Sunday, March 1, 2020

🧬 GENE THAT METABOLIZES CORTISOL

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

Fight 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 (and know who to avoid)

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

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.

** BUILD YOUR SAFETY NET **

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

Please help us guide our Cushie friends to these local groups, because we are in the business of saving lives. 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)
https://www.facebook.com/groups/403657143415790/

Cushing's Recovery _ Don't Stop Believin' (992)
https://www.facebook.com/groups/CushingsRecovery/

Life after BLA (375)
https://www.facebook.com/groups/lifeafterBLA/

Parents of Children who have Cushing's (275)
https://www.facebook.com/groups/Cushings.Parents.MAGIC/

Cushies with Service Dogs (233)
https://www.facebook.com/groups/121659931780658/

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

Midwest Cushies (33)
https://www.facebook.com/groups/142993276393687/

New England Cushies (36)
https://www.facebook.com/groups/178707342899340/

Pacific NW Cushies (73)
https://www.facebook.com/groups/662966240760256/

Southern Cushies (9)
https://www.facebook.com/groups/1637295636360624/

** CUSHING'S STATE GROUPS (members as of post) **
Alabama Cushies (9)
https://www.facebook.com/groups/559002207774956/

Alaska Cushies (3)
https://www.facebook.com/groups/210351299542355/

Arizona Cushies (23)
https://www.facebook.com/groups/1973528976244469/

Arkansas Cushies (11)
https://www.facebook.com/groups/965682310254245/

California Cushies (88)
https://www.facebook.com/groups/1953383821355772/

Colorado Cushies (19)
https://www.facebook.com/groups/194795651255343/

Connecticut Cushies (9)
https://www.facebook.com/groups/198091784103427/

Delaware Cushies (1)
https://www.facebook.com/groups/702589536611084/

Florida Cushies (102)
https://www.facebook.com/groups/337022150037978/

Georgia Cushies (9)
https://www.facebook.com/groups/874743196043631/

Hawaii Cushies (1)
https://www.facebook.com/groups/160653324587379/

Idaho Cushies (6)
https://www.facebook.com/groups/346697402499207/

Illinois Cushies (27)
https://www.facebook.com/groups/909629492537725/

Indiana Cushies (20)
https://www.facebook.com/groups/190293658390649/

Iowa Cushies (3)
https://www.facebook.com/groups/384233908709267/

Kansas Cushies (7)
https://www.facebook.com/groups/328949854266173/

Kentucky Cushies (7)
https://www.facebook.com/groups/176415352972314/

Louisiana Cushies (10)
https://www.facebook.com/groups/1982205115431929/

Maine Cushies (5)
https://www.facebook.com/groups/1940679902851939/

Maryland Cushies (25)
https://www.facebook.com/groups/158043194901155/

Massachusetts Cushies (15)
https://www.facebook.com/groups/377364986063601/

Michigan Cushies (31)
https://www.facebook.com/groups/2021340054858083/

Minnesota Cushies (15)
https://www.facebook.com/groups/1585767671513899/

Mississippi Cushies (8)
https://www.facebook.com/groups/2117766678502823/

Missouri Cushies (37)
https://www.facebook.com/groups/410307742716607/

Montana Cushies (4)
https://www.facebook.com/groups/1202154536584581/

Nebraska Cushies (4)
https://www.facebook.com/groups/360516677748199/

Nevada Cushies (4)
https://www.facebook.com/groups/1072271246248490/

New Hampshire Cushies (2)
https://www.facebook.com/groups/742220795973468/

New Jersey Cushing's Patients (58)
https://www.facebook.com/groups/188241875101760/

New Mexico Cushies (6)
https://www.facebook.com/groups/178007046146315/

New York Cushies (52)
https://www.facebook.com/groups/587077268306700/

North Carolina Cushies (29)
https://www.facebook.com/groups/1710343392355471/

North Dakota Cushies (1)
https://www.facebook.com/groups/207187900021808/

Ohio Cushies (34)
https://www.facebook.com/groups/2008945272680761/

Oklahoma Cushies (26)
https://www.facebook.com/groups/2013599672239343/

Oregon Cushies (10)
https://www.facebook.com/groups/187605472002162/

Pennsylvania Cushies (74)
https://www.facebook.com/groups/1579150108864894/

Rhode island Cushies (5)
https://www.facebook.com/groups/189736091775237/

South Carolina Cushies (22)
https://www.facebook.com/groups/249162592290144

South Dakota Cushies (22)
https://www.facebook.com/groups/2020373744917685/

Tennessee Cushies (27)
https://www.facebook.com/groups/165324084247958/

Texas Cushies (120)
https://www.facebook.com/groups/161452327813664/

* DFW Cushies (71)
https://www.facebook.com/groups/1274394622665594/

* Central Texas Cushies (11)
https://www.facebook.com/groups/324469071384027/

* Houston (64)
https://www.facebook.com/groups/201775113697744/

Utah Cushies (15)
https://www.facebook.com/groups/1970133526531675/

Vermont Cushies (9)
https://www.facebook.com/groups/150026969133961/

Virginia Cushies (27)
https://www.facebook.com/groups/164594464166392/

Washington cushies (19)
https://www.facebook.com/groups/1210175792419437/

West Virginia Cushies (6)
https://www.facebook.com/groups/1725357887522123/

Wisconsin Cushies (29)
https://www.facebook.com/groups/183608012244646/

Wyoming Cushies (1)
https://www.facebook.com/groups/547530572274806/

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

Cushings - Australia (190)
https://www.facebook.com/groups/1689486061297726/

Cushing's Disease Awareness - Canada (105)
https://www.facebook.com/groups/cushingscanada/

Europe Cushies (1) -- NEW
https://www.facebook.com/groups/801460396916637/

Indian Cushies (9)
https://www.facebook.com/groups/653404548443766/

Cushing's UK (783)
https://www.facebook.com/groups/220700984995893/

New Zealand Cushies (1) -- NEW
https://www.facebook.com/groups/3134700249904171/

South Africa Cushies (1) -- NEW
https://www.facebook.com/groups/727192837714506/

** DOCTOR LISTS (members as of post)**
Cushing's Support and Research Foundation
https://csrf.net/resources/cushings-doctors/

Cushing's Help - SCROLL DOWN
http://www.cushings-help.com/doctors.htm

The EPIC Foundation
https://www.epictogether.org/cushings-experts/