National Adrenal Diseases Foundation

Information for Patients

Addison's patients must know how to do the following;

  1. Medication and Life Style The difference in living an almost normal life and being an invalid is understanding your illness and taking responsibility for daily management of medication in cooperation with your physician.
    1. NADF list of member recommended physicians: Members often complain of difficulty finding a physician with experience in diagnosing and treating patients with Adrenal deficiency. This list provides a list by state of physicians that members have had successful experiences with.
    2. Addison's Disease Owner's Manual from English Self Help Group: This is one of the most complete manuals for the Addisonian available.
    3. NADFHandouts: Various handouts recommended by NADF.
    4. NIH Patient information material.
    5. Usual Adrenal Hormone Replacement Protocols NADF: This is a good guideline for basic non stress hormone replacement.
    6. What kind of lifestyle can I anticipate with Addison's Disease?
    7. Overview on Managing with Addison's Disease: England Self Support Group two page publication
    8. Special guidance for athletes with Addison's disease.
    9. Diet Considerations.
  2. Understand Crisis and how to control it. Your stress level will change from day to day. Your physician cannot predict when you will be stressed, the type of stress or your response to the stress. You must take personal responsibility for this in cooperation with your caregiver.
    1. "What to do in an emergency": Definition of crisis, causes, symptoms and how to give emergency injections.
    2. Illness stress dose adjustment.
    3. Surgical and Dental dose adjustment
    4. Emotional stress. dose adjustment.
    5. NIH instructions on giving stress shot
    6. NADF information on Addison's Crisis Injection Kit be sure to have one when you are not near ER
    7. Support Group England Information on Crisis Situation. some terms may be different but concepts are the same.
  3. Understanding the circadian cycle for taking medication
    1. Replication of cortisol circadian rhythm: new advances in hydrocortisone replacement therapy This NIH publication explains the links between cortisol and the human circadian cycle. It is very important since the time when the steroid is administered determines sleep patterns, how the person feels, and how quickly they recover.

      In the case of most illnesses or diseases, medicine is administered to keep a constant titer (concentration level) in the body such as one pill every 6 hours. Since the adrenal gland releases hormones to prepare for anticipated stresses, it releases the highest level of hormones early in the morning to prepare for starting the day. NCBI Article: As the day progresses, hormone levels decrease so the body can go to sleep without difficulty. This is called a Circadian cycle . Generally the patient take a large dose in the morning with decreasing does throughout the day and none after 6 hour before sleep. If the patient is experiencing surgery or large stress then the dosage is adjusted. NADF guidelines for Normal stress and for guidelines for major surgery or dental work.

    2. How to Identify yourself as an Addisonian so Emergency responders know how to respond. One study suggests eight percent of Addisonians will go to a hospital each year with an adrenal crisis. A British Medical Journal editorial indicates that Fifteen percent of patients will die in Emergency Room when staff do not administer cortisol. You must have identification on you so that you are properly treated.
      1. Medic Alert - get a bracelet or necklace engraved with your disease, physician, etc on it.
      2. Yellow Dot Alert for Car - Pick up yellow dot for rear window and yellow packet to put in your glove box from AAA.
      3. NADF Flyer - this has good information to put in your yellow packet in your glove box.
  4. Remember that Addisonians also get other diseases. It is easy for the Addisonian to be so focused on Adrenal disease that they forget to treat other illnesses such as flu, allergies, pain caused when knees need to be replaced, etc. This is very important so that when such illnesses occur you address the other issue. This maybe one of the most difficult things to learn.
  5. Identify yourself and participate in East Tennessee Adrenal Disease Support Group. We will notify you of meetings, provide you our phone numbers and do everything possible to help each other to learn about our illness.
    1. E-mail Frank Davis, Coordinator or
    2. E-Mail Ross Wyllie, Coordinator