MaryO

Ectopic ACTH-producing thymic carcinoid tumors are rare, but often behave aggressively with local invasion and distant metastasis. We herein report a case of ACTH-producing thymic typical carcinoid tumor with lymph node metastasis treated by surgery and postoperative radiation therapy.

Read more at https://cushieblog.com/2018/06/13/cushings-syndrome-caused-by-acth-producing-thymic-typical-carcinoid-with-local-invasion-and-regional-lymph-node-metastasis-a-case-report/

Even in Remission, Cushing’s Patients Have Excess Mortality

The outcomes of Cushing’s disease patients have improved with the introduction of several therapeutic approaches, such as minimally invasive surgery and cortisol-lowering therapies. However, mortality is still high, especially among those who do not achieve remission.

Read more at https://cushieblog.com/2019/03/11/even-in-remission-cushings-patients-have-excess-mortality/

Every ache or pain or out of the ordinary experience triggers anxiety. I am 7 years post op. I don’t have panic attacks per se, but I do get upset and frightened. These feelings also occur when the doctor sends me for routine testing just to make sure there is no relapse...

In the comments area of https://cushieblogger.com/2018/05/11/guest-question-ptsd-and-cushings/

Fact:  However, in the case of the chronically ill, a different cycle occurs. In the chronically ill, the person loses his normal health. He goes through a period of treatment and sometimes recovers...

Read more at https://cushieblogger.com/2018/04/24/myths-and-facts-about-cushings-you-should-be-all-better-by-now/

Ferol started noticing irregular symptoms in her late 20’s, but more developed since 2001, and rapidly more chronic as time went by. Finally, at her March 2005 physical, she had enough symptoms listed for her GP to start getting the connection to Cushing’s.

She was immediately referred to Dr. Adam Spitz, endocrinologist, with a battery of tests confirmed the initial diagnosis. Her pituitary surgery was performed 09-30-05. She has lost 30+ pounds after reaching a high of 190 prior to surgery.

Listen at http://www.blogtalkradio.com/cushingshelp/2008/05/08/interview-with-ferolv-pituitary-survivor

From Tips from LindaP

Things I've learned and wanted to share

By LindaP, with a little help from other Cushing's Message Board members. This is a continuing list, if you want to share.

I have learned so much on this Cushing's journey, much of it from all of you and this site. I wanted to share those learnings, in the event that it helps anyone else.

Obviously - my own opinions here!

My best wishes to everyone on their Cushing's journey.

Read more at http://www.cushings-info.com/index.php?title=Help_Yourself,_Part_2

Getting a diagnosis and dealing with tests can be a very trying time. Here are some words you'll want to know.

Find them at http://www.cushings-help.com/definitions.htm

Give yourself, your condition, or your health focus a mascot. Is it a real person? Fictional? Mythical being? Describe them. Bonus points if you provide a visual!

Read more at https://cushieblogger.com/2018/04/02/day-2-cushings-awareness-challenge-2018/

Harvey Cushing, the pioneer and father of neurosurgery, was born on April 8, 1869 in Cleveland, Ohio. He graduated from Yale University in 1891, studied medicine at Harvard Medical School and received his medical degree in 1895. In 1896, he moved to Johns Hopkins Hospital where he trained to become a surgeon under the watchful eye of William S. Halstead, the father of American surgery. By 1899 Cushing became interested in surgery of the nervous system and began his career in neurosurgery. During his tenure at Johns Hopkins, there were countless discoveries in the field of neuroscience.

In 1913, Cushing relocated to Harvard as the surgeon-in-chief at the new Peter Bent Brigham Hospital. Cushing continued to operate on several hundred patients a year with remarkable results.  In addition he was relentless in his recording of patient histories and continued his careful attention to the details and documentation of each surgery.

Read more at https://cushieblog.com/2017/06/03/cataloging-cushings-patients/

Have you checked out The Epic Foundation? I encourage you to do so. Cushie comrade Karen has dreamed of starting this non-profit to help Cushing's patients and others with invisible diseases. In 2017, Karen debuted EPIC. 

Read more at https://cushieblogger.com/2018/04/02/from-a-past-blogging-challenge-day-1-blogging-with-the-cushies-featuring-alicia-and-the-epic-foundation/

Heather, pituitary surgery on January 18, 2006 after years of medical problems, June 5, 7:30PM 

Listen at http://www.blogtalkradio.com/cushingshelp/2008/06/05/interview-with-heather-s-pituitary-cushings-survivor

I also have a teenage boy diagnosed with Cushings. He has been treated with medication for a year and a half and now we are back to the beginning...

Read more at https://cushingsbios.com/2018/04/04/stuart-m-parent-of-a-teenager/

I am 54. I understand what you are going through. I too have this disease. I just want you to know that you are NOT alone.

In the comments area of https://cushingsbios.com/2018/03/03/cyndi-k-what-now-undiagnosed-bio/

I definitely know how you feel. My MRI confirmed a Pituitary Tumor 13x16mm (benign/macroadenoma). Just got officially diagnosed last week...

In the comments area of https://cushingsbios.com/2018/04/02/roxanna-dawn-undiagnosed-bio/

I had cyclical Cushing with both my pregnancies…. didn’t know it tho… but my first one was a bad pregnancy….pre eclampsia….low birth weight even tho he was over due….

In the comments at https://cushingsbios.com/2018/04/10/rachelle-l-rachelle-mother-in-law-of-pituitary-patient/

I had found out that I had my kidney cancer on Friday, April 28, 2006 and my surgery on May 9, 2006.  I was supposed to go on a Cushie Cruise to Bermuda on May 14, 2006.  My surgeon said that there was no way I could go on that cruise and I could not postpone my surgery until after that cruise.

Read more at https://cushieblogger.com/2018/04/28/day-28-cushings-awareness-challenge-2018/

I had pituitary surgery for cushings disease in 2005, had a reoccurance and had gamma knife radiation in 2007, it took 6 years for them to diagnose me from this disease...

Read more in the comments area of https://cushieblogger.com/2018/04/08/have-you-had-treatment-for-cushings/

I had surgery last October for Cushing’s syndrome; had adrenal gland tumor (incidentaloma) and gland removed. Last two years have been a nightmare..

In the comments area at https://cushieblogger.com/2018/04/08/have-you-had-treatment-for-cushings/

I have often said, I wish I had cancer instead.  Most people would not understand this sentiment, why in the world would you wish for such a horrible disease?...

Read more at https://cushieblogger.com/2018/04/04/from-a-past-blogging-challenge-cushings-awareness-challenge-day-4/

I have often said, I wish I had cancer instead.  Most people would not understand this sentiment, why in the world would you wish for such a horrible disease?...

Read more at https://cushieblogger.com/2019/04/04/from-a-past-blogging-challenge-cushings-awareness-challenge-danielle-day-4/

I see a doctor at Vanderbilt who specializes in Cushings. I am very grateful that I found her but she never talks about the fatigue. I really wish this was discussed more. I’m not even sure if I have the energy to continue to work...

In the comments area of https://cushingsbios.com/2018/04/03/tamara-k-pituitary-bio/

I too have Cushings. Initially I had my 1.8 cm removed and had about three years of feeling better. And I now have a reoccurrence . I started taking Cagaberline but I could not take it. I am currently taking Metyripone....

In the comments area of https://cushingsbios.com/2018/04/04/stuart-m-parent-of-a-teenager/

I used to carry a print out of this everywhere I go because I find it very soothing.  This print out was in a plastic page saver. On the other side there is a Psalm 116, part of the post from Day Fifteen of the 2018 Cushing's Challenge.  These days, both these readings are available on my phone.

Read more at https://cushieblogger.com/2018/04/16/day-16-cushings-awareness-challenge-2018/

I was also suffer a long time Cushing syndrome,10 years before they figure it out, or should I say “believed me”. I

In the comments area of https://cushingsbios.com/2018/04/01/in-memory-shianne-lombard-treman-march-28-2018/

I was diagnosed with ACTH independent cyclical cushings. It took 5 years to get a diagnosis...

In the comments area of https://cushieblogger.com/2018/04/16/myths-and-facts-about-cushings-ufcs-are-the-gold-standard-for-cushings-testing/