An adrenal crisis is defined as a life- threatening, medical emergency caused by insufficient levels of the hormone, cortisol. It will lead to death if left untreated and must be quickly addressed with the administration of an emergency cortisol injection. Adrenal patients should always carry an emergency injection and administer it immediately in the event of an adrenal crisis. Patients should also wear an identifying medical alert bracelet that states they are steroid dependent.
Adrenal Alternatives Foundation has created a QR code which can be scanned to instantly access the lifesaving information on how to administer an emergency cortisol injection to treat an adrenal crisis.
How to Scan a QR Code
Open the QR Code reader on your phone.
Hold your device over a QR Code so that it’s clearly visible within your smartphone’s screen. Two things can happen when you correctly hold your smartphone over a QR Code.
The phone automatically scans the code.
On some readers, you have to press a button to snap a picture, not unlike the button on your smartphone camera.
If necessary, press the button. Your smartphone reads the code and navigates to the intended destination, which doesn’t happen instantly. It may take a few seconds on most devices.
Inject Don’t Neglect!
Always administer an emergency cortisol injection in the event of an adrenal crisis.
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.
What is the difference between blood, urine and saliva cortisol testing?
*This information is to be used for educational purposes only and is not intended to provide medical care or advice*
There are three forms of cortisol in the body:
Bound Cortisol– Cortisol which is attached to a specific protein (CBG) is known as a bound cortisol. Metabolized cortisol evaluates how much cortisol is being made in total and cleared through the liver.
Free Cortisol- Cortisol which is not attached to any protein known as free cortisol. Free cortisol reveals how much cortisol is free to bind to receptors and allows for assessment of the circadian rhythm.
Cortisol metabolites– Metabolites of cortisol gives insight into the relative activity of 11b-HSD types I and II, which controls the activation and inactivation (to cortisone) of cortisol.
Approximately 90% of cortisol is bound to cortisol-binding globulin (CBG), also known as transcortin, and albumin. Transcortin: corticosteroid-binding globulin (CBG) or serpin A6, is a protein encoded by the SERPINA6 gene and is an alpha-globulin. Albumin: main protein in your blood and carries substances such as hormones, vitamins, and enzymes throughout the body.
5% of circulating cortisol is free (unbound). Only free cortisol can access the enzyme transporters in the liver, kidney, and other tissues that mediate metabolic and excretory clearance.
Cortisol-binding globulin (CBG) has a low capacity and high affinity for cortisol, whereas albumin has a high capacity and low affinity for binding cortisol. Variations in CBG and serum albumin due to renal or liver disease may have a major impact on free cortisol.
Standard Ranges for Cortisol:
A normal adult range for cortisol levels in urine is between 3.5 and 45 micrograms per 24 hours.
Reference ranges for salivary cortisol assay: <0.4–3.6 nmol/L at 2300 h & 4.7–32.0 nmol/L at 0700 h.
Standard 8 a.m. range for blood serum cortisol is between 6 and 23 micrograms per deciliter (mcg/dL)
Measuring both free and bound cortisol levels allows for insight into the rate of cortisol clearance/metabolism and clearance.
Urine and saliva cortisol testing are used to evaluate free cortisol levels. Morning saliva cortisol panels are done to measure the diurnal cortisol curve. Blood cortisol testing is used to evaluate total cortisol and also bound cortisol.
In patients with adrenal insufficiency, an evaluation of cortisol tested via blood, saliva and urine can all be beneficial in evaluating the efficacy of their cortisol replacement medication(s). Recommended protocols are a comparative assay of cortisol levels from urine, blood and saliva specimens. The patient’s quality of life, symptomatic complaints and also fatigue levels should also be used when evaluating a proper cortisol dosing regimen.
Abraham, S. B., Rubino, D., Sinaii, N., Ramsey, S., & Nieman, L. K. (2013). Cortisol, obesity and the metabolic syndrome: A cross-sectional study of obese subjects and review of the literature. Obesity (Silver Spring), 21(1), 1-24. doi:10.1002/oby.20083
Dhillo WS, Kong WM, Le Roux CW, Alaghband-Zadeh J, Jones J, Carter G, Mendoza N, Meeran K and O’Shea D. Cortisol-binding globulin is important in the interpretation of dynamic tests of the hypothalamic-pituitary-adrenal axis. Euro J Endo. 2002;146
Hoshiro, M., Ohno, Y., Masaki, H., Iwase, H., & Aoki, N. (2006). Comprehensive Study of Urinary Cortisol Metabolites in Hyperthyroid and Hypothyroid Patients. Clinical Endocrinology, 64, 37-45. doi:10.1111/j.1365-2265.2005.02412.x
Taniyama, M., Honma, K., & Ban, Y. (1993). Urinary Cortisol Metabolites in the Assessment of peripheral Thyroid Hormone Action for Diagnosis of Resistance to Thyroid Hormone. Thyroid, 3, 229-233.
Tomlinson, J. W., Finney, J., Hughes, B. A., Hughes, S. V., & Stewart, P. M. (June 2008). Reducing Glucocorticoid Production Rate, Decreased 5alpha-Reductase Activity, and Adipose Tissue Insulin Sensitization After Weight Loss. Diabetes, 57, 1536-1543.
Bancos I, Erickson D, Bryant S, et al: Performance of free versus total cortisol following cosyntropin stimulation testing in an outpatient setting. Endocr Pract 2015 Dec;21(12):1353-1363 doi: 10.4158/EP15820
Petersen KE: ACTH in normal children and children with pituitary and adrenal diseases. I. Measurement in plasma by radioimmunoassay-basal values. Acta Paediatr Scand 1981;70:341-345
Hamrahian AH, Oseni TS, Arafah BM: Measurements of serum free cortisol in critically ill patients. N Engl J Med 2004;350;16:1629-1638
Ho JT, Al-Musalhi H, Chapman MJ, et al: Septic shock and sepsis: a comparison of total and free plasma cortisol levels. J Clin Endocrinol Metab 2006;91:105-114
le Roux CW, Chapman GA, Kong WM, et al: Free cortisol index is better than serum total cortisol in determining hypothalamic-pituitary-adrenal status in patients undergoing surgery. J Clin Endocrinol Metab 2003;88:2045-2048
Huang W, Kalhorn TF, Baillie M, et al: Determination of free and total cortisol in plasma and urine by liquid chromatography-tandem mass spectrometry. Ther Drug Monit 2007;29(2):215-224
The concept of Cortisol Pumping is the use of solu-cortef (inject-able version of cortisol when mixed with saline or bacteriostatic water) used in an insulin pump programmed to disperse cortisol according to the natural circadian rhythm by programming rates of delivery into the pump. This method bypasses the gastric passage and is able to deliver cortisol in a more natural way. With an infusion pump, an adrenal insufficient patient can receive a constant supply of cortisol and can lesson the instability experienced with oral steroid cortisol replacement. Side effects due to malabsorption can be decreased and patients have 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 shown to lessen the prevalence of adrenal crises and hospitalizations due to low cortisol.
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.
According to a survey done by the Adrenal Alternatives Foundation concluded that 94.2% of the 52 anonymous cortisol pumping patients reported that the cortisol pump had improved their quality of life.
Is Cortisol Pumping FDA approved?
Adrenal Alternatives Foundation is actively working to gain FDA approval for the cortisol pumping method, but that involves years of clinical trials, patient studies and funding. We will achieve this one day, but until then, we are educating patients that 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 “off label.”
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. The act states the following:
(a) IN GENERAL.—Chapter V of the Federal Food, Drug, and Cosmetic Act is amended by inserting after section 561A (21 U.S.C. 360bbb–0) the following: ‘‘SEC. 561B. INVESTIGATION ‘‘SEC. 561B. INVESTIGATIONAL DRUGS FOR USE BY ELIGIBLE PATIENTS. ‘‘(a) DEFINITIONS.—For purposes of this section— ‘‘(1) the term ‘eligible patient’ means a patient— ‘‘(A) who has been diagnosed with a life-threatening disease or condition (as defined in section 312.81 of title 21, Code of Federal Regulations (or any successor regulations)); ‘‘(B) who has exhausted approved treatment options and is unable to participate in a clinical trial involving the eligible investigational drug, as certified by a physician, who— ‘‘(i) is in good standing with the physician’s licensing organization or board; and ‘‘(ii) will not be compensated directly by the manufacturer for so certifying; and ‘‘(C) who has provided to the treating physician written informed consent regarding the eligible investigational drug, or, as applicable, on whose behalf a legally authorized representative of the patient has provided such consent.”
According to the above legislation, adrenal patients meet the criteria for legal use of an infusion pump to administer glucocorticoid medication.
How do I get a pump?
The first step to cortisol pumping is establishing a care plan with a licensed medical professional. This can be a difficult challenge when trying to find a physician to manage your care with the pumping method, as most have never heard of it. This is why Adrenal Alternative Foundation has volunteers on our clinical advisory team willing to communicate with your healthcare team to help you establish a plan regarding your care on the cortisol pumping method.
It may take you many tries to find a physician willing to manage your care with the cortisol pumping method. Send your research, your health information, everything you can to the endocrinologist before your appointment so they are aware of your intentions beforehand. It may benefit you to write a letter to the endocrinologist prior to your appointment that explains your diagnosis, failed treatments and desire to be on the pump. They may or may not be receptive to your request and alerting them of your intentions beforehand may save you time, money and effort.
Will insurance cover pumps and supplies?
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.
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.
It is also an option to cash purchase pumps and supplies specifically from companies such as Omnipod and Medtronic if you have a prescription from your overseeing physician.
Is cortisol pumping safe?
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 pump 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.
Do I still need an emergency injection on the pumping method?
An adrenal crisis is defined as a life- threatening, medical emergency caused by insufficient levels of the hormone, cortisol. It will lead to death if left untreated and must be quickly addressed with the administration of an emergency cortisol injection. The pump is not a replacement for acute adrenal crisis care. Adrenal patients should always carry an emergency injection and administer it immediately in the event of an adrenal crisis.
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.
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
Terms to Know
Standard Treatment for Adrenal Insufficiency
Steroid Equivalent Dose Conversion Chart
Chapter 2:Managing Life with Adrenal Insufficiency
Donating blood is one of the most selfless acts a person can do, but when you have a life-threatening illness such as adrenal insufficiency, there are questions as to whether you are allowed to donate blood or not.
Can adrenal disease patients donate blood?
The answer is complicated.
Some countries/territories allow blood donation from adrenal patients and others do not. It is ultimately dependent on the regional medical director’s decision of a particular organization.