it could be anxiety related IBS pain and doesnt want to do more tests. Not quite doing much on the pain side but definitely helping with the general anxiety and mood.
Bob I personally think is it very unlikely you can get a false negative on a fibroscan, let alone 2. False Positives seem to be more common but still is a very reliable tool. Mine was an elastography too that took plenty of images.
I’m seeing my gastro soon and i’m considering asking for HIDA test
to check my gallbladder and biliary ducts. Stones have been ruled out in the MRI, CT scan or ultrasound but still i’m going to keep on pushing.
Sending both of you my support, hope you feel better soon.
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