Support for Those Living with Adrenal Insufficiency

Understanding Adrenal Insufficiency

Adrenal insufficiency is not a lack of adrenaline, but a lack of cortisol, a hormone essential to life. Hydrocortisone  is the treatment for an adrenal crisis, not epinephrine.

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.

Patients with primary adrenal insufficiency may also have an aldosterone deficiency. Both are vital to life. Endocrineweb’s “An Overview of the Adrenal Glands” has a very helpful overview explaining the hormones produced in the adrenal gland.

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.

Important to note is that the adrenal cortex produces cortisol and aldosterone which are both vital to life. The adrenal medulla produces adrenaline, which while important, is not vital to life.

In short the lack of cortisol and/or aldosterone can kill, lack of adrenaline does not.

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.

Read some of the most frequently asked questions here.
Learn more about testing for adrenal insufficiency here.

types of AI Download the photo below as a pdf.



Below you’ll find so basic need to know information about adrenal insufficiency. For more in depth study please refer to our resource library.

 

Types of steroids used to treat adrenal insufficiency.

Hydrocortisone is the shortest acting glucocorticoid. It typically lasts between 4 and 6 hours in the body. However, people with absorption issues or fast metabolism may use HC at a faster rate. An average hydrocortisone dose schedule would be three or four times per day.

Prednisone offers more even coverage than hydrocortisone for many people. It typically lasts 8 to 12 hours in the body. Common dose schedules for Prednisone would be two or three times per day. Patients with a fast metabolism or absorption issues may need to take doses more frequently.

Dexamethasone is not commonly used for daily replacement. It can linger in the body for up to 36 hours and contribute to over-replacement side effects. Dexamethasone also has a flat profile, without the necessary peak for morning activity. However, some patients do find relief from repetitive low cortisol symptoms by taking dexamethasone as a base along with other glucocorticoids.

Fludrocortisone is a mineralocorticoid used to help regulate sodium and blood pressure. Patients with chronic low blood pressure should ask their physician if fludrocortisone treatment is appropriate for them.

Patients with absorption issues or a fast metabolism may experience a “roller coaster” effect from steroids, alternating between high and low symptoms. Splitting medication into smaller, more frequent doses, switching to a longer acting glucocorticoid, or trying a combination of short and long acting may help eliminate this effect.

Alternatively, a patient may need to try a combination of oral medication and subcutaneous injections, or pump therapy.  These types of delivery can benefit patients who have gastrointestinal or metabolizing issues.

Subcutaneous injection

Patients with gastrointestinal issues may experience improved quality of life with subcutaneous injection of hydrocortisone. This method avoids the gut and cortisol is absorbed through the fat. Insulin needles are ideal for this application. Patients using this delivery method inject between three and six times per day. The Solu-cortef Act-o-vial is used for subcutaneous injection or pump therapy.  Partial vials are stored in the refrigerator.

Pump therapy

Current research is lacking for this type of glucocorticoid delivery. However, patients who have exhausted other forms of treatment find steroid infusion with the pump improves their quality of life while reducing overall cortisol needs. For more information on pump therapy please consult the CAH is us website.

Circadian rhythm.

Normal cortisol production follows a circadian rhythm, with higher levels in the early (3 or 4 am) morning and lower ones in the evening. Mimicking this pattern can help improve quality of life for those that cannot find relief with standard dosing. More information about circadian dosing can be found on the CAH is us website. Even if your form of AI is not caused by CAH many of the resources are relevant to most with AI.

Stress dosing and updosing.

Stress dosing refers to guideline recommended increases in steroid coverage for illness or surgery. The National Institutes of Health has this “sick day rules” guide you may find helpful.

Professor Peter Hindmarsh and Kathy Geertmsa of cahisus.co.uk have created a website full of resources including this “injuries and illness” leaflet.  The “quick guide to illness protocol” would be a helpful document to download.

Updosing is the term used for small increases in steroid coverage for physical or emotional stress. This is based on individual needs and varies widely. When to increase should be discussed with your doctor.

Cortisol and blood sugar.

Cortisol is necessary for proper metabolism. Blood glucose levels can fluctuate with cortisol levels. Symptoms of hypoglycemia can be similar to low cortisol symptoms. An inexpensive blood glucose monitoring starter kit may be helpful in distinguishing between the two conditions. Eating frequent small meals can help maintain steady blood sugar. A small, high protein snack before bed can help avoid hypoglycemia overnight.

Although there can be a connection between blood sugar level and cortisol levels, there is no significant direct correlation. If you find continuous blood sugar abnormalities, this may be due to undiagnosed Diabetes and should be discussed with your PCP and Endocrinologist.

Overnight steroid coverage.

Normal cortisol levels are lowest around midnight and begin to rise again around 2am. Hitting the correct trough in cortisol levels without dropping too low is important for rapid eye movement, REM sleep patterns. Each person is different. Some patients are fine with a small dose in the evening. Some need to wake up and take a dose in the middle of the night. Tracking symptoms can help you determine what works for you. Many patients find that taking their morning dose an hour or two before rising allows time for the steroid to begin working.

Patients who experience no improvement after adjusting steroid dose amounts and times may need to consider other contributing factors. These include medication interactions, other medical conditions, and physical deconditioning due to chronic illness. Gentle increases in fitness can help improve strength, balance, and overall well-being with time. There are many fitness programs and specific diet programs available for people with limited mobility. Discuss your concerns with your doctor before starting any fitness or diet program.

Please take precautions when starting a new “fad” diet or exercise program. The results of each differ between people, and should be closely monitored with your doctor.


Information for this page was compiled from several sources including:  NIH, CAH is us, JCEM and UpToDate

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Big Shoutout to the Smith family for their support in Adrenal Insufficiency United

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