MaryO

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/

Talking about Cushing’s from the spouse/caretaker point of view He is also Monica’s producer/ manager.  For the two years during Monica’s diagnosis and surgeries he worked from home as a computer programmer so that he could take care of Monica. Monica and Kevin were married two years ago, just before Monica’s pituitary surgery...

Read more at https://cushieblogger.com/2018/04/17/archived-interview-with-monicas-husband-kevin-about-caretakers/

Archived Interview with Monica’s Husband Kevin, about Caretakers https://t.co/nPxvwvqtJf https://t.co/52WnXu6zwx

So often during the diagnosis phase of Cushing's I felt like this picture – I was walking alone to an unknown place with an unknown future.

My diagnosis was pre-Internet which meant that any information had to be gotten from libraries, bookstores, magazines…or doctors. In 1983 to 1986 I knew something was terribly wrong but there was no backup from doctors, family or friends. My first hope was from a magazine...

Read more at https://cushieblogger.com/2018/04/17/day-17-cushings-awareness-challenge-2018/

Steve was diagnosed with HyperBeta Adrenergic Syndrome in August, 2005. Doctors thought he might have a pheo, now they’re checking for ACC cancer. Steve also has a newspaper article written about him. Steve’s daughter may also have Cushing’s.

Listen at http://www.blogtalkradio.com/cushingshelp/2008/04/10/interview-with-steve-owens

Fact: UFC stands for Urinary Free Cortisol. In layman’s terms this test assesses cortisol by collecting urine for 24 hours. It was once thought that this was the gold standard and the end all and be all in terms of assessing Cushing’s in a patient. What we now know is that this is not necessarily true...

Read more at https://cushieblogger.com/2018/04/16/myths-and-facts-about-cushings-ufcs-are-the-gold-standard-for-cushings-testing/

Terry (Terry) is a long time pituitary Cushing’s survivor. Terry had a pituitary surgery (in LA) in October of 2003 which did not cure her Cushing’s Disease. Then, Dec 13th, 2003 she had her BLA in a Wisconsin hospital. She also had an infection in her sphenoid sinus. It originated at the site of her pituitary surgery from October 2003. She had to be on a lot of antibiotics and narcotic pain relievers. In Sept 2005 the surgeon remove the infection from one area, making another area clear…..

Listen at https://cushieblogger.com/2018/04/16/archived-interview-with-terry-g-pituitary-patient/

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/

The image above is from our first local meeting, here in Northern VA – note the 6 Cushing St. sign behind us. Natalie was the Cushie in the middle.

Today is the anniversary of Natalie’s death. Last month was the anniversary of Sue’s death. I wrote about Janice earlier.

Read more at https://cushieblogger.com/2018/04/21/day-21-cushings-awareness-challenge-2018/

In Memory

Natalie had a BLA in March, 2008. She died April 21, 2008.

Read Natalie's bio at https://cushingsbios.com/2015/04/21/in-memory-of-natalie-april-21-2008/

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 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 too have Cushings. I have a recurrence of my tumor and I am currently taking medication. You are not alone.

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

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/

After I was finished with the Cushing's long diagnostic process, surgery and several post-op visits to NIH, I was asked to give the scripture reading at my church. The man who preached the sermon that week was the survivor of a horrific accident where he and his family were hit by a van while waiting at an airport.

Read more at https://cushieblogger.com/2018/04/15/day-15-cushings-awareness-challenge-2018/

Day 15: Cushing’s Awareness Challenge 2018 https://t.co/fyZPh69Sne https://t.co/wfJVjSjKXv

Jenn (StaceyJenn) was diagnosed with adrenal insufficiency, hypothyroidism, and a host of other ailments in 2001 (candidiasis, intestinal permeability, 22 latent food allergies). Once diagnosed, she was on specially formulated hydrocortisone for 7 years as she was allergic to the fillers in the meds...

Listen at https://cushieblogger.com/2018/04/14/interview-archive-jenn-steroid-induced-iatrogenic-cushings-patient/

So, these are only seven of the many, many symptoms of Cushing's. I had those above – and I often felt like I looked like one of those little bearded dwarves.

Cushing's affects every part of the body. It’s not like when I had kidney cancer and only the kidney was affected.

Read more at https://cushieblogger.com/2018/04/14/day-14-cushings-awareness-challenge-2018/

Dr. John Lee was a doctor who wrote extensively about progesterone therapy for women in menopause. This is one of his books on amazon: https://amzn.to/2JJ1JWw

Here’s a lecture on the HPA Axis...

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

...I do have many of the symptoms of hypothyroidism, including feeling cold all the time. I know I have high testosterone levels, as they have been tested and shown as high, and I have some of the affects of that, too, like increased facial hair and chest hair and deepening of the voice....

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

Monica was diagnosed with Cyclical Cushing’s. She had pituitary surgery in November 2006. An 8mm encapsulated pituitary tumor was removed. Since there was no post-op crash, she also had a BLA in December 2006. 

Read more at https://cushieblogger.com/2018/04/13/interview-archive-monica-and-crystal-pituitary-buddies/

So, where did all this blue and yellow come from, anyway?  The answer is so easy and without any thought that it will amaze you.

Read more at https://cushieblogger.com/2018/04/13/day-13-cushings-awareness-challenge-2018/

The resection of microadenomas — small, benign tumors in the pituitary gland underlying Cushing’s disease — could be aided by a fluorescent marker that is naturally produced by the tumor, a new study shows.

Read more at https://cushieblog.com/2018/04/14/fluorescent-metabolite-might-help-surgeons-remove-pituitary-tumors/

...My dermatologist took one look at me and suggested it was Cushing’s then immediately referred me to an endocrinologist. I have been lucky to have good doctors along the way. I’ve had my pituitary and adrenal glands removed as well as radiation treatment and participated in a drug study. Today I struggle mostly with fatigue, weak muscles, headaches and anxiety...

In the comments area of https://cushingsbios.com/2017/10/24/ren-undiagnosed-bio/

...You may also have undiagnosed hypothyroid problem just because all thyroid hormone levels are within normal limi… https://t.co/4v5SVme2py