Cirrhosis or PBC ?

[TruthWillSetUFree]

THE SHORT STORY

My husband was recently diagnosed with F4 Cirrhosis. Began as NAFLD (not from drinking). Short story is that he's had high cholesterol maybe all his life, but it was noticed during a High School football check-up. That was 40-some years ago! He totally forgot about it until a doctor recently asked him how long he's had high cholesterol.

Everything I'm reading states that when the GGT and ALP are elevated much higher than the ALT and AST that it tends to point to the biliary ducts. Is there a way to know besides a biopsy if it's his bile ducts?

THE LONG STORY

The doctors are stumped. We are bummed. Here we are, nearing retirement age, and all we want for Christmas is his good health back!

My husband (age 58) is not a diabetic. He is not overweight. Never has been. He has only ever been an occasional social drinker. When I say occasional I mean maybe 2 or 3 beers on the weekend if we go out to dinner with friends, but not a drinker in our house, and we don't go out with friends much. He's never been a soda or sweet-tea drinker. Not a sweets-a-holic, but did enjoy dessert after dinner a few nights per week.

About two years ago he cut out drinking and carbs unless it was from a vegetable because foods like rice, crackers, bread, beer, pasta, cereal, corn, gluten made him feel like crap. They became not worth consuming because they made him itch or have to spend too much time on the toilet the next morning.

As the doctor was questioning him about how long he's had high cholesterol, he remembered that he almost didn’t get to play high school football because his cholesterol was elevated all the way back then - 40-some years ago! Who knows how long it was elevated prior to high school because who checks their cholesterol in elementary school?

Here is where your jaw will hit the floor and you will feel so much better about YOUR numbers because, “Wow, that guy is way worse off than me!”

Are you ready for this?

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Fibrosis Score 0.93 = F4 Cirrhosis [ Range 0.00 - 0.21 = Normal ]

Steatosis Score 0.95 = Marked or Severe Steatosis [ Range 0.00 - 0.30 = Normal ]

NASH Score 0.50 = F4 Borderline / Probable NASH [ Range 0.00 - 0.25 = Normal ]

Bilirubin 3.4

GGT 901

ALT 276

AST 210

ALP 926

CHOLESTEROL TOTAL 635

GLUCOSE 102 (99 or less is Normal)

Everything else on this test is Normal.

He does not have Hepatitis.

Even a Calcium CT Score came back with 0,0,0. No build up or blockages.

They did a Lipid Panel breakdown and while his cholesterol is through the roof, his Triglycerides are normal. His Concentration and Particle Size were, and I quote, "The best we have EVER seen, I mean we never see numbers this good. We just don't understand it. Go see a specialist."

5 doctors later, the current doctor thinks this could be Hypercholesterolemia.

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CURRENT STATUS:

My husband still works a 40-50 hour work week in sales and management. His work requires travel by air which he still does. He mows our acre yard with a push mower. He does all of our gardening and yard maintenance. He cooks and he grocery shops because he likes to. On really perky days he even bicycles 20 miles on an old fashioned peddle bike (not an e-bike). I don’t know many healthy liver people who do as much as he does.

His biggest complaints are the itching. He itches like a _____ (rhymes with ditch), and not being able to eat an occasional carb.

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QUESTIONS:

I guess my questions are:

Could this be a mistake?

I thought the progression of a liver was NAFLD to NASH, then NASH to Cirrhosis. No?

How can a person be only Borderline or Probably NASH, but have Severe Steatosis, and F4 Cirrhosis?

Do you know anyone who has brought their liver back from numbers this high?

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If you have read this far, thank you! I'm curious to hear everyone's thoughts.

[OdinsMom]

Has anyone run the AMA M2 marker for him? Have they done imaging of his biliary tree and/or liver. I'd see a hepatologist as with all the numbers elevated it may be PBC but as he's male his chances of PSC is greater. I do see more males showing up with PBC in groups though. As for cholesterol chances are he has a family history. There is a thing known as genetic high cholesterol which just stays high. All liver diseases eventually lead to cirrhosis if left untreated

[CeeCee101]

needs to see a hepatologist specifically

[TruthWillSetUFree in reply to CeeCee101]

Thank you for the reply. He has had an appt scheduled for months with a hepatologist.

[Floridachick]

I would see a liver specialist ASAP. I don’t know where you live - if you live in the US, the Mayo Clinic is where I go (Jacksonville Florida). They are also in Arizona and Minnesota. Best of luck.

[TruthWillSetUFree in reply to Floridachick]

Thank you for the reply. He has had an appt booked for months. It’s just taking forever!

[Michi1]

if you are in the SE and can get in, you may want to see Dr. Cynthia Levy. She’s affiliated with the University of Miami hospitals and the Schiff Center for Liver Diseases there.

If it is PBC getting on ursodiol asap is important.

Hope your husband’s appointment goes well.

[ninjagirlwebb]

call the doctor’s office daily and see if there are any cancellations. If there are, you can get a faster appointment.