results and questions: Friends, It turns out... - PBC Foundation

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JennyCville profile image


It turns out that i have NASH AND Pbc. My (horrible) GI never bothered to tell me about the NASH. The pain that I have is from the NASH. I am shocked about the NASH...I already eat a clean, organic diet. I am a small person (130 pounds), and am gluten free. Does anyone here deal with both NASH and PBC?

Also, does your bilirubin have to be elevated to have the itch? My bili was normal - always has been - but I think the itch is starting.

I am pretty dejected with the news of the NASH...wondering how this complicates the PBC.

Thank you for your thoughts and support....

12 Replies

So sorry to hear you have an added complication but please excuse me what's NASH? Oh & my bili is always good & I itch like hell xx

Sorry to hear about your recent extra diagnosis. I have never heard of NASH - but just looked it up at this link

It seems very similar to PBC in the way it progresses. Which country are you in? If you are in England I would suggest you contact the British Liver Trust and also the PBC Foundation for advice. Its certainly worth trying to find a liver specialist to talk you through the implications of having NASH and PBC.

My understanding of Bilirubin levels is that it is an overall indicator of liver health. The dreaded itch does not appear to be related to raised levels of bilirubin.

Sorry I can't be more helpful. All I can say is that with time we do all seem to come to terms with all our different diagnoses and find a way to deal with them

Try and stay strong and think about the positives (I know that's easier said then done!)

Hello JennyCville

Sorry to hear about your Nash, I was diagnosed with it last year, also Varacies , so had endoscopy to deal with bleeding parts, I've had my pbc 14 years, had Gallbladder out June ,then 6/7 hours later I started to bleed, so was watched closely but taken to theatre to see where bleeding from ,it was my liver they told me days later my liver very cirrosed, it bleed again so theatre again, I had to have 12 units blood and blood products then ventilated moved to intensive care touch and go, but I recovered very slowly. Two weeks ago the surgeon saw me he had abdominal scan done, I have now got nodules on the liver and one big one wher the gallbladder was, he said it might bleed or turn nasty so they will keep close eye on it , I have pain in the liver because of the nodule ,my itching has been a problem for 14 years. Do you get bone pain ? I have terrible joint pain so take tramadol slow release. For th itching I use ice cube to rub on the area it numbs the nerve ends ,then E45 rubbed in keep area moist. Do you have problem with sore mouth and tongue , because of the dry mouth ,no salivar I buy Salivary Stimulant pastilles ,my dry eyes The dr gives me px for tear drops or the gel. The Nash has not bothered me because of all the other problems, I hope you can read what Sheepjane sent you also go to google type in Nash, and read what they have printed,

JennyCville I hope you feel better? This PBC is still a very unknown all the extra problems, that's why it's great to type our problems to each other, get ideas to try. Good luck x

Thank you all so much for your encouragement and for sharing your own stories. NASH is Non Alcoholic Steatohepatitis. (In other words, I have Fatty Liver disease that progressed.) I am devastated. I am with a very mediocre Gastroenterologist right now, but am going to begin treatment with the National Institute of Health in Bethesda, Maryland on April 11. For those of you not in the US, this is our top health center - and it's right in my backyard. And better yet, because it is a research institute, my treatment is completely FREE, and comprehensive. So I feel like I'm just holding on until then. (And we have a trip to Paris planned for spring break....PRAYING that I do well). I don't know yet if I have varices. I only have minimal itch, and no dry mouth/eyes. Just pain...and profound fatigue.

Hello JennyCville

Hope you well ? and glad you feel more positive, that's great news you will get the best care and free. The fatigue is terrible and my memory so bad, I had to give up my nursing of which I had done ,some thirty years , but safety came first.I'm 58 now, yes we both have fatty livers but we have to plod on and pray they find a cure

Take care xx

KarenLeslie profile image
KarenLeslie in reply to Cat19

Hi Cat19 and JennyCville, I also have NASH with lupus and PBC. Because of fatigue and memory loss my doctor sent me in for an MRI which showed Lupus related small blood vessel strokes. I had to retire early from my high school teaching which I loved! I retired at 58. I miss it so.

My latest Endo showed 8 ulcers, an intestinal lesion and a possible gyst.

But God has blessed me by allowing me to see and enjoy things most healthy people never see. Like how the air smells when it's going to rain or layers of clouds that are just so pretty! The other day I had a friend cut down an entertainment center so it is only 7 inches deep! It's hilarious and super! A giant cabinet 5 ft tall but only 7 inches deep now sits perfectly in my tiny bathroom!!! And toilet paper fits!

I hope you can find silly beautiful things to bring a little lightness to your days.

Cat19 profile image
Cat19 in reply to KarenLeslie

Hi KarenLeslie

Thank you for replying. Yes it'll retired from my job nursing age 53. The memory loss and fatigue and the terrible bone pain.

Yes I know what you mean by the smell before it rains and after the freshness . We must plod on and it's good to talk text each other as we have pbc with other added complications. Take care x

KarenLeslie - I just remembered to ask this. Are they treating your NASH? Or are you just on Urso? And have they given you any dietary recommendations? Thank you for reaching out :)

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Hello JennyCville.

Download this leaflet from the British Liver Trust site. You'll find it under Non-alcoholic Fatty Liver Disease (NAFLD). From what I can gather it is the same terminology as NASH. The link is here.

Thank you, Peridot! That was a great resource...I am so thankful for this group!!

Hi JennyCville,

I have Fatty Liver Disease and PBC. From what I understand, the advanced form of Fatty Liver Disease is NASH. Fatty Liver Disease is when fatty deposits are seen throughout the liver, while NASH also shows inflammation and damaged tissue, just like you were saying. So, we are pretty similar.

I should have been diagnosed with Fatty Liver about 2 years earlier, but the doctor I saw was an idiot, to put it nicely. A lot of doctors seem to follow the rule that if it isn't life threatening and the patient isn't complaining, then they don't have to do anything about it. They just ask to see you again in 6 months or a year to see if it went away or became life threatening yet. So frustrating.

I had a good diet and ate very little gluten, but saw no decrease in weight, fatigue, or liver enzymes AST and ALT. Once I started Vitamin D and Ursodiol, then things started coming together for me. I needed the combination of good diet and Ursodiol before I could lose weight, have more energy, and see the liver enzymes back in the normal range. Its what my liver needed.

So, our livers have two things going wrong. PBC causes our immune system to attack the bile ducts. This causes the ducts to become narrow and bile can back up into the liver instead of draining out of the liver like it is supposed to. When this happens, blood tests will show elevated Bilirubin and ALP (Alkaline Phosphatase). The side effects are usually fatigue and itching in the early stages. The way to fight this is to take Ursodiol. It helps the ducts drain and slows down the formation of scar tissue in the ducts somehow. Sometimes it helps itching and fatigue and sometimes it doesn't, but the important thing is to slow the progression of damage to the bile ducts.

The Fatty Liver Disease and Nash are characterized by the presence of fatty deposits in the liver. Sometimes the liver is overwhelmed by the amount of work it has to do, either because it is overloaded with alcohol and poor diet, or because our liver is struggling to process a normal diet due to decreased function. Either way, when the liver gets behind, it packages excess fat and stores it in the liver cells. Excess fatty deposits make it harder for the liver cells to function properly, kind of like trying to drive a car through traffic. This results in inflammation, and eventually scarring. When the liver is having trouble doing its job, liver cells die and burst, leaking their contents into the blood. ALT and AST are liver enzymes that should be inside liver cells, but they leak into the blood when the cells burst. We can measure ALT and AST via blood tests to see how well the liver is functioning.

My understanding is that scarred liver tissue cannot be repaired. Scar tissue is scar tissue, just like after surgery or a bad cut. But we can reverse the fatty deposits in the liver through diet, exercise, and overall health. The liver can still function at 100% even when the scar tissue is present as long as the rest of the liver tissue is healthy and working well. So scar tissue can never go away, but it doesn't have to get in the way of liver function, which is the important thing. We can measure the amount of scar tissue through Fibroscans to see how much of the liver is cirrhotic. Since you haven't been diagnosed with cirrhosis, your liver probably has the potential to function just fine.

So with NASH and PBC, our livers have two ways of having damaged liver cells - from fatty deposits leading to inflammation and from bile ducts not draining properly. Like a double whammy.

I think the best course of action is to be as healthy as possible via diet, exercise, and anything else you can think of to promote health (like having good Vitamin D levels and keeping cholesterol in check). Take Ursodiol or whatever medications the doctor prescribes to assist with the PBC. Plus, we need to continue to monitor our livers through blood tests. Elevated AST and ALT tell us there is too much liver cell damage, and elevated Bilirubin and ALP tell us there's something going on with the bile ducts. In which case, we can use imaging to look at them.

Sorry if this is sort of rambling. Plus it is based on my understanding, which is not actual medical advice. I know I over simplified a few things in the interest of time, but hopefully this will help a little?

Chynablue~thank you so much! That was the best explanation i've read to date. I had no idea how the two "acted" differently. I really appreciate you taking the time to write such a detailed response. Blessings,

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