Complicated with NASH, looking for next step

[NeverBeen2Spain]

HI, I feel so discouraged by healthcare. My story - No one can say "why," yet I appear to have fast advancing liver disease. I do have several autoimmune ds ie Hashimotos, Fibromyalgia, adrenal issue etc - but so far tested neg related to liver, no hepatitis etc but am + EBV w/o mono, No diabetes A1c 4.7 .

I've had fluctuating very elevated enzymes off/on since 2019 - no rhythm or reason -AST/ALT's have been as high as 800 - 1,000 thankfully not often, usually 200 -300's, occas down to 40- 80's but they can literally be 400 today, 80 tommorow & 153 the next. Alk Phos usually high 200 -300's but can be 400's or occasionally as low as 150's.

I've had Covid x 3, last in May (vaccinated x5), & every time all my labs go crazy. I'm not overweight & have eaten/lived healthy since 2007 when I had RNY Gastric Bypass. Eaten "healthier" since NAFLD dx plus watch personal hygiene products/cleaning products & healthier yet since January biopsy (2nd bx). Alcohol rare entire life (in 50's)- no drugs. My NAFLD developed appx 11yrs AFTER I was no longer obese.

Now advancing rapidly -in 1.5 yrs recent abdominal xray - enlarged lobe, bx's say advanced a whole stage F2 - F3, + secondary Hemochromatosis w/o issue. Hx anemia, but not current. I've had a ton of different types of labs (though not LIVERFASt, many MRI's & 2 MRCP's w/o contrast -,which didn't show much. Denied fibroscan bc I had 2 biopsies. The enzyme theory is it might be a stone hiding in biliary from choley, but that's it. On 3rd GI Dr & she says I'm doing everything right. No suggestion & NO PLANS since Jan though. "Continue as I'm doing" - they don't believe there's anything I can do to change this. I'm very scared.

I did see liver specialist at a transplant hospital for 1st biopsy - he said something else is causing enzymes/liver issues but he had no clue what. Said "your liver is fine" that I did NOT have a fatty liver - not to worry it was "normal for age" - yet it said "F2 & fibrosis" & steatosis was mentioned (no grading). I even said that to him, still "no."

My recent/ 2nd bx different hospital & very painful, did NOT say NASH, only says F3 but with lots of steatosis- no grading like I see on other's reports. I had to ask GI if it was NASH. But received no teaching or why it didn't have a grading on it.

Yesterday, I saw Nephro for very low sodium (126- norm 135) /low calcium - a very extensive & good visit - labs/history /exam - diagnosed with red hands, clubbed toes/some fingers (showed 3 Dr's & none knew what they were), hyponatremia/hypocalcemia. Been exhausted 75% of the time, plus since May, bilateral lower edema- Dr said all above bc of my liver!

This seems very bad to me. I'm so confused & worried- is clubbing usually with NASH or Cirrhosis? Cause I've had it all for atleast a year.

I'm phyically unable to exercise or cook much but simple meals , still trying to improve my dietary choices.

Any ideas what could be causing my NASH or whatever this is?

Is clubbing seen with NASH or only Cirrhosis?

Dr wise - Any suggestions where to go &/or what to ask for?

Is Medicare still paying for the LIVERFASt test & how to I ask/get it done?

Is a Fibroscan recommendated after a biopsy?

What else can I do to help myself?

Sorry this was so long.

Thank you

[nash2 Partner]

Goodness that is a difficult journey. We can't pretend to be doctors here but it seems like an autoimmune problem with liver issues on to of it. It might help to be sure you understand the terms. NASH is staged F1 to F4 and cirrhosis is just the old name for F4 steatohepatitis. It is hard to find a doc who deals with complex autoimmune disease but maybe someone at a teaching hospital if there is one in your area. It ideally would be someone who is doing research and seeing patients. Not much help I know but you have our hopes and best wishes for you.

[NeverBeen2Spain in reply to nash2]

Ty. I am neg for ANA & Sjogren's off the top of my head. Also neg for Hepatitis strains. For Primary biliary cirrhosis/primary biliary cholangitis (PBC) or Primary sclerosing cholangitis (PSC) - In May my GGT & CMV was mildly elevated & Mitochondrial Antibody, M2 - neg. Would PBC /PSC show up on a biopsy? IDK if there are more autoimmune or if there are false negatives?

IDK what the toxin tests are to say if I've had them or not.

I didn't realize that about NASH, thought it was the stag b4 cirrhosis? Could you explain more &/or do you have good video link(s)? I goggled it but still don't understand it .

I shared as much as I did in hopes of learning from ppl who've been dealing with similar stages & issues I'm not looking for expert opinions, advise nor doctors so no worries. Simply looking for thoughts, experiences & best guesses to help me figure out what's going on 🙂

I hope more add their experiences & thoughts.

[nash2 Partner in reply to NeverBeen2Spain]

Fibroscan is often used to broadly classify the stage. This discussion shows how the stiffness is used in the presence of different kinds of disease. It is a complex diagnostic question

mskcc.org/cancer-care/patie...

I didn't mean there were toxin tests. The source of liver damage may be from exposure to toxins in the past. Heavy use of Tylenol for example or any of a wide variety of chemicals can be harmful. Binge drinking is a culprit as are lots of OTC supplements. Many paths lead to liver disease and unless the cause is clear you can drive yourself crazy looking for something to blame.

In almost all cases the tool available to use is our diet and exercise.

[NeverBeen2Spain in reply to nash2]

That explains a lot, thank you!! I've never liked alcohol or used a lot of supplements, though I have taken some supplements & Tylenol but never ot 43minver the limit & always with full glasses of water.

Since my issue is unknown but seems to be advancing quicker is the reason I'm trying to understand better to eliminate the issue/ slow it down as much as possible.

I'm doing my best not to eat processed foods, whites, starches or seed oils etc. I'm also gluten sensitive & still am learning how to do that on certain things, especially getting my grains in.

I'm so glad I found this site, It's really impressive how much everyone helps each other & shares their knowledge & experiences. I can't thank you enough.

[NeverBeen2Spain]

Thank you so much Wayne, I really appreciate you & all you do. I must apologize, your response went into my spam folder. I'm at the doctor's office and get back with you.