This is what undiagnosed adrenal insufficiency looks like.
I was 96lbs at 5’4. My hair was falling out. I was fatigued. I struggled to breathe. My anxiety and mental health was slipping. I was 22 years old, dying and I knew it…….but I had no idea why…….
Notice the sea salt in the background?
I was craving it and eating it like candy.
I went to countless doctors, specialists and medical professionals, who never could find any answers.
Then, tragedy struck, I had an adrenal crisis on my 23rd birthday. Below is the lab result from my blood cortisol level test. After this result, I was transferred to Cleveland Clinic Florida, where they administered an ACTH Stim test, which I epically failed. I was then diagnosed with primary Addison’s disease and started on hydrocortisone and fludrocortisone.
After my adrenal crisis, my life was never the same. I struggled to stabilize on the oral steroid tablets due to malabsorption issues stemming from my congenital disorder, Medullary Sponge Kidney. My weight went up and my quality of life went down.
Research shows that adrenal disease patients diagnosed after an adrenal crisis are statistically less stable than those who are diagnosed never having an adrenal crisis.
This was definitely the case for me. I watched my life crumble. After my adrenal crisis, I suffered central nervous system damage and not only was unable to work, but also struggled to put pants on, hold a spoon and ever shower myself.
I was only 23 years old, facing a bedridden reality where I had to face my own mortality. I went to doctor after doctor, just hoping for a miracle, to no avail.
I was determined to get my life back, so I began obsessively searching for ways to improve my health. I was fortunate to come across Professor Hindmarsh’s book, Congenital Adrenal Hyperplasia where he mentioned the cortisol pumping method.
I knew this method was my best chance at stabilizing with my adrenal insufficiency. Over the next two years, I pursued this treatment. I visited countless endocrinologists in hopes that they would write my prescriptions for the pump, the medication (solu-cortef) and the supplies to begin cortisol pumping, again, to no avail. I was met with the answer of NO on every occasion, citing the reason “adrenal disease is just not managed that way” or “It’s not FDA approved.”
After two years, I finally found a local nurse practitioner who was willing to write the necessary prescriptions. Victory, finally….
……..or so I thought.
I quickly discovered how difficult it was to obtain insurance coverage for an infusion pump if you are not diabetic. Even though I had FINALLY found a doctor willing ti write the prescriptions, my insurance not only denied the pump and the supplies, but also denied the solu-cortef medication as well.
I appealed the decision from the insurance company and continued to fight to start the cortisol pumping method. Florida Blue never approved my request.
It amazed me to see how difficult it was to start the cortisol pumping method. There were so many obstacles to overcome. It was then I realized that there was a massive deficit in the world and I was going to do all it took to fill that deficit, not only for myself but for every adrenal disease patient suffering as I was.
That was the day Adrenal Alternatives Foundation was born.
No longer will we have to scope out ebay, craigslist and internet sources for infusion pumps or supplies. No longer can doctors tell us this method isn’t possible. No longer will anyone have to feel insane for attempting a new method to manage their cortisol replacement.
Adrenal Alternatives Foundation is proud to have a clinical team eager to direct adrenal patients, families and physicians to all possible options to manage adrenal insufficiency.
We are also pleased to be aligned with the organization CR3 to provide pumps and supplies to adrenal patients need them; with or without insurance coverage.
The cortisol pumping method saved my life. Though it is not a cure for adrenal insufficiency, it is allowing me to live my life in a way that was not possible on cortisol tablets.
Click HERE for more information on cortisol pumping.
You can also read more about managing adrenal disease in the book, Adrenal Insufficiency 101, Patient’s Guide to Managing Adrenal Insufficiency.
The Adrenal Alternatives Foundation is registered with the IRS as a 501(c)3 nonprofit organization. We are a patient empowerment organization that encourages, educates and advocates for sufferers of all adrenal diseases and are guiding adrenal disease sufferers to every possible resource to manage their health.
We appreciate all contributions which allow us to further our mission, Education, Advocacy and Awareness for all adrenal disease.
Special thanks to NP Photography for sponsoring our Adrenal Awareness Photography Session.