Unknown liver disease - No symptoms

[Kramkv]

Hello!

I’ve been on this trip for 4-5 years. I’m a young man (31), “normal” weight and I didn’t start drinking until I was 24, and not abusing (you know, just some drinks on weekends with my friends).

It all started with a very low elevation of liver enzymes at a regular doc visit. He said that they would go down and not to worry about it. An ultrasound scan showed a little bit of fat but nothing to worry about. I keep visiting my doc every year and it was always the same, small liver enzymes elevation and everything else was fine. Until january 2020, when suddenly, all liver enzymes went up (specially GGT, with +400). It scared me and doc made me an ultrasound again and showed NASH grade II (I’m not sure if its a correct classification). He told me to take Urso (he said that urso has some properties to protect the liver) and to repeat the test 3 months later. So, 3 months of urso, exercice, 0 alcohol and healthy food seemed to put all liver enzymes almost to its place (but always slightly elevated). Also he checked for Autoimmune markers and some other possible diseases like virus, wilson disease…all negative.

He told me to stop taking urso and to repeat tests 3 months later. So I relaxed a little bit and stopped doing exercise , maybe had some drinks and some “not-so healthy” food. The result was that, again, liver enzymes raised almost to the begining of 2020 with a GGT of +300 and some new things showed up: ALP (less than x1,5 limit) and ferritin.

At this point, he decided to put me again on urso and he ordered an MRI. I was scared but all structures seemed to be fine and there was no liver-pancreas-biliaryduct damage.

We met again in 2021 and the results were some improvement of the liver enzymes (GGT less than 200) but ALP and ferritin were at the same value. So he send me to the hospital hepathologyst to do a liver biopsy with a PBC suspicion.

The new doc at the hospital told me to stop urso and repeat the tests and said that no biopsy is needed at the moment. We repeated the tests and the liver enzymes were elevated again (GGT +500 and ALP +200) and everything else including ferritin was ok, except cholesterol (wich was high). Image tests only showed fatty liver (ultrasound) and no fibrosis (Fibroscan). Now he has told me to repeat again the tests in three months and if the enzymes still with these values, he will suggest a biopsy (wich scares me a lot).

I’ve been reading to this forum a lot but could not found anybody in my situation… I know everyone has his/her own characteristics, but I feel totally alone and scared. Never had any kind of symptoms (no itchy, no jaundice, no fatigue, no dry eyes, no nothing) and I don’t know if I have to worry or not, if this is for the fatty liver, PBC, some other disease or it’s just my condition; and it’s frustrating not knowing what is going on after five years of wrong results and feeling totally fine and full of energy.

Sorry for the long text, I just needed a place to write my story and maybe find someone who has experienced the same.

Thank you and take care!

[freddie76]

Hi

Just check you have been tested for alpha 1 anti trypsin deficiency.it is a genetic defect which isnt always tested for. My hubby was diagnosed with this .

Always had high GGT. Along with other enzyme irregularities . now nearly 10 years post transplant and liver doing fine.

Good luck

[Kramkv in reply to freddie76]

Thank you for you answer! I’ve been tested for alpha 1 antitrypsin deficiency on my last test, apparently the results were ok. Thanks again for yout time!

[Kakey]

I had a similar journey to you, which ended with a PBC diagnosis, after biopsy. But I am a woman in my early fifties, so a pretty typical PBC patient. I am AMA negative, and had slightly elevated lfts, so they discounted PBC for me. I was literally told I didn't have it. Fast forward 4 years, and persistent and rising lfts finally resulted in biopsy and PBC diagnosis. I do have fibrosis, and think that could have and should have been avoided.

Don't put off the biopsy because of nerves, it could turn out to be the best thing you ever do for yourself. I thought it was ok, a bit of a palaver, but it was definitely worth it. Your previous response to Urso is interesting, what did the docs say about that?

The best source of PBC information is the PBC Foundation, they have a website and a forum on Healthunlocked. There are also some groups on Facebook.

Best wishes x

[Kramkv in reply to Kakey]

Hey Kakey! Thanks a lot for your response and for your advise. The doc used my response to Urso to “suspect” about PBC and he said that maybe it has not showed up yet, but he also said that could not be PBC because i’m a young man, AMA negative, etc, so not typical for PBC but also not impossible. So I think I’ll have to wait for the next blood test and then a biopsy…

I’ve been checking PBC foundation, amazing place with tons of info, very useful!

Thanks for your time, take care!

[tinypixie]

I also had a long period without a definitive diagnosis. My numbers were like your although a bit higher. and AMA negative. I was in my twenties when the high numbers first appeared. I had no obvious symptoms other than dry eyes and mouth. Even a liver biopsy was inconclusive. The doctors finally concluded that it was PBC and put me on Urso. Urso has worked very well in bringing the numbers down. Now, about five years later I just take the tablets and totally forget about the whole thing. The best thing is not to dwell on this because it doesn't achieve anything. Go for your tests but put it out of your mind the rest of the time.

[Kramkv in reply to tinypixie]

Thank you! Yeah, I try to put this out of my mind but every time I’ve got tests results is the same. I guess I have to learn to live with that.Thank you again for your reply!

[tinypixie in reply to Kramkv]

You are welcome! Try to stay strong and just live your best life.