Cushing’s Help is 14 Today!

 

Who'd have believed it?  Today, July 21, 2014 is our 14th birthday!

It's unbelievable but the idea for Cushing's Help and Support arrived 14 years ago last night. I was talking with my dear friend Alice, who ran a wonderful menopause site called Power Surge, wondering why there weren't many support groups online (OR off!) for Cushing's and I wondered if I could start one myself and we decided that I could.

The first website (http://www.cushings-help.com) first went "live" July 21, 2000 and the message boards September 30, 2000. Hopefully, with these sites, I'm going to make some helpful differences in someone else's life!

The message boards are very active and we have weekly online text chats, weekly live interviews, local meetings, email newsletters, a clothing exchange, a Cushing's Awareness Day Forum, podcasts, phone support and much more.

Whenever one of the members of the boards gets into NIH, I try to go to visit them there. Other board members participate in the "Cushie Helper" program where they support others with one-on-one support, doctor/hospital visits, transportation issues and more.

Interview Tonight at 6:00PM Eastern!

Stacy writes in her bio

MacKenna is my daughter.  I am in desperate need of assistance regarding her weight.
She is 6 years old and weighs about 95 pounds.  At four, she was normal to underweight.

First clue – she gained 10 pounds in three months.  Of course doctor’s wanted a food log …. however, as her parent, I knew something was wrong.

So much to say, I NEED to help my baby and am hoping someone on this board can point me to a good pedi endo (I am currently on my second).  I have pictures to show the progression of her changes.  Her growth pattern is abnormal as she does not gain height while she gains weight and vice versa.

I believe it is cyclical cushings.  And if it isn’t, I still need help as this is going to kill her – her little frame cannot hold much more.

McKenna's mom will be interviewed June 11 at 6:00 pm eastern in BlogTalkRadio.  Archives will be available later in the Cushing's Podcast.

Interview TONIGHT with Kathy C, Pituitary Patient

My name is Kathy Casey. I am a 63 year old retired school nurse. I am married with two wonderful sons and a grandson. My husband and I live in the mountain town of Mt. Shasta in northern California. I have always been athletic.

In 1995, I was diagnosed with a pituitary tumor. At the time the only symptom I was aware of was a severe headache. I had a transphenoidal resection by Dr. Wilson at UCSF Medical Center followed by radiation therapy for 23 days. At the time they said they could not remove all of the tumor.

In 2008/2009. I exhibited symptoms of Cushing’s and my cortisol level was outrageous, and I had to be hospitalized initially for a potassium level of 2. I returned to UCSF and Dr. Anwar Sandeep operated . By removing part of the tumor. My Cushing symptoms resolved. However, he said that the tumor was not encapsulated and was invading the cavernous sinus and stella turcica so it was still not possible to remove it all.

I was OK until December 2013 when I began exhibiting the symptoms of Cushings. One of my 24 hr. urines was 14,000. I had to be hospitalized for a potassium level of 1.9. Dr. Heaney said he has never seen a cortisol level that high. This time I decided to go to the UCLA Pituitary Tumor and Endocrinology Program where they were more oriented to follow-up and treating this disorder. Dr. Bergsneider decided that surgery was not an option. He and Dr. Heaney decided radiation was not an option. So now I am being followed by Dr. Heaney to see if medication can help.

I am now on Cabergoline 0.5 mg three tabs twice a week and Signifor 0.9 mg subcutaneosly twice a day. I think they are alleviating some of the symptoms. However, the Signifor caused my blood sugar to rise, and I had to go on Metformin which is causing nausea to a point where I have a hard time eating.
Anyway, this whole situation is depressing and overwhelming. I am tryng to stay positive, but I wonder how it will turn out. I am fortunate to have a supportive and helpful husband.

I am interested in communicating with people who may be going through a similar experience and learning more about this rare condition.

Kathy will be interviewed May 7, 2014 in BlogTalkRadio

HOME | Contents | Adrenal Crisis! | Abbreviations | Glossary | Forums |Donate | Bios | Add Your Bio

Cushing's Awareness Day 2014

It’s Here!

Dr. Cushing was born in Cleveland Ohio. The fourth generation in his family to become a physician, he showed great promise at Harvard Medical School and in his residency at Johns Hopkins Hospital (1896 to 1900), where he learned cerebral surgery under William S. Halsted.

After studying a year in Europe, he introduced the blood pressure sphygmomanometer to the U.S.A. He began a surgical practice in Baltimore while teaching at Johns Hopkins Hospital (1901 to 1911), and gained a national reputation for operations such as the removal of brain tumors. From 1912 until 1932 he was a professor of surgery at Harvard Medical School and surgeon in chief at Peter Bent Brigham Hospital in Boston, with time off during World War I to perform surgery for the U.S. forces in France; out of this experience came his major paper on wartime brain injuries (1918). In addition to his pioneering work in performing and teaching brain surgery, he was the reigning expert on the pituitary gland since his 1912 publication on the subject; later he discovered the condition of the pituitary now known as “Cushing’s disease“.

Read more about Dr. Cushing

Today, April 8th, is Cushing’s Awareness Day. Please wear your Cushing’s ribbons, t-shirts, awareness bracelets or Cushing’s colors (blue and yellow) and hand out Robin’s wonderful Awareness Cards to get a discussion going with anyone who will listen.

And don’t just raise awareness on April 8.  Any day is a good day to raise awareness.

Cushing’s Awareness Challenge, Day 4

Another idea I borrowed from Robin - using a Wordle as inspiration for today's post.

Even though I'm "in remission" since 1987, I'm still way too fatigued, napping every afternoon for several hours.  People think I should be normal since my pituitary surgery was so long ago.  Well, no.

Just a few days ago, I posted this abstract on Severe fatigue in patients with adrenal insufficiency.  I don't think that they needed to do this study at all.  Just ask any Cushie!

Giebels V1, Repping-Wuts H, Bleijenberg G, Kroese JM, Stikkelbroeck N, Hermus A.

Author information

Abstract

BACKGROUND:

Fatigue is a frequently experienced complaint in patients with adrenal insufficiency (AI) and may be influenced by cortisol levels.

AIM:

The objective of this study was to determine the prevalence of severe fatigue in adrenal insufficiency (AI) patients, to assess which dimensions contribute to fatigue severity and to determine the association between salivary cortisol levels and momentary fatigue.

SUBJECTS AND METHODS:

We performed a cross-sectional study in the outpatient department of a university hospital. Included were 27 patients with congenital adrenal hyperplasia (CAH), 26 patients with primary AI (PAI), 24 patients with secondary AI (SAI) and 31 patients with adrenal insufficiency after treatment for Cushing's syndrome (Cush-AI). Measurements included computerised questionnaires to determine fatigue severity and physical and psychosocial contributors. Patients took four saliva samples at home, in which cortisol levels were measured.

RESULTS:

Severe fatigue was experienced by 41 % of the CAH patients, 42 % of the PAI patients, 50 % of the SAI patients and 42 % of the Cush-AI patients. Psychological distress, functional impairment, sleep disturbance, physical activity, concentration problems and social functioning contributed to the subjective experience of fatigue. Salivary cortisol levels were not correlated with momentary fatigue.

CONCLUSIONS:

A considerable proportion of AI patients experience severe fatigue. Salivary cortisol level is not a significant predictor for momentary fatigue in AI patients.

PMID:

24615365

[PubMed - in process]

From http://www.ncbi.nlm.nih.gov/pubmed/24615365

Back to my nap now...

Cushing's Awareness Month, Day 3: Symptoms

Robin has made another excellent graphic of some of the symptoms of Cushing's.  There are far too many to be listed in any image, as shown by the list at http://www.cushings-help.com/toc.htm#symptoms

• • Symptoms
  • Buffalo Hump
  • Checklists
    • Checklist of Symptoms
    • Body and Skin
    • Bones
    • Children
    • Eyes
    • Hair
    • Heart
    • Men
    • Miscellaneous
    • Psychological
    • Sleep
    • Women
  • Central Serous Retinopathy (CSR)
  • Depression (NIMH)
  • Depression (Troya)
  • Dry Mouth
  • Pituitary Tumors and Headaches
  • hGH (Growth Hormone)
    • Adult Growth Hormone Replacement
      from The Society for Endocrinology
    • Adult Growth Hormone Deficiency Syndrome
      by David Cook, M.D.
    • hGH (Growth Hormone)
    • hGH (Growth Hormone) FAQ (Frequently Asked Questions)
    • Premature Aging
    • Webcast on Diagnosing and Treating Adult Growth Hormone Deficiency
      with David Cook, M.D., Marie Cook, BSN, Mary Andrews and several patients
    • Zomacton
  • Hirsuitism (excess hair)
    • Hirsuitism
    • Causes
    • Eflornithine (Vanqua)
    • Flutamide
    • Hormones
    • Options
    • Treatment
  • Infertility
  • Osteoporosis
    • Osteoporosis
    • Actonel®
    • Calcium
    • Diabetes
    • Soy
  • Pituitary Tumors
    • Journey to the center of the skull
    • Mary Lee Vance, M.D., Frequently Asked Questions
    • Questions and Answers about Pituitary Tumors
  • Rosacea
  • Stress
    • Stress/NIH
    • Stress
  • Steroids
    • Corticosteroid converter
    • Even Low Steroid Doses Can Be Trouble
    • Monograph for Prednisone
    • Prednisone
    • Side Effects of Steroid Therapy
    • Steroids
  • You'd Rather Be Dead ... 

Just to be silly, a few years ago, I did my own version of Cushing's symptoms:

Men Get Cushing's, Too!

Robin (staticnrg) writes:

“If you don’t have a blog or don’t have the time to blog, you can still share for 30 days. MoxieMelissaTx and I are trying to make it easy for you. Share others’ blog posts. Share the info-graphics we are putting up each day. Tell your own story. Do a Wordle. Do something. It can be one day, or all 30 days. The more we talk about Cushing’s, the more folks will find out about it and/or realize they have it.”

I wanted to share Robin’s graphic.  It’s rare for men to have Cushing’s, even rarer than women.

Some men do get Cushing’s, though.  Some of their bios are here: http://www.cushie.info/index.php/cushing-s/news-items/14-bios-of-male-patients

Cushing's Awareness Month, April 2014

Thanks to Robin for this wonderful logo!  I’ve participated in these 30 days for Cushing’s Awareness several times so I’m not quite sure what is left to say this year but I always want to get the word out when I can.

 As I see it, there’s not a whole lot of change in the diagnosis or treatment of Cushing’s since last year.  (Apparently, Dr Harvey Cushing would have agreed with me: http://cushieblog.com/2014/04/03/what-would-harvey-cushing-say-about-cushings-disease-today/ )

 Maybe this is the year…?