Originally shared May 2025

My name is Alex and I was diagnosed with Cushing’s Disease in 2021. My Cushing’s journey started back in 2018 when I was just 25. At first, I remember that I was slowly gaining weight despite my healthy lifestyle and being very active. I remember that my legs and feet were constantly bothering me and achy all the time. When looking at my legs I remember thinking “why do they look swollen (and not fat)”. I also remember my menstrual cycle becoming very irregular despite being very normal and regular all my life. I was not one to take birth control but had gotten an IUD, however, after about six months of having it and noticing the menstrual irregularities and the weight gain, I decided to have it removed. My OBGYN at the time said that she would remove the IUD but that it was not the cause of my symptoms. Next, I remember discussing with my doctor that possibly my thyroid was the culprit since I had been diagnosed with hypothyroidism when I was in my teens. My primary care at the time mentioned Cushing’s but said I did not look like I had it and that was where the conversation ended. At that point we tried different medications and dosages to treat my hypothyroidism to see if that made any difference which it did not. She sent a referral to an endocrinologist, but they would not see me due to an issue with the referral. Then the COVID-19 pandemic happened, and I stopped pursuing a diagnosis.

During the three years leading to my diagnosis, I started to notice that my face was changing, I was becoming moody all the time, and my menstrual cycle was nonexistent. I continued to gain weight slowly despite trying many different diets and continuing to work out a lot. In my case, my weight gain was not specific to my abdomen, even though I was often bloated, my weight gain seemed to be in my legs, arms and face. I also started to lose my hair which was always greasy despite washing and blow drying it every day. I had multiple skin issues like rashes and uncontrollable acne. I remember progressively getting more and more tired and constantly having a dull headache. Getting up in the morning for work was next to impossible, yet I was struggling to go to sleep at night because I was wide awake. I was becoming more self-conscious every day trying to cover up my bright red cheeks and my thinning hair. I reapplied deodorant and perfume multiple times a day because I was sweating like a pig even though I was SO COLD all the time. I remember thinking it was so odd that I would drink so much water, yet I would only pee once throughout the day. I was struggling at the job I had done for many years without issues, and I would call my fiancé, now husband, crying every day on my way home from work because I felt so depressed, but I couldn’t tell you why. 

It wasn’t until a couple months after we got married that my husband and I got COVID and all my symptoms seem to intensify by 100. My legs and feet hurt so bad it was hard to sleep, walk or even stand. My headache was splitting and no painkiller helped. I was so out of breath after standing or walking for 30 seconds. Luckily for me, a friend of mine and my husband, who recently became a Family Nurse Practitioner, called me up to come see me at work for some help. I explained to her that I was still out sick (it had been 3 weeks at that point) and I began to tell her all of my symptoms. She brought up Cushing’s and sent me an article to read about it and said she would schedule me an appointment and send me to do some bloodwork. At that point, it was the second time I had heard about “Cushing’s”. I did a deep dive and read every article I could find on the internet about it before my appointment with her to review the test results. I remember reading the symptoms and thinking “this is it, this is what is wrong with me”. When I went to see my new NP, not all of my test results had come in yet, we were still waiting on the ACTH results, but my AM cortisol was actually low. We discussed the different types of Cushing’s and the different tests for diagnosis. I explained that based on my symptoms and my research I thought I had a reverse diurnal rhythm and asked to do midnight saliva cortisol testing. She ordered those tests and also called the lab for the ACTH results. I explained to her that I had been having vision issues in my right eye only (which was strange after having LASIK several years before) and so I felt that I had pituitary Cushing’s. Within a couple hours, she called me back saying your ACTH results are elevated and she also sent me for the MRI. Within a couple weeks, my saliva cortisol tests came back high and my MRI confirmed a 7mm tumor on my pituitary. I WAS FINALLY DIAGNOSED WITH CUSHINGS DISEASE! After consulting her colleagues, I was referred to a Neurosurgeon. At the same time, I called my employer to fill them in and they pulled strings to get me seen by a local endocrinologist the next day. He repeated the labs I had already done and also ordered the Dexamethazone Supression Test and a 24hr Urine Cortisol test, both of which came back elevated. He confirmed my diagnosis and reviewed my MRI with me. He explained that my tumor was near the carotid artery, making it a more delicate and challenging surgery. He also referred me to the same neurosurgeon as my NP. Within two months, in April of 2021, I was scheduled for surgery and referred to a neuroendocrinologist at the hospital where my surgery was going to take place, to be a part of my healthcare team.

Within a couple days of my first surgery, my cortisol dropped to zero and my surgery was declared successful. I was put on HC which I weaned off within 2 months and went back to work. I tried so hard to be positive and to “give it time” for my body to heal but I did not feel like I was improving. My labs were still in range but they were slowly creeping up. I ended up going back on medical leave from work after 3 months because I could not handle it. I was extremely depressed, tired, in pain, and unable to lose weight. I had been repeating cortisol and ACTH labs and the numbers were in range but increasing. It was not until my 1 year post op MRI that it was discovered that my tumor had regrown and was actually bigger than before. My initial thought was, “Yay! I’m NOT crazy!” but when I met with my neurosurgeon to discuss the results and the next steps it did not go how I expected. When I was first diagnosed, I was very anti-radiation and anti-medication. To me, surgery was how I could be cured of Cushing’s and get my life back, and that is all I wanted. During my appointment my surgeon recommended Radiation Therapy (Cyberknife) due to my tumor being on the carotid artery and the cavernous sinus and then to begin medical therapy to manage my disease until the radiation could take effect, because he could not safely remove all of the tumor. I then asked if he would perform a second surgery to remove as much of the tumor as possible before radiation treatment in hopes that the less tumor cells there are that the faster the radiation might work and he agreed. In July of 2022 I had my second surgery, this time I was released quickly and did not need Hydrocortisone. At the end of August after being cleared from the brain surgery, I had 5 days of Cyberknife Radiation Therapy. Each treatment took about 15 minutes and was pretty easy. I remember a weird smell in my sinuses after, a slight headache, and being very tired but other than that, no side effects from it. After my last treatment, I began taking a cortisol lowering medication. Within a few hours of my first dose, I noticed that my hands were smaller, and my wedding rings were loose on my finger. I went back to work a couple months after starting the medication once I felt stable.  I was on this medication for 6 months before my liver enzymes started to increase at an alarming rate. At this point my neuroendocrinologist switched me to Isturisa. Within one week I lost close to 15lbs. I was tired, nauseous, had diarrhea, a constant headache and my body ached. To me, this was the cortisol withdrawals I was expecting, and a sign that it was working! I had hope again, but work was still so hard for me especially dealing with these symptoms/side effects of treatment. I had these symptoms/side effects pretty consistently for 9 months, then one day I woke up and I was no longer feeling like this all day every day. I stopped feeling constantly nauseous, my headaches went away and my body didn’t ache all the time. I still have good days and bad days, and I don’t consider myself to be 100%, but this was so much better than I had been in a long time. I have now been on Isturisa for 2 years to manage my Cushing’s.

Going through this made it very difficult to continue working even though I tried so hard to. I went out on short term disability multiple times over the course of 3 years (during my initial diagnosis and treatment) and since I still struggle with physical and mental fatigue, it was difficult to do any regular job, let alone the high stress and long hours job I had been doing for over a decade. At no point during this journey did I think I wouldn’t be able to continue to work like normal. But after 3 years I finally decided, with the support of my husband and family, that it was time to “retire” and focus on my health and letting my body heal. This is when I asked my Doctor how I could get involved or work in the Cushing’s community. I wanted to use my experience and lack of “classic weight gain in the abdomen” to help others with Cushing’s. That is when he got me connected with Recordati-the manufacturer of Isturisa, where I am proud to say I am an Isturisa Patient Ambassador! I have been able to use my experience and success on this medication to help others fighting this battle which is exactly where I think I’m meant to be. Through being a patient ambassador, I got connected with Leslie here at CSRF and have been able to join her team to meet more people with Cushing’s as well as learn more about it and help spread the awareness.

Alex Hafez, Tucson AZ