More confused after GI consult - Living with Fatty...

Living with Fatty Liver and NASH

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More confused after GI consult

ShatteredGrL profile image
23 Replies

So…My scan said f3, blood work says f0, gi said scan is more reliable, but I should get a bx to confirm. He said often blood starts to look normal as you progress to cirrhosis from fibrosis so blood is only good up to a point. However bx confirmation doesn’t change treatment from what he said just closer f/u. But if bx confirms then I do scans and blood work every 6 months, and if I don’t get bx I do scans and blood q6 months. If next scan is better then we assume 1st scan overestimated and scan in another year (why would we not question the second scan?). So bx could prevent a lot of expensive fu so do it or not much gain so don’t do it? The consult was not very helpful. Would you do bx or no? HELP! Also I clearly have health anxiety so maybe just do it? Or I have health anxiety and these tests are eventually going to kill me so don’t do it. The GI said it’s up to me but the only way to know is the bx but he is leaning toward the scan being correct. He also gave me the option to see OHSU as they have the only full hepatology team in my state. Right now I’m scheduled for fu scan and blood in 6 months but clearly I’m still anxious. So do the bx and if it good no anxiety or if it’s bad worse anxiety 😂 The doctor said if I was his loved one he’d have me repeat scan in 6 months. I’m torn between knowing and not worth the small risk associated with biopsy which while very rare can cause death.

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ShatteredGrL
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23 Replies
ShatteredGrL profile image
ShatteredGrL

Bx= biopsy fu,f/u= follow up

goldencody profile image
goldencody

It would drive me crazy not knowing so I would do the biospy

Marydel63 profile image
Marydel63

Completely understand your anxiety and fear. I had the biopsy prior to that had mri . Knowing for sure that I had cirrhosis sucked but at least there is no doubt. With the official Dux then q6 month MRI and bloodwork.

ShatteredGrL profile image
ShatteredGrL in reply toMarydel63

Do you get MRI elastography?

Marydel63 profile image
Marydel63 in reply toShatteredGrL

Yes

ShatteredGrL profile image
ShatteredGrL in reply toMarydel63

Did bx and MRE show same results?

Marydel63 profile image
Marydel63 in reply toShatteredGrL

Yes both showed cirrhosis,

Jkf1 profile image
Jkf1

I will not get a biopsy and the doctor agrees until it is absolutely necessary. A biopsy is very invasive, Can be extremely painful, And can have serious consequences.. And you still may not get an accurate result if they do not take samples from affected areas.

ShatteredGrL profile image
ShatteredGrL in reply toJkf1

I had one in 2012 at that point I was F1. It was painful and they did no sedation, pain meds, or even lidocaine to numb the skin. It was very nerve wracking because I had to hold my breath for so long and he said if I didn’t I could end up messing it up and hemorrhaging.

Wainsworth profile image
Wainsworth

i was in a very similar situation as you. My blood work was showing F1 and the scan was showing cirrhosis. I was scared but i went through with the biopsy. The biopsy was not very painful at all. It takes about 5 minutes and sadly i did get my answer, i was diagnosed with cirrhosis. This all started 3 and 1/2 years ago. I am participating in a clinical trial so i have had a couple more biopsies. I would rate the pain level between 2-3 for the biopsy. It doesnt last very long. They gave me Tylenol in my IV and it took care of the discomfort. By the time I was released to go home from the hospital, i was good to go. I am sending love and prayers your way. This is a scary journey.

ShatteredGrL profile image
ShatteredGrL in reply toWainsworth

in my area they are done by interventional radiology at an imaging facility so not in the hospital which also makes me nervous. How did it change your treatment?

Wainsworth profile image
Wainsworth in reply toShatteredGrL

The BX was part of the tests i had to do to get approved to be part of a clinical trial. Once i was approved for the clinical trial, i was prescribed medications that i would not have normally had access too. I was also given meds to numb the area so the bx was not painful.

Rcjb profile image
Rcjb

Have you had endoscopy to check for varices in your esophagus? I have cirrhosis, which was caught early. In addition to scan, I had endoscopy (twice now) and two varices were found, caused by liver damage.

I had a scan three days before I went to the hospital feeling awful. That scan on Friday (no contrast) found nothing. Same with ultrasound.

Scan at ER with contrast showed the cirrhosis, enlarged spleen so I went to a hepatalogist. I will soon get my third scan (with contrast) in three years. I’m thinking of skipping annual endoscopy.

Liver biopsy scares me. A friend hemorrhaged during one and was in ICU for week or so.

Find the liver specialist doc recommended and make appointment. Sometimes the appointments are months out.

ShatteredGrL profile image
ShatteredGrL in reply toRcjb

I had en endoscopy 2 years ago for a different abdominal pain which they said was normal aside from the H pylori which was causing my symptoms . I get a repeat colonoscopy next year so I’ll ask for egd again. This time I’m having GI do it instead of Gen Surg.

Kjun54321 profile image
Kjun54321

I had same for diagnosis. My hepatologist performed a biopsy during an endoscopy. Less invasive. I was eventually diagnosed with NASH F1. Better than f3 cirrhosis as given by fibroscan.

FlippinOut profile image
FlippinOut

I’m in very similar situation as you. My regular blood work is normal but my FibroTest (blood test) showed F3 fibrosis. Had a CT with contrast that showed nodular liver contour, likely cirrhosis. My doctor is calling it cirrhosis and says a biopsy wouldn’t change anything and isn’t necessary.

Some folks on this forum say a MRE is the best way to see the condition of the whole liver. Like you, however, I want to know but I don’t want to know. I’m worried all the time and can’t think about anything but my liver. The anxiety is awful and I wonder if knowing more would help or make it worse. I don’t know what to do either.

All the best to you. I hope you get some peace of mind whatever you decide.

Anita

ShatteredGrL profile image
ShatteredGrL in reply toFlippinOut

Same I’m like could help but also will I trust the biopsy since the damage is spotty if the bx is done in a not affected or minimally affected area I could still be staged wrong. Not uncommon for bx to be understagged. My GI said I’d have to travel 3 hours for MRE and he believes the bx is better but everything I’ve read says that he’s wrong because the MRE shows the whole liver.

ShatteredGrL profile image
ShatteredGrL

for anyone that’s had an MRE, how was insurance coverage?

Dasil7 profile image
Dasil7

Did you always have normal alt and ast?

ShatteredGrL profile image
ShatteredGrL in reply toDasil7

No they used to be elevated

Alterity profile image
Alterity

I had a biopsy within 6 months because I was changing research programs, and if the procedure is followed the right way everything is fine. I'm not sure where OHSU is at, but I'm in Ohio and go to OSU and have since 6 months of knowing I had NASH. That was 21 years ago and 3 Drs later. My present Dr. is really into finding a cure for NASH. I see her about every 3 to 4 months. I just had an Ultrasound and she said another one in 6 months. I have both scopes in October. It's been 3 years. She picks up the phone and calls you and she always answers e mails on My Chart personally. I like OSU because they are always researching, so go to the Dr. they recommend because family doctors and even some gastroenterologists no nothing about NASH. You need to be with someone who knows what fatty liver and NASH can do to the body. It is true, my blood work shows nothing and my old Dr who retired from OSU said when my blood work changes, I'll be on my last leg. Good Luck.

Cats2018 profile image
Cats2018

Would have the biopsy. I was anxious & apprehensive in 2018 when my first FibroScan indicated NASH either F2 or F3 and doctor recommended biopsy. But after having the biopsy (which confirmed NASH F3) I realized it was not that bad. I have since had 2 more biopsies - a total of 3 so far - and a 4th is now being considered. I haven’t been as anxious about any of them since the 1st one when I wasn’t sure what to expect. The biopsy is most accurate. My liver enzymes were originally slightly elevated which is why my Gastroenterologist suggested the FibroScan. As soon as I changed my diet and started to lose a little weight my liver enzymes became normal - but I still have NASH F3 even though enzymes are now in normal range

ShatteredGrL profile image
ShatteredGrL

what makes it NASH specifically? I thought labs had to be off otherwise it would be nafld

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