Cushing's with Moxie: Fighting The Worst Disease You've Never Heard Of
“Genetics and runaway appetite are not the only causes of obesity. Sometimes, your own body can turn against you in ways you never thought possible.” ~The Science of Obesity
Wednesday, April 28, 2021
First Surgery after Bilateral Adrenalectomy
Wednesday, March 17, 2021
Uncured Cushies and Extra-Pituitary Tumors
Extrapituitary Parasellar Microadenoma in Cushing's
Negative sellar exploration, despite the results of endocrine evaluation indicating Cushing's disease, the high incidence of failure of total hypophysectomy, and remission of Cushing's syndrome after sellar irradiation, suggest that the etiology of refractory Cushing's disease in many patients lies near the sella but is not in the pituitary gland. In such patients, the diagnostic and surgical effort should consider the identification and selective resection of an extrapituitary parasellar adenoma and the avoidance of total hypophysectomy and adrenalectomy, which necessitate life-long hormonal replacement therapy and risk development of Nelson's syndrome (21, 27).
Tuesday, November 17, 2020
Will You Try Amazon Pharmacy?
Friday, November 13, 2020
COVID Care + AIU SURVEY for Post Op Cushies
Tuesday, October 27, 2020
COVID-19 and AI Patients
Sunday, October 25, 2020
Cushing’s and Bilateral Adrenal Tumors
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
🧬 GENE THAT METABOLIZES CORTISOL
Tuesday, February 18, 2020
article: 2013 v. 2017 adrenal crises
A retrospective analysis of adrenal crisis in steroid-dependent patients: causes, frequency and outcomes.
Thursday, February 13, 2020
Get Connected: Facebook groups
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.
** BUILD YOUR SAFETY NET **
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?
** 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
Thursday, September 5, 2019
Brain holds A.M. meeting
Twelve year old with Cushing’s
Monday, May 13, 2019
How Good is Your Safety Net: Join your Local Cushie Group
|Having Cushing's often feels like we are free-falling. |
Join your local Cushing's group and grab an arm or leg. Hang on forever.
Saturday, April 27, 2019
Stanford research develops cortisol meter for sweat
Such an invention would simplify testing, diagnosis, and post op care for Cushing's patients. What a world it would be if there was no more arguing with doctors about what our adrenal glands do all day and how the best tests to catch cortisol fail many of us miserably. Think of how much lost hope would be regained.
"A group led by materials scientist Alberto Salleo at Stanford University has created a stretchy patch that, applied directly to the skin, wicks up sweat and assesses how much cortisol a person is producing."
Friday, January 4, 2019
|NDC for IMPAX/ Global is 0115-7033-01.|
We have to be smart about how to keep ourselves alive.
Download NADF's original statement here.
"This is an important update on accessibility of fludrocortisone acetate. Barr/Teva has informed us that the company is phasing out their production of fludrocortisone acetate. We want to reiterate that there are other manufacturers of our life-preserving aldosterone hormone replacement fludrocortisone acetate including Impax/Global Laboratories, Inc. and for those with government insurance, AvKARE. However, AvKARE is experiencing a manufacturing delay so that product may also be temporarily unavailable.
- Ask your pharmacist if they have contacted their wholesaler network and exhausted all options
- Try a smaller non-chain/local pharmacy since they are often not bound by exclusive contracts. If you have a good relationship with your pharmacist where the Rx is unavailable, ask them if they mind calling around to a few local pharmacies to check stock for you and then they can transfer the Rx electronically or via fax
- Try a hospital pharmacy
- If you are still not able to obtain your fludrocortisone acetate, please contact NADF at email@example.com
Thursday, January 3, 2019
Getting your Cortisol Dosage Right
So let me be clear.
Updosing for illness is life-saving in the short term. The long term doesn't matter much if we are dead and not here to enjoy it.
All bodies use cortisol to fight off infection. Our bla bodies will fight off infection but it will use up our daily dose of cortisol replacement to do it, leaving us under-replaced and on a path to adrenal crisis. Diarrhea and vomiting both cause dehydration which alters how much fludrocortisone/ aldosterone replacement we have to rebalance our fluids. If a BLAer vomits, dehydration is an issue but the more dire concern is that oral meds won't be absorbed before vomiting again. In this case, we can take 20 mg HC under the tongue, take anti nausea medicine like zofran or phenergan to hold off the vomit. If we can't take extra cortisol by mouth, we must go to the ER 1) for IV fluids due to dehydration and 2) IV hydrocortisone. For diarrhea, dehydration happens but we can easily take oral steroids under the tongue to keep AI and AC at bay. Those of us who have D instead of V in adrenal insufficiency have more time to figure things out. After 4-6 bouts of diarrhea, then we have to go to the ER for IV fluids even if we keep the cortisol dose down. So it is a tricky flowchart to follow but we must do it when we are sick.
Docs tell us to just stress dose with fever. This is not true. Many of us need more cortisol meds for urinary tract infections, simple colds, upper respiratory infections, pneumonia, shingles, pain from kidney stones, etc. BTW I've had all those post op BLA. I needed more cortisol that the 20-25 mg HC i was taking daily. Once, I was feeling very tired and worn down one Monday. All I wanted to do was sleep. Wednesday morning I coughed once. I knew I was sick. I went to urgent care that same morning and I had pneumonia.
Our bodies will tell us it needs more cortisol. We must learn the cues, trust ourselves, take doc advice into consideration but ultimately take meds as we need to, without worry of judgment or repercussion from the docs. They don't live without adrenal glands. We do. All 230+ in the BLA group do. That is why I place 40% of my faith into the answers I get from BLAers, 10% from doctors, and 50% from my experience, knowledge, and instinct. I encourage you to gain enough knowledge and surround yourself with experienced Cushies for you to do the same.
Sunday, December 2, 2018
Back in my day, when I was first testing for Cushing's in 2007, there were no online patient portals. It would take two to three weeks for the results from simple blood tests to come in, so said the doctors and staff.
Determined not to wait until medical staff called me with results, I bought a fax machine and a second phone line. I wrote my own 800 fax number on the lab requisition in the CC place. I told the labs it was my pcp doctor. They believed me and duly entered that number into their system.
I would get my results via fax at the same time the ordering physician did. No additional waiting.
How did I know what the results meant? I made it my business to learn it all. Lab Tests Online
https://labtestsonline.org/ is the best resource I've found that gives simple yet thorough descriptions of the test, the reasons doctors order that test, and most importantly, what high or low results mean.
I soon realized that doctors and staff tell us results take much longer to come in because they are building in the time it takes for the doctor to review each person's lab work and pass along next steps to their staff: call patient and schedule a follow up, add or change medication, refer to specialist, etc. Then we waited for that staffer to make it through those calls to the patients, adding days of waiting.
Be thankful that we have patient portals now, and many times, we only have to wait 48 hours after results are released to the doctor before they are automatically released to us.
Tuesday, October 23, 2018
Insurance Inspection: It's Open Enrollment Time
Just in case someone is not really familiar with the terminology:
Deductible is the amount that you will be required to pay out of pocket before insurance starts paying anything.
Annual out-of-pocket is the total amount you will have to pay. In other words, it includes your original deductible and then the amounts that insurance won't cover ($50 emergency room copay, 20% of surgical procedures, etc.). Once you hit the OOP, you pay nothing the rest of the year."
Friday, July 13, 2018
Guilt. Pain. Depression.
I feel lonely and unfulfilled.
I barely feel alive.
I have no motivation -- for even fun things, for important things, for myself, for my family.
Even with a list in hand, I have no 'get up and go.' I reprimand myself to get up out of the bed in the morning, and when I am finally out of bed, I long to go back 'home.' That's all I want to do... sleep. Even when I wake from a three hour nap, the relief I feel is brief.
I'm lost in the mundanity of my world. I don't want to be the inventory clerk of my house. I don't want to be responsible for cooking dinner every day and feeding my family and myself three times a day. I don't want to be asked where something is. I don't want to open to mail and pay bills. I don't want this to be the only thing I do with my day, so I avoid it. When I try, I quickly realize the limitations that Cushing's has placed on my body and mind. The chores go undone for another day.
As my day continues, so do admonishments I heap onto myself. Why don't I use my time more wisely? I'm such a phony because I am all talk. I have been talking about becoming fluent in French and moving to Europe, for how long? 30 YEARS?! I talk about going to the French movies that play once a month at the local college. I talk about studying the ancestors in my family tree. I talk about all the ways I need to renovate my house, projects to complete in my back yard and my front garden. I talk about how I have several children's books ready to write and how I just need to write them down. I even have a reminder on my phone to remind me daily to "Write for 30 minutes." Yet, I don't. I don't write, and I don't do any of the things on a daily basis that bring me joy or excitement. I feel guilt over that.
Who can make me do what I want besides me? Who stands in the way of me doing what I want to do? Me. All blaming fingers point to me. I have 24 hours of time every day, just like you do. I am sensitive to all that I am *not* doing every day. I see around me and I hear the messages... "Live today like there is no tomorrow." I know what I am supposed to do, but I just ... can't. I'm burdened by all the living I'm supposed to cram into one day because those days turn into my life. Yet, I do none of those things that I say I want to do. I just don't want to do anything.
No one cares that I am sick.
How do I forget everything I always wanted for my life? How do I throw all that away and dream up new dreams that are so small, they are barely an accomplishment? I have no expectations, and I have no goals. Why? Because I have held tight to small, achievable goals, and when the deadline comes up, I'm a no show. I flake. I can't hack it. I've learned not to make such deadlines for myself.
How do I focus on today, when today is filled with no motivation and wanting to check out of this world with a nap? How do I focus on what I want when I have no ability to achieve my goals?
I reach for the only thing that quiets my mind from the weight of the indignities.
I crawl into bed for a sweet nap and hope that I can tomorrow.
Monday, July 9, 2018
Cleaning while Cushie
Be sure to like my facebook page: Fight Cushing's with Moxie. Bye for now!