Why Does Fatigue Happen in AIH?

Apr 15, 2026 | Uncategorized

Fatigue in Autoimmune Hepatitis (AIH) Blog Series: Why Does Fatigue Happen in AIH?

Fatigue is one of the most commonly reported symptoms in autoimmune hepatitis (AIH). It’s also one of the hardest to explain to others because it doesn’t always show up on lab tests. You might feel exhausted even when your doctor says your liver enzyme levels are within the normal range.

A large European study involved over 1,100 AIH patients. It found that 77% were in “biochemical remission.” This means their blood tests had returned to normal. However, their quality-of-life scores remained significantly lower. These scores were still below those of healthy people. Fatigue, pain, and anxiety were among the most common symptoms still reported.

In other words, normal blood tests do not always mean normal energy levels. Researchers now say that true recovery from AIH must include how you feel. It’s not just about what your labs show.

Fatigue happens for various reasons, and the answer is rarely simple. In most patients, it is caused by a mix of factors occurring simultaneously, rather than just one. This blog post walks through the main causes doctors look for, so you can better understand what might be going on in your own body and have a more informed conversation with your care team.

1. Your Immune System May Still Be Active

AIH happens when your immune system mistakenly attacks your liver cells. Even when things seem to be under control, your immune system may still release small chemical signals. These are known as inflammatory signals. These signals can travel to the brain and affect how you feel.

Scientists call this “central fatigue.” It is fatigue caused by changes in the brain and nervous system, not just by tired muscles. Research in other autoimmune diseases has found that inflammatory signals can affect brain chemistry. This includes systems that control energy, mood, and motivation.

Think of your immune system as an alarm system. In AIH, it can go off even when there’s no real danger. All that alarm activity takes energy. It can leave your brain feeling foggy and worn out, even if your liver tests look okay.

2. Your Medications May Play a Role

The medications used to treat AIH, especially corticosteroids like prednisone, can affect energy levels in several ways. They can disrupt sleep, affect mood, change blood sugar, and cause weight changes, all of which can contribute to fatigue.

The large European study mentioned earlier found that patients taking corticosteroids were 75% more likely to report moderate-to-severe quality-of-life problems. This was compared to those who were not on steroids. This doesn’t mean you should stop your medication! It is critical to your liver health. It does help explain why fatigue can be so persistent.

What can you do?

  • You can look up specific medication side effects through the NIH MedlinePlus drug database at medlineplus.gov.

What can you ask your doctor?

  • Could any of my medications be affecting my sleep or energy levels?
  • Is there anything we can adjust? (Medication review is an important part of managing fatigue.)

3. Inactivity During Flares Can Weaken Your Body

During active disease or a hospitalization, most people naturally move around less. Over time, this can lead to deconditioning, where your muscles lose some of their strength and stamina. When your body is deconditioned, even small activities can feel exhausting.

The good news is that this can improve. Research across many chronic liver diseases has shown that gradual, gentle exercise can reduce fatigue and improve quality of life over time. The keyword is gradual. Some great places to start are short walks, gentle stretching, or low-impact movement.

One AIH patient in a research focus group put it this way: “My diagnosis made me more active. But I’m able to tolerate the activity too because I know how important it is.”

What can you ask your doctor?

  • Is it safe for me to start a light exercise routine?
  • Could a physical therapist or exercise specialist help me get started?

4. Mental Health Is Part of the Picture

Living with a chronic illness is hard. The stress, uncertainty, and physical toll of AIH can affect your mental health. Mental health directly affects energy levels.

Studies show that depression and anxiety are more common in people with chronic liver disease, including AIH. One study of 140 AIH patients found that depression had a very strong connection with chronic fatigue. This is not a character flaw or weakness; it is a known part of how chronic illness affects the body and brain.

The research is also clear that treating depression and anxiety can improve fatigue. Your care team might ask you about your mood or refer you to a mental health professional. This is a legitimate part of your liver disease care.

What can you do?

What can you ask your doctor?

  • Do you screen AIH patients for depression or anxiety?
  • Should I talk to someone about how I’ve been feeling emotionally?

5. Other Medical Conditions May Be Contributing

AIH sometimes occurs alongside other conditions that are known to cause fatigue on their own. These include:

  • Anemia (low red blood cells, which carry oxygen)
  • Thyroid disease
  • Diabetes
  • Sleep apnea
  • Vitamin deficiencies (such as vitamin D or B12)

Research shows that up to 45% of AIH patients have at least one additional autoimmune disease. These conditions are often very treatable once found. Your doctor may order blood tests or other evaluations if fatigue continues despite good disease control.

What can you ask your doctor?

  • Have we checked my thyroid, blood count, vitamin D, and B12 recently?
  • Could any of these be making me more tired?

6. Sleep and Nutrition Matter More Than You Might Think

Poor sleep is very common in people with chronic illness, and this makes every kind of fatigue worse. If you have trouble falling asleep, wake up often, or feel unrefreshed in the morning, this is worth discussing with your doctor. Sleep apnea, in particular, is often undiagnosed and can be treated effectively.

Nutrition also plays a supporting role. While no specific diet cures AIH, eating well helps your body function better and can support your energy levels. Many patients in an AIH focus group reported changes in their eating habits after their diagnosis. Several individuals worked with a nutritionist. They aimed to determine what dietary options worked best for them.

A Mediterranean-style diet rich in vegetables, fruits, whole grains, lean proteins, and healthy fats is often recommended for overall health. It also helps reduce inflammation.

What can I do?

Your Fatigue Checklist for Your Next Appointment

In our last blog post, we shared how to track your fatigue in AIH. Bring that data and this list to your next visit. The more specific you can be, the more your doctor can help.

  • How long have I been this tired, and has it changed over time?
  • Is my fatigue worse at certain times of day?
  • Is my sleep quality good? Am I waking up rested?
  • Have we checked for anemia, thyroid problems, or vitamin deficiencies recently?
  • Could any of my medications be affecting my energy or sleep?
  • Should I be screened for depression or anxiety?
  • Is it safe for me to gradually increase my physical activity?
  • Are there any other autoimmune conditions I should be checked for?

Learn More About Fatigue in Autoimmune Hepatitis

Don’t want to wait for the next blog in this series? Watch our educational session on fatigue in autoimmune hepatitis (AIH). Nadia Blessing, PA-C, from Indiana University School of Medicine, explains why fatigue happens in AIH and what patients can do to manage it.

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