Diagnosed With Cushing's Syndrome
Back in summer 2017, I learned that I would be going under testing for Cushing's Syndrome. I met with my Endocrinologist and learned about all the testing I would be going through. I felt it was something I needed to do. I wanted to get my weight loss out of a stall, and eventually eliminate medications I no longer needed to be on.
I was already on a weight loss journey and lost close to 80 lbs before I met with him. He was surprised that I was able to get that much weight off. As we started testing my Cortisol levels were all over the place. I had to do a series of blood and saliva tests that were timed. Plus, taking in urine samples that were collected over 24 hours, not just once, but several times over a few months.
He collected enough data that it warranted a visit with a Neurologist down at U of U. He was sending me to the best of the best for more testing. That is where I underwent a series of MRIs, plus more blood tests. They decided that I needed to have blood taken from certain veins that were a small surgical procedure.
I underwent that procedure on April 30th, 2018. Dan had to take me in early in the morning, and they took a series of tests. Come to find out they couldn't get all the blood they needed because my veins were too curvy. They sent the blood samples to the labs, and I would have to wait for about three weeks for the results.
The results came in, and I met with my doctor's team. I had to make a choice that day to go under surgery where they will go and take the node off the pituitary gland and send it to the lab to find out whether it is Cushing's syndrome. You see my blood tests came back inconclusive. If I did the surgery, there could be more complications with infertility, or it could help. The doctor walked out as I calmly called Dan. I asked him, what I should do. He asked me what I felt was right. Deep down I felt I needed the surgery, so when I got off the phone I scheduled it.
A CHOICE THAT CHANGED MY LIFE
On July 12th, my brother's birthday, I decided to go in for the procedure. That same week Dan was going to be at scout camp. I asked my sister if she would be willing to come down with me while I was in surgery, and until Dan could come to the hospital. I know Dan goes stir crazy in hospitals, and the best thing for him was to be doing something productive with the youth in our ward.
My sister drove us down there to the U of U, and I got ready for my surgery. She could tell I was nervous and helped keep me calm. When they rolled me away and told her I will see her soon. The surgery was a success. I had to stay in the neurology ICU for almost three days, then I got transferred to another room overnight, That was an experience in itself, but the staff helped take care of me.
Coming out of surgery, I felt more pain so they helped keep me comfortable, but I asked to start reducing the pain medications. Having Cushing's syndrome your body naturally produces a high amount of cortisol, so the pain was never an issue for me.
When I went home, I thought my recovery was going to be easy. That I would be on my feet in a few days. It took me a few months to not feel as tired or feel different pains I never felt before. I didn't get the okay to start to exercise till October 2018, which was hard for me. Before I loved all my gym classes, and when I started to go back I had to slowly start again.
MONTHS OF RECOVERY AND WHAT THEY DIDN'T TELL ME
Things they didn't tell me. I couldn't blow my nose or drink out of a straw for four to five months. Wait for what? Yep, it's true. I couldn't put pressure on my nose, because I had to wait for a little hole In my nose to heal. For the surgery, they went up my nose to remove the node on my pituitary gland. If they couldn't access the node there, they would have had to go through the roof of my mouth. I thank God every day that it was through my nose.
I now have to have MRIs every year for the next few years, until they feel comfortable to only check every few years. Two weeks after my surgery is when I finally heard that I indeed have Cushing's syndrome and that it's in remission.
THE BENEFITS OF THE SURGERY
What were the benefits of the surgery? I lost over 100 lbs. I got to drop most of my medications. I still have to take my thyroid medication, and I still have PCOS. So, metformin is still in my regimen. I feel so much healthier, and happier knowing that my miscarriages were caused by something out of my control.
Do I wish I caught it earlier? My infertility team knew about it, but they didn't know the right diagnosis. My answer is NO, because I have the right medical team for me now, and I wouldn't have had the Neurological Surgeon that I had, who is world-renowned. I love my Endocrinologist and know that I was sent to him at the right time.
I am now 23 weeks and 3 days pregnant. I feel timing happens for a reason. Miracles still happen, and I know that I was needed to go through all these medical issues to help me, and help others along the way. Life is a journey, and I am learning to love my womb, and what it's doing now today, as it's growing our baby boy!
Here is a printable of some common signs of Cushing Syndrome. I wish I knew what to look for, or had a list to take to the doctor before we did all the testing. I knew nothing about this disease, and hope I can educate others.
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Thank you for sharing your journey with Cushing’s syndrome. I didn’t know this existed. You will help others who are overweight to ask their doctor about this. Glad you are recovering.