Type 1 Diabetes is the disease where the pancreas fails to produce the correct amount of insulin, thus rendering someone insulin dependent.
Adrenal insufficiency is a disease where the adrenal glands fail to produce the proper amounts of steroid hormones and requires lifelong steroid medication for cortisol replacement.
Unlike diabetic patients who have glucometers, adrenal disease sufferers have no meter to check their cortisol levels. They must be constantly vigilant of their own low cortisol symptoms. The excitement from a happy event, the sadness from a death of a loved one or the strain from exercising are examples of things that would cause the body to release more cortisol. In an adrenal insufficient person, this does not happen. They must artificially manage their cortisol, which can differ from day to day. They require an emergency cortisol injection if their levels drop to a critical point.
Hydrocortisone is the standard cortisol replacement medication, which only has a blood serum half-life of 90 minutes and must be taken multiple times a day. This medication must be processed through the stomach and the liver before reaching the blood stream. This causes an abnormal rise and fall of cortisol levels, which results in subpar function, increases mortality rate and decreases quality of life.
However, advances in research have found a solution for adrenal patients. The concept of Cortisol Pumping is the use of solu-cortef (inject-able version of cortisol when mixed with saline) used in an insulin pump programmed to disperse cortisol according to the natural circadian rhythm. This method bypasses the gastric passage and delivers cortisol in a more natural way. With this method, an adrenal insufficient patient can receive cortisol constantly. Side effects due to malabsorption are decreased and patients have been reported to have improved sleep, weight management and experience an overall improvement in their quality of life. This method has also been proven to lessen the prevalence of adrenal crises and lessen hospitalizations due to low cortisol.
Despite the vast amount of research showing the efficacy of this treatment, infusion pumps are not offered to adrenal insufficient patients. Unlike diabetics, they do not have easy access to infusion pumps and supplies.
The Right to Try Act which was passed in 2018, mandated that patients now have legal rights to access life-saving treatments which are not yet FDA approved. Adrenal Alternatives Foundation is a 501c3 organization dedicated to providing adrenal insufficient patients with the resources to safely and legally begin the cortisol pumping method. The nonprofit works to educate physicians on how to manage this protocol. They also assist patients in obtaining insurance approval and their “Pumps for Purpose Program” helps provide pumps and supplies to adrenal patients, with or without insurance coverage. They have also created the resources: Cortisol Pump Guide Book and the Cortisol Pumping website to help guide patients in their pumping journey. Their hope is that one day, there will be disease equality and both adrenal patients and diabetics will both have easy access to infusion pumps.
This information was brought to you by the Adrenal Alternatives Foundation for educational use only and is not meant to provide medical care or legal advice.
Despite its revolutionary success rate, treating cortisol deficiency with the cortisol pumping method has long been a difficult process to obtain. Access to infusion pumps and supplies for non-diabetics and also finding healthcare providers willing to manage adrenal patients on this method are just a few issues that have caused massive barriers to achieve this treatment.
Adrenal Alternatives Foundation is changing that. We are proud to announce our latest resources to help patients safely and successfully start the cortisol pumping method. The following resources were established to aid adrenal patients in their journey to cortisol pumping.
As a collaborative publication containing medical studies, clinical research and documented patient empirical evidence, this book includes everything you need to know about the cortisol pumping method.
Cortisol 101 contains the following information:
Chapter 1: Introduction
What is Adrenal Insufficiency?
What is Cortisol Pumping?
Frequently Asked Questions
Chapter 2: Assessments
Post Pump Testing
Chapter 3: Starting the Cortisol Pumping Process
Finding a Pump Friendly Physician
Choosing a Pump System
Obtaining Insurance Approval
Chapter 4: Creating a Care Plan
Prescriptions & Items Needed
Choosing a Solu-Cortef Ratio
Setting Basal Rates
Updosing and Sick Rates
Sites and Absorption Factors
Chapter 5: Life with the Pump
Chapter 6: Resources
Adrenal Alternatives Foundation
Cortisol Pumping Interactive Website. Adrenal Alternatives Foundation is proud to release the website, cortisolpump.org to provide an easily accessible, free resource on cortisol pumping available internationally. Click the link below to access the website.
Pumps for Purpose Program. Adrenal Alternatives Foundation is proud to have partnered with the non profit, CR3 to create a program specific to adrenal disease patients to provide them with affordable pumps and supplies, with or without insurance coverage.
Physician Guidance. Our clinical team is proud to guide physicians on the necessary protocols that must be taken to safely and effectively create a care plan for adrenal patients seeking to manage their cortisol deficiency via the cortisol pumping method. Though we are not a replacement for medical care or advice, we are proud to help guide physicians on the proper lab testing and prescriptions needed to begin the cortisol pumping method.
If you need assistance on the cortisol pumping method, please fill out the contact form and we will have a team member contact you to schedule a free consult.
You can also download a One pager on the cortisol pump here.
This content has been brought to you by Adrenal Alternatives Foundation, a 5o1c3 non profit organization. We appreciate all contributions which allow us to further our mission, Education, Advocacy and Awareness for all adrenal disease. EIN: 83-3629121.
Adrenal Alternatives Foundation’s main mission is to provide access and education to “adrenal alternatives” for those who suffer from cortisol deficiency.
For some patients, oral steroid medications are not adequate enough to maintain quality of life, therefore, alternative cortisol replacement methods are a life saving intervention.
Below is an interview with Lauren, a cortisol pumper whose life was saved because of the cortisol pumping method!
Q-Please introduce yourself?
A- Hi, my name is Lauren Michelle and I am 23 years old. I’m a former ballerina turned chemist turned full time chronically ill patient. I am nearly done with my Bachelors of Science in Chemistry, started up at Northern Arizona University, but because of illness I have had to move back home and am finishing the degree at Arizona State University. Currently though I am on medical leave and training my German Shepherd puppy Nova to be my service dog.
Q-What country do you live in?
A- The United States of America. Specifically the state of Arizona.
Q-What form of adrenal disease were you diagnosed with?
A- At the beginning of 2020 I was diagnosed with Adrenal Insufficiency at the hospital after an acute adrenal crisis. I had zero basal cortisol that they could detect, and then the stim test came back as 0.55 cortisol. Later in the year I was diagnosed as Addisons with further testing and more symptoms showing up.
Q-Can you tell us about your pump that helps you manage your adrenal disease?
A- Before getting on the pump, we tried EVERYTHING to manage my Addisons. The hydrocortisone oral tablets, a liquid formulation specifically compounded for me, and even IV solu cortef. I have malabsorption of my small intestine, and also suffer from MCAS including a lot of idiopathic anaphylaxis. For about 6 months I was in a cycle of anaphylaxis and adrenal crisis due to flare ups because of inconsistent cortisol levels and absorption. Since being on the pump I have been able to stay on maintenance replacement dosing for the first time since being diagnosed. I can micro titrate the amount of hydrocortisone that I need when I feel low, and I don’t have to sit there guessing how much steroid I need with the pills or liquid formulation. Sometimes I only need 1 mg more to get my body back on track, whereas before the pump that was NOT an option.
Q-What made you decide to get on the cortisol pump?
A- I realised I wasn’t absorbing pills when hospitalized for most of the month of June 2020. The doctors helped me to transition to liquid hydrocortisone. This bought me some time before my stomach completely stopped working. I started to have to give more of the liquid to just remain stable and out of crisis. When I heard about the pump I knew I needed to be on it, as I was not stable at all on anything else we had tried.
Q- Was your doctor supportive of your decision to start pumping?
A- I had to see a different endocrinologist than my main one, as she had never done cortisol pumping but was fully supportive of the idea for me. Once I found an endocrinologist who knew how to program and monitor cortisol pumping than the one I was seeing, both endocrinologists and all of my other specialists, specifically my allergist and immunologists, were very supportive of the pump. One of my doctors literally told me they thought I was going to die last year because of how poorly my body was responding to other forms of treatment. I can say with confidence that I felt the same way. I couldn’t stop crying tears of relief and joy once I got on the pump.
Q- Did your insurance cover your pump and supplies?
A- I am one of the fortunate ones where my insurance has covered my Medtronic and supplies. I think this is because I had been hospitalized almost every month in 2020, that or in the ED to treat an adrenal crisis. Literally anything to keep me out of the hospital.
Q- What is something you wish you could tell all adrenal disease patients?
A- Something one of my favorite ED nurses told me when I was first diagnosed was that during her first year of diagnosis (she also has adrenal insufficiency) she thought she was going to die, but once she figured out what worked best for her body she has been fine ever since. I am thankful she told me that. I wish someone had told me that adrenal insufficiency treatment isn’t one size fits all. That you are going to feel overwhelmed. That steroids will make you gain weight. That this will be one of the hardest diseases for you to manage throughout your lifetime. But you WILL be able to manage it. To trust yourself, as the longer you live with the disease (or knowledge that you have the disease), the better you are going to know your own body and what to do to keep it functioning. No one is going to fully understand what you are going through, especially because it is a rare disease. Don’t be afraid to advocate for your health needs, and be sure to keep a log of symptoms and dosing.
Q-How has adrenal disease changed your life?
A- In a very strange way it has brought me so much closer to my family and specifically my mom. We were never the closest growing up but when I was diagnosed she essentially became my caregiver. I treasure this relationship so much. I have faced a lot of life or death situations in the past 4 years leading up to the diagnosis, so my perspective on what is important in life changed drastically. Before, I was so career driven and independent, but now I see that school will always be there and it doesn’t actually matter how long it takes to get through it. I learned quickly that the friends who are true friends and love you will be there for you no matter what, but I have lost a significant amount of friends due to having to deal with my own health. Overall I have been incredibly humbled and grateful since diagnosis, and have so much more empathy for others.
Q-Do you think the cortisol pump has improved your life?
A- 2020 I was so so sick, all of the time. Since getting on the pump I have finally begun healing. My doctors believe that I never had a consistent amount of cortisol in my body until I got on the pump, so I spent last year fighting for my life often because of malabsorption issues. Since starting the pump I finally have a basal cortisol level, making it possible to tackle a lot of my other health issues. If it were not for the pump I do not think I would be here today.
Q-What is a quote that you live by?
34 Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own. – Matthew 6:34 9 Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go. – Joshua 1:9
You can follow Lauren’s journey on her instagram or tiktok at the handle: @cortisol.queen
For more information on cortisol pumping visit the links below.
The cortisol pumping method is a relatively unknown alternative treatment for adrenal insufficiency. Most doctors have never heard of it, but that does not mean it is not available. The use of infusion pumps to deliver medication is a common practice, mainly in the management of diabetes. However, the use of cortisol in infusion pumps is considered “off label” use. Cortisol pumping is available wherever infusion pumps are available. All you need is a doctor willing to manage your care, which involves he or she writing a prescription for an infusion pump, supplies and solu-cortef. Adrenal Alternatives Foundation works with patients internationally with cortisol pumping advocacy and we educate healthcare professionals all over the world on how to safely and effectively start the cortisol pumping method. We also work alongside other organizations to repurpose pumps and supplies to adrenal patients with our Pumps for Purpose program. Cortisol pumping is available internationally, wherever infusion pumps are available.
Myth #2 “It isn’t safe.”
Research has shown that cortisol pumping is an effective alternative treatment to oral steroids for the management of cortisol deficiency. We have compiled a comprehensive list of evidence showing that this method is safe.
A recent poll done by Adrenal Alternatives Foundation revealed that 97% of the patients surveyed stated that cortisol pumping improved their quality of life.
Adrenal insufficiency requires adequate cortisol replacement in the form of steroid medications. With the cortisol pumping method, patients can bypass the gastric pathway and absorb their life-sustaining medication better. This treatment is revolutionary for hypermetabolizers and for those with gastro-intestinal problems or malabsorption issues. The cortisol pumping method truly puts adrenal patients in control of their cortisol distribution in a way that steroid pills cannot. In situations of physical or emotional stress where “updosing” is needed, the pump can immediately administer a bolus, which is extra cortisol administered through the pump canula at the amount you select. Instead of having to wait for pills to metabolize, the cortisol can be absorbed faster and can help prevent adrenal crisis. Cortisol pumping is not a cure for adrenal insufficiency and is not a treatment that is right for everyone. If you are well managed on steroid replacement pills, being on the pump method may not be necessary to achieve quality of life.
Myth #3 “My insurance won’t cover it”
What your insurance will cover is completely dependent on your specific coverage plan and insurance company. If you are denied, you can always file an appeal. Visit this link to download the example appeal letter you can fill out with your information to appeal your insurance company’s denial.
Our foundation team also assists patients file insurance appeals has successfully battled countless insurance companies across the nation and can assist you in your fight for coverage.
It is also an option to cash purchase a pump and supplies specifically from companies such as Omnipod and Medtronic if you have a prescription from your overseeing physician.
Adrenal Alternatives Foundation has also aligned with the organization CR3 to help adrenal patients acquire pumps in a safe and legal manner. Visit this link to apply for pump assistance.
Myth #4 “My doctor said no.”
Finding a healthcare professional willing to work with this relatively unknown treatment option can be a challenge. You may have to “query” multiple physicians before you find one willing to manage your care on the cortisol pumping method.
In order to achieve this, it is best to prepare a compelling case and provide it to the physician before your appointment. Send research on the cortisol pumping method and your health records to the physician before your appointment so they are aware of your intentions before hand. We have created a pump proposal letter you can fill out with your information, explaining your diagnosis, failed treatments and desire to be on the pump. The doctor may or may not be receptive to your request and alerting them of your intentions beforehand may save you time, money and effort. Again, you may have to contact multiple physicians before finding one who is willing to manage the cortisol pumping method.
Our clinical team is also willing to speak with your current physician and provide them with guidelines on how to safely start the pumping method. If you would like our assistance, fill out our contact form and request a cortisol pumping consult.
Myth #5 “It isn’t legal.”
FDA approval is not necessary to safely and legally begin cortisol pumping under the care of a licensed physician. Use of the infusion pump for adrenal insufficiency is considered an “off label” treatment. Infusion pumps have long been approved for the administration of medications.
According to the Department of Health and Human Services Centers for Medicare and Medicaid Services Medicare Coverage Issues Manual Section 60-14 A: “6. Other uses of external infusion pumps are covered if the contractor’s medical staff verifies the appropriateness of the therapy and of the prescribed pump for the individual patient.”
In addition, according to the recently passed Right to Try Act, patients have legal rights to access to life-saving treatments which are not yet FDA approved.
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.
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.