Hepatomegaly & T1D - Mauriac Syndrome

Hi guys! My name is Kiara. I am from South Florida and I’m 20 years old and I’ve had T1D for about 13 years now.

I was recently (about a year ago) diagnosed with Hepatomegaly (enlargement of the liver) after suffering severe abdominal pain from January 2021- present day. I was in and out of the hospital every single month of the year of 2021. My doctors every visit would do C-rays and tests and all they said was that my “liver enzyme levels were EXTREMELY HIGH” but they couldn’t decipher what caused it. After months and months, we went about the last resort and I received a liver biopsy that came back with my diagnosis. Hepatomegaly due to uncontrolled T1D. The combination of T1D and Hepatomegaly is known as Mauriac Syndrome which is a VERY rare condition that is never really seen.

No doctor has been able to help me. I’ve been to specialists and many hospitals and no one has any information. I know that the main thing is to get my T1D under control but it’s hard to even get up in the morning when I’m consistently in pain. It’s been like this for over 2 years now. Also, before my diagnosis, in December of 2020, I caught pneumonia and was hospitalized for a month and lost 40 lbs. and I don’t know what to do. I can’t gain any weight and it hurts to even lay down most of the time. I’m slowly becoming more depressed and I just need some advice.

hello @Kiarap67 sorry to hear about your troubles. this is an entirely non-professional self-help forum and you are welcome to ask about anything, but no one here can give you medical advice, or referrals. I do hope you have found a endocrinologist and urge you to work with them, they can be extremely helpful the first couple of years with understanding how to treat your own T1. I know it is a burden, and I know for a fact you didn’t volunteer to get sick, but T1 is a self-managed disease and we end up, after some time of learning, doing quite well managing our blood sugars. I hope you are getting the medical attention you need, and if you need to know how T1 affects us or how we do things like juggle food activity and insulin every day on a hour-by-hour basis you will definitely get feedback… Some of our members here have been T1 for 70 years. Anyway cheers I hope you can get feedback.

Hi @Kiarap67, Kiara,
I had never heard of your condition, so had to do a little research. Per Joe, I’m wondering if you’re seeing an endocrinologist. Since getting your T1D under control is the first step, and thinking you might need to be hospitalized for the start of that process, an endo would be my first step. I know what you mean about pain and depression crippling your efforts to get better. It’s very important that you decide to try again. Every day. You can live a long and satisfying life with T1D.

Yes I have an Endo… I’ve had diabetes for 13 years. The Hepatomegaly recently came into play. The new condition is VERY rare. The Endos have no type of education on this condition and neither do specialists. I’ve done my own research on it and actually had to self diagnose. I’ve been the one doing all the work. It starts with getting the diabetes back under control but that’s very hard when the Hepatomegaly PHYSICALLY is very painful. VERY. Thanks you for your words

Hi @Kiarap67 . I’m so sorry to hear what you are going through. Have you considered going to a pain management specialist? They should have a variety of tools to help you treat the pain; and while ideally you want to treat the condition that’s causing it, they may be able to help make it more bearable.