fibrosis vs cirrhosis

[indyjo]

Hi All!! I haven't been around for awhile. I relapsed in 2005 and have been waiting for new clinical trial. I have had two biopsies and both indicated F2. I am experiencing increased sxs however that I believe are due to possible cirrhosis. I have red palms, spider nevi, terry’s nails, enlarged spleen, low platelet count, and now excessive daytime sleepiness. Does this sound more like cirrhosis than fibrosis? Is it possible that two biopsies were wrong? Any ideas??

[jmjm530]

Assuming your doctor is a liver specialist (hepatologist) -- the question to pose is if it's possible to have all the symptons you listed and still be stage 2. I'm not a doctor, but my answer would be, yes, it's possible. Of course, a lot would depend on just how large your spleen is and just how low your platelet count is. My spleen has been slightly enlarged for many years now and I don't have cirrhosis.

All the best,

-- Jim

[HCA]

I don't want to seem rude,but it's crazy to ask a patient forum if you have cirrhosis or fibrosis based on a brief description of your symptoms.
You need a fibroscan at least plus ultrasound,also biopsy and possibly endoscopy.
The biopsy you had previously was examined by a pathologist,a different pathologist may have interpreted the slides differently.
Fibrosis speeds up with age and length of infection.
The only worthwhile input is to advise you to make an appointment with a hepatologist specialising in viral hepatitis and get down to a proper examination of your condition.

[Kalio1]

Sorry to hear about your new symptoms. Are you seeing a heptologist? I'd want some answers about your symptoms from the doc. They do sound like symptoms of more severe liver damage than F2. Do you have a copy of the biopsy reports? I'd seek another opinion if you can't get satifactory answers from your current doc. I'd consider treating now if possible.

I had all the symptoms you are experiencing and they made life extremely difficult to function, treatment is no picnic but dealing with all those symptoms isn't either. At least with treatment you are headed in the direction of improved health and you can try to stop the viral assault on your liver. I'd be concerned about trying to get in a trial at this point and putting off treating any longer.

I hope you get some answers soon. A biopsy isn't the only thing that influences a diagnosis of cirrhosis, so does liver function and it seems like yours is having a hard time.
Hang in there and Keep us posted.

[indyjo]

I had biopsies in 2003 and 2006. I have also had CT scan, ultrasound, and endoscopy. I do has gastric portal hypertension based on the endoscopy but no varices.  I have been seeing a hepatologist and was involved in the IDEAL study through IU medical. My frustration is that the sxs do not match the tests and the Doctor can't really provide  definitive answers to my questions. I appreciate the spin that Jim put on the situation - Is it possible to have all of these sxs and still be F2? Thanks for the input everyone.

[Kalio1]

I think your symptoms do match a diagnosis of portal hypertension. They might not jibe with the F2 biopsy results, but remember a biopsy is a sample, not the entire picture of liver condition. Although portal hypertension doesnt cause symptom directly, the problems you are experiencing do seem to match the diagnosis.
I hope you feel better soon. Are you considering treating?

Here is an article about symptoms of portal hypertension. Are you on laculose?


http://www.merck.com/mmhe/sec10/ch135/ch135d.html

[NYgirl]

I think somehow if these symptoms arent caused by something other than your liver that perhaps your biopsy might have been wrong but if you had TWO separate biopsies that seems unlikely.

I'm Stage 3 and didn't have any problems with cirhosis because I just don't have it.

[jmjm530]

In all due respect, I think your "dx" is quite a leap in light of *two* F2 biopsies and a written description of symptons. I've had many of the same symptons -- as have many here -- and I don't have either portal hypertension or cirrhosis. Best for Terry to get a thorough exam by a hepatologist if he hasn't already.

-- Jim

[Hepatitis Researcher]

How low are the platelets and how large is the spleen? What are Alb, bili, LFT values? Any large fluctuations? When in 2006 was the second biopsy? Chol values and weight/BMI?

[Kalio1]

He states he was diagnosed with gastric portal hypertension by his doctor with his endoscopy. Portal hypertension is also a sign of cirrhosis, F2 biopsy or not. What "dx" are you talking about that is a leap? His doctor diagnosed him with it.

[Cindy10]

All I can say is biopsies are not always acurate. My hubby had one showed stage 2 than had an ultrasound showed cirrhosis.
Not to make you more nervous but check with your doc. They
use more than just biopsies to determine that such as labs.

[jmjm530]

The "leap" was dx  of porta .... w/o endoscophy. I missed that post. Still doesn't mean he has cirrhosis (not that you said he did) although you inferred his symptons suggested more severe liver damage than F2. I still think you can have all those symptons with F2 but the best person to put it all together would be a good hepatologist on the ground. HR's questions are also pertinent regarding spleen size and platelet count. If both are consistent with cirrhosis, then of course that would have to factored in. But as I mentioned previously, lots of us here have slightly enlarged spleens and lower platelet counts but do not have severe liver damage. I for one.

-- Jim

[Hepatitis Researcher]

It is possible to develop severe cirrhosis within a few month under certain conditions, like on / off "mini"flares, although it is quite uncommon. He can have an early 2006  stage 2 biopsy that was borderline with many septa , but no bridging seen in the few portal tracts available, or simply a biopsy in a nonrepresentative spot. Also we need to know when the endoscopy was done. Furthermore, if the endoscopist was well qualified/experienced  to make the judgment on the gastric hypertension. What is the actual reading on the report re the gastric findings?

[Kalio1]

Cirrhosis is not only determinded by your biopsy grade/stage.
It is determined by a whole host of blood test results and symptoms such as those Indy listed.

Both an enlarged spleen and low platelet count are indicative of liver damage according to my doc and all I've read, not sure where you got the info that those conditions exist sans subtantial damage but I'd like to see it.
No matter how I search if I type those two conditions I get 100's of pages of info. on subtantial liver damage.

I've not heard of spleens being enlarged and platelets being lower than normal occuring in people who do not have liver damage unless they suffer from some other physical ailment that is causing it. It is not normal to have an enlarged spleen, it is indicating your platelets are being "trapped" in your spleen, which is why they are low.

[Kalio1]

sorry, I meant to address the above post to you.

[Kalio1]

I should learn not to hit the send button prematurely, sorry.
I meant to add this link that gives other possible reasons for an enlarged spleen/low platelets. There is a reason for this situation to occur, a fiar amount of liver damage is one reason.

http://www.mayoclinic.com/health/thrombocytopenia/DS00691/DSECTION=3

[jmjm530]

HR,

I don't doubt the possiblity, but as you say it's "quite uncommon". Sure you will agree that more investigation is needed before a dx including some of the questions you're now asking Indy.

Kalio,

"Both an enlarged spleen and low platelet count are indicative of liver damage according to my doc and all I've read, not sure where you got the info that those conditions exist sans subtantial damage"

When/where did I say that an enlarged spleen and low platelet count weren't indicative of liver damage? What I said is that you can have an elarged spleen and low platelets without having *cirrhosis* or *severe* liver damage. In other words, just because cirrhotics manifest these two symptons doesn't mean these two sytmpons make a cirrhotic.

Where did I get the information? From my hepatologist for one source, as I have both a mildly enlarged spleen and a lower than normal platelet count and do not have cirrhosis. Same with many people here -- slightly enlarged spleen, lower platelet count and no cirrhosis. This is not uncommon.

HR's more probative questions are altogether different. He asked how large was the spleen and what exactly was the platelet count.
Those answers, so far not available, would add more diagnostic information to the equation.

As to spider nevi and daytime sleepiness -- I've had those two issues since I was 23 years old when I was F0. I'm sure the spider nevi was due to the hep c, but certainly not due to severe liver damage or cirrhosis.

-- Jim

[copyman]

jm, what is/was the size of your spleen & platelet count before tx? and did it change after tx?

HR, in your post above in this thread you asked about chols values, weight/bmi. can you elaborate on the correlation between these factors & cirrhosis. thanks

[jmjm530]

Spleen still slightly enlarged as of recent ultrasound. As to the size, before and after (as well as platelet counts) my medical records are let's say, not as well organized as they sued to be :) so I'll let you know when/if I can locate them :) Hope this finds you well entering the New Year. Forgot where you are regarding treatment, please update.

All the best,

-- Jim

[foofighter]

Hello all. As far as trying to figure out stages of liver disease based on symptoms, I say don't freak yourself out OR lull yourself into a false sense of security. I guess it is all the tests together, smart docs AND self education to bring to the table to discuss with your team. (Listen to me, I haven't even seen my doc, since I have found you guys - ha!) Anyhoo, I have been recently diagnosed with cirrhosis (in late July) with NO SYMPTOMS as far as how I feel, red palms, spider thingies, etc. I do have a few red dots here and there, but I have friends the same age (50-ish)  who are healthy and have the same little skin stuff going on.

Some of you may recall that my biopsy samples were "fragmented' but I was given a 2/2 at the first appointment after bx. I guess my bloodwork must have presented enough info to have the NP require a CAT scan the next day to double check results. Slightly low platelets (111), slightly high ALT (43) and normal AST (36). INR low (1.0), HCV for 27 years. Radiologist reported back a diagnosis of cirrhosis a week later. I have learned a ton more in the last month, reading here and following links from all you great folks. One thing was that a certain needle is better for sampling cirrhotic livers (cutting blade?). So I figure that is what went wrong with my sample (although, he never said the bx was messed up/done wrong, just that the sample fragmented and they went ahead and staged and graded those fragments).

Also HR just commented yesterday I think to Laurentia, that with a simmering 20 year HCV and elevated enzymes "chances are quite high that cirrhosis is the reason for these low platelets." My labs are half of what L's are, but platelets similar, so maybe HR wouldn't say chances are quite high, but would make him think, biopsy says 2/2, I don't think so! But I will ask him at my appt next month, why the labwork clues that had him order the CAT scan did not get them to consider that I was stage 4 BEFORE they poked me, so they could get a better sample. I was so happy with that 2/2 diagosis, it was very difficult to hear differently a week or so later. Thinking back though, the biopsy was scheduled at the same appointment they did first blood draw. Maybe they never studied them before bx. Ya think?

[foofighter]

I hope that long post fit into this discussion. What I was trying to say, is that in my case, the labwork and the CAT scan which resulted in cirrhosis dx is what my doctor is saying is correct over the bx.

Maybe HR can comment on the deal with a sample that has fragmented (actually two, from same bx), e.g. whether, in his opinion, it would be reliable at all for use in staging/grading.

[Kalio1]

I think your comments are very pertinent to the thread. To be careful not to be lulled into complacency by a "not so bad" biopsy and/or relatively "normal" enzyme readings is good advice. I had a very similar situation as you. I pushed for a CATScan due to the number of symptoms I had that were listed as symptoms of cirrhosis but my doctor clearly felt it was overkill and was quite suprised by the results saying I had cirrhosis. I have since had a Fibroscan that puts me at stage 3 which I am very happy about but I dont have a biopsy to assist me in my liver assessment.

You are right about the sample viability and size. From what I have read that too is extremely important to accurate analysis. Biopsy might be the "gold standard" but that doesn't mean it doesn't have imperfections in giving an accurate assessment. The sample and the way the sample is studied/evaluated as well as the skill level of the person reading it are vital.

[Hepatitis Researcher]

Those are just second hand indicators to round the picture since we know so little. If a person had a high Chol and then severe liver disease, the Chol tends to drop, since the synthetic capacity of the liver is reduced. Also if the person has high BMI, NAFLD is a consideration, it can cause cirrhosis all by itself. Those are just routine questions.

[Hepatitis Researcher]

Biopsies tend to fragment easier when fibrosis progresses. Since portal triads/areas are separated, less clarity is obtained re bridging fibrosis and overall structure.

[Eisbein]

You platelets were 170 before tx...you told me that in 05.

Ina

[FlGuy]

That's scary.

[jmjm530]

Yes, she keeps a dossier on all of us :)

[Tallahassee]

My pretreatment platelets were ~180.

My cholesterol in 1995 was above normal range ... this was surprising for my Dr. since I have a healthy diet, not overweight, etc.  With time my cholesterol normalized on its own.  Now, prior to treatment I had almost too low cholesterol levels (total 119), "good" cholesterol was above range (but I guess it is still good!

Biopsy sample in 1995 was "highly fragmented" but they gave me a relatively good assessment (without grade but by description it is sounds like stage 1-2). Biopsies from 2000 & 2005 (I don't remember exact wording) that liver samples with a relatively preserved liver architecture (?). Stage 2 fibrosis (in 2000 & 2005).  MRIs from 2002, 2003, 2004, and 2005 indicate "two small liver lesions, too small to characterize".  Apparently they have not changed in size ("changes observed are probably due to a measurement variant").  No enlarged body organs. Once again, I don't have test results in from of me, but this is my recollection.

Should I worry about advanced fibrosis or cirrhosis?
A nurse from my school in 1992 told me about my high cholesterol levels. ... I did not pay attention to my health at this time and it did not worry me.

Thank you all (especially HR :)) for all advice you give on this forum!

[jmjm530]

To put Ina's comments in perspective, I just looked up some pre-tx labs and two platelet results are 159 and 177 respectively, both within the normal range but on the low side of normal. The post Ina refers to -- my memory is as good as dossier :) -- was probably in response to her question relating to how much fibrosis I actually had and whether or not I should extend beyond 48 weeks. Her thought was that 170 was on the low side and might suggest more damage. My contention was that it was low, but not all that low and certainly not low enough to suggest cirrhosis all by itself. I looked for the actual posts but they may have been deleted.

Talle,

A lot of variables go into determining whether someone has advanced fibrosis and cirrhosis. I assume, for example, that you plumbed and checked out for varisces, acites (ascites), etc? As HR has mentioned, HCV can significantly lower cholesterol in some individuals, but how this correlates to actual liver damage in a particular case, I really don't know. Since your last biopsy was in 05, you could also get another one this year, as it still is the gold standard. Alternatively, you might seek out a Fibroscan at either one of the 3-4 trial centers in the U.S., or perhaps with HR, should that work out logistically and should you meet his requirements. There's also a blood marker test called Fibrosure which may have some value, but less in the mid-range, where you may be. But in a more direct answer to your question, based on what you posted, I don't think you can diagnose significant liver damage or cirrhosis based solely on your platelet count (not all that low) and a change in cholesterol, although such a dramatic drop in cholesterol -- assuming no major diet or pharmac intervention -- does suggest further exporation.

Pre-treatment, I was somewhere around a stage 3, based on various reads of a 3 year old biopsy. A mid-treatment Fibroscan more or less confirmed that and a post tx Fibroscan dropped me more toward a stage 2. My pre-tx platelet count was around 170 and currently it's around 180, not much of a difference. Given a nomral "healthy" diet, my cholesterol was usually around 180 and over 200 on a "normal" diet. I was able to lower it in the 140 range on several occasions by going on a very low fat diet -- uner 10% in fat calories to be exact. During treatment, my cholsterol dropped dramatically regardless of what I ate. Post treatment it appears to be around 10% higher than pre treatment.

[Tallahassee]

Oh ... and my question above to all of you knowledgeable Gentlemen & Ladies! :)

[Tallahassee]

Thank you, Jim, for your response.

I guess I'll try to schedule with HR a fibroscan (sp?).  We are planning to visit our relatives in California (may be in spring), it would be nice to have this test.  And if I'll relapse, Dr. N's (University of FL) recommendation to have a biopsy and check with them for available clinical trials.

Thank you again.  All the best!

[Tallahassee]

My Dr. never checked for varisces.  Should I ask?

[jmjm530]

They never checked me for varisces either, despite a three year old stage 3 biopsy. I found out I didn't have them when I had an endoscophy during treatment because of my LPR/Gerd (reflux).

-- Jim

[Eisbein]

Aha, you remember. Don't recall the title of the post, but we were also talking about kayaking and cross-country, as well as you taking my head off :)
I told you once before, I keep a close eye on you...because you are my age and we butted head so often :)
Just started taking acetyl L-Carnitine, because my general memory has not improved one bit since ending tx.

Ina

[Hepatitis Researcher]

As jim pointed out the amount of info - and typically any amount of info mainly based on bloodwork- is not sufficient to make a meaningful judgement on the likelihood of fibrosis vs cirrhosis in your case.
A laparoscopy guided biopsy is the best way to diagnose cirhosis, together with spleen size, endoscopy, some ultrasound parameters and blood chemistry related to liver synthetic function and detox function.
Fibroscan will soon become the most feasable/practical test to determine the amount of fibrosis with good reliability and it trumps biopsy by the amount of liver volume analyzed for stiffness, ( very little sampling error) while obviously giving no info on liver architecture and inflammatory scores. I just hope that they standardize its use and require stringent training in its application, because the current imaging processing program will accept some invalid measurements that a knowledgable observer will want to disregard. The hope was " Leave it all to the machine".My hope is "Dont give it a less than possible reputation by disregarding the need for human correction and evaluation".
Once we have figured out a way to individually contact we can certainly discuss if you would benefit from a scan.

[Tallahassee]

Thank you, HR, for your response!
I'll know in 2-3 months if we will travel to the West coast. But so far it is a BIG consideration!