Diagnosed, Dealing & Recovering from Cushing’s Disease

My Cushing’s story dates back to April 2020, possibly even years before. I have always struggled with weight and of course that came with irritability, bad self esteem and just all around anger. I felt like no one could relate to me and I was always told I was too sensitive and hysterical all the time. Well, that put me in a depression for years and I thought I would never recover from it. I changed my diet, started exercising and it seemed like that was not working. I was gaining more weight the more I tried to lose the weight. I knew something was not right with me. I was starting to show signs of purple striae on my stomach and even my breasts. I just boiled that down to I was gaining the weight so rapidly. I decided to go to my primary doctor and explain the symptoms I had been having. She suggested they do some bloodwork and go from there.

Turns out, my white blood cell count (WBC) was extremely high, and I was pre-diabetic. The doctor told me that I must have had a fever or was a little under the weather when I got the blood work done. At first, I was like, Ok, that makes sense about possibly being a little sick while I was doing to the bloodwork, so she suggested getting my blood checked every 3 months.  My WBC was elevated every time! At this point, I knew it was more than just being under the weather that caused the high count. My doctor kept dismissing it even though I kept telling her that something is seriously wrong with me! I know my body and I knew something was not right and I had to get answers right away!

I started doing some research on my own with the symptoms I had and then I started developing more symptoms like hyperpigmentation on my elbows, knees, armpits, neck and even my knuckles. So, I added that to my “Google” research project. And then came the slow start of the moon face and the increased weight gain. I gained about 70 pounds in about 6 months. I was totally miserable at this point in my life seeing the rapid change in my body. The hair on my arms was getting darker and thicker and I started to develop fatty clavicle pads to the point where I was having a hard time breathing at night while lying down. My double chin was turning into a triple chin and I just could not take it anymore! And I was tired of everyone telling me that I was not trying hard enough to lose the weight and not eating properly. They had no clue what I was going through and thought I was just a hypochondriac.

With my devoted time googling all these symptoms, I came across “Cushing’s Syndrome/Disease. As I was going through the checklist, I had every symptom listed. I could not believe it! I may be onto something here! I did research on multiple Endocrinologists and came across Dr. Hamilton Fish. After my first appointment with him, I knew that I had found my lifelong doctor. Come to find out he specializes in Cushing’s and he knew right from the first appointment that I had Cushing’s. Now we had to find out if it was Cushing’s Disease or Syndrome.

Since he wanted me to get established in his office, he suggested I get some routine blood work done along with checking of my ACTH and Cortisol levels. Tests came back and I had an alarmingly high ACTH level, but my cortisol was normal. He then wanted to do a few more tests to make sure 100% that I had Cushing’s. He had me do a Low/High Dose Dexamethasone Suppression Test. (Come to find out, he came up with the baseline for this test) I was like “Wow”, this guy is smart! So, I started with the Low Dose and my ACTH did not suppress, it increased. I then went on to the High Dose and my ACTH suppressed substantially! That pointed to a Pituitary source Cushing’s. So, the next test I did was a brain MRI and sure enough, I had a 6mm tumor on my pituitary! I was in shock! I had so many emotions running through my body. I was happy, sad, and relieved all at once, I did not even know that was possible!

Once I got all the testing completed, the next step was to talk about how to approach this and get it taken care of. Dr. Fish brought up Transsphenoidal Surgery (the name alone scared me) But he went into detail about how they approach it, and it did not seem too bad. At this point with everything I had been going through in my life, I did not see it getting any worse. I was scheduled for surgery in October 2020 at Shand’s in Gainesville, Florida with a wonderful Neurosurgeon, Dr. Steven Roper. They went over the possible risks of having the surgery and the outcome of that surgery. The surgery lasted about 3 hours and I was told it was successful and they were able to pull the tumor out in one piece. When I woke up, the only pain I had was a sore throat! I could not believe it and even the staff as well, they thought for sure I would have actual nose and/or head pain. Don’t get me wrong, I was still uncomfortable with all of the packing in my nose and all the IVs in my arms, but I guess it could have been worse.

I knew there was a risk for a CSF leak and Diabetes Insipidus but fortunately, I never got either of those. I was in the ICU for about a day and half and by surprise, the staff said that my levels are where they should be, and I could be discharged! That was the best news I have heard in a long time! I was sent home with Hydrocortisone to take while I was recovering until the cells in my Pituitary decide to “wake up”.

I was on HC for about 2 ½ months. The tapering process was not easy at times, but it was just one of the steps to take while recovering from this disease. Within those months, I noticed that all my brown patchy knees, elbows, armpits, and neck were cleared up! My skin was brighter and softer, and the best part was that I dropped about 25 pounds my first few weeks. While I was recovering, I started buying all the Cushing’s books I could find! I got so interested in this disease and I wanted to educate myself so I could help other people who are going through this rare and debilitating disease. This is a very scary disease, and I can see why it can take 5 or more years to get properly diagnosed. It carries so many symptoms that can portray other medical conditions. I used to be embarrassed about having Cushing’s Disease, but you know what? It is not like I asked for it! So here is my chance of putting my story out there and hoping to shed some light on this disease and help any other fellow Cushies. Just remember, you are not alone and there is support out there. Do not be embarrassed or scared, we are all here to help and give support and guidance.

Leysa with Cushing’s and post-surgery