Adrenal Insufficiency 101
Adrenal insufficiency (AI) occurs when the body is unable to produce Cortisol, a hormone which helps maintain essential functions such as blood pressure, blood sugar, and heart muscle tone. There are over sixty causes of AI, including genetic mutations, autoimmune disease, infections, and steroid treatment for other conditions such as asthma and cancer. Some AI patients also have an Aldosterone deficiency making electrolyte balance an important part of managing adrenal insufficiency.
Adrenal Insufficiency affects children and adults of all races and ethnic backgrounds. There are different types and severities of adrenal insufficiency caused by a variety of conditions.
The treatment and management of adrenal insufficiency requires an individualized plan between patient and physician. Overall health, history, and other conditions need to be considered. Information pertaining to adrenal insufficiency management provided by our website is not meant to replace guided care from your medical providers.
Cortisol belongs to the class of hormones called glucocorticoids, which affect almost every organ and tissue in the body. Cortisol’s most important job is to help the body respond to stress. Among its many tasks, cortisol helps
- maintain blood pressure and heart and blood vessel function
- slow the immune system’s inflammatory response—how the body recognizes and defends itself against bacteria, viruses, and substances that appear foreign and harmful
- regulate metabolism
The amount of cortisol produced by the adrenal glands is precisely balanced. Like many other hormones, cortisol is regulated by the hypothalamus, which is a part of the brain, and the pituitary gland. First, the hypothalamus releases a “trigger” hormone called corticotropin-releasing hormone (CRH), which signals the pituitary gland to send out ACTH. ACTH stimulates the adrenal glands to produce cortisol. Cortisol then signals back to both the pituitary gland and hypothalamus to decrease these trigger hormones.
Aldosterone belongs to the class of hormones called mineralocorticoids, also produced by the adrenal glands. Aldosterone helps maintain blood pressure and the balance of sodium and potassium in the blood. When aldosterone production falls too low, the body loses too much sodium and retains too much potassium.
The decrease of sodium in the blood can lead to a drop in both blood volume—the amount of fluid in the blood—and blood pressure. Too little sodium in the body also can cause a condition called hyponatremia. Symptoms of hyponatremia include feeling confused and fatigued and having muscle twitches and seizures.
Too much potassium in the body can lead to a condition called hyperkalemia. Hyperkalemia may have no symptoms; however, it can cause irregular heartbeat, nausea, and a slow, weak, or an irregular pulse.
Types of Adrenal Insufficiency
Information compiled by AIU using sources from the Lancet 2014 “Adrenal Insufficiency”: Evangelia Charmandari, Nicolas C Nicolaides, George P Chrousos. Additional resources from NIH and Mayo Clinic were also used. Reviewed and edited by Dr. Mitchell Geffner.
Primary Adrenal Insufficiency
Central Adrenal Insufficiency
Occurs due to damage of the pituitary gland. Morning ACTH levels are generally low in this setting. Some causes of SAI include: pituitary tumors, mutations in pituitary transcription factors causing multiple pituitary hormone deficiencies and rarely isolated ACTH deficiency, Sheehan Syndrome (pituitary infarction), trauma, or iron deposition.
Tertiary Adrenal Insufficiency
Occurs due to problems with the hypothalamus. Tests may show low-to-normal morning ACTH levels. Some causes include use of glucocorticoids, hypothalamic tumors, hypothalamic hypopituitarism, following cure of Cushing Syndrome, trauma or iron deposition.
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Frequently Asked Questions
What are the symptoms of Adrenal Insufficiency?
Chronic, or long lasting, fatigue
Muscle weakness
Loss of appetite
Weight loss
Abdominal pain
Painful muscles and/or join pain
Prolonged recovery from minor infections
Nausea
Vomiting
Diarrhea
Low blood pressure that drops further when a person stands up, causing dizziness or fainting
Irritability and depression
Craving salty foods
Hypoglycemia, or low blood sugar
Headache
Sweating
Darkening of the skin
Irregular or absent menstrual periods
How is Adrenal Insufficiency Diagnosed?
A physician must perform certain tests to confirm a diagnosis. We understand that for some a diagnosis is hard to obtain. Several of our members took months or years to receive a diagnosis. Although there are many conditions which can lead to adrenal insufficiency the cause of your AI may not be known. Although many physicians can make the diagnosis, in our opinion, your best chance is with an endocrinologist who has experience with adrenal insufficiency.
How is Adrenal Insufficiency Treated?
Just as some people with diabetes take insulin to live, people with adrenal insufficiency must take cortisol replacements (steroids) to live. Oral steroids such as prednisone, prednisolone, hydrocortisone, fludrocortisone, and dexamethasone are taken throughout the day. Dosing depends on weight and type of medication used. Many patients have found success using the Circadian Rhythm. There are also some cases in which a patient is better served by use daily injections of hydrocortisone or a subcutaneous pump.
Can Adrenal Insufficiency be treated naturally?
While herbs, supplements, and/or a special diet may help a patient feel better, they cannot “cure” adrenal insufficiency and should not be used without consulting with your physician. Adrenal Insufficiency is life threatening and treatment should not be delayed.
Can Individuals with Adrenal Insufficiency Experience Improvement?
Yes! With proper diagnosis and treatment, health can improve dramatically, as seen in the photos of Anastasia. While adrenal insufficiency is a chronic condition that presents ongoing challenges, many individuals experience significant improvement in their well-being. However, it’s important to recognize that symptoms may not always be visible to coworkers, family, and friends, even when someone appears “normal.”
Are there any groups available?
There are many excellent support groups available through various organizations. At AIU, we offer online support groups on Facebook, which are carefully managed to ensure a safe and informative space for members. All of our Facebook groups require membership questions to be answered prior to joining.
Visit our Support & Resources page
There are numerous conditions which can or do cause adrenal insufficiency. Most of them are rare.
We have listed some of the most commonly seen in our group. This list is by no means complete!
Addison's Disease
From the Mayo Clinic: Addison’s disease is a disorder that occurs when your body produces insufficient amounts of certain hormones produced by your adrenal glands. In Addison’s disease, your adrenal glands produce too little cortisol and often insufficient levels of aldosterone as well.
Adrenoleukodystrophy (ALD)
From MedlinePlus.gov: Adrenoleukodystrophy describes several closely related inherited disorders that disrupt the breakdown (metabolism) of certain fats (very long chain fatty acids).
Adrenoleukodystrophy (ALD) and adrenomyeloneuropathy (AMN) are important potential underlying diseases to consider in boys and men with primary idiopathic (unexplained) adrenal failure/Addison’s Disease where adrenal antibodies cannot be detected and there is no other obvious cause of adrenal failure. Link between ALD and AI.
ALD is responsible for about 1/3 of all cases of juvenile adrenal insufficiency. ALD is a rare, debilitating neurological disease that leads to childhood death in about a third of patients. Often, one of the first symptoms is adrenal insufficiency. Screening patients presenting with adrenal insufficiency (especially juvenile ones) for ALD could be significantly increase the correct diagnosis of this disease. Sanjay S.P. Magavi, Ph.D.
Visit ALD Connect for more information.
Congenital Adrenal Hyperplasia (CAH)
Medscape: Craniopharyngiomas are dysontogenic (involving abnormal cell and tissue growth and differentiation) tumors with benign histology and malignant behavior. Looking for support, here’s a great FB group.
Craniopharyngioma
Medscape: Craniopharyngiomas are dysontogenic (involving abnormal cell and tissue growth and differentiation) tumors with benign histology and malignant behavior. Looking for support, here’s a great FB group.
Cushing's Syndrome
The treatment for this condition can cause one to become adrenal insufficient.
Cushing’s Support and Research Foundation: Cushing’s syndrome is an endocrine or hormonal disorder. It occurs when the adrenal glands release too much of the hormone cortisol into the body for long periods of time.
Cortisol is essential to many of the body’s cardiovascular and metabolic functions. But perhaps its most important job is to help the body respond to stress.
Normally the adrenal gland releases the exact amount necessary to meet our daily needs. However, sometimes the process goes wrong and an excess of cortisol is produced.
The malfunction may be caused by:
- A pituitary tumor, which causes the pituitary gland (at the base of the brain) to stimulate the adrenal glands to secrete high levels of cortisol.
- A tumor of the adrenal gland (located above the kidney).
- A benign or malignant tumor of the lung or some other organ.
- Prolonged use of cortisone drugs, such as Prednisone, commonly prescribed for asthma, rheumatoid arthritis or lupus.
Hypopituitarism and Panhypopituitarism
Cincinnati Children’s Hospital Medical Center The pituitary is a small gland located at the base of the brain. It is referred to as the “master gland” because it controls many hormones. The pituitary produces hormones that are needed for normal body functions.
When you do not have two or more of the pituitary hormones, it is known as hypopituitarism (hahy-poh-pi-too-i-tuh-riz-uh m). The lack of all pituitary hormones is known as panhypopituitarism.
Optic Nerve Hypoplasia
Children’s Hospital of Los Angeles: Optic Nerve Hypoplasia (ONH) is the under-development or absence of the optic nerve combined with possible brain and endocrine abnormalities.
Pituitary Tumors
Sheehan's Syndrome
Steroid Use
Thyroid Conditions
NHS UK: “People with Addison’s disease often have an underactive thyroid gland (hypothyroidism), where the thyroid gland does not produce enough hormones.”
Immunotherapy
Talk to your doctor about your risk for adrenal insufficiency. Download flyer here.
Adrenal Crisis 911
During times of illness or injury the body naturally produces extra cortisol to maintain normal functions such as fluid balance and blood pressure. Since those with adrenal insufficiency are unable to produce adequate levels of cortisol an additional dose of hydrocortisone is necessary. Without this extra dose an adrenal crisis causing shock, heart failure, coma and even death can occur.
Defined by UCLA Health: Acute adrenal crisis is a MEDICAL EMERGENCY caused by a lack of cortisol. Patients may experience lightheadedness or dizziness, weakness, sweating, abdominal pain, nausea and vomiting, or even loss of consciousness. Risk factors for adrenal crisis include physical stress such as infection, dehydration, trauma, or surgery, adrenal gland or pituitary gland injury, and ending treatment with steroids such as prednisone or hydrocortisone too early.
Emergency Preparedness
The map below features physicians recommended by our members. Inclusion on this list does not constitute an endorsement or recommendation by AIU. Patients are encouraged to conduct their own research to determine the best fit for their needs.