Mystery symptoms and MASH: Your doctor is an ally in solving the puzzle

Long before I ever set foot inside my gastroenterologist’s office to discuss my liver health and metabolic dysfunction-associated steatohepatitis (MASH), I was diagnosed with nonalcoholic fatty liver disease at my primary care doctor’s office. It had been a long time coming. I’d experienced strange little symptoms here and there, but eventually, those symptoms multiplied into larger problems.

When I was younger, I was diagnosed with hypothyroidism. It started with heavy fatigue that wore me down as a young newlywed. I found myself trapped in a brutal cycle: waking up after eight hours of sleep still exhausted, struggling to function at work all day, then crashing on the sofa after dinner every night. I’d often wake up to my husband nudging me awake and telling me it was “bedtime.” Medication helped, and eventually I was taken off it. Then, years later, a similar situation developed again.

I knew I had some form of fatty liver disease, but this fatigue felt different, like I was being pulled underwater by strong, unseen currents. I struggled to wake up and stay awake. I could barely eat. I had daily headaches and terrible insomnia. The constant exhaustion reminded me of my thyroid issues, but the other symptoms were completely new. It took several doctors and a great deal of time before my liver disease diagnosis progressed to MASH.

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Connecting the dots

For middle-aged women, some of the most common symptoms of MASH, including brain fog and extreme fatigue, can closely resemble symptoms associated with perimenopause or menopause. Depending on the symptoms, it may take time before a doctor connects the dots. If you haven’t been diagnosed with liver disease but suspect something is wrong, you may need to advocate for yourself and ask for additional testing. If you already have liver disease, make sure your doctors know when new symptoms emerge or existing ones worsen.

My doctor and I work as collaborators. I respect their expertise, and they respect my agency. When you build a strong relationship with your healthcare team, you create a sounding board of professionals invested in helping you achieve your best possible health. When I bring concerns to my doctors, they tend to be receptive because we’ve established trust and they know I listen and follow their medical advice.

When headaches and insomnia weren’t initially mentioned as part of my MASH diagnosis, I eventually brought them up after spending far too much time conducting fruitless internet searches. My doctor explained that while headaches are not considered a hallmark symptom of MASH, they can make sense because of the inflammation the disease causes throughout the body. For some people, that inflammation may intensify other types of pain or discomfort. The insomnia, meanwhile, was likely connected to the brain fog and overall systemic stress my body was experiencing. Strange symptoms sometimes do have logical explanations.

If a new or unusual symptom appears, when should you contact your doctor? My answer is simple: as soon as possible. I’m always surprised by how long I’ve tried to manage symptoms on my own when my doctor may have had solutions available all along. The squeaky wheel gets the grease, air in the tires, and sometimes a trip to the auto shop. You should probably take your health at least as seriously as you take your car when it starts making strange noises.

And don’t be afraid of weird symptoms, either. It’s incredibly easy to scare yourself by spiraling through internet rabbit holes searching for reassurance or answers. Too often, those searches end in confusion and anxiety rather than clarity. I’d much rather ask my doctor an embarrassing question if it means I’ll sleep better that night. Doctors are there to help, not judge.

Note: Liver Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Liver Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to liver disease.