Hurricane Ian Updates

Hurricane Ian updates from Adrenal Alternatives Foundation.

Message from AAF Founder, Winslow Dixon.

Due to the devastation of hurricane Ian, we are closed until further notice.

Currently our pumps for purpose and care package programs are suspended, however our adrenal store is still in operation.

For more information, please visit our website adrenalalternatives.com or send an e-mail to adrenalalternatives@gmail.com

To donate:

Text the word GIVE to 833-807-5813 Or donate at paypal.com/paypalme/adrenalalternatives

You can also support us by:

Adrenal Insufficiency 101: A Patient’s Guide to Managing Adrenal Insufficiency

Cortisol Pumping Guidebook

For more updates, sign up for our email list.

Adrenal Alternatives is a nonprofit, patient advocacy organization dedicated to advocacy & access for all cortisol care.

Addy invites you to Chronically Creative Club!

We are proud to announce Adrenal Alternatives Foundation has partnered with the organization Advocates for Disability Inclusion in Literature to expand our Chronically Creative Club program.

If you are a crafter, writer, musician, dancer, artist, singer and theatre performer with a chronic illness or disability we want to invite you to join us on zoom for Chronically Creative Club.

This is not a support group; it is a club to showcase creative abilities and our true selves outside of our medical conditions. This Club is a safe space for people who battle with health conditions to express who they are without stigma.

Meetings are on the 3rd Thursday of each month at 6:30pm Eastern Standard Time.

Meeting dates for 2022 are September 15, October 13, November 17, December 15.

Meetings will be broadcast LIVE on zoom, please pre-register at the link below to receive the zoom meeting details.

https://forms.gle/VYn9qSn1oNyA6FeH6

More details can also be found on our website:

This content has been brought to you by the Adrenal Alternatives Foundation, a nonprofit, patient advocacy organization dedicated to advocacy & access for all cortisol care.

If you’d like to support us, here are a few ways to get involved:

Sign up for our email list. https://gmail.us20.list-manage.com/subscribe?u=5e6950f5fe9efe797e1163544&id=8d9710ae9e&fbclid=IwAR2BnCzWvMdQ1G4_htKgHXV7ATrPBbqBgKg_MV8q2RBU_c4JOdmrp5cQmuo

Listen to our Podcast on Spotify, iTunes & Anchor https://anchor.fm/adrenalalternatives

Attend an online or in person event. https://www.facebook.com/hopeforadrenaldisease/events

Purchase Adrenal Awareness Merch from our online store. https://adrenalalternatives.myshopify.com/

Shop using AmazonSmile. When you shop on Amazon, use AmazonSmile and choose Adrenal Alternatives as your charity of choice to donate at no cost to you! https://smile.amazon.com/ch/83-3629121

Like, share and comment on our social media.

Twitter: https://twitter.com/AdrenalAdvocate

Instagram: https://www.instagram.com/adrenalalternativesfoundation

Podcast: https://anchor.fm/adrenalalternatives

FaceBook: https://www.facebook.com/hopeforadrenaldisease

Youtube: https://www.youtube.com/channel/UCxeZtgNgZpksinD2tV8_IlQ

Purchase, Share & Review our Books on Amazon:

Adrenal Insufficiency 101: A Patient’s Guide to Managing Adrenal Insufficiency

Cortisol Pumping Guidebook

Donate:

Text the word GIVE to 833-807-5813 Or donate at http://www.paypal.com/paypalme/adrenalalternatives

You can also donate your old insulin pumps and supplies. (Broken pumps can still be used for research)

Adrenal Alternatives Foundation, Ein: 83-3629121. 501c3 Non-Profit Patient advocacy organization. All donations tax deductible.

AAF is partnering with Advocates for Disability Inclusion in Literature!

We are proud to announce Adrenal Alternatives Foundation has partnered with the organization Advocates for Disability Inclusion in Literature to expand our Chronically Creative Club program!

Chronically Creative Club is a safe space for people who battle with health conditions to express who they are without the stigma of ableism. This is not a support group; it is a club to showcase creative abilities and our true selves outside of our medical conditions. All forms of creativity such as: crafters, writers, musicians, dancers, artists and theatre performers with a chronic illness or disability are welcome. This program is an extension of our All Abilities Included campaign.


Time: Third Thursday of each month.  6:30pm EST

(2022 Meeting Dates: September 15, October 13, November 17, December 15)

Place: Meetings will be broadcast LIVE on zoom, please pre-register at the link below to receive the zoom meeting details.

https://forms.gle/VYn9qSn1oNyA6FeH6


When you become a member of the Chronically Creative Club, you will join a network of incredibly inspiring artists, musicians, writers, dancers and theatre performers who are overcoming disabilities every single day.

This club was created to remind us that despite the difficulties we may face, we are still valid and can create beauty in the world. We are all born with different gifts and talents, and it is important we share them!  

In an effort to make our club accessible to everyone, we do not charge a membership fee, however we do accept donations to cover costs such as payment for guest speakers, sponsored craft supplies for those who are financially unable to participate in the in-person meeting activity and rental fees for our in-person classes we provide through this program.

This club was created to support disabled creators in every way possible, so all  donations are appreciated and can be done safely and securely by texting the word GIVE to 833-807-5813  Or you can donate at www.paypal.com/paypalme/adrenalalternatives.  

We welcome all chronically creative folks to share your incredible talents with us! If you would like to be a featured guest speaker, please contact us at adrenalalternatives@gmail.com

“You can’t use up creativity. The more you use, the more you have.”

Maya Angelou

We look forward to seeing you on zoom!

This information has been brought to you by the Adrenal Alternatives Foundation and is not to be used to provide medical care. Adrenal Alternatives is a nonprofit, patient advocacy organization dedicated to advocacy & access for all cortisol care.

If you’d like to support us, here are a few ways to get involved:

  1. Sign up for our email list. https://gmail.us20.list-manage.com/subscribe?u=5e6950f5fe9efe797e1163544&id=8d9710ae9e&fbclid=IwAR2BnCzWvMdQ1G4_htKgHXV7ATrPBbqBgKg_MV8q2RBU_c4JOdmrp5cQmuo
  2. Listen to our Podcast on Spotify, iTunes & Anchor https://anchor.fm/adrenalalternatives
  3. Attend an online or in person event. https://www.facebook.com/hopeforadrenaldisease/events
  4. Purchase Adrenal Awareness Merch from our online store. https://adrenalalternatives.myshopify.com/
  5. Shop using AmazonSmile. When you shop on Amazon, use AmazonSmile and choose Adrenal Alternatives as your charity of choice to donate at no cost to you! https://smile.amazon.com/ch/83-3629121
  6. Like, share and comment on our social media.

Twitter: https://twitter.com/AdrenalAdvocate
Instagram: https://www.instagram.com/adrenalalternativesfoundation
Podcast: https://anchor.fm/adrenalalternatives
FaceBook: https://www.facebook.com/hopeforadrenaldisease
Youtube: https://www.youtube.com/channel/UCxeZtgNgZpksinD2tV8_IlQ

  1. Purchase, Share & Review our Books on Amazon:
    Adrenal Insufficiency 101: A Patient’s Guide to Managing Adrenal Insufficiency
    https://www.amazon.com/Adrenal-Insufficiency-101-Patients-Managing/dp/1734907304
    Cortisol Pumping Guidebook
    https://www.amazon.com/dp/B08XWQLMBS?ref_=k4w_oembed_UAxN1wqheoeDeg&tag=kpembed-20&linkCode=kpd
  2. Donate:
    Text the word GIVE to 833-807-5813 Or donate at http://www.paypal.com/paypalme/adrenalalternatives

You can also donate your old insulin pumps and supplies. (Broken pumps can still be used for research)

Adrenal Alternatives Foundation, Ein: 83-3629121. 501c3 Non-Profit Patient advocacy organization. All donations tax deductible.

How to make an Adrenal Crisis Care kit

In the event of an adrenal crisis, a cortisol replacement injection must be administered. Do not ever hesitate to inject an adrenal insufficient patient with cortisol replacement medication if they are experiencing an adrenal crisis.

Items needed in an Adrenal Crisis Care Kit:

  • • Cortisol Replacement Medication Vial
  • • Alcohol Prep Wipes
  • • Intramuscular Syringes (It is recommended to have at least 2 just in case)
  • Instructions on how to administer cortisol replacement via injection. AAF’s QR code can be scanned to immediately access dosing instructions. (You can download this QR code at the link https://drive.google.com/file/d/1DfkwOgEMEqcyTrvJU_t5IFF0eJeOKA33/view

How to Administer Solu-Cortef Acto-Vial Emergency Cortisol Injection

  1. Remove the two-chamber vial containing Solu-Cortef Act-O-Vial from the packaging.
    a. Press the colored cap down to mix solvent with the powder solution of hydrocortisone.
    b. Mix the contents until the powder is dissolved. The powder solution of hydrocortisone is completely dissolved once the solution is clear
  2. Remove the protective disc from the center of the plastic cap of the vial.
  3. Wipe top of vial with alcohol swab to sterilize it before inserting syringe into bottle.
  4. Insert the syringe into the vial. Turn the vial upside down and draw the solution into the syringe.
  5. Hold the syringe like a dart and push the needle for 2/3 of its length into the chosen injection site at a right angle to the skin.
  6. Give the injection into intramuscular tissue such as the buttock or in the upper thigh muscle.

What if my doctor refuses to prescribe an emergency cortisol injection?


Prescribing a cortisol replacement emergency injection is a documented, standard treatment protocol for patients with any form of cortisol deficiency. If your doctor refuses to prescribe an emergency injection, you can provide your physician with the informational links posted below regarding the importance of providing an emergency cortisol replacement injection to treat an acute adrenal crisis.


If they continue to refuse to provide you with this life saving prescription, they can be reported to the medical board. Ignorance on care protocols for rare disease treatments is common, which is why doctors must be willing to educate themselves with documented research. However, negligence and refusal to provide standard care is unacceptable and should be reported to the medical board in order to prevent harm from occurring.

Having an emergency adrenal crisis care kit is vital to the management of adrenal insufficiency. Please do not continue receiving care under a physician who is unwilling to properly manage cortisol deficiency.

Supporting links:
https://pubmed.ncbi.nlm.nih.gov/29763143/#:~:text=Adrenal%20crisis%2C%20also%20termed%20acute,soon%20upon%20arrival%20in%20hospital

https://www.pituitary.org.uk/information/publications/adrenal-insufficiency/letter-to-gp-digital-template/


More information on managing adrenal disease can be found in our book, Adrenal Insufficiency 101: A Patient’s Guide to Managing Adrenal Insufficiency
Available at the link:
https://www.amazon.com/Adrenal-Insufficiency-101-Patients-Managing/dp/1734907304

This information has been brought to you by the Adrenal Alternatives Foundation and is not to be used to provide medical care. Adrenal Alternatives is a nonprofit, patient advocacy organization dedicated to advocacy & access for all cortisol care.

If you’d like to support us, here are a few ways to get involved:

  1. Sign up for our email list. https://gmail.us20.list-manage.com/subscribe?u=5e6950f5fe9efe797e1163544&id=8d9710ae9e&fbclid=IwAR2BnCzWvMdQ1G4_htKgHXV7ATrPBbqBgKg_MV8q2RBU_c4JOdmrp5cQmuo
  2. Listen to our Podcast on Spotify, iTunes & Anchor https://anchor.fm/adrenalalternatives
  3. Attend an online or in person event. https://www.facebook.com/hopeforadrenaldisease/events
  4. Purchase Adrenal Awareness Merch from our online store. https://adrenalalternatives.myshopify.com/
  5. Shop using AmazonSmile. When you shop on Amazon, use AmazonSmile and choose Adrenal Alternatives as your charity of choice to donate at no cost to you! https://smile.amazon.com/ch/83-3629121
  6. Like, share and comment on our social media.

Twitter: https://twitter.com/AdrenalAdvocate
Instagram: https://www.instagram.com/adrenalalternativesfoundation
Podcast: https://anchor.fm/adrenalalternatives
FaceBook: https://www.facebook.com/hopeforadrenaldisease
Youtube: https://www.youtube.com/channel/UCxeZtgNgZpksinD2tV8_IlQ

  1. Purchase, Share & Review our Books on Amazon:
    Adrenal Insufficiency 101: A Patient’s Guide to Managing Adrenal Insufficiency
    https://www.amazon.com/Adrenal-Insufficiency-101-Patients-Managing/dp/1734907304
    Cortisol Pumping Guidebook
    https://www.amazon.com/dp/B08XWQLMBS?ref_=k4w_oembed_UAxN1wqheoeDeg&tag=kpembed-20&linkCode=kpd
  2. Donate:
    Text the word GIVE to 833-807-5813 Or donate at http://www.paypal.com/paypalme/adrenalalternatives

You can also donate your old insulin pumps and supplies. (Broken pumps can still be used for research)

Adrenal Alternatives Foundation, Ein: 83-3629121. 501c3 Non-Profit Patient advocacy organization. All donations tax deductible.

Cortisol Replacement Options for Adrenal Insufficiency

Cortisol Replacement for managing Adrenal Insufficiency

*DISCLAIMER- This information has been brought to you by the Adrenal Alternatives Foundation and is not to be used to provide medical care or advice.*

With all steroid replacement options, circadian rhythm dosing should be the standard protocol for adrenal insufficiency care.  Cortisol medications need to be administered not only at the right doses, but also at the right times according to the way the body would naturally produce cortisol with working adrenals. Cortisol is produced at the highest amount in the morning to induce the cortisol awakening response, then cortisol levels decrease in the evening time to induce sleep and allow for the secretion of melatonin.

Percentages of Cortisol Production

6:00am to noon 35%

Noon to 6:00pm 20%

6:00pm to Midnight 15%

Midnight to 6:00am 30%

(Source: Professor Hindmarsh. CAHISUS https://www.cahisus.co.uk/pdf/CIRCADIAN%20RHYTHM%20DOSING.pdf )

Cortisol Replacement Medications

Standard Oral Steroid Tablets

  • Hydrocortisone
  • Prednisone
  • Cortisone Acetate
  • Dexamethasone

Time Released Steroid Medications

Liquid Steroid Options

  • Prednisolone

Pediatric Options

Cortisol MDI– Multiple daily injections of cortisol (solucortef) into subcutaneous tissue.

Physicians calculate a baseline dose schedule based on circadian rhythm percentages, the patient’s cortisol clearance, activity level and health comorbidities.

Injection sites must cleaned with skin prep such as an alcohol wipe before insertion of needle into areas with subcutaneous tissue.

Injection sites must also be rotated to reduce irritation and infection risk

Supplies needed:

·Solu-Cortef 100mg vials

·Saline or Bacteriostatic Water

·Skin Prep such as alcohol swabs

·3ML Syringes to reconstitute Solu-Cortef ·Syringes or “insulin” needles for injections

Dosing:

1 to 1 ratio = 100mg of Solucortef per 1 ML of saline. 1 unit of this concentration creates a 1:1 ratio. 1 mg of cortisol is equal to 1 unit.  (1 unit- 1mg)

Actovials of a 2:1 ratio can also be used but are not the preferred treatment due to the increased dilution, which requires more volume to enter the subcutaneous tissue. Additionally, some patients have expressed increased irritation due to the formulation in the Actovials liquid. With this formulation 2units =2mg.

Cortisol Pumping Method

The Cortisol Pumping Method is the use of solu-cortef used in an infusion pump programmed to disperse cortisol according to the natural circadian rhythm by programming rates of delivery into the pump.

This method bypasses the gastric passages and is able to deliver cortisol 24/7, which is a life-saving intervention for patients with absorption issues and hypermetabolizers of cortisol.

The cortisol pumping method is not a cure for adrenal insufficiency and is not a treatment that is right for everyone. If a patient well managed on steroid replacement pills, the pump method may not be necessary to achieve quality of life.

FDA approval is not necessary for cortisol pumping and is considered “off label use.” Infusion pumps have long been approved for the administration of medications.

According to the Department of Health and Human Services Centers for Medicare and Medicaid Services Medicare Coverage Issues Manual Section 60-14 A: “6. Other uses of external infusion pumps are covered if the contractor’s medical staff verifies the appropriateness of the therapy and of the prescribed pump for the individual patient.”

In the USA, the Right to Try Act decreed that patients have legal rights to access life-saving treatments which are not yet FDA approved. 

The pump is not a replacement for acute adrenal crisis care. Adrenal patients should always carry an emergency injection and administer it immediately in the event of an adrenal crisis.

The decision of whether your insurance will cover a pump and supplies is dependent on your specific coverage plan and insurance company. If you are denied, you can always file an appeal.

Adrenal Alternative’s Pumps for Purpose program helps adrenal patients receive Medtronic pumps and supplies through our Pumps for Purpose Program with CR3.

Pumps for Purpose Program Applications

(Both forms must be completed to be considered as a program recipient)

Cortisol Pumping Candidates

  • Patients who have failed to stabilize on traditional oral steroid tablet options.
  • Patients with absorption issues such as, but not limited to: Crohn’s disease or gastroparesis.
  • Patients who are hypermetabolizers of cortisol.

For more information, please visit the following resources:

Download the Cortisol Care Options Handout

Adrenal Alternatives Foundation Free Resources Library

Adrenal Insufficiency 101 Guide Book

Cortisol Pump 101 Guide Book

Congenital Adrenal Hyperplasia: A Comprehensive Guide by Peter C. Hindmarsh

This information has been brought to you by the Adrenal Alternatives Foundation and is not to be used to provide medical care. Adrenal Alternatives is a nonprofit, patient advocacy organization dedicated to advocacy & access for all cortisol care.

If you’d like to support us, here are a few ways to get involved:

  • Sign up for our email list.
Sign up securely for AAF’s email list
  • Shop using AmazonSmile.  When you shop on Amazon, use AmazonSmile and choose Adrenal Alternatives as your charity of choice to donate at no cost to you! https://smile.amazon.com/ch/83-3629121

Like, share and comment on our social media.

Twitter: https://twitter.com/AdrenalAdvocate

Instagram: https://www.instagram.com/adrenalalternativesfoundation

Podcast: https://anchor.fm/adrenalalternatives

FB: https://www.facebook.com/hopeforadrenaldisease

Youtube: https://www.youtube.com/channel/UCxeZtgNgZpksinD2tV8_IlQ

  • Purchase, Share & Review our Books on Amazon:

Adrenal Insufficiency 101: A Patient’s Guide to Managing Adrenal Insufficiency

Cortisol Pumping Guidebook

  • Donate:

Text the word GIVE to 833-807-5813 Or donate at

http://www.paypal.com/paypalme/adrenalalternatives

You can also donate your old insulin pumps and supplies. (Broken pumps can still be used for research)

Adrenal Alternatives Foundation, Ein: 83-3629121.   501c3 Non-Profit Patient advocacy organization. All donations tax deductible.