The Cortisol Pump Saved my Life

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 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.

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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.
EIN: 83-3629121.

We appreciate all contributions which allow us to further our mission, Education, Advocacy and Awareness for all adrenal disease.

Donate to Adrenal Alternatives Foundation

Special thanks to NP Photography for sponsoring our Adrenal Awareness Photography Session.

Adrenal Insufficiency 101: A Patient’s Guide to Managing Adrenal Insufficiency

When someone has adrenal insufficiency, they are faced with the task of not only replacing a life-sustaining hormone, but also replicating a failed body system. Artificially managing cortisol is a complex task and is vital to quality of life. An adrenal patient’s personal cortisol needs may differ from day to day depending on physical, emotional and environmental stressors. This book is a patient’s guide to managing adrenal insufficiency.

We are proud to announce this book as a collaborative project of the Adrenal Alternatives Foundation, Inc.

This book contains factual information supported by credible medical sources, patient surveys and personal testimonies of real adrenal patients.

 

This book contains the following:

Chapter 1:Understanding the Adrenals 

Introduction

Terms to Know

Adrenal Conditions/Diseases

Symptoms

Diagnostics

Standard Treatment for Adrenal Insufficiency

Steroid Equivalent Dose Conversion Chart

 

Chapter 2:Managing Life with Adrenal Insufficiency 

Exercise

Nutrition

Weight

Mindset

Alternative Options

 

Chapter 3:For Family Members/Caregivers/Spouses 

Basic Necessities

Managing an Adrenal Crisis

Emergency Medical Protocols

 

Chapter 4:Critical Care 

Patient Perspective VS Outdated Research

Emergency Room Guidelines

Surgical Guidelines

 

Chapter 5:The Cortisol Pump 

Subcutaneous Cortisol Injections

What is the Cortisol Pump

How to Start the Cortisol Pumping Method

Pre-pump Lab Assessments

Establishing a Pumping Care Plan

Life with the Cortisol Pump

 

Chapter 6:Miscellaneous Care Concerns 

Blood Donation

Pregnancy

Alcohol

Cannabis and CBD

Hyperbaric Oxygen Therapy

 

Chapter 7:Conclusion

Adrenal Alternatives Foundation

Sources/References

About the Author

Dedications

It’s time the truth of adrenal disease was told.

Celebrating Rare Disease Day 2020

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Rare Disease Day is an observance held on the last day of February to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families.

For #RareDiseaseDay we invite you to join us with the
AI Butterfly Challenge, where we are raising our hands for adrenal disease awareness.

Our objective is to flood social media (pinterest, instagram, facebook and twitter) with our butterfly photos to spread awareness on ALL ADRENAL DISEASES!

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Rare Disease Day is February 29, 2020

To participate- Take a photo with your hands in the shape of a butterfly and upload to social media using the hashtags #RareDiseaseDay and #AIButterfly!

You can edit your photo with the template download here!!

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Or, if you’d like us to edit your awareness photo send your photo to adrenalalternatives@gmail.com

 

We hope you join us in raising awareness for all adrenal disease!

Interview with Julia Anthony, Founder of SOLUtion Medical

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Adrenal Alternatives Foundation is proud to be an affiliate with SOLUtion medical, which is creating auto-injecting technology to manage adrenal crisis. We were privileged to sit down with SOLUtion’s Founder, Julia Anthony, for an interview regarding her work in the adrenal community.

Q- Please introduce yourself.
A-Julia Anthony. I’m currently 27 and live in Philadelphia, PA.

Q-How were you diagnosed with AI?
A-I was diagnosed with Salt-Wasting Congenital Adrenal Hyperplasia (SWCAH) at birth.

Q-What are the challenges you see within the adrenal community?
A-I’ve had to teach people about SWCAH my entire life – friends, family, classmates, coworkers…paramedics, ER staff, and the nurses at the Universities I attended. While the former is somewhat understandable, the later is not. This is not to say self-advocacy isn’t important. On the contrary, it is vital. However, awareness about adrenal insufficiency is significantly lacking, even within the medical community. In some ways, adrenal insufficiency and the conditions that cause it are hidden and become clinically significant only during times of physiologic stress. For this reason, people unfamiliar with adrenal insufficiency and adrenal crisis sometimes have a hard time understanding the life-threatening severity of such conditions. The need for continued and improved systemic awareness about adrenal insufficiency, adrenal crisis symptoms, and how to properly administer life-saving medication during emergencies is paramount.

Q-How would you address those challenges?
A-In addition to incorporating user feedback into its design, SOLUtion aims to broaden the scope of public knowledge regarding life threatening adrenal insufficiency conditions. SOLUtion is proud to be collaborating with, among others, Adrenal Alternatives to promote awareness.

Q-What is one thing you wish the medical endocrine society understood about managing adrenal disease?
A-I remember being carried over the shoulder of my mother through the emergency bay doors of Temple Children’s Hospital; life a swirl of lights and noise, too tired to purposefully move yet my body shaking with fever. This was one of many adrenal crises I experienced when I was little, and each door we passed through felt like peeling away the layers of an onion, each portal one checkpoint closer to a hospital bed and some relief from the aching, vomiting, and headache. After having experienced many “tune up” visits to the emergency room, the reverse scenario became a sharp reminder that each door we walked out of led me closer to a world of people with varying degrees of understanding and empathy towards my medical situation. While doctors, support groups, and immediate family are bubbles of knowledge, help, and hopefully comfort, managing adrenal insufficiency conditions and relating to the rest of the world can be challenging. Though some of these frustrations are outside of my control, others, like awareness, can be changed. I hope members of the medical endocrine society realize this discrepancy and utilize their power to learn not only with their fellow members, but also teach the many people not a part of the Society.

Q-Tell us about your upcoming Twistject product?
A-I founded SOLUtion Medical out of personal experience struggling to properly use the current Act-o-vial® delivery system in times of adrenal crisis. The current standard of care in times of adrenal crisis for these conditions includes an Act-o-vial® requiring an average of twelve user steps for injection. The Act-o-vial® delivery system was designed to be utilized by trained medical personnel and not a layperson or an individual living with adrenal insufficiency. If a patient is in an adrenal crisis this is extremely difficult, if not impossible, to self-administer. The TWISTJECT™ autoinjector by SOLUtion provides users reliable life-saving care and reclaimed confidence in times of adrenal crises. TWISTJECT™ is an all-in-one reconstitution device specifically for drugs that require resuspension and injection in emergency situations. TWISTJECT™ (1) stores the diluent and powdered medication components separately (2) mixes the diluent and powdered medication, and (3) auto-injects the reconstituted medication.

Q-What challenges are you facing while creating this product?
A-Designing a functionally reliable device and that speaks to all stakeholders’ needs, including but not limited to the end user and the medical community, is and will continue to take creative problem-solving skills.

Q-Best case scenario, where you do see SOLUtion medical in ten years?
A-SOLUtion’s TWISTJECT™ will be in the purses, backpacks, and sports bags of people throughout the United States and Canada, if not other parts of the world. SOLUtion’s collaboration effort with Adrenal Alternatives and other adrenal insufficiency Foundations and Organizations will result in improved awareness, including a mandatory nationwide CEU course for medical personnel. Lastly, I hope to address the lack of emergency medication on airplanes for those with adrenal insufficiency.

Q-What is the main thing you want the public to know about your product?
A-As a young woman with Salt-Wasting CAH, I’ve set out to solve a long-overdue problem. It is time end-users’ voices are heard and their feedback incorporated into the design of the product they must use to save their lives. TWISTJECT is designed to be as complex as human and as simple as possible. By coming together as a community of people with rare diseases, we will continue to forge ahead and make a difference.

Adrenal Alternatives Foundation is joining SOLUtion Medical with their social media campaign #SubmitMyKit to raise awareness!

Details below-

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Thank you, Julia for interviewing with Adrenal Alternatives. We are thankful for the work you are doing and proud to be an affiliate with SOLUtion medical!

For more information on Julia’s TWISTject device, please visit her website – https://www.solutionmedllc.com/

Managing Adrenal Insufficiency with the Cortisol Pump

Managing Adrenal Insufficiency with the Cortisol Pump

Citation: Adrenal Alternatives Foundation

Adrenal Insufficiency and Diabetes are both difficult diseases to manage and the Adrenal Alternatives Foundation sympathizes with T1D and T2D patients. Both are serious, endocrine disorders and we are in no way downplaying the battle of diabetic patients, we are simply using it as a comparative tool to explain adrenal disease, as most people are unaware of it.

Adrenal insufficiency is a disease where the adrenal glands fail to produce the proper amounts of steroid hormones. There are many different forms of adrenal disease, but the treatment for all forms is the same- steroids for cortisol replacement.

Type 1 Diabetes is the disease where the pancreas fails to produce the correct amount of insulin, thus rendering someone insulin dependent. Both of these diseases are endocrine disorders. Both of these diseases require life-long replacement therapy. The adrenal insufficient person is dependent on cortisol. The diabetic is dependent on insulin. Both of these diseases are life threatening. Both of these diseases require daily monitoring.

Almost every cell in the body has cortisol receptors, making it a crucial hormone. This hormone impacts multiple functions of the body. Without adequate levels of cortisol, the body will go into an adrenal crisis which will result in organ failure and eventually death. Cortisol impacts blood sugar levels, metabolism, stress response, inflammation levels, aids in the immune system, affects the metabolic processes such as the salt and water balances within the body and it also greatly impacts the circadian rhythm.

Unlike diabetic patients, adrenal disease sufferers have no meter to check their cortisol levels. They must be constantly vigilant of their own personal signs and symptoms of low cortisol. and require an emergency injection if their levels drop too low. The standard treatment for all adrenal disease patients is daily cortisol replacement medication- steroids.

Medications such as prednisone, dexamethasone or hydrocortisone are prescribed to replace the deficits of steroid hormones in the body. Steroids have a myriad of side effects ranging from weight gain to emotional disturbances. Long term steroid use has been linked to damage of the bones, eyesight and even muscle tissue.  Yet, steroid cortisol replacement is the only treatment for adrenal disease. In a normal person, during situations of emotional or physical stress their body releases more cortisol. 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 have to artificially manage their cortisol. Their personal cortisol needs may differ from day to day. No two days are the same and it is a struggle to regulate proper cortisol levels.

The most commonly prescribed steroid for adrenal insufficiency is hydrocortisone (HC). This is the bio-identical steroid medication. This medication has a blood serum half life of 90 minutes and must be taken multiple times a day. Most adrenal patients struggle with quality of life due to this mismanagement. Oral HC must be processed through the stomach and the liver before reaching the blood stream.  This causes a constant rise and fall of cortisol levels, which results in subpar function, increases mortality rates and decreases quality of life.

 

Below is an example of natural circadian cortisol rhythm without the presence of adrenal disease-

naturalCircadian

 

The chart below is the circadian rhythm of an adrenal patient on oral hydrocortisone replacement.

UnnaturalCircadian

This image was created with Clearly Alive’s Theoretical Steroid Dose Plotter

Quality of life in adrenal disease patients is vastly poor due to this lack of balance. Oral cortisol replacement cannot do what natural cortisol can. But fortunately, endocrinology research has found a solution for adrenal patients who have failed to stabilize on oral cortisol replacement medications. 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 by programming rates of delivery into the pump. This therapy bypasses the gastric passage and is able to deliver cortisol in a more natural way. With this method, an adrenal insufficient patient can receive a constant supply of cortisol and will not suffer the instability experienced with oral steroid cortisol replacement. Side effects due to mal-absorption are decreased and patients have been reported to have improved sleep, weight management and experience an overall improvement in their energy levels and sense of well-being. This method has also been proven to lessen the prevalence of adrenal crises and lessen hospitalizations due to low cortisol.

Peter Hindmarsh, Professor of Paediatric Endocrinology at University College London and Consultant in Paediatric Endocrinology and Diabetes at University College London Hospitals and Great Ormond Street Hospital for Children. He is currently Divisional Clinical Director for Paediatrics at University College London Hospitals is a pioneer for the cortisol infusion method. He has done much international research and has proven that this method improves the lives of adrenal insufficient patients.

Though this method is not a cure for adrenal disease, it is an option and a ray of hope for those who are struggling with quality of life.

PumpAware

 

 

Sources:

 

Chauhan. Adrenal Insufficiency: Burden Of Disease And Cost Of Illness. http://www.ispor.org/research_pdfs/45/pdffiles/PDB30.pdf. Accessed May 22, 2016.

Coursin DB, Wood KE. Corticosteroid supplementation for adrenal insufficiency. Jama. 2002;287(2):236-240.

Daniel E, Newell-Price J. THERAPY OF ENDOCRINE DISEASE: Steroidogenesis enzyme inhibitors in Cushing’s syndrome. Eur J Endocrinol. 2015.

Gagliardi L, Nenke MA, Thynne TR, von der Borch J, Rankin WA, Henley DE, Sorbello J, Inder WJ, Torpy DJ. Continuous subcutaneous hydrocortisone infusion therapy in Addison’s disease: a randomized, placebo-controlled clinical trial. J Clin Endocrinol Metab. 2014;99(11):4149-4157.

Hindmarsh PC, Charmandari E. Variation in Absorption and Half-life of Hydrocortisone Influence Plasma Cortisol Concentrations. Clin Endocrinol (Oxf). 2015; 82: 557-61.

Oksnes M, Bjornsdottir S, Isaksson M, Methlie P, Carlsen S, Nilsen RM, Broman JE, Triebner K, Kampe O, Hulting AL, Bensing S, Husebye ES, Lovas K. Continuous subcutaneous hydrocortisone infusion versus oral hydrocortisone replacement for treatment of addison’s disease: a randomized clinical trial. J Clin Endocrinol Metab. 2014;99(5):1665-1674.

 

Copyright © *2019 Adrenal Alternatives Foundation* All rights reserved. Adrenal Alternatives Foundation is a patient empowerment organization that encourages, educates and advocates for sufferers of all adrenal diseases and is registered with the IRS as a 501(c)3 nonprofit organization.