New to Hepatitis B

[marymmma]

Hello. Thank you for accepting me. On January 23, after having an ultrasound on my liver and blood work done, I was diagnosed with Hepatitis B (contagious) and Cirrhosis of the liver. I don't know too much more than that. I haven't seen a specialist yet. Having to wait till May 2, which is a wait of at least three months. So I am very scared. I have no idea how I got infected. The only thing I can think of is morbid obesity, high blood pressure and diabetes (uncontrolled for 20 years). And I had a tattoo but that was about 2 1/2 years ago. I'll try to share what I know. I was told there is scarring of the liver. Don't know to what extent.

I was told my bilirubin level was good. The test (?) to check my blood clotting was good (1.1). I was told that my ALT and AST were good. I don't know which one but one of them was elevated by just one point.
Hepatitis B Surface Antigen - Reactive and abnormal
Hepatitis B Core Antibody IgM - Non-reactive and normal
Hepatitis B Surface Antibody QL - Non-reactive and abnormal

This is everything I know now. Not enough for me but I have to wait a little over two more months to find out more. Meanwhile I am trying to eat healthy. (Not that easy. I'm morbidly obese and addicted to everything). I don't exercise so I'm going to start easy and get some in. Drink more water. Keep my sodium below 1500.

I was having pain in my abdomen several months ago. Doctor gave me an ultrasound on my liver then, also. That came back as fatty liver. Some of my symptoms in the last two or three months has been abdominal pain (just a couple of times), persistent pain in my side and back (flares up to an 8-9 on the pain scale but last for only about 1/2 hour), loss of appetite and unexplained weight loss (20 pounds in the last three months), occasional extreme fatigue, constant extreme itching mainly on my scalp. I think that is all.

Also, I wonder if you can tell me, please, what pain relievers I am allowed to take. I have no idea and haven't been taking anything for headaches or the pain in my side and back (which can be high on the pain scale as I mentioned earlier).

I apologize for this being so long but this is my first post and I wanted to get as much information to you as possible so hopefully you may be able to help me. I do understand that this is not medical advice from a doctor but I would just like to know what you think. Right now I am feeling totally hopeless and feel like I have a constant cloud of death over me. Thank you.

[marymmma]

I wish someone could answer my first post above. I just don't know anything and have to wait two more months before I can see the specialist.

PLEASE 

And now this...I just got a call from my doctor's nurse. She says they ran another blood test (?) last week and the results came back as:

tested positive but not infected. I have no idea what that means. It sounds kind of good to me but I don't want to get my hopes up. Please answer me someone!!!

[Lynn K]

Hi we don't I guess have a lot of hep b folks here but I have cirrhosis from hep c.

I am taking a guess but the comment from your nurse that you "tested positive but not infected" might mean you tested positive for hep b antibodies (which are made by your body to fight the hep b infection and are not the virus. That only means you were infected not you are infected) but you do not have any hep b virus in your blood. This can happen because your body may have fought off the hep b infection.

I am not entirely sure about all that. It would be accurate for hep c but I don't know as much about hep b testing or the specific testing involved. So your doctor will need to answer that or you might try to speak with your nurse again to see if she can explain it for you a little better.

The blood test that was 1.1 is called INR. Mine is also 1.1 and lower is better but we are ok with that result. It has to do with how long it takes our blood to clot. There is a related test basically using the same test sample that describes clotting time a different way called PTT or pro-thrombin time how many seconds for your blood to clot. The liver produces clotting factors if the liver is damaged it does not work as well.

Hep b is blood borne so your old tattoo especially if not done in a licensed facility could be a source of hep b infection.

But many things can cause liver cirrhosis. Most notably alcohol abuse for many years of hard drinking, hep b and hep c because for many people it will become chronic and eventually may cause damage leading to cirrhosis after many years of infection. However, not all infected go on to develop cirrhosis. Along with several causes I won't get into a rising risk in the U.S. of NAFLD or non alcohol fatty liver disease. Having too much fat in your liver just by itself can also cause liver damage leading to cirrhosis.

Whether or not you currently have hep b you must try to lose weight to reduce the fat in your liver but you will need to do it with your doctors help some weight loss meds can harm the liver and even losing weight very rapidly can cause problems.

As far as pain meds I am recommended by my hepatologist to take Tylenol (acetaminophen) due to the bleeding risk that can be caused by NSAIDS like Advil or Aleve. You may take up to 2000mg/day but I would try to avoid daily usage. Also remember that acetaminophen is often mixed with other medicines like say NyQuil so read labels.

Because we have cirrhosis we are at risk of developing enlarged blood vessels in our esophagus that can enlarge to where they can bleed so that is why we take Tylenol. But again you need to discuss this with your doctor. I am just a lay person living with cirrhosis for over 9 years now.

You will want to get copies of your lab tests and any other test results like ultrasounds or MRI's or upper endoscopies. My doctor uses MyChart where I can go online to review my tests anytime.

If you are successful in losing enough weight you can prevent any additional liver damage from NAFLD losing weight could greatly prolong and improve your quality of life. People can live many years with cirrhosis if the cause of the liver damage is removed.

Come back anytime you have questions. Best of luck to you

Here are a couple of links

http://www.liverfoundation.org/abouttheliver/info/nafld/

http://www.liverfoundation.org/abouttheliver/info/cirrhosis/

[marymmma]

Thank you so much for answering me Lynn. I thought just a little bit ago to check my doctor's health portal online figuring there might be some results of recent blood work that they did on me that would show that "I tested positive but not infected". And yes there was something. And this has numbers. So if you could please take a look and see if this tells you anything more please. I hope the hepatitis b is something I don't have to worry about anymore. The cirrhosis is already too much for me to handle.

Hepatitis B Virus DNA, Quantitative, PCR with Reflex to HBV, Genotype
   NAME    VALUE
F    HEPATITIS B VIRUS DNA    <20  (IU/mL)
F    HEPATITIS B VIRUS DNA    <1.30  (Log IU/mL)
- HBV DNA Not Detected REFERENCE RANGE:
- HEPATITIS B VIRUS DNA <20 IU/mL
- HEPATITIS B VIRUS DNA <1.30 Log IU/mL
-
- This test was performed using the COBAS(R)
- AmpliPrep/COBAS(R) TaqMan(R)HBV Test, v2.0
-
- To convert International Units/mL to copies/mL,
- use the following conversion factor:
- 1 IU/mL = 5.82 copies/mL.

I also looked at the seconds on the PT part of the blood clotting test and it is 13.5. Is that good? Hoping to hear from you soon. Thanks.

[Lynn K]

Ok so as I said hep b is not my best area but yes that does look similar to what I see on my viral load test for hep c
HCV RNA Not Detected

The reference ranges are just information so it does appear to me that you may have been infected in the past (or maybe you were immunized against hep B) but are not currently infected with the hep b virus.

So if I am guessing correctly your issue is not hep b at all but maybe cirrhosis caused by NAFLD.

Here are some other causes of cirrhosis:

http://www.mayoclinic.org/diseases-conditions/cirrhosis/symptoms-causes/dxc-20187350

"Causes

A wide range of diseases and conditions can damage the liver and lead to cirrhosis. The most common causes are:

Chronic alcohol abuse
Chronic viral hepatitis (hepatitis B and C)
Fat accumulating in the liver (nonalcoholic fatty liver disease)

Other possible causes include:

Iron buildup in the body (hemochromatosis)
Cystic fibrosis
Copper accumulated in the liver (Wilson's disease)
Poorly formed bile ducts (biliary atresia)
Inherited disorders of sugar metabolism (galactosemia or glycogen storage disease)
Genetic digestive disorder (Alagille syndrome)
Liver disease caused by your body's immune system (autoimmune hepatitis)
Destruction of the bile ducts (primary biliary cirrhosis)
Hardening and scarring of the bile ducts (primary sclerosing cholangitis)
Infection such schistosomiasis
Medications such as methotrexate"

My pro time (PTT) is 11.6 and my labs reference range is 8.8 to 12.0 does your lab list a reference range they can be different from one lab to another.

But if your lab uses the same range then yes you are jus a little elevated and that comes with the territory of having cirrhosis.

Do you know your platelet count? Minimun normal generally is 150 mine was about 90 or so before I was cured and now is about 110 so just shows once you remove the cause of the damage we can improve. There is room for hope!

How were you diagnosed with cirrhosis? Did you have a liver biopsy or a Fibroscan test (kind if like an ultrasound with thumps) or a Fibrosure blood test.

Have you had an ultrasound? Did you have a blood test called AFP that test is used to see if you maybe are getting HCC (liver cancer) it doesn't prove you have it if it is elevated just means they would need to take a closer look. With having cirrhosis we are at increased risk of HCC. Have you had an upper endoscopy to check for esophageal varicies? To you have any edema (lower leg swelling)? Cause may be difficult to determine if you are obese.


Basically, if the cause of your cirrhosis is NAFLD the ball is in your court about where you want to go from here.

[marymmma]

That sounds wonderful Lynn! Now I will focus on the cirrhosis and try to lose as much weight as I can before my appointment with the specialist on May 2.

It's so weird that I was diagnosed with fatty liver just a few months ago and it went that quickly to cirrhosis. I had a ultrasound then and no cirrhosis was found. But regardless, I have it now. I don't know about the tattoo. I'd hate to think it was because of that. It was my son's best friend that did it. She owns a tattoo shop. I never planned to get a tattoo but my son (28) died three years ago and she wanted to do a memorial tattoo of my son on my arm. I can't imagine that she'd have dirty needles.

I also read that you can get it from obesity, high blood pressure and diabetes...a combination of three illnesses that becomes known as metabolic syndrome. And I have all three, plus high cholesterol.

I know I do not have it because of drinking because I don't drink. I'm 59 years old and haven't had sex in 8 years since my husband left me. I found out he was cheating on me at the end so I don't know if he could of given it to me.

Oh, the PTT test did not list a reference range.
I don't know if they did a platelet count. They didn't tell me if they did.
I was diagnosed with cirrhosis by ultrasound but I don't know anything about thumps.
My general doctor said I will probably have to have a liver biopsy but the specialist would decide. So I wait two months to find out.
When they first told me, over the phone, about my ultrasound results, all they said was that I had cirrhosis with a slightly enlarged liver and no masses so I guess that means I don't have cancer but the specialist will probably tell me more.
I had an upper endoscopy about a year and a half ago but for another reason. I have not had one yet since being diagnosed with cirrhosis but I'm sure I will eventually.
Yes, I do have some edema in my lower leg mainly in my left leg. I take lasix.

I thank you so very much Lynn. I have a little hope. Like you said, the ball is in my court now and I'm going to do my best to win this game! I'll let you know whenever I hear anything else

[Lynn K]

Well while you were recently diagnosed you likely had fatty liver for quite a while it take a very long time for early liver damage to progress to cirrhosis.

Ultrasound is not really the best way to disgnose cirrhosis. The Fibroscan is a substitute for needle biopsy it is a simple in office noninvasive procedure hopefully your specialist will have one available or the Fibrosure blood test. Those tests are less accurate in the mid ranges of liver damage than the needle liver biopsy which is considered the gold standard for diagnosis. I have had 4 biopsies over the years of my hep c infection. They are not super fun but are more precise than Fibroscan or Fibrosure.

Presumably it was a licensed tattoo facility using sanitation like autoclaves and if so that would not be where you may have been exposed. Could you maybe have been vaccinated against hep b that would also result in positive antibodies. Hep c is also blood borne and there are folks who have no idea when they may have been infected.

Well really it is the fatty liver caused by obesity not high blood pressure that is just another symptom of  metabolic syndrome but I haven't ever seen where high blood pressure, and diabetes can lead to cirrhosis. Just that  The same obesity caused by metabolic syndrome causes the other symptoms can also lead to cirrhosis what is the fat in the liver that is causing cirrhosis. The fat cells irritate the liver cells causing injury as the cells are injured they can become  scarred and the cells die with time and constant inflammation.

Per the CDC FAQ for hepatitis b

Can Hepatitis B be spread through sex?
Yes. Among adults in the United States, Hepatitis B is most commonly spread through sexual contact and accounts for nearly two-thirds of acute Hepatitis B cases. In fact, Hepatitis B is 50–100 times more infectious than HIV and can be passed through the exchange of body fluids, such as semen, vaginal fluids, and blood. So that is a possibility but unless you can ask him you will never know.

Platelet count is part of the CBC complete blood count test which is one of the 4 blood tests I have every six months. CBC, AFP, BMP (Basic metabolic panel) and hepatic function panel.

Along with an abdominal ultrasound and an annual upper endoscopy which I have done because I had grade 3 esophageal varicies that required banding back in 2012.

I also have some edema in both legs and a small amount of ascities from cirrhosis. I take a diuretic called spironolactone to treat the edema.

Yes no masses on the ultrasound means no liver tumors that is correct

Here is an article about Fibroscan

http://www.northshore.org/gastroenterology/procedures/fibroscan/

[marymmma]

Hi Lynn, sorry that I haven't responded to your latest post on Feb. 28. I haven't been here since then. I've been trying not to think so much about my diagnoses since I won't be finding out anything until May 2. And I've also been concentrating on eating healthier. I've had some success. I've been buying and eating more fruits and veggies and eating oatmeal every morning for breakfast. Also buying low or no salt items that I use to buy with full salt. And I've cut out eating all junk food that I usually eat during the evening and night hours. I do really good most days until right after I eat supper. Then all bets are off. At least I'm munching on stuff I can eat just way too much of it. I am learning though and can't believe the amount of sodium in just about everything but fruits and vegetables. I'm going to attempt tonight to not eat anything after supper except maybe an apple. I've come to love apples!

I figure that I probably did have fatty liver for awhile before I was diagnosed with it because after that I quickly went from fatty liver to cirrhosis (in about a year). I just can't wait until I'm properly diagnosed. I have no memory of ever being vaccinated for HBV.

What I wrote about fatty liver caused by metabolic syndrome is stuff I got off the computer and my interpretation of it so I'm not surprised at all that I got it wrong. lol

I'm sure I didn't get HBV from sex. No doubt.

I'm switching doctors. I'm going to another clinic. They are a bigger clinic and hopefully they will have some experience with HBV. I have an appointment set for March 21st, I believe. I'm just so tired of having a doctor who won't explain test results to me. All I wanted to know was what does "Positive - not infected". I'm still completely baffled by a doctor who tells a patient something but not what it means.

Thank you so much Lynn!

[Lynn K]

Can you find a hepatologist? Especially one associated with a liver transplant center. They are who you should see as you have cirrhosis they will also know about hep b.

[marymmma]

I've heard of hepatologist but I didn't know if you can see a hepatologist at the same time you see a gastroenterologist and I have an appointment with the latter on May 2. When I see my new family doctor later this month, I will ask him and get him to refer me to one associated with a liver transplant center.

[Lynn K]

So a gastroenterologist is all things in the gut while a hepatologist is a liver specialist. But yeah usually an either or kind of thing.

You could have a gastroenterologist who also is associated with a liver transplant center. Not to say you need a transplant just now but it gets you on their radar so they know about you. They also have a higher ability to monitor patients with advanced liver disease like cirrhosis.

Just a tip you should start getting copies of your lab test and other diagnostic test results. My doctor uses a web site called MyChart where I can see my lab tests anytime. Gives you a better idea what is going on. Remember they are your tests