Hi all. I just wanted to share my experience as i'm desperately trying to make sense of my symptoms and am utterly terrified i've damaged my liver.
I'm 33 and drank on and off heavily through my 20's. I had anorexia in my mid 20's for a couple of years so didn't drink at all through this time but I did have a raised ALT during this period though the doctor at the time said it was just from anorexia and would get better so I don't think it ever got followed up. I then developed nausea shortly after the birth of my son 3 years ago and went to see the GP, at this time I was drinking small to moderate amounts and had high ALT. I stopped drinking and my enzymes returned to normal but then I developed constant right upper quadrant pain. Things had improved a little a year later and so I tried drinking small amounts again no more than a few units a week, but then developed intense right upper quadrant pain and went back to the GP, again my enzymes were raised. I stopped drinking completely then and haven't drunk since and my enzymes have always been normal but the pain hasn't improved. It goes through periods of being better and worse but it's stabbing and really unpleasant. I also get migraines, unexplained fevers, flitting joint pain and hair loss, as well as my periods have become very strange..they are regular but very long about 10-12 days and if I have even half a glass of wine I feel awful for days...sick/pain/headache.
All my blood work is normal so despite going back to the GP masses of times they've said there can't be anything wrong. So i've paid to see a couple of private herpetologists over the last few years as well. They've done hepatitis/autoimmune screening etc and again everything normal. I've had two normal ultrasounds and my fibroscans were 3.3kpa in 2013, 4.1kpa in 2014, 3.1kpa in 2015 and I had a shearwave US instead of fibroscan this year which was 5.6kpa. I'm petrified that these are readings are false negatives because my enzymes are normal and so I don't have any disease activity at the moment and that I actually have cirrhosis. I just wondered if anyone else had experienced a false negative on fibroscan or if anyone had had these symptoms and had a biopsy that was ok. I'm so scared i've damaged my liver and that I won't be here to look after my children. So if anyone has any stories please share.
Thank you
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Moffcrawf
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Your view of the tests is wrong. The blood tests measure inflammation (Hepatitis) and the Fibroscan measure scarring or more accurately it measures stiffness which is then converted into a likely level of scarring. Fibroscan is 95% accurate and the missing 5% was because of sporadic damage caused by virus's etc. Its a very good test to check for Liver damage from Alcohol, which scars more uniformly.
Your tests show you have no inflammation and your Liver is soft, even if you did do some damage through booze, if you stay sober your Liver is certainly capable of a full recovery with those scores.
On another site I frequent several people have recently had issues which your describe and it turned out to their gall bladder, alcohol maybe irritating it. They were at times quite debilitated, both were cured when they had their gall bladders removed.
Most people in the UK drink alot in their 20s, it usually takes several decades of heavy daily drinking to cause Cirrhosis.
Im not saying you dont have a health issue, but with your tests to date nearly every Liver doctor you see will tell you that you do not have Cirrhosis. Yes, you could have some kind of Liver issue, you do need to understand what is causing the enzymes rises, but you are far from being on the transplant list. Try an relax with the good Fibroscan, mine was 4.2 and I drank for 20 years and im still doing ok.
Thanks Hidden thats reassuring. I just can't understand how I feel so unwell if I've not done any damage to my liver. I think maybe the only way to find out for sure if I have a liver problem is to have a biopsy but the hepatologists aren't very keen to do this. Not sure about my gall bladder, don't they look at this when they do the ultrasound scan or can it be something else that can't be seen on ultrasound?
Sorry to hear you are suffering, I suffered for 18 months after a drinking binge, convinced I was dying of Liver disease, it was the most depressing thing ever! In the end I only had Gastritis.
Yes, they do look at the gall bladder when they do an ultrasound, but still people have had it out (it serves no purpose in modern humans anyway) and they have been fine after. The hazy picture on an ultrasound doesn't show everything, a HIDA ultrasound is more suitable but still can miss small things. All im saying is that its worth discussing with your doctor, if they take it out, they could have a good look around inside too.
With your other tests they will be reluctant to do a biopsy, its not without risk.
I agree with Ralph, I have mild cirrhosis now but years ago I had gallstones and what you describe sounds more like the gallstone symptoms than cirrhosis. Have you had an ultrasound scan, that picked up my stones and I had my gallbladder removed. After that I was fine and my liver damage is something totally different and not drink related. Ask your Dr to investigate gallstones if you can. Good luck and try not to worry, with that fibroscan result your liver sounds in good order x
Sounds most like gallstones. I can recommend reducing meat and dairy products, eating more greens, nothing processed. Check out 'gallbladder cleanse' on google. Also can be heavily affected by stress response, particularly cortisol. Coffee, alcohol and sugar are the bad guys here. Try to find ways to relax, to feel calm. I found listening to music, massage, hypnotism tapes - especially the Paul McKenna one - invaluable. Trying everything I can to avoid gall bladder removal! Enjoy playing with your kids, that is the most important thing you can do.
Thanks for the support everyone, will try some relaxation stuff and hope that helps. Will also speak to my dr about HIDA scan, the US didn't show any gallstones so hopefully that might help..would be so nice to just feel normal again!
I have started this reply three times already and something always delayed me in finishing it.
I have had intermittent right upper quadrant pain for many years. About 5 years ago they did an ultrasound of my gallbladder and at that time they said I had no gallstones but what they decided was a fatty liver. The ER doc said there was nothing to worry about so I didn't. Continued to have such severe pain in abd that I could do nothing until it went away. After like 4 really intense episodes I went to my PCP the next day. The pain had improved by that time but my stomach felt like I had been kicked really hard. She of course had no words of wisdom but sent me for blood work I felt like to make me feel she was taking me seriously. A few days later I get a frantic call from my docs office saying my liver enzymes where almost 1000 and that I needed to see a surgeon right away. Ended up having gallbladder removed. That took Care of my pain for awhile then my new PCP was doing routine blood work and found I had elevated ast/alt and alk phos. We decided to wait a month and repeat labs which again were abnormal. Went for the standard round of scans and blood work and decided to go on a short course of steroids to see if that would improve my results. It brought those enzymes down very nicely and it was decided at that time to have a biopsy of the liver. Results came back and showed no fatty liver disease but inflammatory changes and a granuloma consistent with Sarcoidosis.
Then I began treatment with a rheumatologist who placed me on Imuran which was horrible and it did nothing to improve my results until he increased it so much that it wiped out my white count so had to stop. Switched to IV Remicade and I thought I was doing very well on it. I no longer had any joint pain and for about two months I had no abd pain. Then all of a sudden at the beginning of the year I again had intense pain just like I had before my gallbladder was removed.
Long story short I now have very bad pain almost daily. My ast/alt and alk phos are always elevated sometimes if I had a bout of very bad pain they go over 500. Had an MRI of the liver and the Fibroscan done. The MRI showed an enlarged liver and spleen. It also showed a dialated biliary tree and a strcture. The Fibroscan said that I had stage 4 liver disease. So I knew I had problems with my liver but no one said that I already had cirrhosis. This also stumped my GI doc and referred me to a surgeon to have a laporoscopy and obtain a wedge biopsy. So the surgeon told my husband after the surgery that my liver looked really good. The new biopsy although not a wedge but a needle aspiration showed inflammatory changes, no fatty liver. So now the GI doc said he has no idea why my liver enzymes are elevated like that but that he wouldn't worry about it. So I said how about the pain I am in every day. He just causally raised his shoulders like he didn't know. So now I'm getting upset because on one hand a test is telling me I have cirrhosis, an ultrasound that says I have fatty liver disease and an MRI that says I have an enlarged liver and spleen with a stricture and dialation in the biliary tree. Now a doctor who thinks I'm making up my pain and is saying not to worry about all the abnormal test because he can't figure it out so I should just ignore this and move on. Beyond frustrated. GI doc has been trying to reach me because he now feels I may have a retained stone causing my pain and after reviewing all of my labs for the last three years is now ready to give me the benefit of the doubt and look for a stone. I can't get over the fact that he is just taking this so lightly. He isn't the one who will wake up one morning 4 years from now in the hospital because my liver is now so diseased that it cannot function. I don't know what to do.
Hey! I have similar situation. I just had 5.4 KPA and I have same symptoms. Wondering if mine is false negative. I doubt, with multiple reads, yours is a false negative. Have you had a diagnosis? Have you found anything that helps?
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Fibroscan
Liver pain
Should I fight for a fibroscan?
Pale stool but not jaundiced/no cirrhosis
Imaging false negative?
