A personal trainer with Cushing’s. How ironic is that? Everything happens for a reason and I truly hope that my years of knowledge combined with my own personal struggles will keep others from suffering as so many of us have. So, here is my story.
I was always a sickly child, taking tons of antibiotics for infections and strep throat. I also had severe cystic acne, for which I took antibiotics off and on into my 20’s. Although I seemed to struggle with my health, I was always interested in learning more about health and fitness. It’s really what led me to become a personal trainer. I knew I had to be diligent with my health just to feel “normal” and I loved teaching people what I learned along the way.
Around age 31 during a pre-op to surgery, I remember being told that my potassium was low. OK, no big deal. I just ate some more bananas and didn’t think anything of it. Then another random blood work came back with low potassium. I knew something was wrong but every time I would go to the doctor to tell them “I am tired all the time,” or “I am much more fatigued than I should be being so healthy,” they would always say, “Well you are a personal trainer; of course you’re tired all the time.” But I still deep down knew that “life shouldn’t have to be this hard.”
I asked my doctor to run another round of tests and mentioned to him that my potassium was low frequently. All the tests came back except ONE. They seemed to have lost the test for aldosterone, but everything else came back normal. I was so frustrated I never followed up. Another year went by while I struggled with extreme fatigue, depression, anxiety etc. Then in November 2008, I was moving across the country to San Francisco. I returned to my doctor one last time and asked if there was anything we can do; I know there is something wrong. The only thing I can think is that last year you mentioned they lost the test for aldosterone, can you please run that test again. I ASKED MY DOCTOR to run the missed test; UGH! Literally two days before I was moving to San Francisco my doctor called with the results. Over production of aldosterone by 300%! He said I need to see an endocrinologist immediately when I move. Had they actually run the test a year earlier, I could have started my journey sooner.
My journey continued in San Francisco, where they found tumors on BOTH adrenal glands and determined it was the left gland over-producing aldosterone, so it was removed in April 2009. I was hoping to feel better after the surgery but looking back I really did not notice any change. My life was so all over the place; it was really hard to tell what was up or down, but I knew deep down that something was still very wrong. My depression worsened, intrusive negative thoughts filled my world, headaches were daily, and pain became my new normal. When I tried different diets, I would become lightheaded and dizzy and the hunger pains were like no other. Never feeling satisfied and using food to numb the pain, I started gaining weight. Every morning I would awake and watch as my body fell apart. Everything I had worked for slipping away. I lost my muscle, everyday waking up to see my body and face changing in odd ways.
I had never heard of Cushing’s before. I felt my buffalo hump for the first time and gasped once I realized that’s what they had been referring to online. My blood work showed elevated cortisol, several 24-hour urine collections, ALL elevated, but I still did not believe them. How could I have Cushing’s? I started posting on Facebook if anyone had heard of Cushing’s and ironically a friend of a friend’s sister worked at NIH. She got me in contact with the doctors and I went there for 4 days for testing. Just prior to my stay I spoke to a woman online that had gone to NIH for 4 days and her tests came back “inconclusive” because she had cyclical Cushing’s. She went another two years until she was diagnosed with Cushing’s and had surgery. That phone call changed everything. Suddenly, I wanted to have Cushing’s so I would at least have answers. NIH uses several standard tests (8am cortisol, dexamethasone suppression test, 24-urine collection) and one particular midnight cortisol blood test (cortisol should be the lowest during the night). I failed every test, with results showing extremely elevated cortisol levels. The midnight cortisol was 14x higher than it should be. The doctor came in to read my results and it WAS confirmed. I was sitting on the edge of the bed and fell over on my pillow when he read the news. The nurse in the room softly said, “I’m sorry.” I sprung back up! “No I’M HAPPY,” I said. I finally had answers; it wasn’t all in my head.
As a trainer, I did not “look” like I had Cushing’s to the doctor; he was actually very surprised. But I knew I was killing myself just to maintain a “normal appearance as a personal trainer.” It was devastating for my ego; I stopped telling people I was a personal trainer. Yet my clients stood by me and thank God allowed me my rest and flexible work schedules on days I didn’t feel well.
I scheduled surgery for Feb. 1, 2016, and proceeded to live life to the fullest, planning nights out with my girlfriends, a crazy trip to Mexico, special time with my family, a bucket list of sorts. I didn’t know how my life would change after surgery so I just prayed for the best and lived. The surgery went well, and I loved being at NIH for several days after my surgery for observation. The following few months were a roller coaster of emotions, recovery and adjusted expectation for my new normal. Strange reactions occurred such as my jaw muscles locked shut for 2 weeks. I could only eat soup. I suffered several panic attacks as the chemicals were all changing. Nausea, headaches, random aches and pains, anxiety and depression were all things I needed to address as I adjusted to a stable dose of steroid. Being an active person my entire life, it was challenging to just rest. I would get a small taste of feeling better and want to take on the world.
I am very much into alternative healing and explored several modalities to help with each symptom. They explained to me that the first year would be a challenge and that I had to be patient while my body adjusted to not having the elevated levels of cortisol. Every cell in my body had to adjust. It was very, very hard at times. Being so aware of my body, I analyzed and tried to dissect every ache or pain. I obsessed at times but plan to write a book one day in hopes of helping others with all the alternative health and wellness options available. I am 7 months post-surgery and slowly feeling better.
I did want to mention a little bit about diet. As a trainer, I was constantly trying to help my clients, thus I became very familiar with a number of different diets. I stay away from sugars, processed carbohydrates and packaged foods. From working with my clients, I’ve found that no matter what their condition may be, auto immune, Cushing’s or just someone wanting to be healthy, in my opinion, sugar plays no good role in our diet. I believe it simply creates more and stronger signals from the brain that it needs more sugar. Like many of us, I love food, so it is hard to make good decisions with a strong signal to eat more sugar.
When my weight gain started, I tried many different diets myself without much success. One day, someone asked me if I had heard of a hormone called leptin, which regulates hunger and satiety (how satisfied you feel after eating). I did some reading on the web and found some are leptin-resistant, meaning the brain does not get the signal that we are full and satisfied. I wondered if my hunger and cravings were related to leptin resistance. More web searches led to several diets that supposedly helped with leptin and I picked one; basically no or very low carbohydrate and high in good fat (avocado, olive oil, coconut, organic grass-fed meat). While it was difficult to follow, I had major success with this. I am far from an expert in this area and do not know exactly why it worked for me or if it would work for others, but it did help me.
Each person’s story is so different, yet the shared struggle is real. I can’t think of a more challenging disease that affects so many systems in your body and our focus to stabilize each hormone and chemical is absolutely crucial to our recovery. Learn what you can from others and TRACK and journal everything! Feel free to email me or find me on Facebook (search fitness trainer Cushing’s). You can also read some exercise tips in an interview I did for CSRF.
Editor’s note: We asked Dr. Anne Klibanski, who has published on leptin resistance in Cushing’s patients for a few comments. “Leptin is a hormone made by fat — it’s called an adipokine and it’s mostly made in subcutaneous fat and less in deep visceral fat, thus leptin levels are high in those who are obese. It’s also known to suppress appetite and plays a role in initiating puberty. It is also true that eating “good fats” can promote satiety and have overall health benefits. The link between leptin levels and dietary intake is not clear and there are no medical data showing that a diet high in good fat makes leptin work better. So, I encourage good eating habits and decreasing carbs is always a positive.”
RIP Shianne, who passed away in early 2018. We love you always, lady!!
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Newsletter: Winter, 2016