Liver pain and itchiness

[ROCKO2231]

Hello again ladies and gents,

My ongoing chronic condition had me going to the ER on Monday morning due to intensified pain in the liver area accompanied with extreme itchiness specifically in the hands and feet, as well as an overall general malaise feeling that happened through Sunday night. Prior to the last few weeks, i had never experienced severe itchiness and that had coincided with my increase in bilirubin. The chronic headaches have also amplified.

Blood samples were taken and not surprisingly, my liver enzymes have never looked any better: ALT (19), AST (20), GGT (19) and ALP (61) all in the norm. However, my bilirubin was at 56. After years of having it in the 20 and 30 range, it has shot up to over 50 the last month or so, hence the bouts of itchiness at night, as well as severe headaches and overall unwell feeling.

They also performed an US and nothing really came of it. Here's a copy/paste of the result:

INDICATION: Male, 55 years old. "Acute RUQ pain, hx of cirrhosis, elevated bilirubin today, rule out cholecystitis, obstruction"

TECHNIQUE: Focused study of the hepatobiliary system

COMPARISON: Ultrasound abdomen October 17, 2018

ADDITIONAL HISTORY: None

TECHNICAL NOTE: Satisfactory.

LIVER: Liver echogenicity is moderately diffusely increased. Areas of preserved echogenicity occur in typical distribution for focal fatty sparing. No liver nodularity detected. Adjacent to the falciform ligament, there is an ill defined echogenic nodule with no vascularity measuring 23 x 18 x 15 mm likely fatty infiltration. A 4 mm cyst is also seen in the right lobe.

GALLBLADDER: Unremarkable. No gallstone. Negative sonographic Murphy sign.

INTRAHEPATIC DUCTS: Normal.

COMMON BILE DUCT: The CBD measures 3 mm.

PANCREAS: A limited depiction of the gland reveals no abnormality.

Not sure how precise an US is for possible biliary issues but that's what the ER could do at that point and got sent back home and advised to follow up with my family doctor/specialist.

I have an appointment scheduled at the end of June with my hepatologist to see if we could investigate what's going on with my ongoing liver pain, headaches, general malaise and elevated bilirubin. I haven't been able to convince her yet that i'm possibly dealing with some type of autoimmune liver disease and so far, test have been limited to US and blood test. Having recently been diagnosed with ANCA concerns me that i could possibly be dealing with PBC or PSC.

The research i've done shows a connection between ANCA and PSC with people dealing with high bilirubin levels and liver pain. However, normally the biliary enzymes GGT and ALP would be high (2X). If anyone has experience in this field, please let me know as i feel i'm getting better info on this site than with my medical team.

As for me, just gonna keep doing what i can: eat right, avoid processed foods, drink lots of water and hope the body does it's thing. Peace out all and thanks,

Rocko

[PSCMartine]

Hi Rocko

How frustrating for you. I have had PSC for 17 years. Obviously I don't have enough information to say you've got PSC, but you absolutely can have normal ALP and GGT (in fact all liver blood tests can be normal) when you have PSC as these fluctuate, regardless of stage of disease. They would need to have a proper look at your bile ducts with an MRCP scan (a type of MRIU that focuses on the biliary tract).

[ROCKO2231 in reply to PSCMartine]

Thanks for the info Martine. I did have a MRCP procedure done in early April and nothing came up as far as the bile ducts are concerned. That said, i started having bouts of night generalized itchiness around late April to go with the other chronic symptoms that i've been dealing with for a while now (headaches, general malaise, fatigue, loss of appetite, ect). I recently tested positive for the antibody ANCA which has an association with PSC so maybe they missed it on the MRCP? Not sure at thi spoint what i'm dealing with. All i know is that symptom wise, i'm getting worse no matter all the efforts i've done to eat healthy and not drinking. How are you managing your PSC if you don't mind me asking? Thanks,

Rocko

[PSCMartine in reply to ROCKO2231]

There isn't a strong enough association between ANCA levels and PSC for it to be used for diagnostic purposes. I think in your consultant appointment, consider asking if they have been able to rule out other autoimmune liver diseases (AIH and PBC), and if they think small duct PSC is a possibility. Small duct PSC is diagnosed with a liver biopsy as the bile duct strictures are too small to be seen on MRCP. And also I would ask what else they think could be causing your symptoms and elevated bilirubn. It is difficult as your symptoms could be any number of other things (allergies etc), not necessarily PSC. Good luck in getting to the bottom of it!

Since there is no specific PSC diet, I just try to eat healthily and take regular exercise.

[FlippinOut]

Hi Rocko, I’ve read through your posts and it seems we have similar symptoms. My bloodwork doesn’t reflect how bad I feel and I’m not even sure how bad my liver disease is at the moment. I had a CT scan that showed nodular liver surface and a FibroTest that showed F3 fibrosis. My liver function tests, albumin, hemoglobin and other blood levels etc are normal but I’m diagnosed with cirrhosis. I have all the symptoms you have including a bloated abdomen but no ascites. I can’t lose weight but it looks like I’m losing muscle mass. I honestly don’t know what’s going on or what to do about it. After reading your posts, I feel a little better knowing I’m not alone in this because sometimes I feel like I’m just going crazy and imagining things.

[Polaris_Ab]

Hi ROCKO2231,

I hope you are well.

How are you doing now?