Cushing’s Disease: What a Delightful Journey

Pictured in the center - “Mama Fratelli”

Cushing’s Disease: What a Delightful Journey

This is my pituitary gland. This is my pituitary gland with Cushing’s Disease. Any questions? Well I sure as sh*t had a few. Actually, I had about a million. Where do I begin?...

For the past 16 months, I have felt “off” physically and thus I have been playing a medical detective in addition to my day job. I ran into many roadblocks along the way and received very few answers until recently. Nothing was specific at first. It was just a slow building of weird symptoms and ailments one after the other but when they were all compounded together, I felt terrible and I didn’t look like myself. 

First, I stopped sleeping through the night. I would wake up every night at like 2:30 a.m. and could not go back to sleep. It was like being on the sleep schedule with a newborn baby again except that I would wake up, mind reeling, staring at the ceiling, unable to go back to sleep. The slow build of sleep deprivation over time was rough to say the least. 

Next, I started gaining weight. I was working out regularly like I had been for the past few years however I was not feeling or seeing the benefits. I  was using my trusty BeachBody app that had given me great results. I was eating fairly clean and healthy.  I was carrying out my morning routine that had served me well but I noticed that I was sliding backwards. My clothes were getting tighter and my face looked puffier.  It went beyond just vanity though because instead of getting a rush of endorphins post workout - I just felt more tired and weak afterwards. 

Then the feeling like I was on a constant adrenaline high followed. Like. All. The. Time. And when I wasn’t flying high, unfocused and feeling like I needed to be tested for ADHD - I was completely crashing. During the crash, I was in a complete depressive state and feeling a mental weakness like I had never experienced before. I had never had depression but it got so bad that I went to one of my trusted physicians and begged for assistance to help me even out my mood and pull me out of the dark hole I was in.

Lastly, I noticed a bunch of other random ailments that piled on slowly over time. I was super sensitive to caffeine and sugar all of a sudden - my only two treats. My lower back started to hurt constantly. I was bruising easily and it was taking a long time for the bruises to heal. And so on and so on. 

When I first started having these symptoms, I began to search for answers by contacting my naturopath. While I am a huge believer in preventative, western medicine and probably go to the doctor more than the average person, I also believe that eastern and alternative medicine can work miracles too. It seemed to me that since Covid burst onto the scene, the western medicine doctors were completely backlogged, under staffed, and overworked. So why not try a different approach with a practitioner that might have more bandwidth? I also have always felt that naturopaths come at things from a different angle and so I decided to start there. Multiple labs later, it was noted that my cortisol was high, a few of my other hormones were a little out of balance and that maybe my symptoms pointed towards perimenopause and/or stress as a cause of all of this.

The solutions for what they thought was perimenopause and too much stress started with the usual prescription.  Try to eliminate and/or manage my stress, mix up my exercise regimen, find a nutritionist to manage my hormone health and weight, and take natural supplements to rebalance my hormones. I tried it all… for months. 

I took several different approaches. I started meditating and journaling. I went back to getting acupuncture regularly. I tried different types of exercise - low impact, no impact, heavier weights, lighter weights, no weights at all. I tried high intensity, low intensity, resistance training, and more barre, pilates and yoga. I took longer walks then tried shorter walks. No change. 

I found and met with a nutritionist to try some different food related strategies. This translated to attempting every meal plan under the sun. Low carb, no carb, high protein, intermittent fasting and portion control. I ate all the kale, blended the protein shakes, ate the chia seeds, experimented with electrolytes and drank gallons of water. I even tried a gut health elimination plan at one point that was no gluten, no dairy, low sugar, low carb, low caffeine (gasp!), more plant based protein and basically what I referred to as “the no fun diet.”  Again. No changes on anything.

I spent hundreds of dollars on natural supplements and had the two sided pill case filled to the gills. At one point, I was taking up to 20 supplements a day. Not one bit of difference. 

All of this work produced zero results and just stressed me out more trying to keep up with it all.  There was no change to how I felt and no reduction in my symptoms. My weight continued to climb, my hormone levels were still out of whack and the ailments continued. I began to realize that this was not just normal perimenopause or the stress of life and it sent up a huge red flag for me. 

After 9 months of trying with no resolve, my naturopath was defeated as well and sent me to my endocrinologist to find answers. Although I was armed with months of lab work all pointing to high cortisol, my endocrinologist pushed the reset button and made me start all over again. I am not sure if he didn’t believe the results I brought to him or if he was just being overly cautious but it was a lather, rinse, repeat scenario. This was completely frustrating to me as was his lackadaisical approach. 

At first he said, “Oh wow, yeah your cortisol is really, really high…. but let’s repeat these labs again.” Sigh.

During another visit he said, “Well this isn’t urgent, let’s do more labs before we move to imaging.” I just about lost it. I wanted to say to him, “Sir, have you not slept through the night in a year? Do your pants not fit despite getting up and working out every single morning? This is urgent to me! I can’t live like this!!!!”

At another point, he said to me, “You don’t look like you have Cushing’s Disease.” Well there was a reason. I was fighting tooth and nail to stay healthy, but I was losing the battle slowly. Did I want to eventually have a moon face? Did I want a lump of fat between my shoulders? Stretch marks? Tiny legs and a big pot belly? Because that is what Cushing’s Disease does to the body over time I was reading. Um, the answer was a very clear no. Can we just move this along to the next phase of diagnosis before I get there please?

There were weeks and weeks of repeating labs in various forms (which I will spare y’all the details of). All of the results continued to point to unusually high cortisol over and over. I begged him to go to the next step and he finally agreed to order the imaging. Just before Christmas, I had a CT Scan done of my adrenal glands and an MRI of my pituitary gland - the two places where tumors can be found that trigger this excessive release of cortisol. Alas, a small tumor was found in my pituitary gland. I was vindicated. 

I think my endocrinologist was shocked that I caught this so early. Apparently a lot of people live with this condition unknowingly for 3-4 years before being diagnosed or never get diagnosed at all. The sad part is that this condition can lead to diabetes, high blood pressure, early osteoporosis and a host of other long term health issues too numerous to list. All of which I do not want nor would I wish on anyone else. 

When the endocrinologist called me with the official diagnosis, I wanted to scream back… “I TOLD YOU SO!” But I refrained. I mean, my cortisol was 6X as high as a normal person’s at one point! HELLO!?? So after this long journey of doing all the things and a whole lot of unwavering persistence on my part it was discovered that I was right. Something bigger was going on. This was not just age related hormone changes. 

So my official diagnosis is that I have Cushing’s Disease caused by what is hopefully a non-cancerous tumor or adenoma on my pituitary gland. It has triggered my cortisol hormone levels to be elevated and thus is causing all of the symptoms I listed above. There is a lot of information on the internet about Cushing’s Syndrome, Cushing’s Disease, pituitary adenomas and the effects of elevated cortisol. Since I am not a doctor and certainly no expert on this yet,  if you want to know more about it - please google a reputable source for yourself.

As chance would have it, just this week there was media attention brought up around Cushing’s. Comedian Amy Schumer was diagnosed with Cushing’s Syndrome because of elevated cortisol. (Well look at me! I am on trend with a famous celebrity!)  From what I read about her story, the cause of her Cushing’s Syndrome is different from my case, but the symptoms and health impacts are the same. Let’s kick our high cortisol in the ass together, Amy! High five!

After consulting with two endocrinologists and four different neurosurgeons over the last couple of months, the recommendation is that I have the tumor surgically removed before my symptoms get any worse and before I start experiencing additional (and permanent) long term health implications that this condition causes. So later this month, I will be having my tumor surgically removed. It has been a sobering thought that although this surgery will be done via my sinuses, the procedure is performed by a team of neurosurgeons and is somewhat as I think of it as “brain surgery adjacent.” This scares the sh*t out of me, but I am trying to remind myself that I am preventing further long term damage and that I am going to feel a whole lot better when this is all over. 

To add levity to this hard situation, one of my sisters jokingly named my tumor “Mama Fratelli” after one of the villains in the movie Goonies. Much like that character, my neurosurgeon will be hauling “that bitch out in cuffs” she told me. This has made me laugh many times when the fear of what is ahead has crept into my mind. This reference has also reminded my 80’s movie loving heart that “Goonies Never Say Die” - so I will keep fighting until I see the other side of this and start feeling and looking like myself again. 

In my most recent blog post prior to this one - 2024: In Three Words - one of the words I chose to guide me through 2024 was “Advocate.” This health journey I have been on, in addition to two other minor health issues that I worked through during 2023, are the precise reason I chose that word. Had I not advocated for myself by pushing for answers, listened to my intuition or accepted statements like “You don’t look like you have Cushing’s Disease,” then I would still be in the dark as to what is going on and headed towards many permanent and irreversible lifelong health issues. As exhausting as it has been, I refused to accept any of that and kept fighting. 

The moral of the story is, don’t settle for bad healthcare and being dismissed. I mean you don’t want to be a hypochondriac but if you feel in your gut that something is off – it probably is. Remember that saying that they taught us in grade school that says “If you see something, say something.” I think the same goes for your healthcare although I would change it just slightly to “if you feel something, say something.” Meaning if you feel like something is off, then definitely listen to yourself.  If you get dismissed by a practitioner then move on and find a new one that will listen to your needs and act on them. We only get one body and one life. Why feel terrible if you don’t have to?

I know of many people that are far worse off health wise than me right now. When possible, I have urged those closest to me to advocate for better healthcare or done it on their behalf. I also know we have all lost a lot of people to illness especially in these most recent times, myself included. My heart, my thoughts and prayers go out to those that are fighting much harder for their lives right now with far more complicated and/or terminal illnesses. I also grieve those I have lost deeply that fought hard only to lose the battle in the end.

I am also constantly reminding myself how lucky I have been during all of this. While I am tired, I am not in much pain. While I have to have major surgery coming up, I am grateful that I have the resources to seek the best care possible. And while my diagnosis dictates what could be a long road to recovery, my condition is curable. Not everyone can say that so I am keeping perspective. 

I also have realized how fortunate I am to have so much love, support and assistance from my family, my friends, and our village to get me through all this in the coming months. I am extremely grateful for every single one of them. I am also thankful for the kind people that I have met along the way that have shared a similar story with me or utilized the resources they had access to in order to uplevel my journey.

To my friend of 30+ years that risked scaring me and bravely pointed out that I have one chance to get this right so keep fighting for that last (and what proved to be the most important) referral - thank you for the push to get that final opinion at the best clinic in the area. That push has given me peace of mind that is priceless. You dazzled me after all these years in a small and unexpected way. 

And to my other long time, dear friend, thank you for the clever (and fantastically sarcastic) title for this post. 28 years and counting, Girl! I love you.

My final thought (albeit possibly scattered… remember, zero focus…forgive me) is this…

My family and I just returned from a short trip to one of our happy places - Disneyland. I was feeling slightly deflated on the plane ride back thinking this is my last trip anywhere for a while. The next big event in my life will be this surgery and the road ahead after that is somewhat uncertain. However as I reflected on it more, I was reminded of one of Walt Disney’s famous quotes and it resonated in my head.

"We keep moving forward, opening new doors, and doing new things, because we're curious and curiosity keeps leading us down new paths." -Walt Disney

While I wish this wasn’t a path I had to go down, I did remain curious and it has lead me down a new path. Hopefully in the grand scheme of things, this journey will end up just being a small detour that took me off my main path in life momentarily.

Let’s keep moving forward on this journey of life and health everyone.