My Journey With Hyperprolactinemia

 By Rachel Cedeck

Back in June of this year, I started becoming sick. On a daily basis, I was having severe migraines and battling blurry vision. Icing on the cake, was I was rapidly losing weight. I knew something wasn’t right, so I contacted my doctor and scheduled an appointment.

On the day of my appointment, I had blood work done and was told that my results would be available 24-48 hours later. The next day while I was at work, I received a message that I had elevated levels of the hormone prolactin in my blood. Typically, normal levels should range between 4.8-23.3 ng/mL. Unfortunately, results showed that my levels were in the low to mid 40’s. My doctor expressed her concerns, and referred me to an in-house endocrinologist for future evaluation.

A week later, I was in the endocrinologist’s office. He and I reviewed my test results as well as discussed my family history in regards to both endocrinology and neurology. Based off that content, he made the decision to have me undergo an MRI of my brain and pituitary gland. The symptoms that I presented with at that time were representational of a possible pituitary tumor. We scheduled for the procedure to be done a week later on July 26th (That day, ironically enough, was my scheduled last day of work at my employer. Crazy timing, right? I was actually set to begin a brand new job the following Monday).

The day of the procedure I was nervous beyond belief. Some of my sweet coworkers and boss (shout out to you, Karen and Dana) celebrated my last day by giving me a card and donuts from one of my favorite bakeries (which I embarrassingly enough, crushed). I clocked out, said my goodbyes, and headed home to meet my rock star godmother, who was in town for a long weekend visit. She drove me out to a local hospital, and remained there for the entirety of the procedure. At the conclusion of the MRI, I was informed I would receive the results that following Monday.

Monday rolled around, and as I was leaving from my first day on the new job, I pulled out my phone and noticed I had a voicemail message from my endocrinologist’s office. I sat in my car and played the message-the test results showed that I did not have a pituitary tumor, but that I did in fact have the pituitary disease hyperprolactinemia.

I followed up with my doctor, and a treatment plan was put into place-I was to begin taking the medication Cabergoline, which would help regulate my hormone levels. I was informed that some of the side effects were less than desirable, and that I very well might have the urge to quit taking the medication, but I was encouraged to strive and maintain the course of action.

This has not been an easy thing to do by any stretch of the imagination. I’ve had to battle nausea, vomiting, dizziness, and light headedness. Some days, it’s difficult to get out of bed, let alone have the desire to eat. And when my alarm goes off, reminding me to take the medication, I painstakingly sometimes get sick to my stomach.

Yet every day, I am still making a choice to positively fight through it, and I give each day my very best efforts. I know there was a reason for this diagnosis, and to be honest, I’m grateful for it.

I have learned so much about myself, and that I have an abundance of strength, courage, and bravery within me. I have been reminded throughout this journey of God’s love for me, as well as that of my family and friends; simply put, they are my champions.

It is my hope that in sharing my story, others can become more educated regarding pituitary diseases, and that more awareness and light can be shed on them.

I pray that all who took a moment to read my story can walk away with this truth ingrained in their minds, and printed on their hearts: You are never alone in your battles and struggles, and they do not define who you are. You are loved. And you are a fighter.

Editor’s Note: I recently followed up with Rachel to see how she was doing. I’m happy to report that Rachel’s prolactin levels have gone down. She was taken off the Cabergoline for now and is being monitored by her endocrinologist. Her endo suspects that a medication she was taking may have caused the rise in her prolactin levels and she has also stopped taking that medication. She said that she still has an occasional bout of headaches and blurry vision, but the frequency has been reduced. Thank you Rachel for sharing your inspirational story!

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