My name is Danielle King. I am a 28 year old female living just outside of Toronto, Ontario, Canada. I am just over one year post op / in recovery from a transsphenoidal endoscopic brain surgery to remove a benign pituitary macroadenoma that caused me to have Cushing’s Disease. Here is my story!
Danielle’s Story with Battling Cushing’s Disease:
I was a healthy, active and happy child and teenager. I suffered from migraine headaches, inherited from both sides of my family, but enjoyed sports and played for my University’s Varsity Soccer Team.
During my last year of University, my period just stopped. An endocrinologist diagnosed me with PCOS (polycystic ovary syndrome) and referred me to an OBGYN who tried hormone replacement to kick start my period. It didn’t work, and over the next two years, I developed a mass array of symptoms.
– continued amenorrhea ( no period for over 3 years )
-rapid weight gain . I gained 50 +pounds despite working out and running 5km a day
– unexplained breast lactation
– severe facial acne and facial hair
– a bright red and round face
– excessive un controllable appetite & eating
– buffalo hump / fat pad on the back of neck
– wounds that wouldn’t heal
– un explained bruising all over arms and legs
– temperature regulation isues
– itchy skin that felt like bugs were crawling under my skin
– cognitive/mental problems (slight OCD/anxiety/depression)
– lower body muscle atrophy that resulted in a torn MCL & ACL. I had to have full ACL knee reconstruction and rehabbed for over a year.
– worsening / changing migraine headaches
– vision problems
– unexplained extreme tooth sensitivity
– reoccurring / worsening kidney stones. I passed 12 kidney stones and continued to develop more with no explanation from several urologists & specialists
– terrible insomnia / sleeping issues
I could barely get 3 hours of sleep per night and woke up at 2am every single night. My face blew up like a balloon, to the point where people who I’ve known for years wouldn’t even recognize me. Even my family members would comment on how different I looked after not seeing me for periods of time. I would look in the mirror and often just cry because the person staring back was not me. I think this is when depression set in. I thought maybe these changes were part of aging, but thank God I did not give up. For many of us who suffer from Cushing’s, you just know something is wrong. You really learn to know your own body.
At a follow-up with my endocrinologist, he wrote me off as “stressed and depressed.” He suggested anti-depressants or “talking to someone.” He blamed the weight gain on being inactive and on my knee surgery and not being as active as I was used to. The only positive result was a referral to a dermatologist for my acne and my facial hair.
Eventually, I isolated myself. I went to work ( I am an elementary schools teacher ) and would be around my immediate family, but didn’t socialize much. I was so very embarrassed of how I looked and what people were thinking. I still had no diagnosis, despite visiting numerous doctors and specialists. All the doctors agreed that something was wrong, but didn’t know what! I started to give up hope.
Around April of last year, my Mom sent a text: “Hi dear, I don’t want you to get upset but when you have a second, look at this link.” It was a Google search for CUSHING’S DISEASE. I had never heard of Cushing’s. I read the symptoms word for word, and aside from diabetes, I had EVERY SINGLE ONE of the symptoms. I called my Mom and cried. I just knew at that very moment that that had to be it.
That next week I had an appointment already booked with my urologist about my kidney stones as they were worsening and quickly. I had been hospitalized due to the pain three times in a month and we had figured I still had 8 kidney stones and was making more. He told me at an appointment “ I don’t know why this is happening to you.”
At the appointment, I decided to ask him about Cushing’s. He told me he heard of it but said it was so rare that the chances I had it were slim to none. I was persistent, so he ordered a 24-hour urine test and told me to follow up with my endocrinologist.
After my test was conducted, my urine cortisol tests came back 5 times the normal amount, but my endocrinologist still said it was too early to diagnose Cushing’s and additional tests were needed. He reiterated the slim likelihood of Cushing’s. I asked about an MRI but was told I was “jumping the gun.”
I was NOT accepting this. I was very upset and started researching Cushing’s on my own. Since my cortisol levels were OFF the chart and my mental and physical symptoms were getting worse, I knew I was closer to an answer. My Dad is a former NHL hockey player, and he called a doctor he used to see who scheduled an MRI. Because of the health care system in Canada, I might have waited months otherwise.
Almost two weeks went by, but I got a call that my MRI results were in. The MRI showed a pituitary macroadenoma. I had never been so happy. Many of you will understand that as bizarre as that sounds, I was so relieved to finally have an explanation as to why I felt and looked the way I did for almost 3 years! No one wishes for a brain tumour, no one wishes to be sick. But when you go so long with NO answers, having something validated gives you a feeling of relief.
The next month was a whirlwind. A family friend connected me with one of the top brain surgeons in Canada. He and his partner both personally emailed me and ordered more tests. In the meantime, I was still teaching and managing my rapid changing symptoms, including gaining 25 pounds in a month.
I had transsphenoidal endoscopic surgery last summer. Words cannot describe how amazing my team of doctors at The Toronto Western Hospital in Toronto Canada have been and continue to be. They saved my life and continue to support me today through my recovery to this day.
Initially, the anticipated post-surgery drop in cortisol didn’t happen. Instead, my numbers skyrocketed. An emergency CT scan was performed to look for other tumors in my body. We were devastated by the prospect of ectopic tumors. Thankfully, the CT revealed no tumors. Eventually, my blood cortisol levels normalized, and my surgery was deemed a success. The CT was actually a blessing in disguise, as it showed a blood clot on the lung that was immediately treated and than later treated via injections for 3 months. Today I am no longer on these medications.
The first month of recovery was horrible. These were the hardest days of my life I’ve ever experienced.
My body adjusting to the drop in cortisol could only be explained as death. I have spoken to several other recovering patients and they can only explain it the very same way.
Because of the terrible withdrawal in weaning my body off the medication, I lived with my parents for nearly 3 months. My Mom was by my side 24/7. I barely left the house except for a short walk. My body ached, my head pounded and the worst part of all, my mind did CRAZY things. I began to suffer from anxiety and panic attacks. My memory was foggy and I was forgetful. I was scared, upset, frustrated, and I felt like I was starting to fall apart. I eventually met with a therapist.
I’ve learned you can talk to family and friends, but professionals help in a different way. I now realize that having Cushing’s and having a brain tumour was not my fault. I could not prevent it. It was God’s way. Accepting this allowed me to let go of self-guilt. Things slowly but surely improved. I worked hard to stay positive and to become the person I wanted to be again. I have learned that Cushing’s doesn’t happen overnight, so we will not get better overnight. My pathology report of my tumour later revealed that my tumor had likely been there and growing for 5-7 years.
Doctors, patients and specialists continuously say that patience is key for recovery. Today just over one year post-op, I can 100% attest to this. There are days you want to give up, and there are days you just want to stay in bed and cry. My doctor and therapists have told me it’s OK to have bad days. They remind me I have already gone through the hardest part.
Today, I still take 5mg of Cortef in the morning and wear a medical alert bracelet to show I am steroid dependent in case of emergency. I alter my medications when I feel ill or I am coming down with a cold and have my blood and urine tested every month. I will continue to be closely monitored with MRI’s and appointments, but overall I feel great. For the fist time in forever, I can say I am happy in my own skin.
I ended up returning to teaching full time this September. I am teaching full days and teaching Health and Physical Education. Staying busy has been a huge part of my mental recovery. I am down from 165 to 118 pounds, sleeping around 8 hours a night, my skin is acne-free, my mind is clearer, I am exercising everyday and my period has returned!
Just this past summer my family and I walked in the Toronto Brain Tumour Walk at Nathan Philips Square. I raised a total of $3,558.00 for the Brain Tumour Foundation of Canada and hope to continue to advocate both for myself and anyone affected by brain tumours and rare diseases like Cushing’s. I have met some amazingly strong and inspirational people through this battle. Social media has allowed me to share my story and read stories of people in similar situations.
Cushing’s disease took over my life and robbed me of who I was. Not only did it affect me mentally, physically, and emotionally, but it also affected my family. For me, one of the hardest things to deal with besides the symptoms and recovery was watching my loved ones suffer and worry about me. I will forever be grateful for my family, friends, surgeons, specialists, therapist and those who supported me throughout this crazy journey.
My family and I became VERY knowledgeable about this disease. At times I still feel like we knew more than the doctors. I kept detailed notes of all my tests, procedures, medications and weaning process, in hopes to help anyone who feels “alone” through this process, as I often did.
I hope that I can help even one person find a quicker diagnosis, allow them to reach out if they need someone to talk to, or just to make a friend who has been a victim of this rare disease or other brain related illnesses. There is light at the end of the tunnel. It does take work. I work my butt off every day because I remember all the days I could. I promise it will get better!
Mount Albert, Ontario, Canada