Missed diagnosed my liver condition

[Garyknrd]

I am 66, found out I had Hep-C
Started my treatment about a month ago.
Two weeks in had blood work and it was 40.
Doctor sait it was ok, But! They misread my results and I have cirrhosis and it is pretty bad. She said when they realized the mistake they checked my blood with my last blood work and it was pretty bad.
So, now they have reclassified me as severe cirrhosis where as before it was normal??  What the hell!  How can they make this mistake.
I am on a 12 week regiment of Harvoni and as of today i have taken 24 pills. I have blood work again next week.

My problem is I have read the best results with cirrhosis is a 24 week treatment. Do any of you have any experience with 12 weeks treatment with cirrhosis?

I am type 1.

[Lynn K]

Hi and welcome

Here is a link to the AASLD current treatment guidelines for initial treatment for genotype 1 with compensated cirrhosis. I assume you had never treated previously. I also am guessing the two week at 40 test you mentioned is your viral load? If it was your viral load on treatment viral load testing means nothing the only test that matters is your 12 week post treatment test. If your result at that time is not detected that means you are cured.

https://www.hcvguidelines.org/treatment-naive/gt1a/compensated-cirrhosis

Harvoni for 12 weeks is one of the recommended treatment regimens recommended for a treatment naive patient with compensated cirrhosis. The clinical names of the drugs are listed you would have to look up the names the drugs are sold as.

Harvoni for example is ledipasvir and sofosbuvir combined together in one pill.

Also per the Harvoni prescribing information sheet:

https://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/harvoni/

Treatment-naïve without cirrhosis or with compensated cirrhosis (Child-Pugh A) Harvoni alone for 12 weeks is also the recommended treatment.

The 24 treatment is for those patients with decompensated cirrhosis or prior treatment experience.

I had failed 3 previous treatments with interferon based treatments. I had also relapsed on one of these new generation treatments Sovaldi and Olysio for 12 weeks. Additionally I was diagnosed with liver cirrhosis 7 years before I was treated and have some symptoms of liver cirrhosis.

So when I was next treated after Harvoni was first approved I treated for 24 weeks along with ribavirin and was finally cured on my fifth treatment. But my medical history is much different than yours.

As long as you are compensated cirrhosis and are treatment naive 12 weeks of Harvoni without ribavirin is one of the recommended treatments.

Good luck with treatment try to keep properly hydrated the old 8 each, 8 ounce glasses of fluids daily.

[Lynn K]

Not sure what you mean your cirthosis is pretty bad. What blood tests are they referring to?

Cirrhosis is diagnosed with either a liver biopsy where they insert a needle into your liver and take a sample or there is a machine similar to an ultrasound except it generates a sort of thump to measure liver stiffness to estimate scarring. There is also a blood test called fibrosure that can also estimate liver stiffness. An abdominal ultrasound can also show liver surface changes that could indicate liver cirrhosis but cirrhosis is diagnosed by one of the previous three tests.

Have you had a liver biopsy, Fibroscan or fibrosure test? Have you had an abdominal ultrasound? These tests are how cirrhosis is diagnosed. If the tests they are referencing are liver enzymes they are often elevated with hep c. Elevated liver enzymes don’t relate to the amount of liver damage only that something is currently bothering your liver.

What kind of doctor are you seeing? If you have cirrhosis you need to be seen by a hepatologist (liver doctor) or at least a gastroenterologist. They will have the knowledge and expertise to properly guide your treatment.

Does your doctor provide on line acces to your test results? If not get hard copies. Most of us track our testing results in some way.

[Lynn K]

Here is a description of the stages of cirrhosis. Have you had any symptoms of cirrhosis like lower leg and foot swelling (edema) or abdominal fluid retention (ascities)? Have you had an upper endoscopy and found to have enlarged blood vessels in your throat called esophageal varicies? Is your platelet count well below minumim normal of 150?

I have had esophageal varicies which were repaired by banding. Also I have edema and a small amount of ascities only visible with ultrasound. I also have a platelet count now about 110 before I was cured it was around 80 to 90 range.

I was diagnosed with cirrhosis in Jan 2008 with a liver biopsy. My last Fibroscan score in 2016 was 33 with any result over 15 indicates liver cirrhosis.

https://www.livestrong.com/article/240024-what-are-the-4-stages-of-cirrhosis/

Stage 1 Cirrhosis

Stage 1 is the earliest stage of cirrhosis and is characterized by the absence of two significant complications known as varices and ascites. Varices are dilated, ballooned veins. They are most often located in the lining of the esophagus and/or stomach. Acsites refers to an accumulation of fluid in the abdominal cavity. Both varices and ascites develop primarily because of obstructed blood flow through the liver, a condition known as portal hypertension. While people with stage 1 cirrhosis have extensive liver scarring, it is not severe enough to cause substantial portal hypertension and its complications.

Stage 1 cirrhosis is considered compensated cirrhosis. This means that despite extensive damage, the liver is not yet so severely scarred that clinically apparent signs of liver failure have developed. People with stage 1 cirrhosis generally do not experience many symptoms other than perhaps lack of energy and fatigue. Stage 1 cirrhosis is potentially reversible if the underlying cause of the cirrhosis is eliminated or cured.

Stage 2 Cirrhosis

Stage 2 cirrhosis is marked by the development of esophageal varices, due to worsening portal hypertension, but without the presence of ascites. While the development of esophageal varices indicates worsening cirrhosis and an increased risk of dying in the next 12 months, stage 2 cirrhosis is still considered compensated cirrhosis. There remains the potential for at least partial reversal of liver damage if the underlying cause of cirrhosis is eliminated or cured.

Stage 3 Cirrhosis

Stage 3 cirrhosis is marked by the development of ascites, with or without the presence of varices. The volume of ascites varies from being detectable only with imaging tests, such as abdominal ultrasound, to obvious bloating of the abdomen. The development of ascites signals worsening portal hypertension due to advancing liver scarring and deterioration of liver function. Stage 3 cirrhosis signals decompensated cirrhosis, meaning the liver is failing. Once decompensated cirrhosis develops, liver scarring is irreversible and evaluation for liver transplantation is generally recommended. A variety of signs and symptoms may be present with stage 3 cirrhosis, including:
pale and/or yellowish skin
weight loss and loss of appetite
shortness of breath
extreme fatigue
persistent, widespread itchiness
swelling of the feet, ankles and lower legs
wasting of the muscles of the arms and legs

Stage 4 Cirrhosis

The defining feature of stage 4 is gastrointestinal bleeding, usually from ruptured varices in the esophagus or stomach. This type of bleeding can be immediately life threatening if not controlled. Even if bleeding stops or is medically controlled, however, individuals with stage 4 cirrhosis still face a high risk of dying within 12 months. Persons with stage 4 cirrhosis have end-stage liver disease and urgent evaluation for possible liver transplantation is necessary. Signs and symptoms that might develop include those that may occur with stage 3 cirrhosis as well as others, such as:
confusion, personality changes and/or extreme sleepiness
hand tremors
reduced urination, which may indicate kidney failure
high fever, signalling infection of the abdominal cavity

[Garyknrd]

I had colon cancer 15 years ago and it spread to my liver and other organs. So i under went chemo. It was very bad, class IV. After my salt treatment ended I quit treatment. It was too much for me. Fortunately I did not die! I had a treatment where they stuck a needle in-between my ribs and burnt the tumors in my liver. Then i quit that treatment. It was like getting kicked in the ribs by a horse. 
Luckily the tumors crusted over and have not grown since.

Now after I find out I have Hep-C they do not want to do a biopsy. They are afraid it will puncture one of the tumors. So, they gave me an ultrasound. It came back showing problems, so I had a contrast dye procedure that showed the tumors and liver had not gotten any worse.
At that point they gave me another pretty intensive ultra sound. It was different from the first one. Not sure the name. I will ask the doctor next apt. It came back as normal. I was told in no uncertain terms I did not have  cirrhosis.
Yesterday the doctor said the test was wrong and I had cirrhosis. And pointed to the stage 4 pic she had on the desk.
I am in a Hep-C clinic in the city of San Antonio Texas. Suppose to be extremely good.
But, I am finding after all of this the doctor has not explained anything to me.

She said I would have to have the endoscopy every six months even if the virus was cured along with something else I forget. Crazy.

I have an appointment on the 27th. This time I have a list of questions and am going to bring a pin and paper to take notes and not let her rush me out before I know the exact diagnoses.

I assume I have compensated cirrhosis but not sure and what exact stage. I will get the answers on the 27th. Really I was not too concerned about the whole thing until I started treatment. Now! it is very stressful.

If I don't get the answers I will file a complaint and request another doctor. I have lost all confidence in this one. Very poor patient skills. IMO if you are this sick there needs to be a dialog with the doctor explaining everything in detail.

[Garyknrd]

Quick rundown of problems. Looks rather bad but in reality since I quite all cancer treatments I have been feeling fine. Now this. Honestly I don't let it bother me much. I have been feeling pretty good for the last 15 years.
I copied and pasted this here just as a reference. I have an online account with the hospital.

Diagnoses
Cirrhosis of liver
Calculus of gallbladder without cholecystitis without obstruction
History of other malignant neoplasm of large intestine
Disorder of liver
Viral hepatitis B without hepatic coma
Other specified disorders of liver
Hepatitis B surface antigen positive
Other diseases of lung
Closed displaced fracture of acromial end of clavicle
Other chest pain
OTHER SEBORRHEIC KERATOSIS 702.19
CALCULUS OF URETER 592.1.
CALCULUS OF GALLBLADDER WITHOUT MENTION OF 574.21
UNSPECIFIED VIRAL HEPATITIS C WITHOUT HEPATIC COMA
PERSONAL HISTORY OF MALIGNANT NEOPLASM OF L V10.05
INCOMPLETE BLADDER EMPTYING 788.21
ASTHMA, UNSPECIFIED TYPE, WITHOUT MENTION O 493.90
ACUTE BRONCHITIS 466.0.
COUGH 786.2.
SPECIAL SCREENING FOR MALIGNANT NEOPLASMS, COLON
BENIGN NEOPLASM OF COLON 211.3.
PERSONAL HISTORY OF MALIGNANT NEOPLASM OF L V10.07
PERSONAL HISTORY OF ANTINEOPLASTIC CHEMOTHERAPY
Diverticulosis of large intestine
Benign neoplasm of colon
OTHER SPECIFIED DISORDERS OF L
CLOSED FRACTURE OF ACROMIAL EN
NEOPLASM OF UNCERTAIN BEHAVIOR
LUMBAGO 724.2.
MALIGNANT NEOPLASM OF COLON, U
DIFFICULTY IN WALKING
Chronic hepatitis C virus infection
Hepatitis C virus infection without hepatic coma
History of liver cancer
Diverticulum of bladder
Abnormal levels of other serum enzymes
Abnormal results of liver function studies
Abnormal liver enzymes
Functional disorder of polymorphonuclear neutrophils
Sprain of other specified parts of right shoulder girdle, initial encounter
Musculoskeletal chest pain
CALCULUS OF KIDNEY 592.0.
HYDRONEPHROSIS
EXTRINSIC ASTHMA WITHOUT MENTION OF STATUS 493.00
PERSONAL HISTORY OF TOBACCO USE V15.82
PERSONAL HISTORY OF ALLERGY TO ANALGESIC AG V14.6.
NOCTURIA 788.43
Calculus of kidney
CALCULUS OF GALLBLADDER WITHOUT MENTION OF 574.20
NAUSEA WITH VOMITING 787.01
PERSONAL HISTORY OF MALIGNANT NEOPLASM OF R V10.06
DIVERTICULOSIS OF COLON WITHOUT MENTION OF 562.10
PERSONAL HISTORY OF IRRADIATION, PRESENTING V15.3.
ACQUIRED ABSENSE OF INTESTINE (LARGE, SMALL)
Internal hemorrhoids
History of malignant neoplasm of colon
UMBILICAL HERNIA WITHOUT MENTI
OTHER POSTSURGICAL STATUS V45.
Cough
MUSCLE WEAKNESS
Pain in joint - shoulder
Attention to sutures

[Lynn K]

Wow you have definitely had a hard road!

On what basis did your doctor say “the test was wrong and I had cirrhosis”?

It may be a fine clinic for simple treatment of hep c but your prior history is very complex you really should be seeing a specialist.

Most doctors are moving away from the invasive although more accurate biopsy. Most are doing the Fibroscan. Like I said the machine produces a thump only slightly uncomfortable you would probably remember.

Have you been advised about the box warning related to dormant hep B infections?

This is from the first page of the prescribing information sheet

“WARNING: RISK OF HEPATITIS B VIRUS REACTIVATION IN PATIENTS COINFECTED WITH HCV AND HBV
See full prescribing information for complete boxed warning.
Hepatitis B virus (HBV) reactivation has been reported, in some cases resulting in fulminant hepatitis, hepatic failure, and death.”

[Lynn K]

I think you should be having an abdominal ultrasound every six months that is the standard protocol to monitor patients post treatment with F3 fibrosis and F4 cirrhosis. I have an ultrasound every 6 months. Maybe the other test is an AFP blood test (alpha fetoprotine) which can be a liver cancer tumor marker. I have this blood test along with liver function and CBC every six months.

When I was first diagnosed with cirrhosis I had an upper endoscopy to check for varicies. I had grade one at the time so we had the next one in two years to recheck. Then I had grade two so I was told to be rechecked the next year. One year later I had grade three varicies that required banding to be done. So I had four banding sessions over the next 4 months to eradicate the varicies. After that I have been checked annually.

[Garyknrd]

Hey Lynn,
I will check all out with my doctor on the 27th.
Then I will post what is going on.