Friday, June 6, 2008

Great features from the Cushing's Support & Research Foundation

The Cushing's Support & Research Foundation has some very good tools to help people understand Cushing's.

In particular, I like the Faces of Cushing's powerpoint and the Do I Have Cushing's section.

Meet the Faces of Cushing's - Diagnosis, Treatment and Recovery slideshow (powerpoint slideshow)

What to Do if You Think You Have Cushing's

How long do you think you've had Cushing's?

Many people ask this question. It is a very interesting one, but one that is really difficult to answer.

I didn’t have the full slate of symptoms—to my knowledge—until 2006. However, I feel like I can trace a few milestone periods in my life and it adds a bit of insight with what I now know.

It will be at least 11 years from when I first started showing symptoms to when I got diagnosed with Cushing's disease.

The only commonality I can see when reviewing the timeline below is when I experienced great amounts of stressed. Since my body was already producing excessive amounts of cortisol, any drop of additional stress caused my cups to runneth over. Weight gain was my most obvious symptom.

Here are the timeline tidbits I can piece together:

1996 to 1999 – gained weight unexpectedly in grad school and during first big jobs. 5-10 pounds per year.

2000 – reached highest weight to date. Stress at job, moving back home to Houston, career change/stress.

2001 – completed a marathon in Rome, Italy. Success in losing 20 pounds before high school reunion.

2001 to 2002 – gained weight despite efforts.

June 2002 to May 2003 – period of weight loss. Atlkins diet worked well for me, as I embraced the carb-is-my-enemy mantra.

August 2003 – bridesmaid in friend Nancy’s wedding. I was measured for dress in March and by June/July, the dress was too tight and had to be let out. Gained 15 pounds from May to August despite earnest efforts to lose.

2004 – First paid political campaign job. Very stressful. Worked two full time jobs and ran a local political campaign’s volunteer activities. Gained weight.

Summer 2004 – buffalo hump pain begins. Neck and back pain cause me to call into work because I can’t move or get up. This pain continues to this day.

June 2005 – dating husband-to-be Jonathan. When I discuss weight gain, he notes that I have very good eating habits, so he can’t figure it out either. I go to internist who runs tests and prescribes Thyrolar for subclinical hypothyroidism. Symptoms subsist but soon return.

December 2005 – started new political job. Very stressful. Started missing my menstrual periods for 5 cycles until May 2006.

Summer/Fall 2006 – unexpected weight gain. Many public appearances. My suit jackets no longer closed, and I worried about my clothes prior to every event I attended. Cried frequently behind closed doors, at least bimonthly. Depression and anxiety were high.

November 2006 – Political campaigns end. Quit job, bought first home, and move with husband-to-be to San Antonio for his job. Unpack, settle in, start planning April 2007 wedding. Prepare for holiday season. Anxiety remains high despite decompressing environment. More crying, more depression, inability to focus, concentrate. Muscle aches become more pronounced in new two-story home. Started missing my menstrual periods again (November 2006 to April 2007).

December 2006 – Postpone wedding until October 2007, thinking that more time will relieve stress. Symptoms continue.

March 2007 – Visit to new PCP in San Antonio; I explain symptoms; He runs tests for thyroid.

March 28, 2007 – Doctor’s office calls with normal thyroid tests. I cried. I knew something was wrong. I took to the internet and within one hour of searching, I first read about Cushing's. I diagnosed myself that day.
05/09/07---first endo appt about Cushing's (he was totally dismissive, but I squeezed him for lab orders)

June 28, 2007 – saw specialist out-of-state; first high test results diagnostic of cushing's (MN cortisol serums 6.7, 7.0, 7.5; ACTH 78, 105; MN salivary 4.1, 5.4)

November 2, 2007 – IPSS, showed diagnostic results at baseline of 14 to 1 (diagnostic: 2 to 1); timed intervals were diagnostic: 93 to 1, 78 to 1 (stimmed to 3,440!)

December 20, 2007 – diagnosed with Cushing's disease. Declined pituitary surgery for 12/27/07 to try for 1st baby.

December 31, 2007 – eloped