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

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Day Two, Cushing's Awareness Challenge

I would be remiss if I didn't use today's Challenge post to remind readers that there is a wonderful opportunity to ask Dr. Theodore Friedman questions about thyroid or other issues.  Dr. Friedman (or Dr. F, as he is called on the boards) has been a help to so many Cushies.  He specializes in cyclical Cushing's and seems to be able to diagnose what other, lesser, doctors cannot.

Dr. Theodore Friedman

According to his website, goodhormonehealth.com:

So many of us believe that fatigue, weight gain, loss of libido and other problems are just symptoms we must learn to live with. What if these symptoms are not the result of stress, diet, or aging, but are actually caused by a hormonal disorder? Symptoms of hormone deficiency or excess may be subtle and difficult to diagnose. Many hormonal problems are misdiagnosed as depression, especially in women.

You know your own body better than anyone else, and you know when something is wrong. Dr. Friedman is a compassionate, caring physician who will listen carefully to your concerns and work with you to establish a treatment plan. As an experienced, board-certified endocrinologist and researcher, he has the capabilities to diagnose and treat even the most difficult hormonal problems.

Dr. Friedman has found that some of his patients suffer from undiagnosed pituitary or adrenal problems. These include many people suffering from Cushing's disease, which can present a baffling array of symptoms and is frequently misdiagnosed. Other patients may have pituitary or adrenal insufficiency, which has numerous symptoms and is equally hard to diagnose. Dr. Friedman is a world expert in these difficult-to-diagnose diseases and he welcomes inquiries from patients and their physicians.

~~~

Dr. Friedman is not a stranger to Cushings Help.

Have questions about thyroid issues?

Ask Dr. Theodore Friedman.

Theodore C. Friedman, M.D., Ph.D. has opened a private practice, specializing in treating patients with adrenal, pituitary, thyroid and fatigue disorders. Dr. Friedman has privileges at Cedars-Sinai Medical Center and Martin Luther King Medical Center. His practice includes detecting and treating hormone imbalances, including hormone replacement therapy. Dr. Friedman is also an expert in diagnosing and treating pituitary disorders, including Cushings disease and syndrome.

Dr. Friedman's career reflects his ongoing quest to better understand and treat endocrine problems. With both medical and research doctoral degrees, he has conducted studies and cared for patients at some of the country's most prestigious institutions, including the University of Michigan, the National Institutes of Health, Cedars-Sinai Medical Center, and UCLA's Charles Drew University of Medicine and Science.

Read Dr. Friedman's First Guest Chat, November 11, 2003.
Read Dr. Friedman's Second Guest Chat, March 2, 2004.

Listen to Dr. Friedman First Live Voice Interview, January 29, 2009.
Listen to Dr. Friedman Second Live Voice Interview, March 12, 2009.
Listen to Dr. Friedman Third Live Voice Interview, February 13, 2011.
Listen to Dr. Friedman Fourth Live Voice Interview, March 12, 2012.

Dr. Friedman will return tonight, April 2, 2012.  The call in number with questions or comments is (646) 200-0162.

Listen live at http://www.blogtalkradio.com/cushingshelp

This interview will be archived afterwards at the same link and on iTunes Cushie Podcasts

 

 

 

Interview with Leiana, Adrenal Patient

Leiana was diagnosed with autoimmune adrenal insufficiency  in 2009 and put on 30mg of Cortef for the rest of her life. Her cortisol levels were below normal of -1.    She has been trying to wean off the steroids with no success. 

She had a 3.9 adenoma on the right adrenal gland removed in Sept 2010 is waiting for the left adrenal gland to kick in. She is extremely skinny and bony and eats around 3000 to 4000 calories a day.

Read Leiana's bio here.

Listen Live at http://www.blogtalkradio.com/CushingsHelp

The Call-In number for questions or comments is (646) 200-0162.

Archives will be available after the interview