Living with Cushing’s Disease, A Patient’s Struggle

Are you misunderstood? Have you been told, it is all in your head? You are fat, get over it. You are depressed; anti depression, medications will help you. Do people look at you differently? These misconceptions are associated with Cushing’s Disease. Living with Cushing’s Disease affects your self- esteem, and injects self-doubt into your daily life routine.

Cushing’s Disease, a seldom seen affliction, is commonly missed by many doctors. The reasons why Cushing’s Disease is misdiagnosed are many. Cushing’s symptoms are commonly seen as individual symptoms, and the individual symptoms are being treated. These symptoms can give mixed messages to doctors, and distort the data. Which in turn, will cause a misdiagnosis, and the patient will only be treated for the secondary symptoms, but the root of the problem still exists, and it is going along with out being treated. You can draw this alliteration, your primary care doctor is treating the branches of the tree, but the entire tree is blighted, and is in need of treatment to cure the disease.

For many years, I followed the doctor’s treatment, but to no avail, the prescribed treatment was only a short-term fix. Many times, the treatments did not work. That left me with many unanswered questions. Where would I go to get the answers? I had no idea where to find the answers.

Furthermore, my personal experiences led me to believe, what I was suffering from was a classic case of depression. Obviously, I followed that course of treatment. If I find a way to get rid of the depression, I will get better. Was it that way? No, it was not that way. I was bounced from my primary care doctor, to a specialist, whom dealt with depression and brain chemistry. She was able to diagnose depression, and prescribe antidepressant drugs. Did the other symptoms go away? The other symptoms continued even though I was on anti-depressant medication. Counseling did not help either. This was a forum, where I could let my feelings out. I could address the issues that were bothering me. Yet, this did not seem to work either. I kept asking myself, what is wrong? I could not see an answer. I let time pass, thinking that time heals all wounds. Quite possible, time could heal this wound. Time did not heal this would, and it continued to grow. As time passed, I grew more and more despondent. Depression ruled my life. On top of that, my doctors told me it was all in my head. What was I to do?

Rock bottom was closely approaching, and there was no way I could avoid it. More questions came into my head. I kept asking myself, do I need to do something? I finally took a “leap of faith,” and enrolled in a clinical trial for anti-depression medication. Now, I have something to work with. Have I found the cure for what is causing me to think this way? I thought I did. Was I wrong?

During the enrollment phase of the clinical trial, I was required to have a physical. That went fine. However, the doctor performing the physical examination, recognized many of the physical conditions I had on my body resembled conditions and symptoms associated with Cushing’s Disease. She asked me if I had Cushing’s Disease. I couldn’t answer her, because I did not know what Cushing’s Disease was. I listened to her advice, and followed up with my primary care doctor. My doctor and the nurse practitioner performed all types of blood tests to exclude Cushing’s Disease. They were not able to either exclude, or include Cushing’s Disease. My primary care doctor felt my Cortisol levels were OK. The levels came back at 23. They are supposed to be less than five. Something is wrong with this picture. He felt the Cortisol levels were nothing to be overly concerned about. I felt the Cortisol levels were something to be concerned about. I went for the second opinion.

I thought, now, I have the ball rolling. Fortunately, for me, I was able to find a superior endocrinologist in Albany, NY. I cannot say enough. He walked me through many blood tests, and additional labs to either include or exclude Cushing’s Disease. It was a very long road that I traveled, but the proper diagnosis was made. It was only a matter of time before the proper treatment Cushing’s Disease could be executed.

Having the proper diagnosis of naturally occurring Cushing’s Disease, I now needed to have consultations with the specialists, who would perform the neurosurgery, and after treatment care. For me that would be several visits to the Neuroendocrine Clinic at Massachusetts General Hospital who sees many more cases like mine on a weekly basis. I was ready for the final stage of this journey.

What could go wrong now? I had one transsphenoidal surgery, but my Cortisol levels continued to be elevated. Further evaluation by neuroendocrine medicine and neurosurgery strongly suggested several additional treatment solutions. The procedure for the additional round of treatment was the call of the neurosurgeon. It was his discretion to determine if a second surgery was the safest and most practical solution. However, if the neurosurgeon felt that surgery was not the proper mitigating procedure, neuroendocrine medicine determined Ketoconazole, a Cortisol reducing medication and Proton radiation, or a Bilateral Adrenalectomy were the only other alternatives. There were downsides to all the options.

I decided to have a second transspheniodal adenomectomy. The probability of being cured of Cushing’s, at this point was 50%. I could live with those odds. Medical research has shown that there can be damage to the pituitary gland, if additional surgery is performed (Swearingen, 2008). My pituitary gland was not functioning properly, anyway. I wanted the additional surgery, even though the odds were only at a 50% success rate. My case is the exception, not the norm.

I had the second transsphenoidal adonamaectomy performed by Dr. Brooke Swearingen on February, 28, 2008. Surgery went fine. I felt like I was ready to get up in the recovery room and dance the jig, or something of that manner. Everything appeared to roll along without complications. Was I wrong! The night of the surgery, I suffered some complications, diabetes insipidus and a post -operative fever. Diabetes insipidus was the more serious of the two complications. However, my doctors and nurses treated me through the night, and stopped the effects of diabetes insipidus. The 50% odds were looking good. I might have beaten those odds. Was I wrong? My Cortisol levels came back during the following week. Those levels were not even close to the range that they needed to be. I was set back again. Plans one (1) and two (2) appeared to not accomplish what was meant to be.

I was invited to participate in a clinical trial for a new medication used in the treatment of reducing Cortisol levels in Cushing’s patients. Once under control, do I have the option of proton radiation? However, not everyone who suffers from Cushing’s has the opportunity that I had. I now felt a bit more relieved, because a glimmer of light was starting to glow at the end of the dismal tunnel. By participating in this study, I took the proactive approach to control Cushing’s Disease. Some times the monster of self-doubt inserts itself into the equation making you feel like you have made the wrong choice. Is there a right or wrong answer or right or wrong choice? It is entirely up to you. After all, you control your destiny.

After four months on the drug, things were great. Unfortunately, the drug seemed to cause temporary damage to my liver. That was not the result that my medical team or I were looking for. It looked like I was back to square one? I hoped not. This journey has been one trip full of vicissitudes. There hasn’t been any happy medium. When everything appears normal, the wind in my sails suddenly changes direction, or even stops entirely. At this volatile stage of my treatment, despair seemed to edge out other feelings. Others can live a normal life, but I cannot. Is that fair? In general, life is not fair. You, as an individual, must make the most from the situation that is before you. In my case, I have been working my best to achieve that place called normalcy. Only time will tell if this goal can be reached.

I did have one last plan to follow. Even though, it was not the preferred choice, it will cure me of Cushing’s Disease. Because I have an anatomically cramped sinus area, traditional medical treatment has not worked the best for the treatment of my Cushing’s Disease. I choose to rely on the efforts of the radiation oncologist and his pedagogy concerning Proton Radiation therapy. Again, I had some of the same questions. What are the chances that you will be able to find the adenoma?

I had the Proton Radiation Therapy. It is time for me to allow Physics to      play a major role in my recovery. I will let you know in six (6) months to one (1) year the outcome of Proton Radiation Therapy. Time has been my enemy; yet I will wait patiently for the next outcome. After reviewing my time budget, it was one (1) year to the day from my initial diagnosis to the execution of Proton Radiation Therapy. It is now time to construct the pages of the new chapter in this saga, known as Cushing’s Disease. These new pages will be revolving around medical treatment through the drug Ketaconozole, while waiting for the effects of Proton Radiation. The duration of the treatment will be much longer, at least several years before any concrete data can be retrieved for the determination of the eradication of this horrible disease. Three months post Proton Radiation I am finally hearing those words, your Cortisol levels are within normal range. I feel like doing the happy dance. I hope and pray that normal levels will continue. It’s about time that something has gone as it was supposed to happen with this particular treatment of naturally occurring Cushing’s Disease.

I sometimes feel alone in this situation. However, I know that I am not alone. I have one of the best support systems in place, my family and friends. Because Cushing’s is rare, there are not many local support groups, and you have to make due with what you have. Do many doctors in your community see cases of Cushing’s Disease? I believe the patient percentage is extremely small; about 15 out of 1,000,000 people are diagnosed with Cushing’s Disease. I just happen to be one of the 15 people out of the 1,000, 000. I am not alone, but I am part of a small minority

In my case, my family helps me through these rough and turmoil-ridden times. I also have to compliment all of my doctors, who have been supportive through the treatment of my disease. The medical staff of the Neuroendocrine Clinic at Massachusetts General Hospital, and others associated, have been stellar in trying to educate me on the complexity of Cushing’s Disease.

Member: 080925
Newsletter: Spring, 2009
State: Massachusetts

An Update, Summer, 2014

Many Cushing’s disease patients endure a long and arduous trip through diagnosis, treatment, and recovery. What seems like a simple process turns out to be a highly complex series of events. Eventually, you as the patient, finally discover the answers that you have been diligently searching for. You can use those answers in order to modify your lifestyle to improve your quality of life. The most important part of recovery is the development of a positive outlook at what you have endured through an inordinate period of time. Cushing’s disease survivors are some of the strongest people that I know. We live through the pain, weakness, emotional distress, and the destruction of confidence, by this evil entity, we know as Cushing’s disease.

In my case, I have been through this long and drawn out process. It took many years for me to get the diagnosis, go through the treatment process, and the recovery stage. I experienced a multitude of emotions through this process. The road to recovery, for me seemed to take longer than I anticipated. Unlike other illnesses and diseases that are treated by surgery, the end result, the cure for Cushing’s disease is a long waiting game. I was thinking, I have the diagnosis, went through the treatment, and now I must be cured. Boy, was I wrong. That time factor was my enemy. I had the perception that I was a sprinter heading for the finish line, but in actuality, I was the long distance marathon runner just starting my race to the finish line. My treatment was best stated that I could see normalization of my levels anywhere from as early as 18 months to as long as 20 years after radiation. I was hoping for the 18 months.

The first year of my recovery was daunting. There were many days that I did not feel on top of my game. It was more like a long series of setbacks. I couldn’t see any measurable gains. I could only see myself slipping back into the clutches of Cushing’s disease. I would see that my cortisol levels were still considerably above the upper range of normal and think to myself, “Why me?” I should be cured. I did everything that my Endocrinologist strongly suggested I do, but yet I’m still in the same place. What is next? Do I have another surgery? That avenue was discussed previously, and it was ruled out as a possible treatment. I had to wait for the radiation to take effect. My concern was how long this process was going to take. What can I do to get my cortisol levels under control, back into the normal range? Medically, it was decided that I go on a regimen of ketoconazole to lower my cortisol levels into an acceptable range. Gradually, under this medicinal therapy, my cortisol levels began to drop. The underlying question for me still revolved around my personal recovery time. Yet, this set back did not deflate the momentum I gained from previous years.

I had to put setbacks in perspective. By looking at these setbacks under this philosophy, these things happen for a reason. I was able to use this new found philosophy to my advantage. In 2009 feeling better from my Cushing’s disease, I travelled to Italy for the first time. Now, for me, travel was the proverbial carrot at the end of the stick. It was my reward for all of the difficult times that I have endured over the past fifteen years. Every year since 2009 I have taken vacations to faraway places, mostly Western Europe. My rationale behind travel was that for many years, I spent my vacations in the hospital. That was no way to have a break from work, or this disease. To show that evil specter, Cushing’s disease, I fought back. One way to display that I was winning the battle with Cushing’s disease was to treat myself to the adventure of my life time.

Even though I had my fair share of setbacks during my recovery, I never gave up or became overly discouraged. Additionally, I used these stumbling blocks to make myself a stronger person. I threw myself into my work, determined to deliver a positive outcome. Work became my primary focus and the center of my life. I achieved many goals in my career.

As time passed, I gradually began to feel better. I was starting to believe that I was on the road to being Cushing’s free. That feeling was not an overnight success. It took the better part of five (5) years for me to reach this new milestone in my recovery process. I am very pleased with my recovery. Finally, after staring this evil monster Cushing’s disease down, a positive outcome was headed in my direction.

Additionally, I have always been a strong advocate for Cushing’s disease awareness and education to patients, doctors and caregivers. Education is a very important tool that aids a speedier diagnosis of Cushing’s disease. Nothing is better than hearing these words, “You are not alone.” “Let me tell you my experiences with Cushing’s disease.” These comments and ones similar in nature help the patient on an emotional level. There is someone out there that has similar experiences and is willing to share his experiences with me. By adding experiences from others, your recovery is more positive in nature. The awareness that I was not alone and had a place to turn, made me feel better about myself, and the interactions that I was having with Cushing’s disease.

I went a step further with Cushing’s disease education. Now, six years into my recovery, I see myself as a strong advocate and educator on Cushing’s disease. By vocalizing my knowledge about Cushing’s disease, I have helped many to gain a tangible understanding of what Cushing’s disease is, and what a diagnosis and treatment for Cushing’s disease entails. Adding to my educational experiences with Cushing’s disease patient awareness was the fact that I was able to have several prestigious moments by participating in several educational forums at Massachusetts General Hospital with several scientists and representatives from Novartis, as well as several medical professionals from Massachusetts General Hospital. I was able to bring my story to the forum and have the chance to elaborate on my experiences as a patient and survivor of Cushing’s disease. In my recovery, it couldn’t get any better than this. My voice is being heard by the leading researchers in the pharmaceutical industry. I just might have some input in a decision to work on a new pharmaceutical treatment for Cushing’s disease. That is entirely exciting.

Positive experiences come in many different forms. Those experiences can range from being slight and minor, to major and life changing, and any variation in the spectrum. Additionally, your support system at home has bearing on how you recover from Cushing’s disease. I am very thankful for my support system that has been in place throughout my diagnosis, treatment and recovery. My family has been there through all of the appointments, surgeries, radiation, and follows up visits. I once was in a very dark and bad place in 2007. However, my support system helped guide me to the light at the end of the tunnel in 2013 and beyond. My family has been a major portion of my recovery, but I also have to extend some credit to my medical team that has taken care of me the entire time that I have been dealing with this. If it wasn’t for them, I would have had a serious catastrophic event, which would have limited my quality of life. That was what could have been. For me, it is very different. I have turned this experience of being diagnosed with a rare disease into a positive learning experience on many different levels. I have grown as a person due to my illness. I have a different outlook on life. Near death experiences have that kind of life changing force on a person.

Again, Cushing’s disease patients are some of the strongest people I know. We have endured so much for a long time, from misdiagnosis, to proper diagnosis, and treatment and recovery. This process doesn’t occur over night. Recovery takes years for many of us patients to see measurable results, especially the results we want to see. I have never given up hope. My experiences have shown that I have been at the bottom, and now I have risen to the top in order to overcome Cushing’s disease.

Member: 080925
Newsletter: Summer, 2014
State: Massachusetts

An Update, Summer, 2024

I would like to offer my CSRF friends, and family, an update on my battle with Cushing’s disease. Like many other Cushing’s patients, I have had a long arduous adventure over many years. In a strange way, I faced a challenge not unlike Odysseus and his odyssey, which for me is Cushing’s disease. My diagnosis of Cushing’s disease was in 2007; however, I had initial symptoms dating back to the early 1990’s. Doesn’t that make for a long medically cumbersome journey with the fear of not knowing what is ahead? Treatments, surgery, radiation, or a simple little pill, what is next?

The strongest advice I can give anyone battling this horrendous and debilitating disease is to be your own advocate. It is your body that is suffering from the damage that this dreadful disease has inflicted on your body. It is up to you to make the choice to bring your case to the forefront. Being a patient,
quite often we accept what the doctor says as gospel. Do not be that person who yields to the decision of the doctor. Ask questions!

With all of that said, I felt very up because my cortisol levels had normalized. I had been waiting for my cortisol levels to come down. I had been the diagnostic puppet, performing hundreds of these tests to measure my cortisol levels. I earned the gold star for participation. I was on top of the world. My cortisol levels normalized in 2012. I was off my Cushing’s medications. “What a feeling,” I thought. From surgery in 2007, it was an exceptionally long journey to normal for my health. That was arduous an uphill barrier, which had many ups and downs. However, I continued to fight this battle with my willpower and might.

Even though my health was in a weakened state, I fought this disease with all my strength. Through my years of fighting this battle, “I have become sick and tired of being sick of being and tired,” which was my rallying cry. I managed to become successful in the job I had. Additionally, in that time frame, I
went on vacations to Europe, Africa, and South America. I managed to travel to four of the seven continents. A reminder that life is short, and do not squander your opportunities. My trips abroad helped me mentally as a treasured coping mechanism, looking back on moments like this, Cushing’s Disease was in the rearview mirror. I was set on moving forward, away from the medical conditions.

Open the flood gates, the year was 2017, that year included my darkest hours. Not only had I battled Cushing’s disease, but I am also battling cancer. I was not feeling well and went to the doctors for diagnostic testing. Lucky me! I got the gift behind curtain number two. “Oh no, the big destructive C word.” That took the wind out of my sails. I felt stranded in a sea of despair. How does one deal with this alarming news? Cushing’s disease is in the background. My efforts continue to focus on battling cancer, and the side effects. I had no choice. I could not let this go[cancer] untreated. I was willing to do what it takes to treat this cancer. I followed the programs created for me. I was on chemo and
radiation prior to surgery. My doctors advised me that this round of treatment significantly decreased the size of the tumor. My outlook was much better, now that these treatments were doing what they were supposed to do, kill the cancer cells.

A week before Christmas 2017, I started chemotherapy, and my treatment would last for the next 12
weeks. Chemotherapy is a way for the doctors to introduce to your body toxic medicine that has one purpose, and that purpose is to eliminate cancer cells for good. Side effects from chemotherapy are weakness, loss of sense of taste, and sensitivity to temperature changes, especially cold. After each round of chemotherapy, you feel bad, and that sensation lasts up to two (2) days before the next
treatment, in my case. I was very weak after my treatments. I was fortunate. I survived the rounds of chemotherapy and all the adverse side effects. My treatment ended in early spring of 2018.

I returned to work after chemotherapy treatments. I was feeling a little better, but I had to work differently. I was not the same person as I was prior to chemotherapy. My daily life was going along smoothly. During the late spring of 2018, I developed an intestinal blockage. What a trip sideways from my daily life, I was not looking forward to this. I was admitted to the hospital after a visit to the emergency room. While in the Emergency Room, I waited for the blockage to pass. Hours went by
and there was no change. Finally, late that night everything went back to normal.

Fast forward several months, I noticed my Cushing’s symptoms were back. I had the classic symptoms again. The worst was elevated cortisol levels. My body was in a major battle with the stress hormone, and I was losing ground. These symptoms continued for several months. I desperately needed treatment. Everything I was doing had no effect on my cortisol levels.

I was lucky! I was able to book an appointment with the same Endocrinologist that I had prior to my bout with cancer. However, there was one twist, I was not going to see my endocrinologist. I was going to be a patient of an endocrine fellow at the clinic. My first visit with my treatment team was less than spectacular. There were differences of opinions, leading to me questioning my decision. I ended up sticking it out, and not leaving the practice.

Did things change? Yes, things did change, we were all on the same page. Our chemistry was much better than the previous encounter, in a way I was treated like a legend, or even better, royalty. I have been a patient in this Endocrine Clinic for seventeen years. My treatment team and I were able to create the most favorable treatment path. All I had to do was to follow the steps. This treatment plan brought balance to a once chaotic daily routine. Everything was going well. My symptoms are managed effectively. With everything going well, I was in a good place, then the pandemic hit. It is time to change how medicine and doctor patient visits were going to be conducted.

Because the world was on lockdown for several years, the rise of telemedicine arrived, making it possible to see patients in a face-to-face setting without personal contact. Every few months I would have a telemedicine appointment with my care team. My Cushing’s disease is stable. I was not having issues that are typical with Cushing’s disease, making telemedicine visits quite easy. It is quite easy to treat a patient who is stable. Telemedicine was immensely helpful, especially during the winter. I did not have to drive to the Clinic during a severe snowstorm. I was able to have my telemedicine appointment wherever I was at the time of the appointment. Finally, with COVID restrictions lifted, I was able to return to in-person office visits for treatment.

Little did I know the Fellow I had been seeing was going to be graduating from the program. I internalized this for a while, and what was going to be the next step. I continued treatment. Before my Fellow left, I told her, “I am a very complicated case, and I’m glad you were able to present me before your board supervisors.” I hope I was able to help you earn a good grade. Everything was still in place. I was assigned a new Endocrine Fellow. Looking back at my medical history, I am a tough case, and I had to break-in a new Endocrine Fellow. Our first appointment went well; however, the nurses were glad to see me. It had been a while since we have seen each other in person. Enough of the social minute, back to the appointment, after all is not it ok for me to get attention. I have been going to this
Endocrine Clinic for 17 years, and I have a patient-doctor, patient-nurse relationship. Even after this point, I was told by one of the directors of the clinic, I was like legend in their practice. All things aside, people I did not know personally were acknowledging me for my accomplishments.

Time for the new chapter to begin, my Endocrinologist and her Fellow suggested to me that I should try this new drug for the treatment of Cushing’s disease. I asked what the name of the drug was. “Levoketoconsole,” replied the Doctor. The drug and its side effects were explained to me. I was on board with this drug. My Endocrinologist was one of the doctors who ran the Phase 3 study for the drug company and FDA, for approval. I have the utmost respect and confidence in my Endocrinologist and her Fellow. What they said was comforting and enlightening. I jumped at the chance to try this medication. I am a part of a small group in the United States that take this medication. I am a pathfinder for doctors and treatable patients.

Moving forward, I feel like a new person. My Cushing’s disease symptoms are under control. It can be said that good things come in small packages. In my case, it was a small pill, Levoketoconsole, trade name Recorlev. This small pill has changed my quality of life. I have been on this medication for 18 months. My classic Cushing’s symptoms are managed by this medication, and Recorlev has improved my quality of life tremendously.

The data collected has shown that there is a measurable change in my health from before taking Levoketaconosole and the present. This has given me a newly founded strength and an incredibly special opportunity. That is right! The crosses I had to bear over the years have given me an incredibly special opportunity, which is telling fellow Cushing’s patients, doctors, scientists, and researchers about my treatment journey on the medication Recorlev. I was recruited by Xeris Pharmaceuticals to be a patient ambassador and a patient mentor for the Cushing’s disease treatment drug Recorlev. I accepted the challenge. I would be able to tell my story, my experiences before and after using  Recorlev. I have told my story three (3) times, once on a Zoom platform Town Hall for the Magic
Foundation and two (2) in-person experiences, one in Chicago, and Boston. I use this experience to communicate with others, they are not alone. I have had the symptoms and treatment that you have gone through. I strongly stress that you are not alone, I am only a text message away. Cushing’s disease leaves its patients with debilitating conditions. Fear and the unknown are strong in newly diagnosed patients. To make things worse and more complicated, Cushing’s disease can reduce your self-confidence to extremely low levels. You feel like you are in the passenger seat and Cushing’s disease is in control. By being a patient ambassador, I have honed my public speaking skills and personal desire to deliver my patient story to others.

What can I say? These speaking engagements have opened a platform for me to open up and help educate the public with my story. Cushing’s disease will not go away overnight, it takes time to treat Cushing’s disease. I am looking forward to the future opportunities given to me as a patient ambassador and a patient mentor. These opportunities are a significant measure of my abilities to spread the educational word about Cushing’s disease. Earlier this year, 2024, I was asked to give several quotes for a doctor who is writing about Cushing’s disease. No longer will Cushing’s disease be a paragraph in a medical text; there will be survivors willing to tell their stories from diagnoses to treatments, and post treatment surveillance monitoring.

In closing, I have been sick with Cushing’s disease for the better part of the last 30 years. I know that Cushing’s disease affects 10 in 1,000,000 people every year. It is my responsibility to educate those patients, even if my story only reaches a small percentage of Cushing’s patients. You are not alone! There are Cushing disease support groups out there. I happen to be one of CSRF support group leaders. If you feel like nobody’s listening to you, feel free to contact me. I am willing to listen to you and help you navigate your difficult journey with Cushing’s Disease.

Member: 080925
State: Massachusetts