My roommate in college suffered from this. The two biggest things she complained of as direct results of the disease were weight gain (and her inability to really lose weight no matter how hard she tried) and depression. She was constantly trying out different medications and every time her meds changed she would be in bed for days - just sleeping and sleepy a lot. I also remember she had a diet she was supposed to stick to and didn't, which also resulted in major energy loss and headaches.
She actually had several symptoms that led to the diagnosis. She said it happened in high school when she went from being a straight A student to C's and D's. She felt tired all the time, she lost her ability to concentrate (she was originally diagnosed with ADHD and when the meds didn't do anything she was re-evaluated).
I'm guessing you are already experiencing many of these symptoms. I think those who live with this disease relatively comfortably are faithful about taking medications, but more so, I think you might be looking at a very strict nutritional plan. It seems to me that it is controllable but it takes more than just medication.