Liver Pain Continues: Hi, I was... - British Liver Trust

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Liver Pain Continues

jabrahm profile image
5 Replies

Hi, I was diagnosed with fatty liver by ultra sound scan in this april month. All LFT enzymes were in normal range. Last month I had CT scan which came back with normal liver with no fatty changes found, however i have got ALP enzyme slightly raised 139 above the upper limit 130. All other enzymes are in normal range. I still got constant mild to moderate pain since last 8 months under the ribs in middle and near by shoulder blade. Other symptoms are constipation, bleeding haemorrhoids (piles), weight loss, flatulence, bloating and frequent gurgling/ door cracking sounds from abdomen. Doctor said nothing to worry about but how can i ignore all these things? CT scan ruled out even fatty liver but the pain and other symptoms makes me worried. Any advise what could this be? and what should i do next? I am thinking to go back to GP and request him for referral to hepatologist.

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jabrahm profile image
jabrahm
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jane1964 profile image
jane1964

I would definitely ask for a referral to a hepatologist if it were me.I have pbc my liver function tests were all repeatedly completely normal for the first 4 years after diagnosis, I did have an antibody AMA and symptoms of fatigue and itching .Now 7 years on I have cirrhosis.If you have any symptoms or doubt ask to see a hepatologist to get them looked into.

Jane

Swood3154 profile image
Swood3154

I didn't have pain. They first suspected liver with the spider veins all over my body. Cat scan showed liver damage.

JandD profile image
JandD in reply toSwood3154

David's CT scan was not conclusive so they did an MRI that showed the cirrhosis

Brazwendy64 profile image
Brazwendy64

I have had a very bumpy journey with elevated liver enzymes along with elevated alk phos for the last three years. When it was first discovered my pcp obtained additional bloodwork which indicated an auto immune disease so I then started seeing a rheumatologist who started me on Imuran to attempt to normalize the liver enzymes. After about six months on Imuran we had to discontinue due to white count of 2. He then started me on Remicade infusions. So I was getting blood work done every time I had an infusion and there were times where although not normal but improved. No matter how much he increased the dose it didn't seem to be able to get my enzymes to normalize. The funny thing was that I had this pain in my RUQ with extreme bloating and nausea. It seemed to be related to food but if I didn't eat that also seemed to make it worse. Sometimes it was so bad that I could just lay in bed with a pillow under my back to try and help the pain. Every time I would see my doctors they would ask if I had any pain and I would always tell them about the pain and how debilitating it was. The gastroenterologist and rheumatologist just basically blew it off and at one time told me that the liver doesn't cause pain. The only doctor that believed me was my PCP. To make a long story short when I would experience this pain if I would go to the doctor my blood work showed extremely high enzymes and alk phos levels that would then slowly come back down. So because of a new Anemia I was sent back to gastroenterologist who then sent me to have a Fibroscan which showed stage 4 chirrosis which was a total surprise to everyone. I was then sent to a surgeon to have a laproscopy with biopsy. That showed that my liver had no fatty changes and although not completely normal it was a far cry from stage 4 liver disease. The surgeon also stated she saw no visual evidence of sarcoid either. Can you say frustration. So I felt like everytime I had a test done the results would be different from what the other tests said. The only thing that was constant was the pain I was having and the effect it had on my blood work. I finally convinced my gastroenterologist to look at this and compare my lab results and he felt like I had a stone stuck in my CBD that didn't show up on MRI. He ended up doing an ERCP and surgically opened up my sphincter of Oddi. After an awful recovery from this procedure I have felt so much better. I still have discomfit but it has been tolerable with Tramadol and Flexeril. I have minimal bloating and the nausea is a thing of the past. I tried to speak with the gastroenterologist about Sphincter of Oddi disease and he said that it is extremely rare so again pretty much blew me off. I guess what I wanted to convey is that all that time I suffered with this awful pain it took so long to get true relief because the doctors that I depended on never took my pain into consideration when trying to get the diagnosis. If you are having pain anywhere in your body then that is the body's way of telling us that there is something wrong. To ignore this symptom is dangerous and sloppy. It cost me three years of my life that was just miserable never mind the thousands of dollars that was spent on multiple MRI's, ultrasounds, blood work, surgery, biopsies etc... Now after everything is said and done I was instructed by the gastroenterologist that everything is great so go home and live your life. When asked how often I would need to see him to monitor my liver disease he said not to worry about it. Like you I do not think that my symptoms and elevated lab work warrants a little more diligence then he thinks. It would be wonderful if I believed that my abnormal blood work did not indicate continued damage to my liver. I don't want to ignore a problem that will in a few years become severe enough to have bad consequences. If you think that your symptoms need a more comprehensive plan then I would push for a believable diagnosis.

B3nnen2015 profile image
B3nnen2015

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