Hepatologist : I was diagnosed with fatty... - PBC Foundation

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Hepatologist

Yankeerose3 profile image
19 Replies

I was diagnosed with fatty liver then PBC after a biopsy in 2013. I been on urso ever since & been getting ultrasounds every 6 months along with blood work. My blood work has been normal but ultrasounds since shows cirrhosis, PBC & fatty liver. My GI DR never told me I have cirrhosis and claimed liver don't cause pain but just seen a hepatologist who says it does and will be getting my first fibroscan. Looking forward to knowing just how bad it is. Anything I should ask?

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Yankeerose3 profile image
Yankeerose3
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19 Replies
ninjagirlwebb profile image
ninjagirlwebb

Does the hepatologist have all your ultrasounds? Maybe you want him to take you through at least the most recent one & ask him to discuss your fibroscan results in context of the ultrasound to get a better understanding. Also if there is anything else you or your medical team should be doing to manage the condition to keep it from progressing. You might also want to transition to seeing the hepatologist going forward if you feel he/she better fulfills your care requirements vs the GI. Just some thoughts.

Yankeerose3 profile image
Yankeerose3 in reply to ninjagirlwebb

Thanks. I requested a copy of my biopsy, all the ultrasounds & records that my GI DR has then gave it to him.

Yankeerose3 profile image
Yankeerose3 in reply to ninjagirlwebb

I don't see where I commented, I go back for results of fibroscan on June 4th.. He must not to very worried because test was entered into my chart and he didn't call me

ninjagirlwebb profile image
ninjagirlwebb in reply to Yankeerose3

Wow...that is a long time to wait. I would be frustrated regardless. Does my chart have the score? So at least you know.

I am type A personality...I hate waiting for results.

Lspivey profile image
Lspivey

Prayers for you. Still trying to understand the diagnosis myself. Neex lots of i fo

Lspivey profile image
Lspivey

Prayers to you hun. Still trying to understand the diagnosis myself. Need lots of i formation. Trying to put this puzel together.

Yankeerose3 profile image
Yankeerose3 in reply to Lspivey

Thanks... prayers to you too

gwillistexas profile image
gwillistexas

Glad to see your hepatologist is ordering fibroscan. It will measure a broader area of your liver for stiffness. My GI prefers it over biopsy. When is your fibroscan scheduled?

Yankeerose3 profile image
Yankeerose3 in reply to gwillistexas

April 21st

gwillistexas profile image
gwillistexas in reply to Yankeerose3

Let us hear.

Yankeerose3 profile image
Yankeerose3 in reply to gwillistexas

Ok. Thanks

Yankeerose3 profile image
Yankeerose3 in reply to Yankeerose3

Now I received a call from my PCP asking me to call her and another few hours later from an cardiology office but I didn't get the messages until I got home from work... After they closed. So stressful!!

mjk98 profile image
mjk98

Funny my GI prefers the biopsy over the fiberscan I've had both done

aliciababe00 profile image
aliciababe00

All of your blood work has always been normal? I’ve asked my GI doc to test me for AMA and he won’t because he says my liver tests are all normal. However I have positive ANA with centromere pattern, my joints aches for no reason, my rheumy says I am cleared of all autoimmune on her end. I’m beyond frustrated. Should I push for this?

ninjagirlwebb profile image
ninjagirlwebb in reply to aliciababe00

You should do whatever makes you comfortable. Maybe go to another doctor for a second opinion.

Yankeerose3 profile image
Yankeerose3

Hey everyone.... Got the results of my fibroscan... Stage 3 cirrhosis, Nash fatty liver & PBC

X2018 profile image
X2018

Hi dear,you diagnosised in 2013, what was your stage of cirrhosis at that time? You took Urso since you've diagnosised. last time you had fibroscan result was cirrhosis stage3, was your condition been improved or progressed ? What is your I dear?

Yankeerose3 profile image
Yankeerose3

Hi my (GI) dr then didn't give any stage or information and even when I switched to another dr... April 2018 I went to see an hepatologist on my own and he informed me I was staged at 0-1 back then. Been on ursodol since biopsy in 2013. Had been getting ultrasounds every 6 months but when I was really feeling bad Nov or Dec 2017 I made appt to see hepatologist. He did more blood work and an MRE and informed me I'm stage 3 fibrosis. Last ultrasound had concerns so had an MRI which shows lesions on my pancreas and spleen but no change from last in liver.

Always something

LastMinuteLynn profile image
LastMinuteLynn

I have been told I have cirrhosis and wonder how that is different from fibrosis, or if they are 2 different conditions. Anyone know?

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