Fibroscan

[Ellyne]

Had a fibroscan today. Technician said I did not show a fatty liver or any cirrhosis. Getting a 2nd opinion on my liver biopsy. All bloodwork is within range except AMA and ANA. Put on Urso 2 months ago. So if it’s not PBC what else could it be? This has been going on since July and I want some resolution. Any thoughts? Ellyne

[gwillistexas]

You may have some fibrosis in the bile duct. Your AMA...is it the M2?

[Ellyne in reply to gwillistexas]

Yes it is the AMA M2. I had a titer if 1:640. I had a liver biopsy and it did not show fibrosis in the bile ducts unless granumataous in the ducts means fibrosis. I did have that. The report said it was suggestive of PBS but that I was atypical clinically and histologically and to rule out mimics of PBC.

[gwillistexas in reply to Ellyne]

My AMA was128 & titer 1:60. Tks. Just wondered.

[My-life in reply to Ellyne]

New Mexoco about 15 min to Albuquerque. And you?

[gwillistexas in reply to My-life]

Not sure if you’re replying to me. I’m in Texas

[gwillistexas]

Sorry to post again but when will you know your fibroscan score?

[Ellyne in reply to gwillistexas]

I don’t know exactly. The technician said that they do an average. I think she said it was 5.2.

[gwillistexas in reply to Ellyne]

That score would be great👍

[ninjagirlwebb]

You might be in the preclinical phase of PBC.

The four sequential clinical (symptoms and tests) phases of PBC are:

Preclinical

Asymptomatic

Symptomatic

Advanced

It is important to realize that the time required to evolve from one clinical phase to another varies substantially among individuals. Also, be aware that these clinical phases are different from the pathological stages determined by the liver biopsy. Most importantly, since the diagnosis is often first made between the ages of 30 and 60 years and progression of the disease is usually so slow, PBC does not result in a reduced life expectancy in all patients.

The sequential phases in the natural progression of PBC without therapy

Preclinical

Absence of symptoms

Normal liver tests

AMA positive

Poorly defined; estimated as 2 to 10 years

[ninjagirlwebb in reply to ninjagirlwebb]

This is where it discusses the clinincal stages:

emedicinehealth.com/primary...

[Ellyne in reply to ninjagirlwebb]

Thank you so much for this information. Waiting to hear from the Hepatologist about my liver biopsy. Getting a second opinion.

[mrspeffer]

Hi..Just read your post. I pray your dx of PBC is not true, however; as stated before, you may be just getting started. It's a scary time to think, " oh wow!, this is like a death sentence".

I am terribly disturbed that some technician told you what they did or did not see. That is totally unethical...they are not doctors trained to read scans. Let your Hematologist determine the results along with the Doc that reads scans. They will give you a clear picture of the truth. In the mean time, try to chill...worry seems to elevated LF's.

[Ellyne in reply to mrspeffer]

My hepatologist told me to expect a brief summary from the technician with a follow up report from the dr. That is this hospital’s protocol. I am taking deep breaths and attempting to relax myself as much as possible. And you are right. I could just be getting started.....

[ninjagirlwebb in reply to Ellyne]

Hepatologist did one impromptu for me because I asked him about the technicalities of the scan. Told me we can look at it together after the technician was done. He pulled up charts etc & explained it to me in context of my scan.

[gwillistexas in reply to mrspeffer]

I totally agree. When I had my fibroscan last September, several on here said the technician told them the results immediately. So a few days later I called my drs office. She said technicians do not have the authority nor are they allowed to give results. That has to come from my dr when he reads it.

[Ellyne in reply to gwillistexas]

So there seems to be an inconsistency here on whether technicians can give info or not.

[gwillistexas in reply to Ellyne]

Apparently some drs allow it but where I am, they don’t

[Ellyne in reply to gwillistexas]

Right now waiting to hear from Hepatologist about my slides from liver biopsy and full report from Fibroscan. The waiting is unbearable for me.

[gwillistexas in reply to Ellyne]

I understand how you fell. I’m not one to wait very long for answers or results. All sorts of thoughts go through your mind. I had my ultrasound before the fibroscan. I remember telling the technician how uptight I was. And of course when she had scanned everything, she went back to a certain area on my right side. Of course I’m thinking “hmm, she must have found something”, lol! I tried to find out something but she was giving no info. Maybe you will have results soon. I’ll send up a prayer for you🙏🏻😊

[ninjagirlwebb in reply to Ellyne]

Yes...the waiting is horrible. Once you establish a relationship with your hepatologist, it will get better. They will get back to you sooner once everything is more established. Does your doctor have a patient portal? I communicate with my hepatologist that way. He loves it because he can respond when he is free & no phone tag. Though I do call him if I need to speak to him.

On the patient portal, usually it says give him 48 hours to get back to you. But he usually responds either same day or next day.

[Ellyne in reply to ninjagirlwebb]

There is a patient portal but she says she would rather call and have the conversation. Especially because this is deciding whether I have PBC or something else. She is giving me a second opinion on my biopsy. I believe that you are right moving forward when it is just blood work.

[gwillistexas in reply to Ellyne]

Agree

[ninjagirlwebb in reply to Ellyne]

Yes..speaking to her or seeing her in person is the right thing to do in your situation.

[Ellyne in reply to ninjagirlwebb]

I am hoping to hear by mid week because of this holiday weekend.

[My-life in reply to gwillistexas]

I was a Medical Assistance. Even when we gave flu test and it came back positive. We had to let the dr tell them. Medicail rule. Lol

[gwillistexas in reply to My-life]

I am more confident with my dr reading it. Technicians scan every day but our drs are trained to a higher degree on reading them. I have a copy of my fibroscan which I appreciated.

[gwillistexas in reply to My-life]

Where do you live?

[BethRL]

Akaline Phosphate higher numbers can be connected to bone disease. I read online.

[ninjagirlwebb in reply to BethRL]

That is true. So doctor will test ggt to ascertain whether it is liver related.

GGT plays a key role in the gamma-glutamyl cycle, a pathway for the synthesis and degradation of glutathione and drug and xenobiotic detoxification.[3] Other lines of evidence indicate that GGT can also exert a pro-oxidant role, with regulatory effects at various levels in cellular signal transduction and cellular pathophysiology.[4] This transferase is found in many tissues, the most notable one being the liver, and has significance in medicine as a diagnostic marker.