How many times did you have other tests before you finally went for a liver biopsy?

[cicada777]

Wondering how many times have you, or your doctor were doing other tests like imaging, or blood test before you finally went for a biopsy? Post-biopsy have you needed more diagnosis tests?

[Cats2018]

Hi cicada,

My biopsy was done fairly quickly after my fibroscan and diagnosis of NASH. I was scheduling for an EGD with my gastroenterologist when I was told my liver enzymes were high and a scan was suggested. I had the fibroscan May 9th, MRI -elastography May 23rd, and liver biopsy May 25th which confirmed NASH stage 3 fibrosis. I consented to a clinical trial with the hepatologist and have had monthly visits for checkup and lab tests every month since then. The clinical trial is just over a year long. I will have additional MRIs during the trial and another liver biopsy at the end of the trial.

[cicada777 in reply to Cats2018]

Thank you Cats2018. I am assuming your doctor saw your fibrosis in the imaging and so went for a biopsy. I do not think many early stage NASH/NAFLD patients might be getting advised for biopsy?

Also, hope the trials are successful! Best luck!

[Cats2018 in reply to cicada777]

The hepatologist told me when I had the scan that I definitely had NASH but only a biopsy would indicate whether I was stage 2 or stage 3. Also one of my scores on the fibroscan was 11 or 14 (I can’t recall) and she said she recommends a biopsy with a number over 7. But then when I consented to the clinical trial, the sponsor of the trial requires an MRE (MRI - elastography) and a biopsy within 2 weeks of consenting. So I was under a time constraint for getting the initial biopsy.

[AllHis in reply to Cats2018]

May I please ask where a second opinion under the title "health care" ends and your clinical trial begans? Was the biopsy and fibroscan, for example, something you had to fight for, or part of the testing covered under the study? I really don't want to ask personal questions, but I'm new to this "bold approach" with doctors.

All I have is a reasonable suspicion of Fatty Liver. This is all I have. A suspicion.

My liver doctor disagrees because the ultrasound and blood work would have showed something.

I feel that my right side under-the-rib pain speaks for itself. (it reminds me of my gall bladder symptoms. Not your typical symptoms: Rib pain, nausea, and neck pain... All back and magnified 100x's! My neck is so tight its effecting all parts of my life.

[Cats2018 in reply to AllHis]

Hi, I don’t mind answering your questions. The gastroenterologist only knew I had fatty liver & sent me for the FibroScan of the liver. I had my scan at a clinic that offered a free scan as they do clinical trials there. The hepatologist there told me right away after the scan that I had NASH and because she knew it was stage 2 or 3 she said I should have a liver biopsy right away. Then she told me about a new clinical trial that she thought would be good for me to participate in. I agreed to the clinical trial and the sponsor of the trial required the MRI - Elastography & a liver biopsy within 2 weeks. The sponsor of the trial paid for the MRI and the biopsy in my case. So I didn’t have any problem trying to get an approval. My insurance isn’t involved for the duration of the trial which is just over 1 year. Once the clinical trial is done, I intend to continue care with the same hepatologist at the clinic using my insurance. I’m retired and on Medicare. Once the biopsy was done I waited to hear if I qualified for the clinical trial. There are guidelines with each trial and sometimes people end up not qualifying. I feel fortunate that I had the option of the trial and that I did qualify. It sounds like lots of people either don’t have access to a hepatologist or clinical trials, and many others just don’t qualify for some reason or another.

[Cats2018 in reply to cicada777]

Cicada - I just pulled out my initial fibroscan results. With 2 different scans the results were: CAP score for stratosphere: 400 & kPa results for fibrosis 11.7. The 2nd scan the following week indicated CAP score of 369 & Fibrosis score of 14. So both times the fibrosis score on the scan was above the 7 and that’s why the hepatologist wanted the biopsy done right away.

[nash2 Partner]

My cirrhosis was discovered by accident in 2010 but misdiagnosed. I had multiple blood and US tests for 5 years before being diagnosed correctly and getting a biopsy in 2015. The delay cost me a lot of health.

[Cats2018 in reply to nash2]

I think that’s one of the most frustrating things; that we could’ve been told before we were at such advanced stages so that we could’ve done something about it sooner. It’s really sad that so many physicians don’t take this seriously.

[nash2 Partner in reply to Cats2018]

Solving that is the key goal of the foundation. We plan to do that with our screening program

fattyliverfoundation.org/pi...

my frustration with personally having that experience is what caused us to create the foundation in the first place

Wayne

[Cats2018 in reply to nash2]

So thankful you did! I really like the information you are providing for all of us

[Fight4yourRight2Live]

I never had a liver biopsy until Post transplant

[katqueen68]

Had recent MRI, last one 4 years ago. Lots of negative changes including a lesion that had grown. Waiting for biopsy results.

[Bbohnie]

My Primary thought I had a pulled muscle do we waited 6 weeks to see if it would get better then blood work done and he noticed elevated liver enzymes, repeated like a month later. sent me to Gastroenterologist and Heptalogist. I can't have MRI due to pacemaker do they did ultrasound and xrays, more blood work, then biopsy to rule out cancer. After 2 years my Primary requested more testing to see what if anything had changed. At this point the fibroscan was ordered. Fortunately I had drastically changed my diet and cut out any added iron and limited iron intake so my labs came back ",normal" My office person read some nonsense of a report and I demanded to see Dr or Nurse practitioner as I knew this was wrong. It was correct but I know I have to stay vigilant and on guard because this is not going away. If I eat anything fried or too fatty, my side hurts.