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Empowering Yourself Throughout Your Liver Health Journey

Liver disease affects millions of people in the US, and every journey looks different. Whether you have just been diagnosed, are managing a chronic condition, or are caring for someone with liver disease, understanding your health and learning how to advocate for yourself can make a meaningful difference in your care and quality of life.

Your liver plays a vital role in your body. It helps process nutrients, filter toxins, regulate blood clotting, and support digestion. When the liver becomes damaged or inflamed, it can affect nearly every part of your health. Liver disease can develop from many causes, including viral hepatitis, metabolic dysfunction associated steatotic liver disease (MASLD), metabolic dysfunction associated steatohepatitis (MASH), alcohol-associated liver disease, autoimmune conditions, genetic disorders, medication-related injury, and liver cancer.

Because symptoms are often subtle or there are none in the early stages, many people do not realize they have liver disease until it has progressed to later stages. Common symptoms may include fatigue, abdominal pain or swelling, jaundice (yellowing of the skin or eyes), itching, nausea, loss of appetite, swelling in the legs, confusion, or unexplained weight changes. Paying attention to changes in your body and discussing them openly with your healthcare provider is an important part of self-advocacy.

Why Self Empowerment Matters

Being an active participant in your healthcare can help you better understand your condition, make informed decisions, and improve communication with your medical team. Self-advocacy means asking questions, sharing concerns, understanding your treatment plan, and speaking up when something does not feel right.

You deserve to feel heard, respected, and comfortable with your healthcare provider. If you feel dismissed, disrespected, rushed, or unsupported, it is okay to ask questions, request more information, or seek care from another provider. Finding a doctor who listens and communicates clearly can make a significant difference in your healthcare experience.

It is also okay to seek a second opinion. Many people living with liver disease choose to get additional input, especially when facing a new diagnosis, ongoing symptoms, or major treatment decisions. A second opinion can help confirm a diagnosis, provide additional treatment options, and help you feel more confident in your care plan.

Asking for a Referral to a Specialist

Primary care providers often help identify symptoms and order initial testing, but many liver conditions benefit from evaluation by a hepatologist, a doctor who specializes in liver disease.

You should feel confident asking for a referral to a specialist if:

Your liver tests remain abnormal
Your symptoms are worsening or not improving
You have been diagnosed with MASLD (MASLD/MASH), hepatitis, cirrhosis, or another chronic liver condition
You want a more specialized evaluation or treatment plan
You feel uncertain about your diagnosis or next steps

Asking for a referral is not being difficult or questioning your provider. It is an important part of advocating for your health and making sure you receive the care and expertise you need.

If You Are Newly Diagnosed

Receiving a liver disease diagnosis can feel overwhelming. You may hear unfamiliar medical terms, face lifestyle changes, or feel uncertain about the future. It is okay to take things one step at a time.

Start by focusing on understanding your diagnosis and next steps. Helpful questions may include:

What type of liver disease do I have?
What may have caused it?
How severe is my condition?
What symptoms should I watch for?
What lifestyle changes should I make?
Do I need additional tests or monitoring?
Should I see a hepatologist?

Taking notes during appointments or bringing a trusted family member or friend can help you remember important information and feel more supported.

Living With Chronic or Advanced Liver Disease

For people living with chronic liver disease or cirrhosis, ongoing communication with your healthcare team becomes even more important. Symptoms and treatment needs can change over time, and regular monitoring helps identify complications early.

Keep your providers informed about any new or worsening symptoms, medication side effects, swelling, confusion, changes in appetite, or emotional health concerns. You may also want to ask whether your condition has changed, if your treatment goals should be adjusted, or whether additional support or specialist care would be beneficial.

Common Tests Used to Diagnose Liver Disease

Diagnosing liver disease often involves a combination of blood tests, imaging studies, and sometimes specialized procedures. Understanding these tests can help you feel more informed and prepared during your healthcare journey.

Common Blood Tests

ALT and AST: Measure liver inflammation or injury
Bilirubin: Evaluates how the liver processes waste
Albumin: Assesses liver function
Alkaline Phosphatase (ALP): May indicate bile duct or liver problems
INR or Prothrombin Time: Measures blood clotting and liver function

Imaging and Procedures

Ultrasound: Common first test to look for liver damage or fat buildup
CT Scan or MRI: Provides more detailed images of the liver
FibroScan: Measures liver stiffness and scarring
Liver Biopsy: Examines a small sample of liver tissue
Endoscopy: Checks for enlarged veins related to advanced liver disease

Questions to Ask Your Doctor

Preparing questions ahead of appointments can help you feel more confident and make the most of your visit. Consider asking:

What is the exact name of my liver condition?
What caused my liver disease?
How severe is my condition?
What lifestyle changes are most important for me?
Are my medications safe for my liver?
What symptoms should I watch for?
Would seeing a hepatologist be helpful?
Should I consider getting a second opinion?
How often do I need follow-up testing or monitoring?

If something is unclear during an appointment, it is okay to ask for clarification, request written information, or ask your provider to explain things in a different way.

Supporting Liver Health

While not all liver diseases can be prevented, there are steps people can take to support liver health and reduce additional liver damage:

Maintain a healthy weight
Eat a balanced diet
Limit or avoid alcohol
Exercise regularly
Take medications only as directed
Avoid supplements without medical guidance
Stay up to date on recommended screenings and vaccinations

You Are Not Alone

Living with liver disease can be challenging, but you are not alone. The American Liver Foundation is here to support you, no matter where you are on your liver journey. With the right information and open communication, you can take meaningful steps toward managing your health. Your voice is powerful.

The American Liver Foundation offers virtual support groups and Facebook communities where individuals and families affected by liver disease can connect, share experiences, and find encouragement from others who understand their journey.

You can also call our Helpline at 1-800-465-4837 for information, resources, and support.*

*Please note: Our Helpline staff cannot provide specific medical advice, diagnosis, or treatment recommendations.

Caregiver Resources

Diagnosing Liver Disease: Biopsy, Risks & Preparation

Healthy Lifestyle

Medical Terms for Liver Disease

Palliative Care: FAQ

The Stages of Liver Disease

Things to Know About Treatment

Veterans Information Center

Video Library