Tuesday, November 17, 2020

Will You Try Amazon Pharmacy?

"Amazon Prime members have access to an additional pharmacy perk called the "prescription savings benefit," which offers a discount of up to 80% on generic medications and up to 40% on brand-name prescriptions." 

😳 🤩 🥳

Amazon Pharmacy also says it will accept "nearly" all insurance plans.

Will you give Amazon Pharmacy a try? We definitely will. I take 20 medications a day, and my husband has at least five. Out of all the things that we spend money on, our medications and their prompt delivery are most important to us.

Mail-in order pharmacies we have dealt with in the past have had very poor service, unnecessary delays, and technology that just wasn't up to snuff. This will not be a problem for Amazon. 

Consumers need someone to bust up current medication pipelines, someone to facilitate the quick delivery of meds , and someone to hopefully lower costs for consumers.

My fingers are crossed that Amazon will fix this. Amazon has always provided superb customer service. Shopping on an intuitive user interface is sooo much easier than dealing with clunky set ups of other retailers, much less CVS and Walgreens. 

We are proud Prime Members since Amazon first shipped diapers and wipes to a very tired Cushie mom back in 2008.  We have been getting groceries delivered through Amazon Fresh long before the pandemic. We love our shipments and savings through the Subscribe and Save program. Our experience with Amazon has always been great. 

I just wish that the company would respond to criticism and clean up their reputation by being nicer to employees (allowing more time for workers to get from one spot in the warehouse to the others, allowing bathroom breaks, allowing worker protections through unionizing, etc). 

I will get back to you with more details as I try Amazon Pharmacy. Tell me about your experience, too. Promise?


[Let's not turn this post into a debate about Amazon. It will stress me out, and I'm on a fixed cortisol dose. You don't want to make me sick with adrenal insufficiency on purpose, do you? I can't help others when I'm sick!! ❤️ ]

CNBC report

Go straight to Amazon Pharmacy

Why Amazon bought Pill Pack and how they turned that into Amazon Pharmacy

Friday, November 13, 2020

COVID Care + AIU SURVEY for Post Op Cushies

Hello dear Cushie friends. 

I hope all y'all are staying safe and hunkering down in Month 8 of the COVID-19 pandemic. We must be so careful. Be sure to check out the the National Adrenal Disease Foundation's COVID survey and one-page handout to guide medical professionals treating us for both COVID and adrenal insufficiency. Please take a moment to print this, place the copy in your emergency kit, and email it to loved ones likely to accompany you to the ER.

I also wanted to share an email I received today. I encourage all post-op Cushing's patients to participate in this survey for Oregon Health Sciences University. While I'm so pleased that a researcher seeks to expand medical knowledge on the disease we pick up on the other side of Cushing's, I want to stress (haha) that we Cushies must try to describe how horrible our care is as we transition from one disease to another. We hear that endocrinologists routinely fail to prepare us properly for AI before surgery, and we continue to struggle post op without proper guidance that every other disease seems to be getting. That is not fair, and we deserve better.

Now it is our turn. Your participation in this survey will amplify the voices of the Cushing's community. Please do not let the opportunity pass you by. I'm going to make the medical establishment pay attention to us, if it is the last thing that I do. I need your help.

Take care and stay safe, friends. ~ Moxie Melissa

P.S. Be sure to follow my Fight Cushing's with Moxie Facebook page and become my FB friend. Send me a pm and introduce yourself. I'll help you all I can and make sure you are in the groups that will help. Be sure you are part of our extensive online community.

Please help us collect valuable data. All answers are de-identified and confidential.

AIU has been contacted by a health professional at the Oregon Health Sciences University (Moxie added link to Cushing's info) in Portland, Oregon. She's asked us to share this and spoke how much more research and knowledge is needed for our community. Here is the link to the survey. This survey is for anyone -- in any country -- affected by AI. If you suffer from any form of adrenal insufficiency, are a relative, or a medical professional working with someone with this disorder, you are invited to participate in this survey.Your COVID exposure or status is only one part and will be towards the end of the survey.

The survey will take about 10 minutes to complete.

Survey Intro:

"People with Addison's disease or Adrenal Insufficiency (AI) are at risk for adrenal crisis in the event of an illness, but little is known regarding the risks associated with COVID-19.
This survey was developed by a collaboration of patient advocacy representatives and endocrine medical professionals. It will take approximately 15 minutes to complete. By combining many responses we hope to understand more about individual risks for the development of adrenal crisis during this pandemic, and to identify treatments that will influence clinical decisions to improve self care in the future."


Take Survey
Copyright © 2020 Adrenal Insufficiency United, All rights reserved.
We're sending this email to those who've signed up on our lists, visited or store or attended past conferences and events.

Our mailing address is:
Adrenal Insufficiency United
PO Box 168
Oregon City, OR 97045

Tuesday, October 27, 2020

COVID-19 and AI Patients

COVID-19 Information for Adults & Children with Adrenal Insufficiency

🆘Give to all emergency and hospital personnel 🆘

#covid #ER #AandE

[ Print multiple copies and place them with your emergency kit in your purse or car. Print another for your loved ones.]

The National Adrenal Disease Foundation has been conducting a survey (link below) regarding your concerns about COVID-19 with adrenal insufficiency. Survey responses have provided excellent insight into concerns regarding COVID-19. Specifically, many people with adrenal insufficiency are worried that EMS, Emergency Room or hospital staff will not know how to treat them properly. To address this concern, NADF has created a one-page 'handout' document with medical staff instructions for adults and children. As always, the guidance provided in the document has been fully approved by our medical advisors. Download the PDF below for printing.

If you do find yourself in a situation where you have COVID-19 and need to go to the hospital, please don't hesitate to hand this to all medical personnel involved in your care.

To participate in the NADF survey, click here: 


Sunday, October 25, 2020

Cushing’s and Bilateral Adrenal Tumors

This post is for those with nodules on both adrenal glands, and the endo/ surgeon wants to remove one first to see how it goes. Before you agree, be sure to ask to be tested for Conn's and the gene PRKAR1A. [In fact, there are other genetic causes for bilateral adrenal tumors like iMAD, PRKACA, PRKAR1A, GNAS, PDE11A, PDE8B,PBMAH, ARMC5, plus others].

PPNAD/ normal CT scan.

PRKAR1A-negative familial Cushing's syndrome: two case reports
Lee Ling Lim et al. J Med Case Rep. 2015.

"The cases of these two patients illustrate the difficulties involved in diagnosing primary pigmented nodular adrenocortical disease, a variant of adrenocorticotropic hormone-independent Cushing's syndrome that is managed with bilateral adrenalectomy. A high index of suspicion for this disease is needed, especially in adolescents with adrenocorticotropic hormone-independent Cushing's syndrome who have a significant family history, features of Carney's complex, and no resolution of Cushing's syndrome after unilateral adrenalectomy.

**Patients with primary pigmented nodular adrenocortical disease can either have bilateral/multiple adrenal nodules or normal adrenal glands visualized by computed tomography.*** Long-term surveillance is imperative in patients with confirmed Carney's complex and in those who have not undergone complete genetic testing to exclude this hereditary disorder."


Sunday, March 1, 2020


I tried many cortisol replacements in the first five years post op bilateral adrenalectomy (BLA) — hydrocortisone, prednisone, dexamethasone, prednisolone, and in many combinations. None worked for me. So much wasted time! I don't even have gastroparesis or gut issues. 

Last week, I asked my endo to review my results from the genetic test, www.genomind.com i used to find the best anti depressant last summer to see if he saw anything that affected endocrine issues. He said I have an issue with my CYP3A4 gene that causes me to process cortisol rapidly. Labs always showed I had enough cortisol but my cells disagreed. I was always feeling low with extreme fatigue. Now that I have been on the cortisol pump for 14 months, that low feeling is gone. My body gets much more of what it needs in small batches of cortisol delivered slowly and directly. Even still, I have to take a higher amount than many due to this gene. I still take 30-35 mg solucortef daily even though it drips straight into the blood stream. 

If you aren't feeling well post op, get the Genomind test. It could improve your mental health as well as your cortisol replacement issues.

I'm still learning about the genetics stuff. Feel free to help me research and share what you learn. I have a theory that this CYP3A4 gene may also hinder cyclical Cushies like me to always get normal results on 24-hour urinary free cortisol tests (UFC) while always getting high hydroxycorticosteroids (OHCS) on those same UFCs. I feel this is a major scientific breakthrough. 

Tuesday, February 18, 2020

article: 2013 v. 2017 adrenal crises

A retrospective analysis of adrenal crisis in steroid-dependent patients: causes, frequency and outcomes

2019 article

Although we seem to be aware that extra precautions need to be taken to avoid adrenal crisis during trips and emotional stress, the truth is that most patients are AT HOME when AC occurs.

Thursday, February 13, 2020

Get Connected: Facebook groups

Fighting Cushing's with moxie is difficult. We have to surround ourselves with people who know what it's like and how to help us. One of the best Cushing's resources is our local, state, regional, and country groups on Facebook. Are you a member of yours?

Local groups are also a great resource to:

1) find a helpful doctor or who to avoid 

2) Cushing's makes Cushies isolated and lonely. Meet local Cushies who empathize and understand. 

3) create Cushing's awareness projects in your community

4) ask for help when ER docs aren't following protocol for treating adrenal insufficiency and adrenal crisis.


We have links to all known Cushing's groups below. Special thanks to Samantha B. for developing this project and helping to gather these links.

If you are already in your local groups, please help us guide our Cushie friends to these local groups when you see someone asking about doctors in the big Cushing's groups, like The Many Faces of Cushing's  You can help. We are in the business of saving lives, aren't we?  

[This works only if you are a member of the group: To tag a group in a FB post, simply type the @ symbol then the name of the group, select the group from the drop down menu. It will appear in your comment hyperlinked to the group. So easy!]

** STAGE OF DISEASE (members as of post)**

Post Op Cushies (324)

Cushing's Recovery _ Don't Stop Believin' (992)

Life after BLA (375)

Parents of Children who have Cushing's (275)

Cushies with Service Dogs (233)

** REGIONAL CUSHING'S GROUPS (members as of post)**

Midwest Cushies (33)

New England Cushies (36)

Pacific NW Cushies (73)

Southern Cushies (9)

** CUSHING'S STATE GROUPS (members as of post) **
Alabama Cushies (9)

Alaska Cushies (3)

Arizona Cushies (23)

Arkansas Cushies (11)

California Cushies (88)

Colorado Cushies (19)

Connecticut Cushies (9)

Delaware Cushies (1)

Florida Cushies (102)

Georgia Cushies (9)

Hawaii Cushies (1)

Idaho Cushies (6)

Illinois Cushies (27)

Indiana Cushies (20)

Iowa Cushies (3)

Kansas Cushies (7)

Kentucky Cushies (7)

Louisiana Cushies (10)

Maine Cushies (5)

Maryland Cushies (25)

Massachusetts Cushies (15)

Michigan Cushies (31)

Minnesota Cushies (15)

Mississippi Cushies (8)

Missouri Cushies (37)

Montana Cushies (4)

Nebraska Cushies (4)

Nevada Cushies (4)

New Hampshire Cushies (2)

New Jersey Cushing's Patients (58)

New Mexico Cushies (6)

New York Cushies (52)

North Carolina Cushies (29)

North Dakota Cushies (1)

Ohio Cushies (34)

Oklahoma Cushies (26)

Oregon Cushies (10)

Pennsylvania Cushies (74)

Rhode island Cushies (5)

South Carolina Cushies (22)

South Dakota Cushies (22)

Tennessee Cushies (27)

Texas Cushies (120)

* DFW Cushies (71)

* Central Texas Cushies (11)

* Houston (64)

Utah Cushies (15)

Vermont Cushies (9)

Virginia Cushies (27)

Washington cushies (19)

West Virginia Cushies (6)

Wisconsin Cushies (29)

Wyoming Cushies (1)

** INTERNATIONAL CUSHING'S GROUPS (members as of post)**

Cushings - Australia (190)

Cushing's Disease Awareness - Canada (105)

Europe Cushies (1) -- NEW

Indian Cushies (9)

Cushing's UK (783)

New Zealand Cushies (1) -- NEW

South Africa Cushies (1) -- NEW

** DOCTOR LISTS (members as of post)**
Cushing's Support and Research Foundation

Cushing's Help - SCROLL DOWN

Pituitary Network Association