Support for Those Living with Adrenal Insufficiency

Newly Diagnosed

Getting Diagnosed with Adrenal Insufficiency is scary, but you're never alone with AIUReceiving the diagnosis that you or a loved one has adrenal insufficiency can be overwhelming. Trying to learn about AI, absorb information from doctors, and cope with feelings of isolation from family and friends can leave you scared and lonely.  We want you to know that you are not alone. We are a group of affected adults and parents of those with AI. In 2011 our founders recognized the need for support for the AI community, and AIU was created. We’ve all stood where you are today and want to help.

On our website you’ll find information about understanding adrenal insufficiency, stories from people with AI, free materials to print, online support groups, and more. This page has tips to get you started.

There is no need to feel alone in this journey you have just begun. We all have so much to learn and give to each other. Although we are sorry for the circumstance that brought you to this place we want to welcome you to our AI Family.  We hope that you will join some of our support groups.  Our main support groups is Adrenal Insufficiency Support  Contact us on our Facebook page or email us at contact@aiunited.org.

Be sure to visit our Emergency Instructions page to learn what to do and how to prepare yourself in case of an adrenal crisis.

This youtube video will help learn how to give the injection.

Visit our research library to learn more about adrenal insufficiency.

Visit BackPack Health and download their app. AIU has partnered with them to develop specialized information for adrenal insufficiency users.

Things you need to know as newly diagnosed, or a loved one of an AI patient
  1. Always report any changes in your health to your doctor.
  2. Inform your doctor if you are not doing well on your medication. They won’t be able to help you if they are unaware you are struggling.
  3. Learn to recognize YOUR low cortisol symptoms. An adrenal crisis is an exacerbation of these symptoms. Common symptoms of low cortisol are: fatigue, muscle and joint aches & pains, nausea, light headedness, heavy feeling in the body, diarrhea, low blood pressure, tachycardia. Common symptoms of crisis: extreme weakness, vomiting, severe pain – abdominal, leg, flank, worsening tachycardia, low or high BP, dizziness, cognitive impairment, chills/sweating, shock.
  4. Learn about sick day dosing. In times of stress e.g. illness, injury, surgery, extreme emotional stress, our bodies may need extra medication, in addition to our normal replacement dose, in order to avoid adrenal crisis. In time you will become aware of YOUR personal signs of low cortisol and impending crisis. You will also get to know what level of up-dosing is needed in times of stress. Each of us respond differently to what extra dosing is needed to keep us out of trouble. The guidelines we have on this are average recommendations, but as individuals this may differ. It is reasonable to say that optimal stress dosing is achieved through trial and experience. See: Stress Dosing to Avoid Crisis
  5. In hot weather you may sweat excessively. It is important to replace your fluids and electrolytes adequately to avoid dehydration, which can contribute to an adrenal crisis. Examples of electrolyte drinks include Hydrolyte or Gatorade. Stay cool by seeking air conditioning, shade, and cold drinks. Discuss your particular electrolyte needs with your doctor to supplement appropriately.
  6. Ensure that you pace yourself and get the rest your body needs, and maintain a healthy diet.
  7. Approach exercise within your ability and limitations. Ask your doctor for recommendations on dosing for exercise.
  8. Ensure that your doctor has prescribed you with Solu Cortef 100mg Act-o-Vial for emergency injection. You will need to obtain syringes and needles suitable for IM injection. Our emergency page has more information on the emergency injection kit and being prepared for an emergency.
  9. Obtain an emergency identification bracelet. Suggested engraving, “Adrenal Insufficient, Steroid Dependent.” Also list any other important health conditions e.g. diabetes or asthma. If there is room on your bracelet consider including “emergency injection in purse, OR on person.” Also ask your treating physician to supply you with a letter for emergency personnel that describes YOUR condition and medications. Secondary AI patients often have normal electrolytes, and this can confuse doctors in the ED. You can find letters to print on our emergency page.
  10. Watch instructional videos on how and when to inject the Solu Cortef emergency injection. It is recommended to use your emergency injection at the first sign of crisis to avoid spiraling into a critical state. Professor Wass explains in this video, having the injection won’t harm you and it may well save your life. Link
  11. Always take your prescribed medication on time as scheduled by your doctor. Never miss a dose. If you do forget your dose, take it when you remember and continue with the rest of your doses. It can be helpful to set alarms on your mobile phone to remind you of your doses, and to set a 5-minute snooze alarm in case you were distracted at the time of the first alarm.
  12. One of your best tools when living with a rare disease is self-education. You will find that some medical practitioners have little knowledge of adrenal insufficiency. By knowing about AI, you can be alert to what is needed to properly treat your disease. It is also important to ask your endocrinologist for a ‘travel letter’ that explains your condition with instructions that may be unique to you as a patient, particularly if you have any other medical conditions in addition to AI.
  13. Always keep an extra stash of your steroids in your handbag or pocket. You never know when you may need it, in particular if you end up in hospital. Do not hand over your extra steroids, as hospitals can be very busy places and nurses can get delayed in handing out medications on time. You could be refused stress dosing when you know you need it. Not every medical professional will understand adrenal insufficiency. If you find yourself having to resort to self-medicating in hospital, make sure you inform the medical staff what you have done and why, as they need to know exactly the medication you have taken.
In an emergency  If experiencing the symptoms of adrenal crisis:
  • Inject your Solu Cortef 100mg Act-o-vial (or other prescribed emergency injection)
  • Call your emergency services: e.g. 911, 000, etc. Tell them that you are experiencing an adrenal crisis and require a paramedic.
  • Unlock your front door in case you fall unconscious or are unable to open the door for paramedics.

 

Helpful links

Circadian Rhythm brochure from Prof. Peter Hindmarsh and Kathy Geertsma of cahisus, London:

Surgical Guidelines UK, Addison’s Disease Self-help Group, ADSHG:

Surgical guidelines U.S. National Adrenal Diseases Foundation, NADF:

4am Dosing for Illness:

AIU/AIC Steroid Tapering Guide

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.

 

To get started, ensure you have your Solu-Cortef and Act-o-Vial Prescription

Solu-Cortef® in the act-o-vial

 


Make sure you’ve been instructed on stress dosing and how to handle emergencies.
Ask for training on how to inject Solu-Cortef® and get a prescription filled for it. It’s best to have more than one vial on hand. Keep one at work, at school, with each parent, etc.                                                                

Purchase an Adrenal Insufficiency Emergency Kit from our store

Get your Emergency Kit.

 

 

 

 

 

 

 

Thanks to our page sponsors:

The Drake/Norsworthy Family are the Newly Diagnosed Page Sponsor

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