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Hep C Discussion Forum -> General Discussion -> I went to see a hepatologist in Miami
Post Info TOPIC: I went to see a hepatologist in Miami
TazKat


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RE: I went to see a hepatologist in Miami
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I was stage 0 at 2001  by then 2013 cirrhosis had started. guess it just depends on one's self. we are all uniquely different for sure. glad u got to a hepa.. I love mine.. he always gives me thumbs up!!  lol  that means a whole lot to me. just like the text my granddaughter sent me. I might post what she told me. I had to have a box of Kleenex. lol she is so smart & I love her so much for giving me much needed support.i sure want to be able to see at least one softball game this yr. she is in fast pitch & is very good. already have miss state coach looking at her. she is only 13.. lol  makes me & her mom & dad & rest of family very proud. she is not a quitter so I just got to do what she does.. my role model.. <3



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TazKat Genotype 1A null responder x 3 riba & iterferon twice, relapsed from Incivek 2012 with only 12 weeks left to do. stage 4 mild cirrhosis 4/25/2014/ started sovaldi riba & interferon.. finished treatment 7/17/14  results 7/25  cleared..

 

 
mallani


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Hi Testiva,

Thanks for the reports. They are pretty good and concise. There should be a comment at the start, describing the specimen.  It may be called 'Macroscopic', and would say something like 'The specimen consists of 2 cores of tissue measuring 3 cm in length'. It gives a good idea of whether the specimen is adequate.

You do not have cirrhosis, despite any Blood test abnormalities. You are very lucky that your fibrosis progression is slow. I went from F1 to F3-4 in less than 10 years. Despite the fact that biopsy only samples one or two liver segments, it is impossible to have an intact limiting plate in one segment and cirrhosis in another.

Hepatologists like to allow one stage , so you are F2 at worst. You could afford to wait for Sovaldi/Ledipasvir. Best of luck, and let us know the result of the slide review, although it seems pretty clear.



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Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
Cinnamon Girl


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Hi Testiva, thanks for posting your latest biopsy report which indicates that you don`t have cirrhosis.  It would be interesting if you could let us know what the pathologist says when he`s examined the slides, and also post any other blood results you get.

Sorry you`re suffering badly from fatigue, that could certainly be a symptom of Hep C and it is possible to feel dreadful even without having cirrhosis.  You may well find that once you`ve done treatment you`ll feel a lot better all round. 

 



-- Edited by Cinnamon Girl on Tuesday 3rd of June 2014 11:05:00 AM

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Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
skewedButNotBroken


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Results from 12/09/2002

SURGICAL PATHOLOGY

DIAGNOSIS

1. LIVER BIOPSY:

CHRONIC HEPATITIS C

MILD LOBULAR AND PORTAL HEPATITIS WITH NO HEPATOCELLULAR NECROSIS AND NO LIMITING PLATE NECROSIS 

(GRADE I/IV).

NO FIBROSIS OR CIRRHOSIS (STAGE I/IV).

NO INCREASE IN STAINABLE IRON STORIES

THREE LEVELS SHOW LIVER WITH INTACT LOBULAR ARCHITECTURE. CENTRAL VEINS ARE PRESENT AND INTACT. HEPATOCYES ARE ESSENTIALLY UNREMARKABLE. THERE IS NO FATTY CHANGE AND NO HEPATOCELLULAR NECROSIS

#################################################################################

RESULTS FROM 01/03/2014

Liver CT guided needle biopsy

Chronic hepatitis C

Grade 2 of 4 (mild portal hepatitis without limiting plate necrosis and rare necrotic hepatocytes).

Stage 1 of 4 (negative for fibrosis and cirrhosis)

Three levels show liver with intact lobular architecture. Central veins are present and intact. Hepatocytes are essentially unremarkable with no inflammation in the lobule and no fatty change. A rare necrotic hepatocyte is identified. Portal areas are expanded by a lymphoid infiltrate but there is no limiting plate necrosis. Bile ducts are present and intact. There are no granulomata. The iron stain shows no increase of stainable iron stores. The trichome stain is negative for peri-portal fibrosis., septal fibrosis and cirrhosis. The reticulin stain highlights normal trabecular architecture. The PAS stains with and without diastase show no PAS positive, diastase resistaant, PAS positive material within hepatocytes cytoplasm



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Diag. with hep c in 1992; A3:F2;  GT 1a; IL28B CT; VL 900k, ALT 150, AST 100 on 8/5/2014; SOT 9/5/2014  S/O ---VL 127 after 6 days; VL detected on day 18 but < 15.; --> UND @ EOT+ 1 year SVR!
mallani


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Hi Testiva,

It's important to keep a copy of all your test results.

If you were F1 by biopsy 12 years ago, I doubt whether you'd still be F1, especially as the ALT indicates continuing inflammation. Is it possible to post a copy of the recent biopsy report? Cheers.



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Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
Isiscat2011


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skewedButNotBroken wrote:

I don't have a copy of my latest labs, but I do remember the platelet count was 119 (this has been steadily dropping for years) and the ALT was 162. I would not be surprised if the pathology report was incorrect because as I mentioned on a previous post a while back, 12 years ago, my fibrosis score was F1. 

Whatever the case is I'm getting sick and tired of being sick and tired. I'm ready to seek treatment.

 

High ALT and somewhat low platelets can be indicators of cirrhosis but that is not enough for a definitive diagnosis.  You can have clinical and lab indications of cirrhosis with a liver biopsy staging that falls into the category of F3. That may be what your doctor is referring to as "early cirrhosis."  

Staging is a tricky thing.  If your biopsy was in error you could be at F3, and if your fibrosis progression is unusually rapid it could even be at F4.  



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Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.
Isiscat2011


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Hi Testiva:

Cirrhosis is a possibility if the biopsy results were wrong.  Sampling errors are not uncommon in liver biopsies and they can be off by 1-2 stages.  That is the reason the hepatologist wants to view the slides himself.  

He may end up wanting to do his own biopsy or at least a fibroscan.  That's my take on the situation.  

Something similar happened to me.  It is very frightening to go through.  Hang in there. 



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Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.
skewedButNotBroken


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I don't have a copy of my latest labs, but I do remember the platelet count was 119 (this has been steadily dropping for years) and the ALT was 162. I would not be surprised if the pathology report was incorrect because as I mentioned on a previous post a while back, 12 years ago, my fibrosis score was F1. 

Whatever the case is I'm getting sick and tired of being sick and tired. I'm ready to seek treatment.

 



__________________

Diag. with hep c in 1992; A3:F2;  GT 1a; IL28B CT; VL 900k, ALT 150, AST 100 on 8/5/2014; SOT 9/5/2014  S/O ---VL 127 after 6 days; VL detected on day 18 but < 15.; --> UND @ EOT+ 1 year SVR!
mallani


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Hi Testiva,

That all sounds a bit odd. Could you ask about the Lab. results, to see what specific items are a worry?  If you have a copy, please post your Bilirubin, ALT, ALP, Albumin and platelet count. With a A2 F1 biopsy result only a few months ago, cirrhosis is not a possibility.



__________________

Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
skewedButNotBroken


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I had an appointment with Dr. Paul Martin at the University of Miami Department of Hepatology on the 29th of May. After reviewing my lab work Dr. Martin thinks I might have the beginning stages of cirrhosis. My local doctor in Fort Myers, FL also thought I had cirrhosis based on my lab work. I had a biopsy done in early Feb. of this year and the results were A2 F1. Dr. Martin has requested the slides from the biopsy so that their pathologist can review them. Dr. Martin also ordered a cryoglobulin test.

Now I'm confused, but if my local gastro and a renowned hepatologist thinks my blood work does not correlate with the pathology report for the biopsy then something must be wrong. I know I feel bad most everyday and maybe I do have the early stages of cirrhosis.

Any comments will be greatly appreciated.

 

Thanks



__________________

Diag. with hep c in 1992; A3:F2;  GT 1a; IL28B CT; VL 900k, ALT 150, AST 100 on 8/5/2014; SOT 9/5/2014  S/O ---VL 127 after 6 days; VL detected on day 18 but < 15.; --> UND @ EOT+ 1 year SVR!
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