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Is possible to be misdiagnosed with cirrhosis?

I was a heavy drinker until January of this yearr when I stopped due to a complete loss of appetite and a general feeling of malaise.  I continued to not have an appetetite and in February, I developed a swollen and painful abdomen whick quickly worsened.  I was sent for an ultraound in late February which indicated moderate to severe ascites and cirrhosis.

I saw a GI specialist shortly after that who bluntly stated I had at most 3 years left without a liver transplant and I should start working to make sure I qualified for the transplant list.  At the end of February, I had a paracentesis which removed 7 L of fluid (not nearly all I had though).  I was put on diuretics and told to restrict salt intake.  I continued to retain fluid and not have an appetite.  By the time I went for a second paracentesis in early May, I had lost about 50 pounds in 3 months (not considering the water weight gain) and looked and felt very much like I was at death's door.

However, after that, I began to improve rapidly, it seemed.  My last blood workups have been completely normal.  I haven't had any more fluid problems, although I contpnue to take diuretics.  However,  I've pretty much abandobed a low sodium diet. I've regained my appepite and 20 of the lost pounds in the last 2 months.  If I hadn't had the problems early in the year, no one would guess I had anything close to cirrhosis.  

I don't kid myself, and I know ANYTIME you develop ascites, there's a serious problem there.  But is it possible I could have actually had just an  acute condition (e.g. alcoholic hepatitis), and not cirrhosis?
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Avatar universal
yes I was MISDIAGNOSED  and NONE of my drs want to talk about it nor look for other causes of the liver attack -given 3-6 months to live-MELD Score in the 30s and put on transplant list (((did not need and did not get))) One year later I am as healthy as could be.  All praise to God because he is great and for telling me along the way that the dr.s were wrong and to keep faith in him.  I  let go of all the things in my life that were (what I believe now) as spiritual scars or "grossness" and my issues with the big 10 commandments  namely  wrath.  Aside from being called "lucky" I prefer blessed- the drs refuse to address it.  I believe its not fear of a lawsuit as much as fear they dont know it all and discard the notion that God is in charge not them. I often remind myself not to gloat/but share the message that it isnt up to Dr.s to determine how long we get to stay.  God Bless you and your
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2 Comments
cont-(diagnosed by the opposite of Mustard clinic)had CT/ultrasound/mri they refused to do a biopsy because it was too "risky" their words not mine- so I had a local GP order it for me - Came back just fine.  No meds-
My GI doctor had a Fibsure and it shod stage 4 ,I went to a liver and he did a fibro scan and some more blood work and he said I just was a stage 1 and he is giving me shots fro hepatitis . The Fibsure is not accurate scan .  
29837 tn?1414534648
Always get a second opinion...
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Avatar universal
Hello I can advise you to read the stem cell treatment, there are very good results in cirrhosis. I wish you the best.
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1475202 tn?1536270977
COMMUNITY LEADER
You are welcome Advocate. I was just glad to have anything left to add since everyone else was so thorough with their replies :) The amount of information our members have gained through their experiences is remarkable and invaluable to anyone searching for answers.

Randy
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Avatar universal
Thanks for the additional information about alcoholic Cirrhosis. I didn't realize that staging Cirrhosis is not as critical for Cirrhosis that is due to alcoholism as compared to Cirrhosis that is due to Hep C.  That makes sense to me though.
Advocate1955
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1475202 tn?1536270977
COMMUNITY LEADER
My diagnosis made with a CT scan clearly reveals cirrhosis just as your lab tests and ultra sound. The cause of your cirrhosis is clearly alcohol abuse. Your immediate treatment is to discontinue the alcohol. It is critical that under no circumstance should you ever consume any amount of alcohol again. An invasive procedure (biopsy) seems like an un-necessary risk. A patient with cirrhosis already has a compromised immune system. Your treatment options will not change at this point by having the biopsy. Instead your treatment options will be based on symptoms as they manifest. As others have pointed out lab testing and imaging to screen for HCC (liver cancer) is absolute.

Staging cirrhosis is very critical for Hep C patients to determine treatment options. Since I wasn’t facing an any underlying diseases I didn’t need a biopsy. My cirrhosis is also due to alcoholism. It was clear as day why I got cirrhosis and that it was severe enough to give me a certain level of treatment. Progression or not my lab testing and symptoms will tell me if I need a transplant. It is after all, the testing (blood work) that’s used to generate a MELD. I could have a biopsy tell me that I’m getting worse but until my MELD gets to the right point they won’t give me a new liver. I think reasons for biopsy fall to the side under my circumstances and yours.

It’s my personal opinion your liver is cirrhotic. As Advocate stated, “do everything possible to stop/slow down the progress.” It seems you are on the right track already! Please keep us informed and welcome to MedHelp! I wish you the best!

Randy
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Avatar universal
The only way to know for sure is by getting a liver biopsy.  That will answer your question.

If you have stopped drinking alcohol, and if you are following liver friendly advice (low sodium, ideal weight, not taking meds that are processed through the liver, low/no iron, no recreational drugs, low fat diet, etc.), hopefully your Cirrhosis will slow down or stop progressing.  I don't know much about alcoholic Cirrhosis, but although Cirrhosis won't reverse itself, you can do everything possible to stop/slow down the progress.

Unfortunately, you probably do have Cirrhosis, and since you have already had a bout with ascites and have portal hypertension, you will need to learn what signs and symptoms of other life threatening complications to watch for (e.g. varices, etc.).  You should be under the care of a hepatologist.  100 miles is not too far to travel every 3-6 months to receive care that could make the difference in avoiding End Stage Liver Disease.

You should also be tested for various types of viral hepatitis and HIV to make sure that you do not have any infections that would add an extra burden on your liver.  You should probably be screened for liver cancer about every 6 months.  

Your parencentesis and your diuretics helped your ascites and relieved some of the pain and complications of the fluid, but your Cirrhosis is still there, and it's not going away, so you need to follow your doctor's orders so as to not put any additional burden on your liver and manage the complications of Cirrhosis so you can keep your liver functioning as well as possible.  

End Stage Liver Disease is not where you want to find yourself in a year or two.  There are not enough livers to go around for the people currently on the transplant list, so take care of the one you have.

Advocate1955
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2 Comments
If you don't get a mrsa infection from the biopsy.  In some hospitals that is not an insignificant risk.  You must take that into consideration when allowing any medical procedures.  Drs. also tend be sloppy, dont spend enough time with patients. and dont listen.
A human liver is pretty amazing for a lot of reasons, but it has one trick that borders on the miraculous: it is the only human organ capable of regenerating damaged tissue. It's actually a little more impressive than that. A liver can fully regenerate up to 75% of damaged tissue. And, it can do so in fairly quick order.  I have identified several other inaccurate statements in these postings.  if you don't know what you are talking about you perhaps shouldn't be giving anyone any advice.
3097131 tn?1357084881
As of now every blood test aspect that might be seen as bad due to severe chronic liver disease -- enzymes, albumin, bilirbin, platelets, etc., -- are all completely normal... if so then what is the Criteria that is stopping you?Is it the Alcohol? How long do you have to be on the WAGON as I call it before you can get TP? I havent drink in many years,but I was just wondering,because I had a Good Friend that died before he met a 1 year alcohol free to recieve a TP he stopped drinking but his time ran out before that year.

Good luck to you,
Country~
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Avatar universal
So far, tests have shown no cancer.  There is no hepatologist within 100 miles of where I live, but Realize I would have to be under a hepatologists's care to receive a transplant.  As of now, I don't even come close to meeting the criteria for a transplant.
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Avatar universal
I'm reluctant to disagree with Hector because he is extremely knowledgeable but there can be ascites without cirrhosis.

Admittedly the overwhelming majority of ascites is due to cirrhosis related portal hypertension. There are however other possibilities, though very uncommon.

Congestive heart failure can cause ascites as can advanced renal disease/kidney failure. These are portal hypertension related but without cirrhosis.

Internal and external obstructions of the portal vein can also cause ascites(tumors, blood clots). These too are portal hypertension related but without cirrhosis.

So too can some advanced cancers  - malignant ascites.

And there is Pancreatic Ascites which is not portal hypertension related.

"...Pancreatic ascites is defined as massive accumulation of pancreatic fluid in the peritoneal cavity.1 The amylase is generally above 1,000 and often in the 5,000 to 10,000 range. It can be due to traumatic rupture of pancreatic duct from recent abdominal trauma such as a car steering wheel injury, or more likely from chronic alcoholic pancreatitis.2 It has been described in approximately 4% of patients with chronic pancreatitis and in 6% to 14% of those with pancreatic pseudocysts.3 Many patients with alco-holic pancreatitis may not even have abdominal pain and therefore it might be confused with ascites from cirrhosis. The confusion is less likely when there is a history of recent trauma. As with any cause of ascites, paracentesis is mandatory. Treatment of ascites is dependent on the etiology and the best way to deter-mine this is with paracentesis. In the case of pancre-atic ascites, in addition to an elevated amylase, it is usually an exudate with the serum albumin ascites-gradient less than 1.1 grams/dl. .."
See: http://www.med.ucla.edu/modules/wfsection/article.php?articleid=291

Pancreatic Ascites is quite rare but it is associated with alcohol use and I guess it is one possibility, although unlikely.

Mike

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Avatar universal
I didn't have a biopsy.  The cirrhosis was diagnosed by the admitted alcohol consumption, ascites, elevated enzymes, lowered albumin, and the ultrasound which showed "numerous hard nodules most likely due to cirrhosis.  No reason to doubt the diagnosis at that time.

I still see a GI specialist every 3 months or so; I go again in a couple of weeks.  But accordng to what I have been told cirrhosis is completely irreversible (unlike fibrosis).  I would not expected to have gotten better if I actually had cirrhosis, which is why I wonder.  Maybe people go through different phases and are better for a while -- I don't know.  As of now every blood test aspect that might be seen as bad due to severe chronic liver disease -- enzymes, albumin, bilirbin, platelets, etc., -- are all completely normal.
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1 Comments
Long Live the Liver. A human liver is pretty amazing for a lot of reasons, but it has one trick that borders on the miraculous: it is the only human organ capable of regenerating damaged tissue. It's actually a little more impressive than that. A liver can fully regenerate up to 75% of damaged tissue. And, it can do so in fairly quick order.
446474 tn?1446347682
COMMUNITY LEADER
Have you had a liver biopsy? It is the only way to know what stage your liver disease is. Although ascites is ONLY present in people with cirrhosis.

Once a person develops cirrhosis and ascites they have many other issues that they may not be aware of because they are internal. Having cirrhosis means you are more prone to liver cancer and will need to be monitor every 6 months as long as you have cirrhosis. Like liver damage, liver cancer has no symptoms until it is very advanced. If you don't get monitored for liver cancer by the time you feel something you will only have months to live. There are many other life-threatening complications of cirrhosis that can appear. You need to be under a hepatologist care at least until you no longer have cirrhosis. Unless cirrhosis is properly monitored prognosis over time is poor.

Continue to see a doctor until you no longer have cirrhosis. Remember cirrhosis can be fatal without proper treatment.

Good luck.
Hector
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1 Comments
Ascites is caused by many diseases, including liver disease, congestive heart failure, nephritis, infection, and cancer, to name some of the most common.  ********.
446474 tn?1446347682
COMMUNITY LEADER
"But is it possible I could have actually had just an  acute condition (e.g. alcoholic hepatitis), and not cirrhosis?"
No. You can't have ascites without cirrhosis and portal hypertension which are the cause of ascites, sorry.

"no one would guess I had anything close to cirrhosis."
Most people with cirrhosis of the liver have no symptoms and function normally. It is only when they develop ascites, vomit blood or other complication of advanced cirrhosis that anyone is aware that most of their liver has been destroyed. You are misinformed about the nature of cirrhosis and what it supposedly looks like. Most people with cirrhosis look the same as every one else until the final stages.

A GI specialist, unless they work for a liver clinic at a teaching hospital is NOT qualified to care for a person with cirrhosis. You need to see a hepatologist at a liver clinic or a liver transplant center.

It appears your liver disease is the results of alcoholic liver disease. Now that you are not drinking your liver is repairing itself which is why your ascites has resolved itself at least temporarily. Cirrhosis develops over decades of alcohol abuse. It doesn't magically disappear after decades of injury from alcohol. but ascites may resolve or become more responsive to medical therapy with abstinence and time. Also the reversible components of alcoholic liver disease can be revered over time by abstinence . So if you never drink again your liver may be able to bring itself back from the brink.

Unfortunately only people with advanced cirrhosis experience ascites. It is very common for ascites to come and go but that doesn't mean you don't have cirrhosis. Blood levels being with normal ranges also don't mean you don't have cirrhosis. That is wishful thinking I'm afraid.

Helpful - 0
1 Comments
Ascites is caused by many diseases, including liver disease, congestive heart failure, nephritis, infection, and cancer, to name some of the most common.  You dont know what you are talking about
3097131 tn?1357084881
I am no doctor by all means,but I do have Early Stage Cirrhosis and Stage 5 Fibrosis and I have not had Ascites.With all you have been through I would have to say your Diagnosis is most likely correct.I am really surprised that no one has commented on your post already.I am really sorry to hear you are not feeling well.Please take it Serious and follow through with what your Doctor is telling you.

Best Wishes to you,
Country
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3 Comments
I have to say something here...I believe I have a worse story than you. Jan 6th of this year I was rushed to emergency with Ascites, I was vomiting blood and faint. I was told I had Cirrhosis, kidney failure and I was going to die that night. My family flew in to say goodbye. I didn't DIE. Within 14 days I was out and since I have been sober and my blood is normal, the doctors are constantly sending me for ultra sounds and blood tests but they come up short. They cannot prove any sign of Cirrhosis. Hang in there Dr.s don't know everything.
I, too, was admitted with fluid build-up, which was removed, CT or MRI showed no cirrhosis.  I had all the symptoms, the swelling, the jaundice, itching, though not so much. I was put on the transplant list .  During dental work a year later, I lost enough blood to be hospitalized and transfused.  I confronted my doctor and he referred me to a hematologist.  Careful review of my past history with bleeding, especially with oral tissue, and a genome study, revealed that I had a Group VII defect, easily treated so I don,t bleed during surgery or dental work.  I am six years out with 100% normal bloodwork.  I have not touched alcohol since the day I left the hospital.  I've had two successful surgeries with no complications, rotator cuff and a major abdominal muscle tear.  I am full of energy, just turned 65  BP 120/70, dropped 50 lbs,and lookin' for about 30 more years.  My original prognosis was 1-2 yrs.  Drs. are good at statistics these days.  I am a statistician and they better start looking at patients again.  I still do my six months.  All 4 of my great grandparents lived into their 80s and nineties with several centenarians among our close family, both sides.  I suspect if a study were done of those who changed lifestyle to include no alcohol, without exception, the life expectancy numbers would be significantly longer.  I suspect that those co-dependant variables were never screened for.  Perhaps they were not excluded to  skew the data to scare people into sobriety.  Patients need to be told the truth, but believe you me they are all ready scared.  A little help and encouragement goes a long way.  Drs. don't know everything and generally they are poor scientists.  (Remember when eggs are bad for you?)
YOU MUST QUIT DRINKING COMPLETELY AND NEVER TURN BACK, OR YOU HAVE NO CHANCE!
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