Support for Those Living with Adrenal Insufficiency

Frequently Asked Questions

Below you'll find some of the most Frequently asked questions. When you click on a question answers will appear underneath.

What is Adrenal Insufficiency?

Adrenal insufficiency (AI) occurs when the body is unable to properly regulate 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 as defined by the NIH

“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.” NIH

Aldosterone as defined by the NIH

“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.” NIH

TYPES OF ADRENAL INSUFFICIENCY

Primary adrenal insufficiency occurs do to damage of the adrenal gland high.  ACTH levels are present in the morning.

Secondary adrenal insufficiency occurs due to damage of the pituitary gland.  ACTH levels are low to normal in the mornings.

Tertiary adrenal insufficiency also shows low to normal ACTH levels in the morning, but can be differentiated from secondary through a CRH stimulation test.  CRH is released from the hypothalamus.

Sources: NIH, Mayo Clinic, Endocrine Surgeon, and Pituitary Network.

Read more: NIH publication about adrenal insufficiency          Patient’s (a UK health platform) leaflet on AI

What Causes Adrenal Insufficiency?

Congenital conditions, cancers, tumors and over 60 other conditions can affect the pituitary gland, adrenal gland, or other endocrine organs. When the endocrine systems is unable to work properly, cortisol and often aldosterone production is affected.  The onset of adrenal insufficiency can occur during any state of life.

UCLA Endocrine Surgery lists several Diseases of the Endocrine System, if you have been diagnosed with one of them you could be adrenal insufficient.

ALD Life 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.  Sanjay S.P. Magavi, Ph.D. ALD is responsible for about 1/3 of all cases of juvenile adrenal insufficiency.

See our list of related conditions. 

What are the Symptoms of Adrenal Insufficiency?

National Institutes of Health and Society for Endocrinology UCLA Endocrine Society lists symptoms such as:

  • 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
  • in women, loss of interest in sex

    A craving for salty foods is one common symptom of adrenal insufficiency.

 

Are anxiety and depression common in those with adrenal insufficiency?

“It’s estimated that up to one-third of people with a serious medical condition have symptoms of depression.” WebMD: Dealing With Chronic Illnesses and Depression

AIU has encountered several members who suffer from anxiety and depression. The NIH publication Treating depression in patients with chronic disease states that “Chronic medical illness is consistently associated with an increased prevalence of depressive symptoms and disorders.”

View WebMD’s slideshow about the symptoms of depression.  Mayo Clinic’s list of depression symptoms and anxiety symptoms.

Depression and Anxiety are serious, don’t hesitate to ask for help!  National Suicide Prevention Hotline   1 (800) 273-8255

How can I find a Physician? What Questions should I ask?

Thanks to Kimberly Holland Doran for many of the questions on this list.

Finding a physician

  • Ask for recommendations from your primary care physician and others you know with AI
  • Use Medicare.gov to compare hospitals in your area.

Before your appointment

When you make your appointment ask how long you will have to speak with the doctor. Ask if a longer appointment is available (30 minutes may be the max, but every practice is different)

  • Make lists which includes dates, doctor’s name, and hospital
    • Diagnosis
    • Allergies
    • Medications
    • Surgeries
  • Create a list of your symptoms. Meds you are taking, herbs and vitamins included.
  • List times of day that certain symptoms are the worst (brain fog, lethargy, salt cravings so on.)
  • Write all of this down (possibly a copy for the doc) or you run the risk of forgetting something. (That’s the worst)
  • Educate yourself as much as possible about your disease. Don’t be afraid to ask questions during your appointment if you don’t understand or agree with the advice you’re given.
  • Take a friend or family member with you for support. Having someone with you can help you stay focused if you get overwhelmed.

Questions to ask at your first appointment

First: Work to find a balance between speaking up for your needs and speaking to the physician with respect. Meeting with a new doctor is an opportunity to create a working relationship. Tone of voice and approach are important.

  • How many people with Adrenal Insufficiency have you treated?
  • Where do you get your treatment protocols? What sources do you use? (Up to date, Meaningful use, NIH, etc. are all good resources)
  • How do you determine steroid dose? Do you believe that each person should be dosed based on their personal needs or do you have one method/formula that you feel works for everyone? (The answer to this question will tell you a great deal about the Doctor and how he truly treats patients. We are individuals. Our cortisol needs are too and should be treated accordingly)
  • What encrypted messaging system would we use to communicate in between appointments? Can I access my lab results through this system?
  • Will you give standing or routine lab orders?
  • In the event that you are on vacation or otherwise unavailable which of your colleagues specializes in adrenal disorders?
  • If you are interested in using the Circadian Rhythm method ask if they are open to using it.
  • Would you be willing to do quarterly follow ups?
  • Which replacement steroids do you recommend?
  • Will you run a Plasma renin with each lab to see if and when I might need to replace Aldosterone?
  • What, if any, other hormones do we need to replace?
  • Will you prescribe an emergency letter and injection kit as well as provide training on how to inject? sample emergency letters can be found on our emergency page.

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.

UCLA Endocrine Surgery has a list on the right hand side of this page listing several tests.

Endocrinology Expected Values and S.I. Unit Conversion Tables:  show the range of many hormones relating to adrenal insufficiency and could be of help in understanding the test results.

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. More on the pump.

imagesBe sure to ask your physician to prescribe and emergency injectable for use during and adrenal crisis. Solu-Cortef® in the act-o-vial is most often prescribed in the USA, Efcortesol may be prescribed in the UK and other countries

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.

Once diagnosed, health can improve dramatically as you can see from the photos of Anastasia.  However, adrenal insufficiency is a chronic condition that can pose many challenges.  Although they may look “normal” those with adrenal insufficiency often suffer from symptoms that seem invisible to coworkers, family and friends.

To learn more take a look at NIH’s publication on Managing adrenal insufficiency.

BC Children’s Hospital has several helpful downloads on topics for Cortisol-Dependent Children.

This article covers just about everything. THERAPY OF ENDOCRINE DISEASE: Perspectives on the management of adrenal insufficiency: clinical insights from across Europe.

Anastasia before her diagnosis.

Anastasia 9 after her diagnosis and start of treatment.

What is an Adrenal Crisis?

An adrenal crisis is a life threatening emergency and must be treated aggressively. 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.

Some of the more common symptoms of adrenal crisis are listed below.  Download the signs/symptoms chart to see more.

  • severe vomiting
    store

    Get your Emergency Kit.

  • diarrhea
  • headache/dizziness
  • lethargy/listlessness
  • neurological deficits/confusion
  • stomach/leg pain
  • pale skin/shivering
  • seizures

UCLA Endocrine Surgery has a very good description of crisis with a more comprehensive list of symptoms.

The following is taken from their site, all credit goes to them.

“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.

Symptoms: 

  • Headache
  • Profound weakness
  • Fatigue
  • Slow, sluggish movement
  • Nausea
  • Vomiting
  • Low blood pressure
  • Dehydration
  • High fever
  • Shaking chills
  • Confusion or coma
  • Darkening of the skin
  • Rapid heart rate
  • Joint pain
  • Abdominal pain
  • Unintentional weight loss
  • Rapid respiratory rate (see tachypnea)
  • Unusual and excessive sweating on face and/or palms
  • Skin rash or lesions may be present
  • Flank pain
  • Loss of appetite

Signs and tests: 

  • An ACTH (cortrosyn) stimulation test shows low cortisol.
  • The baseline cortisol level is low.
  • Fasting blood sugar may be low.
  • Serum potassium is elevated ( usually primary adrenal insufficiency).
  • Serum sodium is decreased (usually primary adrenal insufficiency).

Treatment:
In adrenal crisis, an intravenous or intramuscular injection of hydrocortisone (an injectable corticosteroid) must be given immediately. Supportive treatment of low blood pressure with intravenous fluids is usually necessary. Hospitalization is required for adequate treatment and monitoring. If infection is the cause of the crisis, antibiotic therapy may be needed.”

Why are People with Adrenal Insufficiency at Risk?

Adrenal insufficiency can be mis- or undiagnosed, putting lives at risk. In addition, emergency medical providers may be unfamiliar with the signs, symptoms, and dangers associated with adrenal crisis, causing delays in life-saving treatment. Our goal is to change that–but we need your help!

What is a Stress Dose?

People with normal adrenal glands produce significantly more cortisol when their body is under physical or emotional stress. Patients with adrenal insufficiency cannot produce extra cortisol and must be given an extra dose of medication during times of extreme physical stress such as fever, vomiting and diarrhea, surgery, and traumatic injuries such as broken bones and concussions. This is called a “STRESS DOSE.”

Depending on the severity of the event an oral stress dose of 2x – 3x more than the regular daily dose is given. In more severe cases an IM injection of Solu-Cortef® or other injectable is given.

Extra hydrocortisone via an IV may needed during surgery. In minor or short surgeries your endocrinologist may prescribe an injection or larger oral dose before the procedure. Stress doses may also be needed during the recovery period. Be sure to consult with your physician before any surgical procedures.

Experts at Children’s of Alabama provide information on Cortisol: what it is and how to help your child when there is a deficiency. Learn all about it in this 12-min video.

Managing adrenal insufficiency.

When is an Oral Stress Dose Needed?

Each individual is different so be sure to ask your physician for specific instructions on when to take an oral stress dose.  Professor Peter Hindmarsh at CAH is US has developed this quick guide to illness.

The following symptoms are an incomplete list of symptoms that may indicate that an oral stress dose is need:

  • nausea and/or vomiting
  • diarrhea
  • an injury causing a moderate degree of pain (this is different for each individual)
  • headache
  • lethargy (individual may also present with dark rings under the eyes and/or red cheeks)
  • a general feeling of being unwell
  • changes in emotional behavior
  • during times of emotional stress**

**Although there is no consensus among endocrinologists on the affects of emotional stress on those with adrenal insufficiency some do believe it’s a factor.  Some members have been advised to take extra medication during times of severe emotional stress. For this reason, we’ve added it to our list. We hope future research will help to clarify this issue. One study we found from Germany indicates that 33% of adrenal crisis were caused by emotional stress

When is an Emergency Injection Needed?

Each individual is different so be sure to ask your physician for specific instructions on when to take an emergency injection.  Some common indications are:

  • severe vomiting
  • diarrhea
  • headache/dizziness
  • lethargy/listlessness
  • neurological deficits/confusion
  • stomach/leg pain
  • pale skin/shivering
  • seizures

See UCLA Endocrine Surgery or What is an Adrenal Crisis? for more information.

WARNING! Not all personnel in the emergency medical services industry or emergency room departments have been trained in adrenal insufficiency nor do they have protocols that allow them to administer the injection. Do not wait! If you or your loved one is experiencing signs of an adrenal crisis, inject per your endocrinologists prior instructions, and call 911.

Professor Peter Hindmarsh at CAH is US has developed this quick guide to illness.

**Although there is no consensus among endocrinologists on the affects of emotional stress on those with adrenal insufficiency some do believe it’s a factor.  One study we found from Germany indicates that 33% of adrenal crisis were caused by emotional stress

How Do I Give an Injection?

Injection Instructions Video:  This youtube video by the Succeed Clinic in OK walks you through the steps to inject.  Although the video was made for those with Congenital Adrenal Hyperplasia the instructions on how to inject are the same for anyone.  Be sure to ask your physician about the circumstances in which you would need an injection.

Experts at Children’s of Alabama provide information on Cortisol: what it is and how to help your child when there is a deficiency. Learn all about it in this 12-min video. Injection instructions come towards the end.

Written Injection Instructions :  These instructions are from Sydney Children’s Hospital other instructions can be found with google searches.

Is Adrenal Fatigue the Same as Adrenal Insufficiency?

No, adrenal fatigue and adrenal insufficiency are not the same. Adrenal Fatigue is not a recognized medical diagnosis but rather a term used to describe a cluster of symptoms. Adrenal Insufficiency is a life threatening medical condition requiring prompt treatment with the use of steroids.

The symptoms of adrenal fatigue are real and cause suffering.  Those symptoms could be signs of a serious condition so trying to “heal yourself” without a medical professional could be life threatening. AIU urges you to seek help from a physician!

Without proper testing: adrenal diseases including adrenal insufficiency, pituitary problems, thyroid illness and/or other conditions could be mis-labeled as adrenal fatigue. Depression, fibromyalgia, sleep apnea, and chronic fatigue syndrome could also lead to symptoms associated with the term adrenal fatigue.

The Hormone Health Network has a particularly concerning quote from this article. Adrenal Fatigue Myth vs Fact  “If you take adrenal hormone supplements when you don’t need them, your adrenal glands may stop working and become unable to make the hormones you need when you are under physical stress. When these supplements are stopped, a person’s adrenal glands can remain “asleep” for months. People with this problem may be in danger of developing a life-threatening condition called adrenal crisis.”

See Question: What are the symptoms of Adrenal Insufficiency? for more information.

The National Endocrine and Metabolic Diseases Information Service (NEMDIS) has excellent resources about Adrenal Insufficiency, tests that will diagnosis it, and additional information about treatment.

Backpack Health App for AI

An app to help improve daily self-management of your health information, while contributing to research, and improving access to AIU support. Join the AIU Backpack Health Group now at: join.backpackhealth.com/aiu

Sponsors

Recent News and Events

  • AIU News and Upcoming Events
    AIU News and Upcoming Events
    August 23, 2018 by
    AIU News NEW: AIU’s monthly Fundraising Contest. Each month the person raising the most funds for AIU will receive a $30 gift certificate to our online store. Everyone who has any type of fundraiser will be entered into a drawing for a $20 gift certificate. We will...
    Read more
  • COMEBACK KID
    COMEBACK KID
    August 16, 2018 by
    Adrenal Insufficiency United is honored to work with Karista Rose Harris, the newly crowned, Ultimate Elite International Ambassador for 2018/2019! Karista Rose was awarded her new crown after a successful year as the reigning Mrs. Ultimate Elite Arizona. Her platform, “Defying the odds,” defines her personal journey...
    Read more
"150" post_thumb_height="150"]

Contact Us

Facebook
Instagram
LinkedIn
Pinterest
Twitter
YouTube
Patreon

Join our Email List

We respect your privacy and will never share your information.