Liver issues: In 2008 I was told I had an... - PBC Foundation

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Liver issues

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In 2008 I was told I had an enlarged fatty liver and I believe my liver enzymes were elevated at that time. I was told to lose weight and nothing else was followed up on it. Then in 2014 I had an ultrasound for my kidneys and they scanned my liver and in the report it said "enlarged, coarse, echogenic possible fatty liver". No follow up was done. Now I had a nuerologist do blood work and tested my copper and ceruloplasmin levels and they are both elevated. I've done some research on those levels both being high and finding it could be PBC. Should I be concerned. I'm going to my primary care physician in a few days and will discuss this with him as well. Any advice would be greatly appreciated. I also live in the United States.

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Ballymahon2 profile image
Ballymahon2

Have they done ama test if not you should get it done its a blood test

Jmorrison profile image
Jmorrison

Hi Razzi7

My liver function tests were high for a number of years before pbc was diagnosed and towards the end of that period I was suffering from severe fatigue. I was told during that period that the raised lft's were probably from a fatty liver and that losing weight and/or not having alcohol could fix it but ut couldn't!

It took a liver biopsy and referral to a liver specialist in Melbourne before I was finally diagnosed.

Hopefully you don't have pbc, but the diagnosis can be complex, even for medical specialists!

Robfromus profile image
Robfromus

Hi Razzi7 , I also live in the US. I had elevated liver function test for years also and had ultrasounds and other tests done but my general practitioner missed the pbc completely I was told I had a fatty liver also. I started having pain on my right side and he then referred me to a GI doctor and he ran tests ( checking for ama) and he diagnosed the PBC and even he was a little unsure because it's more rare in men. I went to the Mayo clinic in Rochester MN and they confirmed it was PBC.I had a biopsy done but positive AMA and elevated AP is almost a positive diagnosis. I don't think I would do the biopsy again though. It's important to get on urso asap if you have PBC, my liver counts came down immediately after I started it but for years my liver was getting damaged because of the mis diagnosis.Dont trust a general practitioner, get to a specialist that knows what PBC is.

ninjagirlwebb profile image
ninjagirlwebb

Go see a hepatologist who can get to the bottom of this. Maybe you just have a fatty liver which is more manageable than pbc. Even if you have pbc, though it can’t be cured, you can take urso to slow its progress.

Try not to worry too much until the doctors go through the tests etc...

Just be vigilant because you need to insist on follow up so that it can be treated.

Also if your pcp is not doing what you are expecting, consider switching to another doctor. You need to have someone looking out for these things on your behalf.

in reply to ninjagirlwebb

I am going to demand to see someone but am having some symptoms of being low energy, itchy skin, o all of a sudden developed a severe case of tmj and my right arm when bent my little finger goes numb. Not sure if any of this could be related but just been within last few months. I am not sure why the copper was tested so I will be asking the nuero later in the week.

ninjagirlwebb profile image
ninjagirlwebb in reply to

This is why copper is tested.

Wilson's disease, copper isn't eliminated properly and instead accumulates, possibly to a life-threatening level. Symptoms typically begin between the ages of 12 and 23.

Symptoms include swelling, fatigue, abdominal pain, and uncontrolled or poorly coordinated movements.

Let us know your progress. Good Luck.

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