Questioning no cirrhosis diagnosis...

[byebyeC]

Hi all

So... After reading through many of the posts here, I'm realizing how critical it is to know, for certain, whether or not any cirrhosis is present for tx to be a success.


Forgive the long winded nature of the following, please:

In October of 2014 I had an emergency gallbladder removal laparoscopically. While the surgeon was in there, he took a looksee at my liver and put in his notes that it was "ropey", then mentioned I had a previous diagnosis of cirrhosis, but I actually hadn't.

I gave his notes to my GE, and he said he'd run tests of his own. He ordered a long list of blood tests, liver panel, cbc, vl etc. and an abdominal ultrasound. Not the thumping noise kind I've read about here. Just a normal ultrasound. He diagnosed as no cirrhosis based on the results...

Fear is creeping in. If I actually have cirrhosis, I should be taking these meds for 24 weeks, not the 12 I'm prescribed. People are relapsing if they're not given the appropriate tx length... 

I've told my GE, given him the surgeons notes. I pressed the nurse to give me more information or an explanation of how he came to his conclusion. Questioning her, or him through her, is apparently a very bad idea. She turned openly hostile and told me he knew what he was doing and didn't even pass on my concern to him. She basically just shut me down.

I'm almost at the 2 week mark. Getting that blood work done Monday. No time to jump this Dr.'s ship.

Any suggestions or info would be greatly appreciated! <3 to all y'all fighting this wee beastie

[gnatcatcher]

Hi, byebyeC --

FWIW, none of the ultrasounds I've had during the watch-and-wait or just before treatment detected cirrhosis, yet the FibroScan put me at F4. Some people call a FibroScan a type of ultrasound, but you wrote "normal ultrasound," so I assume you haven't had a FibroScan. If you haven't had a liver biopsy, was there a FibroSure or FibroSpect or FibroMAX or similar among the tests your GE ordered? If not, I wonder how your GE is sure there's no cirrhosis.

Not that any of the tests is 100% accurate. A biopsy might miss cirrhosis if it is present. Two tests may disagree (my FibroScan came back F4 cirrhosis, but my FibroSure came back only F2, and people on these forums have had the reverse happen). My hepatologist is going with the FibroScan because I've had Hep C for 44 years (and submitting the F4 to insurance certainly helped get me the Harvoni), but I question it because I don't have any cirrhosis symptoms and I do have abdominal fat, which someone's GE said can result in a too-high FibroScan score. (Fortunately, with Harvoni, the protocol for Tx-naive is the same with or without cirrhosis.)

Looking at your signature, you got an excellent, fast VL drop from the Vpak+Riba, and your ALT and AST weren't bad to begin with. But it looks like your Alt has risen? I hope others taking Vpak+Riba will be able to comment on whether that's usual.

You'll soon have 2-week lab results. You have a right to hard copy of those results and the earlier ones (the GE's office may charge for the photocopying). Would you want to contact AbbeVie (https://www.viekira.com/proceed-support) before or after you get those results, to see what they advise?

HTH,

Gnatty

[byebyeC]

Hi gnatty,

Thank you for all of that info. I'm having a hard time getting the info on what tests were done. I'm thinking maybe I'll just ask the lab and imaging folks to send all of my results to me that they've done so far.

Are the fibrosure, fibrospect and fibromax blood tests?... I haven't heard that brought up or seen it on the few labs I do have on hand. I've just added an app that will send any further test results to my phone from now on. But, what they've already done is def pulling teeth from my GE

I've had hepc for 32 years and have that awesome belly fat as well... Guess I'm gonna have to go all Terminator on them to get the real deal, (immediately reconsiders! 'cause  I can't change docs midstream and I need my nurse and Dr. to not be adversarial) waaaa waaaa waaamp

Philly did send me a link about Viekirans w riba having up to 5x normal alt, not good long term, but acceptable short term. So, I'm good there

I am hoping because I'm having such a quick positive response that I'm kvetching for nothing (I am extraordinarily talented in this arena ) I SOOOO want this cure to stick and for all of the sx and bodily healing that will have to happen afterwards to not be for naught.  Guess I'm gonna have to think positive and let go and let God...

[byebyeC]

By the by gnatty,

You are a literal treasure trove of information!!! Extreme mad props to you! You make take a bow as I salute you

<3 bye

[gnatcatcher]

Glad Philly filled in the gap. Yes, FibroSure, FibroSpect, and FibroMAX are blood tests. FibroMAX actually includes FibroTest and a few tests for other things. Some insurance companies consider all of them experimental, so if your GE didn't order one of them, that could be why.

Excellent that you can get labs sent to you. -wish there were a test for cirrhosis that is 100% accurate, but there isn't. All of us Hep C'ers have to live with uncertainties. Even the people who get the max treatment length aren't guaranteed a cure -- the odds just get a bit higher.*  "Let go and let God" is great, but I don't think God would be offended if you also contact AbbVie support for a second opinion.

Wishing you peace,
Nerdy Gnatty

* A local hepatologist gave a presentation a few nights ago in which he summarized the cure rate improvements with the various treatments over the years:
1991: 16%
1998: 35%
2001: 44%
2011: ~70%
2014: >95%
We have a lot to be thankful for! The current treatments are much easier to stomach, and new treatments expected in 2016, 2017, and 2018 will continue to shorten treatment times.

[byebyeC]

Thanks gnatty

You're absolutely right. He won't mind at all if I call Abbvie. That's an excellent idea! Blaming brain fog that I couldn't come up with that since I just suggested that to another user on another thread!!! Oy VAY meeee head

We are indeed blessed to be getting tx at this particular time

[KimInTheForest]

* A local hepatologist gave a presentation a few nights ago in which he summarized the cure rate improvements with the various treatments over the years:
1991: 16%
1998: 35%
2001: 44%
2011: ~70%
2014: >95%

I LOVE seeing this list, Gnatty! It makes me feel great just to look at it. Thank you for posting it! All of us here have lived to see and reap the miracle!

kim

[Cal]

BebeC,
Firstly is that you in your avatar?  You big gorgeous spunk? the only 2 ways if assuring cirrhosis or not is through fibroscan or biopsy. Fibroscan is the most widely used here. Going by your fantastic VL drop I'd say not, but do get as test if some sort at least for peace of mind. Cal

[byebyeC]

BebeC,
Firstly is that you in your avatar?  You big gorgeous spunk? the only 2 ways if assuring cirrhosis or not is through fibroscan or biopsy. Fibroscan is the most widely used here. Going by your fantastic VL drop I'd say not, but do get as test if some sort at least for peace of mind. Cal

Hi Cal!

Aww shucks! Yes, that's me, wearing my "I turned 50 today Birthday Crown", lol. I wanted to do a pic from the get go, but we older folks and technology...  Took me finding DM's thread on how to do it (plus an entire night of riba speeds and anxiety kept me up all night, so what else would I do with all that time? teehee, !)

I am going to call Quest Labs and ask them to send me copies of all of my labs from the beginning. Then I don't have to cheese off my nurse They ran a boat load of labs at the start, so maybe a fibroscan, fibrosure or fibromas is why my GE is so certain in his dx )(?)

How're you doing today?...

[julu49]

i Bye Bye,
I don't know if there is any "for sure" test for cirrhosis. I had the Fibro Scan but the young gals who did the test were struggling. They were confused  because they said my liver was up too high in my body. doesn't give you much confidence in the results. Has your doc seen that your eyes are yellow? What does he say about your labs going up instead of down. Don't let him bully you. I'm very well known by all my doctors as, well, challenging. Damn right. We have a right to know. Have you had your first test to tell you how you are doing yet? Are you nauseous?  I really hope you get some answers, it's your body. Actually I have to fight for everything in my healthcare setting. I know how it feels. Good luck

[Philadelphia]

My guess is that your doctors have used a plethora of information available through your blood tests, physical examination, ultrasounds etc to give them an educated idea of what's going on. Markers they'd be looking at in your blood tests will include your PT/INR results, albumin, bilirubin, ALT/AST, GGT, Alk phos and there will prob be a few others. They'd be able to see thinks like portal hypertension in your abdo u/s which is an indicator of cirrhosis.

Of course there are other tests they can run like a fibroscan or fibrosure blood test or a biopsy, and I suppose if you are concerned you could ask for them.

[Cal]

Hi Byebyec,
You don't look fifty young lady! Imagine how good your gonna look when you give Hep C the arse?
I think Phily had the same kind of reaction with the bilirubin and the yellow eyes. You need to tell your GP or specialist though. A fibroscan is a bit like an ultrasound. They run a thingy across the liver to test for stiffness. The machine then calculates a number and from that you can tell if you have cirrhosis or not.  Nicer than a biopsy. I've had 2 of those as well, Ouch not pleasant. I haven't heard of the blood tests before so can't help you there. If your Specialist said no then he would know. If it was your GP, then don't know.
I get a copy of every single test they do. They are cc'd to my GP and she prints them off for me. Julu is right you need to kick and gouge for everything you need. Don't be meek, this is it doll and you need to have it right. Sorry to hear about the speeds and anxiety. I had them too around your time. I still get the speeds which is handy for doing jobs, but anxiety comes and goes. That's when I use valium if it gets to out of control. Revolting feeling.
I'm fine, still weak and a little shaky. Awful blurred vision, so excuse any mistakes in typing. That has come and gone twice so far. I am on Day 31. Mid week 5. I find it's ok if I don't have stress but that's impossible. There's always stress of some sort in life. Cal

[Philadelphia]

Btw I'm not sure how they measure bilirubin over there, but over here a normal range is 3-18. When I was two weeks in my bilirubin was 152. It's the drugs. They hit some of us hard in the first month, but things settle down from there. A friend over here did treatment with an ALT reading of 300 and successfully completed it and cleared.

[julu49]

Happy Birthday, Bye! You are NOT old. Just beginning the best years of your life.
Be strong.
julu

[gnatcatcher]

Philly from Down Under, different labs Up Over here in the U.S. may have different reference ranges for bilirubin. Mine give a reference range (normal range) of 0.1 - 1.2 for Total Bilirubin and 0.0 - 0.3 for Direct Bilirubin.

byebyeC, here's a good explanation of bilirubin tests: http://www.mayoclinic.org/tests-procedures/bilirubin/basics/why-its-done/prc-20019986  So, as Cal suggests, your yellow eyes may be because of high bilirubin caused by the drugs.

Philly, my ALT hit a high of 299 (reference range 8-22) in February of 2014, yet I've had no trouble clearing when tested 4 weeks into treatment. These drugs are truly amazing!

[Cal]

Gnatcatcher,
I agree these drugs are truly amazing. I still keep thinking I should be sicker or have more sxs and what's with just taking a few pills?? Thank goodness for all orals! Cal

[byebyeC]

i Bye Bye,
I don't know if there is any "for sure" test for cirrhosis. I had the Fibro Scan but the young gals who did the test were struggling. They were confused  because they said my liver was up too high in my body. doesn't give you much confidence in the results. Has your doc seen that your eyes are yellow? What does he say about your labs going up instead of down. Don't let him bully you. I'm very well known by all my doctors as, well, challenging. Damn right. We have a right to know. Have you had your first test to tell you how you are doing yet? Are you nauseous?  I really hope you get some answers, it's your body. Actually I have to fight for everything in my healthcare setting. I know how it feels. Good luck

Hi Julu! Nice to hear from ya

Good to know. Maybe I don't need to flip out over everything tx related, lol. That's a very weird thing for the scan people to say. How high could your liver be???

I am generally a pit bull with docs. This feels different to me. What happens to me mid tx if I make her mad by asking a question on the wrong day?... I've never felt so vulnerable and this lady is either going through something awful or ...  :/

Nauseous every day about 3 hours after taking meds, but phenergan helps if I remember to take it about 2 hours after meds. Getting pretty good at remembering haha My GP did see the yellow. That's why I got the new numbers in my signature. It's not too bad, but bili is going up. Apparently, alt going up to 5x above normal is "normal" with VP and riba. I got reading through Philly's blog and she had this happen early in tx and through it as well. I guess we're just lucky gals 

2 Weeks of tx labs on Monday, yay!

Thanks for checkin on me Julu!

How's tx treating you?... Sides getting better or the same? New numbers for you?...

And, thank you for the not old comment Just feeling ancient right now, tx butt kicking... You are right though. Definitely the best years are to come! Good to know we'll get to have them, God willing, now that we're getting tx! Cheers to that!

[byebyeC]

Hi Byebyec,
You don't look fifty young lady! Imagine how good your gonna look when you give Hep C the arse?
I think Phily had the same kind of reaction with the bilirubin and the yellow eyes. You need to tell your GP or specialist though. A fibroscan is a bit like an ultrasound. They run a thingy across the liver to test for stiffness. The machine then calculates a number and from that you can tell if you have cirrhosis or not.  Nicer than a biopsy. I've had 2 of those as well, Ouch not pleasant. I haven't heard of the blood tests before so can't help you there. If your Specialist said no then he would know. If it was your GP, then don't know.
I get a copy of every single test they do. They are cc'd to my GP and she prints them off for me. Julu is right you need to kick and gouge for everything you need. Don't be meek, this is it doll and you need to have it right. Sorry to hear about the speeds and anxiety. I had them too around your time. I still get the speeds which is handy for doing jobs, but anxiety comes and goes. That's when I use valium if it gets to out of control. Revolting feeling.
I'm fine, still weak and a little shaky. Awful blurred vision, so excuse any mistakes in typing. That has come and gone twice so far. I am on Day 31. Mid week 5. I find it's ok if I don't have stress but that's impossible. There's always stress of some sort in life. Cal

Thank you Cal

It's all smoke and mirrors   I'm putting that crown back on for a month when I get SVR!

You're right about Philly. I read that on her blog too. That really helped me to be fairly unconcerned about it to be honest. It's light yellow. They looked at it, ran labs, it's all ok, if they go darker, I'll head back in. Going to Dr.'s and waiting, it what we hep warriors do best! (heard that from a gal named Cal, haha!) Might have to hit up my GP for the anxiety meds if this keeps up. Not used to anxiety at all, very very uncomfortable. Stress yes, anxiety is new. 

It was my specialist that said no cirrhosis. It's just weird that my surgeon, who actually laid eyeballs on my liver said ropey, specialist sees that in surgeons notes, then says nope, my tests say no...

I've got an app now to get further lab results sent to my iPhone. I'll just have to ask for the previous ones.

Funny how the definition of "fine" has changed for us huh? Shaky, tired, weak and blurred vision is fine these days So glad we have each other to know the real deal 

[byebyeC]

Btw I'm not sure how they measure bilirubin over there, but over here a normal range is 3-18. When I was two weeks in my bilirubin was 152. It's the drugs. They hit some of us hard in the first month, but things settle down from there. A friend over here did treatment with an ALT reading of 300 and successfully completed it and cleared.

Hi Philly,

Normal here is 0.3 to 1.9. So, I'm nowhere near the range above that you were, yet. Wow, 300! Not "good", but good to hear. Knowing you've had the same issues is really helping me stay calm about this stuff. So, thank you.

[byebyeC]

Philly from Down Under, different labs Up Over here in the U.S. may have different reference ranges for bilirubin. Mine give a reference range (normal range) of 0.1 - 1.2 for Total Bilirubin and 0.0 - 0.3 for Direct Bilirubin.

byebyeC, here's a good explanation of bilirubin tests: http://www.mayoclinic.org/tests-procedures/bilirubin/basics/why-its-done/prc-20019986  So, as Cal suggests, your yellow eyes may be because of high bilirubin caused by the drugs.

Philly, my ALT hit a high of 299 (reference range 8-22) in February of 2014, yet I've had no trouble clearing when tested 4 weeks into treatment. These drugs are truly amazing!

Thank you Gnatty,

I stayed cool about the yellow eyes because I'd read Philly's blog, thank Heaven. The alt thing did freak me for a bit. Wow, 299. Good to know it clears

[Philadelphia]

They may talk to you about reducing your riba dosage. It's a balancing act. My specialist ran a ribavirin level test and it showed i was over-absorbing it and had very high levels I my system. He felt comfortable about reducing it. I still cleared, although I am still waiting to see if I hit SVR12.

[Cal]

Phily,
And we end, up waiting again. Waiting waiting.....Cal

[byebyeC]

They may talk to you about reducing your riba dosage. It's a balancing act. My specialist ran a ribavirin level test and it showed i was over-absorbing it and had very high levels I my system. He felt comfortable about reducing it. I still cleared, although I am still waiting to see if I hit SVR12.

Hi Philly

Everytime I see your name on a thread I start hearing Elton John in my head... Phil-a-del-phia Free-dom! I luh-huh-huv you. Yes I do! Just wanted to share I find it very fitting since you're getting FREE!

Going in for 2 week labs tomorrow. Yay!

I am taking 3 ribas in the am and 3 in the pm... Still waiting on a call back after giving my specialist my last weeks labs... She did say they might do "some things differently". 

[Philadelphia]

Philadelphia is actually the name of my horse. Philadelphia Story after the Katherine Hepburn character.



and before you ask, that's my daughter, not me.

[Philadelphia]

Or Hover Pony as we like to call her.

[byebyeC]

Those are AWESOME Philly!!!

Thank you for sharing! Looks like your daughter is quite the sport!

[julu49]

Hi Bye,
I sure hope you don't think I said anything about flipping out over every little thing. I did NOT. Never would. After all, I have them too. Can you go to a different doctor? Request a new one? Yours shouldn't be treating anyone that badly. I had a psych do that to me. Once. I called member services, reported him and he was gone not only that I had the top guy as my psych. Feels kind of weird though, he works mainly with kids who have big troubles. I haven't seen him in years, but really you don't have to put up with her abuse. It is abuse. If your eyes are yellow and your billi is high it could be something else, you gallbladder, pancreas, a stone that's stuck, it's not right. Go forth and find out what the hell is going on with you. Find your inner pit bull and let it shake that doc around a little. I worry about you.
Thanks for asking about my sides, much better, they crop up here and there but are better. What is fibrosure?

[julu49]

Hi Phil,
Wow! What a beautiful horse and rider. I'll bet you are so proud.
julu

[byebyeC]

Hi Bye,
I sure hope you don't think I said anything about flipping out over every little thing. I did NOT. Never would. After all, I have them too. Can you go to a different doctor? Request a new one? Yours shouldn't be treating anyone that badly. I had a psych do that to me. Once. I called member services, reported him and he was gone not only that I had the top guy as my psych. Feels kind of weird though, he works mainly with kids who have big troubles. I haven't seen him in years, but really you don't have to put up with her abuse. It is abuse. If your eyes are yellow and your billi is high it could be something else, you gallbladder, pancreas, a stone that's stuck, it's not right. Go forth and find out what the hell is going on with you. Find your inner pit bull and let it shake that doc around a little. I worry about you.
Thanks for asking about my sides, much better, they crop up here and there but are better. What is fibrosure?

Not at all Julu!!! Please don't think that. Poking fun at myself more than anything.

I know I'm taking a semi-bad/poor position and being a giant wimpy mcwimpy pants   I've never felt like this. If I didn't like a doc, I'd just leave and find a better fit. I'm actually scared to tick this nurse off. She's cut me off before on important questions. If I wasn't mid tx, in the fight of my life, I throw them over after giving them a piece of my mind then report them to the medical board. I just need them to stay on my side for ten more weeks... Bad thing about living in Alaska, there're few specialists to cover the population here. I had to wait 90 days just to get an appointment with this guy. Switching just can't happen here, even though I have great insurance. I'm in a box, till EOT... Thank you so much for sticking up for me I really appreciate it and I know we're in this together. That helps more than you know!

No gallbladder anymore, but I'm going in for 2 week labs tomorrow. We'll see how those numbers compare. I shall update post haste Thank you of worrying about me, muah!

Very glad you're getting used to your sides and they're getting better. Yay!

I just found out from Gnatty and Philly, that "fibrosure, fibromax and another fibro something or other" are all blood tests that help along with other info to determine whether or not someone has cirrhosis...

We'll just keep soldiering on together!

<3 bye

[byebyeC]

 

[Philadelphia]

It's worth noting that my specialist and NP also ran a battery of additional blood tests and did an abdominal u/s to check nothing else was going down with my Bili levels. It is a well-documented side effect but they wanted to make sure there were no underlying issues.

[byebyeC]

Ok, Thank you Philly,

That gives me the info I'll need when I talk to me GE's nurse tomorrow, before me 2 week labs are run. Seems like I'm having the same things happen that happened to you, but that could be untrue... It does make me feel better to know you were fine with the same issues though

Sunshine and rainbows to all you warriors!

[Philadelphia]

If I can find the other tests they ran I'll post them here.