We introduced Patient Worthy’s newest and first Contributor living with Cushing’s Disease in, On a Mission to be Fit and Fabulous, Meet Liz. This is Part 2 of Liz’s official interview.
Part 2 is focused on Liz’s diagnosis and treatment.
Click Here to read Part 1: Was I Crazy? Could I Really Be One of 3 in a Million?
Liz had been dealing with her varying symptoms for just about 2 years.
Her period was finally “normal” and things had gotten better. She felt happier and motivated again. But Liz began to think that she had an eating disorder and the fatigue she was experiencing was too much to handle. “I could sleep 9 -10 hours and still not be able to get out of bed. I still didn’t think that Cushing’s Disease was an option, but enough was enough. I was going back to my doctor.”
“HOW COULD I BE A FAT TRAINER/NUTRITION COACH? I didn’t want to feel gross, sluggish, blah, irritable, have trouble sleeping, have low-energy workouts… I was totally over it.”
Tests confirmed Liz’s thyroid hormones were low (T3 and T4) without having elevated TSH, or thyroid stimulating hormone, which is produced by the pituitary gland and produces triiodothyronine (T3) and thyroxine (T4). Despite thyroid medication to help regulate her hypothalamus’s TSH releasing, Liz continued to gain weight slowly, and she was having trouble losing it.
Liz’s Life Changed on August 16, 2015
“Finally, I knew what was wrong with me after 3 years of symptoms. I wanted to FIX IT ASAP! Of course I was impatient, I wanted to live my life!”
The MRI showed an adenoma on her pituitary, and she was ecstatic. This tumor was secreting ACTH into her adrenals and pumping out cortisol. Some cortisol is necessary for the body to be alert and break down fat, but too much cortisol leaves one sleep deprived, fatigued, gaining weight, and leading to other chemical imbalances and diseases. It all made sense and Liz recalls crying tears of joy when she saw that tumor. She couldn’t have been more excited to meet with her new endocrinologist and neurosurgeon.
“YES! THEY FOUND A TUMOR! I’M NOT A CRAZY PERSON! I couldn’t have been happier for my diagnosis!”
Liz had surgery on October 5, 2015
I had brain surgery through my nose called transsphenoidal surgery. The worst part was being in recovery and not being able to breathe through my nose. I also had an Inferior Petrosal Sinus Sampling (IPSS) where catheters were run through my femoral veins in my groin, up through my heart and up to my sinus cavity.
It was so strange. I was sedated but awake.
Liz has had surgery, and will tell anyone that asks her that her situation could be so much worse. If left unmanaged, Liz would develop diabetes and hypertension among other side effects.
“Mostly everyone freaks out when I tell them, but I casually say it’s just a small brain tumor-not cancerous.”
“The whole thing is scary,” says Liz.
“My biggest concern is not being able to get back to my normal self. Will I be on medication my whole life and still not feel 100%? Will I ever be able to successfully lose weight? Have kids? Will the tumor grow back or get bigger?”
Liz’s neurosurgeon wasn’t 100% confident that she truly had Cushing’s Disease because she didn’t look or act like a typical “cushy”. But, Liz is a fighter. She always has been. And she is incredibly humble. Even though it didn’t feel like she was managing her symptoms, she was.
Suffering was a part of my journey. My next turning point will be coming off medication and undergoing another surgery.
Through her dedication to diet and exercise, meditation, prayer and keeping as positive an attitude as possible, Liz has overcome so much already. She’s had surgery but is not ALL better. Such is life with a #raredisease. Liz will continue to have tests conducted, and work through managing her medication doses to control her cortisol with her healthcare team. Acupuncture and cupping have become part of Liz’s regimen, on top of diet, exercise and seeing her therapist.
“I came to accept myself for who I was, and stopped caring about my appearance and only focused on my happiness. This made a dramatic difference, because I learned to train my mind.”
Stay tuned for Part 3 of Liz’s interview, same time Monday!
Get inspired to get super healthy with Liz on Facebook (be sure to like her Pro Page) and Instagram!
Follow PW Cushing’s Contributor PW Cushing’s Contributor Liz on Instagram @Liz_Calabro_Stacked for daily inspiration pics, workout routines and nutrition tips!
