PBC, cirrhosis, and now fatty liver?

[islandanonymous]

Wow, I'm so confused! I was diagnosed with PBC that had already reached cirrhosis about six years ago. I discovered that a Chinese herbal I was taking (for insomnia) was likely part of the problem...it was banned in Canada without me knowing due to it causing liver, brain and nerve damage. After I stopped taking that stuff and I started on Urso, my bloodwork returned to normal pretty quickly. But I guess the damage had been done. For quite awhile I had bad fatigue but that has become quite rare and I feel really good these days.

I have ultrasounds twice a year. I had five fibroscans since my original diagnosis and my scores kept improving, going from 35 kpa to 10.5 kpa in Dec./18...until my last fibroscan, that is...my score went up to 15.9. And my CAP score was 291! It was a major shock. I have never had a CAP score reported to me before so I assume it wasn't a problem before.

The weird thing is, the ultrasound done in June of this year didn't show fatty liver disease. My question is, how is this possible? Wouldn't fatty liver show up on an ultrasound? My BMI is in the healthy range. It doesn't seem possible for fatty liver to develop between my June ultrasound and my September fibroscan. It makes me doubt the accuracy of fibroscans.

I find my gastroenterologist to be very vague with any help or acknowledgement of what's going on. I gained about 10 pounds in the last 1-3/4 years and he blames my fatty liver on that. I have a healthy diet (I thought!) and get quite a lot of exercise but it doesn't seem to be doing the trick.

I actually didn't even know that I still have cirrhosis until a new GP called me with my latest ultrasound results. I always assumed that I was getting better because of my improved fibroscan scores. But now the fibroscan also shows cirrhosis...

Tomorrow the gastroenterologist will be calling me again because I insisted on asking more questions. I'm trying to think of as many questions I can so that I use my small allotment of time well...up until now I've only been able to talk to him every two years. But now with this latest report, I'm going to be referred on a yearly basis.

[Hidden]

Hello,

I am glad to hear that you have an imminent appointment, you certainly have lots of questions that need answering and your medical team have a duty of care to answer them.

Might I suggest that you look at our Patient charter - it describes what care you should receive with a diagnosis of liver disease and there is also a section on what questions you might want to ask your medical team. Here is the link:

britishlivertrust.org.uk/wp...

You may have already seen our PBC information and the national support group details but just incase you haven't...

britishlivertrust.org.uk/wp...

pbcfoundation.org.uk

0131 556 6811

Here too is our information on non alcohol related fatty liver:

britishlivertrust.org.uk/wp...

britishlivertrust.org.uk/wp...

regards

[islandanonymous in reply to Hidden]

Thank you for all the links. (BTW, the second link goes to page not found.)

Although I had an ok talk with my gastroenterologist, I didn't really get the answers to my questions. I've actually talked to my GP as well...they both are pretty good at the fancy footwork to avoid answering blunt questions. My gastroenterologist basically hates putting labels on things and always suggests that these tests can be inexact depending on certain factors, and that determining the level of disease at all can be difficult, especially with a PBC patient. He tells me there are lots of people with BMI's in the healthy range that still have fatty liver and it's a mystery as to why that happens.

Regarding the PBC, he gently reminded me that it is, afterall, a progressive disease. But I'm kind of stubborn and believe that that doesn't have to be the case.

So I'm just doing what I can to drop the 10 pounds I gained...I have cut out all sugar (even though I didn't imbibe much before), I have cut out all red meat, and I've upped my activity level even more. I've already dropped a few pounds so that's encouraging.

I even wonder if the fibroscan was accurate. I was told that my extra 10 pounds could've influenced the results. Sometimes I wonder why I bother having that fibroscan at all.

I'll be having my 2x a year blood test next week. Keeping my fingers crossed that my levels are still normal as they have been for years now.

I'll report back next week!

[Zukosmile07]

Let me know what your gastroenterologist thinks because I find mine to be vague as well.I was told that ' once you get cirrhosis it's scaring and you cannot repair or cure a scare' .

[islandanonymous in reply to Zukosmile07]

I won't be talking to him again for another year unless there are problems with my blood test. But here's what he said when I was first diagnosed with cirrhosis and I asked him if it could be reversed...he told me that yes, it can be. So there you go. So many different opinions. I choose to believe the more positive outlook as I think that what goes on in our head can heavily influence outcomes. And to be honest, I no longer entirely trust what any doctor says anyway because I have been misdiagnosed for tumors on my liver (incorrect ultrasound), atrial fibrillation (had it for a month but it went away...which isn't supposed to happen), lupus (took prednisone for 2 years then was told years later that I had never had it), and glaucoma (treated for a year then was told that I didn't have it...which isn't supposed to happen), and the beginnings of macular degeneration (but I don't have this either according to a new opthalmalogist).

[Zukosmile07]

Wow......I can relate to the misdiagnosing. Sometimes it feels like they're covering their own backs and sometimes to me it felt like they just wanted the bed I was in.

You are very calm for the amount of pressure and distress that comes with misdiagnosing.

I was diagnosed with cirrhosis of the liver and build up of ascites fluid. I was drained 5 times in 6 month to astonishing news (exact words) "Your liver cuput" (I try to write it how he said it) then he walked away.

Yes I have decompensated cirrhosis of the liver stage 4.

1 to 3 years to live. The only cure is a transplant......

Thanks for the 6 months diagnosis. Then the wait to get on the transplant list.

Sorry about the rant....I find it so frustrating and I am sick to the back teeth of consultants and specialists using covid as a excuse when that is not their area of expertise.

I'm under a full team of specialists and consultants now, who do not miss anything.

Hope everything goes well with you and your treatment.

[islandanonymous in reply to Zukosmile07]

Wow, I'm really sorry to hear about your diagnosis. And going through all that with covid hanging over our heads and screwing up the medical system really would wear your patience very thin. Plus make it extra scary. I'm so sorry you're going through that. My mom had ovarian cancer and also had ascites from it so she had to have it drained twice a week for months before she passed...I really feel for you because I saw how it affected her.

I do feel calm most of the time despite my diagnosis (and all the misdiagnoses). There's nothing I can do about it now besides take the best care of myself that I can. Also, to be honest, I feel fine so that helps a lot.

I hope you get on the transplant list and everything works out for you. Try to keep from stressing out...it really helps a lot. I do a lot of walking in nature and I even hug trees, lol! (It soothes me and I imagine everything flowing within me just like the sap in the tree...sounds crazy maybe but I really feel like it helps because it's almost a meditation.)

Anyway, all the best to you!

[Zukosmile07]

Thank you.I am on the transplant list and I have an appointment tomorrow.

This is a different hospital where they are so understanding and know everything there is to know about the liver.

I actually am a very calm person, people comment on the way I am. They cannot believe that I'm smiling (including the professionals).

I have to, it's my defence mechanism. Also works wonders for morale.

I have my bad days just like everyone else. ( Don't think I will be hugging tree's 😀) I do take my sister's dog for walks around the woods. No one else around, so I can sit down whenever, wherever I want and need. You are right about getting out.

You carry on with the tree hugging it obviously works for you.

Thanks again.

[islandanonymous in reply to Zukosmile07]

Heh heh, well, I moved to a more populated area so I don't indulge much anymore. I used to live in a much more isolated area and after I was diagnosed, I was a major tree hugger for awhile there!

I'm glad to hear you can get out for walks in nature. Yes, we all have our bad days but we're allowed, right? I do think you're treated better, especially by the professionals, if you have a calm demeanor. They appreciate it because normally they will often see people at their absolute worst.

Take care!

[Zukosmile07 in reply to islandanonymous]

True....... Ditto!

[islandanonymous]

I'm reporting back with my blood test results - they are still totally normal! Although I'm feeling quite well, I'm still kind of amazed because of the bad Fibroscan results. But I'll take it!