Report from Hep on fibroscan : He said no... - PBC Foundation

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Report from Hep on fibroscan

gwillistexas
gwillistexas
62 Replies

He said no scarring in liver and no fatty deposits.

Happy girl. 💃

62 Replies
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VeeWat

Great. What were your scores?

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gwillistexas
gwillistexas
in reply to VeeWat

The only score I have at this time is 9.5. When I was seen no my GI’s NP, she gave me a copy. So I’m not sure how I might get a copy now. I just know the technician said all scores had dropped from last year.

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gwillistexas
gwillistexas
in reply to VeeWat

Well, that didn’t come out right, lol! When I was seeing my GI’s NP. Gotta love autocorrect 😅

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ninjagirlwebb

You can ask for a copy or if you have access to the patient portal, results should be there as well.

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gwillistexas

Yes, I plan to ask for a copy. I will see my GI’s NP in between visits with hep and she will give me a copy. I will see her in October v

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Filistines

Hip Hep! He gave you good news! I'm pleased for you.

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gwillistexas

Thank you!

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Oldham12

Hi

I'm really pleased you got good news. Take care Lynne

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gwillistexas

Thank you!

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Oldham12

You are very welcome. Take care Lynne

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gwillistexas

I will. You do the same 🦋

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Oldham12

Thank you.

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Ellewoods1

I’m so happy for you!!😀

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gwillistexas

Thank you!😁

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Skypony

Wonderful news! So happy for you x

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gwillistexas

I’m happy. Have been on OCA almost 2 years. Guess it took that long to actually see it was helping as far as keeping fibrosis away from my liver. Will continue on...😀

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Skypony

Yes, a lot of this journey is about stoicism and optimism. An excellent lesson for life in general!

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gwillistexas

😊👍

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Ballymahon2

Great news

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gwillistexas

😊

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ninjagirlwebb

Good!

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Candy12

Brilliant news, 😊

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gwillistexas

Thanks!

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Biddyb

Well done like me your results were great just makes you feel great. Long journey but so good to know whatever’s supposed to work is working. My LFTs came back all in range and no fibrosis or cirrhosis from my fibroscan. We should celebrate our good news. Keep up the good work

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gwillistexas
gwillistexas
in reply to Biddyb

G’morning. Yes ma’am. I especially like to share any good results with Ocaliva because there are so few (that I’m aware of), who take it alone.

😊🦋

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Biddyb
Biddyb
in reply to gwillistexas

Yep good news is over ruled by bad in every walk of life. So good to hear good news on this site. Keep up the good work

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gwillistexas
gwillistexas
in reply to Biddyb

😎

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butterflyEi

great news. so pleased for you.

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gwillistexas

Thank You!😊

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Ellyne

Great news! Happy to hear this!!

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gwillistexas
gwillistexas
in reply to Ellyne

Thank you!

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Sydgal

Hi

Good to hear your results have improved.

Have you had a liver biopsy? I know it not offered much in other countries but I was diagnosed few months ago, liver biopsy showed Stage 3 Fibrosis!! However Fibroscan showed 5.4 Stage 1 so I had 2nd Fibroscan a few weeks later and it showed 5.8 Stage 1 such inconsistencies between liver biopsy and Fibroscan!!! Some people say liver biopsy is more accurate some say Fibroscan is ..!! Who knows.

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gwillistexas
gwillistexas
in reply to Sydgal

Thank you. No I’ve not had a biopsy. My hep sees no need unless lft’s go up considerably. I think he’s mostly referring to AST. Then he might do one to rule out anything else going on.

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liver-bird

That's great news Gail - really happy for you. X

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gwillistexas

Thanks!😊

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Ktltel

😃🙌🙌🙌👏👏👏👏👏👏❤

Great great news!!

Stella

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gwillistexas
gwillistexas
in reply to Ktltel

Hi Stella. Yes ma’am. I was slightly relieved. You doing ok?

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Ktltel
Ktltel
in reply to gwillistexas

So far, so good. I have labs in a week. Still working on my weight as usual. Now that my company is gone, that should help. I'm only on URSO. I have my 2nd MRE in December. We will see if things have progressed. If I have, I'm hoping to try Seladelpar if I can get in on the trial. Seems everything I take from my RA drugs to simple water pills and the Ocaliva too, turns my stool pale, pale scary light color. Then my ALT and AST go out of whack too and I'm forced to stop taking anything else besides URSO. Losing weight should help with both my RA and swelling. I feel ok otherwise only fatigue and dry eyes bothers me. Still, people in far worse shape plugging away with work and family. I cant complain. ❤ ...but I guess I just did.🤭

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gwillistexas
gwillistexas
in reply to Ktltel

I understand. We seem to eat more when we have company. I hope your MRE shows no progression. I know you’re anxious to know. So far I’m not on other drugs. But I’ve not seen a rheumatologist yet either. I know RA , lupus and Sjögrens was ruled out when they sent labs to Austin when first diagnosed. But I do know without being told I have Reynauds. It only bothers me in the cold weather. I pray things will level out for you. And yes, we have so much to be thankful for.

You hang in there. Stay in touch ❤️

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Ktltel
Ktltel
in reply to gwillistexas

I will. Prayers you keep doing well. ❤❤

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gwillistexas
gwillistexas
in reply to Ktltel

Thanks! 🌹

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lilygrower

Wonderful news!! I think the fibroscan can be very accurate because biopsy just samples one tiny area. When I had my fibroscan, the tech checked about 15 sites very thoroughly.

Lily G

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gwillistexas

Thanks. I’ve had doubt about fibroscan accuracy but my hep says a lot depends on the technician. He orders them all the time. So I’ll trust his word. 😊

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lilygrower

I definitely agree about how the quality depends on the skill of the person performing it. I spent a good hour with a wonderful perfectionist ultrasonographer at Vanderbilt where my hepatologist is located. She did 37 attempts of which 17 were valid to their required specifications. The liver stiffness was 5.5 kPA which was the median measurement with a range of possible error of 0.7 kPA. I was very impressed with her skill and determination and the time she took with me to get the most accurate result.

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ShropshireLass2019

Lovely news and I bet your smiling 🤗 x

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gwillistexas

Thanks! You bet I am😀

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Katiagreece

Brilliant x

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gwillistexas

Thanks!

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mrspeffer2

I needed to hear great news today. HIP HIP HURRAY!!!!!

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gwillistexas

Well, there ya go 😁

Gail🦋

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mrspeffer

💃⚘💙

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gwillistexas

Go girl!😂.

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mrspeffer

Stay strong and give it away!

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gwillistexas

Oh I will! Thanks dear❤️. Take care 😊

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KevinHall10_

Great news....

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gwillistexas

Thank you😊

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Lucky4

That's great, gwillistexas! I'm happy for you. Mine was just done too and I'm happy with the results.

Yeah!

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gwillistexas
gwillistexas
in reply to Lucky4

Thank you! Mind if I ask your score?

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Lucky4
Lucky4
in reply to gwillistexas

Sure. Two years ago it was 8 something and a few days ago 6.2. I have no idea why. My Alk Phos is around 350 but some of my other numbers aren't too bad. I'm glad yours is in the 0-1 as well. This illness can be so unpredictable and random.

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gwillistexas
gwillistexas
in reply to Lucky4

That’s great! 0-1 as in fibrosis stage? According to my score chart I think I’m a 2. I have a couple different charts saved in my phone that I look at. But who knows, if ocaliva continues doing its job maybe y score will drop more. Hope so😊

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Lucky4
Lucky4
in reply to gwillistexas

When I was an 8 I was told by my GI specialist it was a great score and I was in the 0-1 category (closer to the 1 but still good). I've never actually looked it up on the scales. She told me it meant that there's really little if any signs of fibrosis/cirrhosis. I have the occasional drinks/pastries. Actually have gained a bit of weight (not a good thing). I also take ocaliva 5 mg but can only take a tablet every 2 days due to side effects. The only difference is that I'm able to walk more (couldn't for a couple of years due to bone spur surgery that didn't go well).

Maybe I'm the only one who doesn't know this but one thing she did say was that if you've had a meal near the time of the fibroscan, you can get a higher score just because of that so she spent extra time doing it as I'd had lunch a couple of hours prior. Next time I think I won't eat for a while before the scan to get a more accurate reading instead of what could be a higher scan just because it was done too close to a meal.

Yes, I hope your score drops and mine stays that way. LOL

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gwillistexas

That’s a good thing. My first fibroscan score in 2017 was 8.2. GI said F2 mild/moderate fibrosis. When I got score last year of 10.8, I thought I was doomed for sure. Funny how drs are so different. I wish I could gain weight. I’ve lost quite a bit and none to lose. If I could take Urso maybe I would gain. Don’t see it happening though. I eat any and everything I want. I had a quarter pounder with cheese and fries at lunch and I guarantee you not one ounce of fat stuck, lol!

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