Spreading the Word about Cushing's Listen as Mary O'Connor (MaryO) and Robin Smith (staticnrg) Discuss Spreading the Word about Cushing's

This chat depended on Joselle's surgery and recovery. Unfortunately, she wasn't able to make it so her interview will be rescheduled. Robin and MaryO discussed the role of blogs in helping to spread the word about Cushing's. They also discussed popular doctor blogs and other topics of interest to Cushing's Patients.

Listen to this archived chat with Robin and Mary on August 21, 2008
Listen to Robin's Archived Interview
Listen to MaryO's Archived Interview

Keywords: adenoma, blog, breathing, cortisol, Cushing's, diagnosis, hormones, incidentaloma, meds, MRI, neurosurgeon, pituitary, specialist, thyroid, tumor, weight

Mar Listen as Mary O'Connor (MaryO) hosted an interview with Mar

Mar (mrsb91986)'s signature:
6/04 DVT Deep Vein Thrombosis -diagnosed with Antiphospholipid syndrome & Lupus Anticoagulant
6/05 Rhuemy told me I "most likelly" have Sjogren's Syndrome
7/06 All normal Endo tests, except for the Saliva which was lost but a low IGF-1 at 77
4/9/07 Tests in Seattle 2 relatively high Midnight serums 7.2 & 8.8 IGF-1 86 + 7 x 6 mm tumor
4/07 to present Still testing
9/07 Phone consult with Dr. L semi-high saliva's 4.7, 4.9 and 36.1 !!! He said to continue testing selectively and will go to Camp Cushie 11/12/07
11/07 Camp Cushie
11/13 12:15 a.m. ACTH 10 Cortisol 11.1, 12:30 a.m. ACTH 10 Cortisol 8.5, 4:00 a.m. ACTH 45 Cortisol 22.2, 8:00 a.m. ACTH 8 Cortisol 9.3, 12:00 p.m. ACTH 11 Cortisol 13.3, 4:00 p.m. ACTH 8 Cortisol 5.8, 8:00 p.m. ACTH 11 Cortisol 6.9
11/14 12:15 a.m. ACTH 15 Cortisol 12.5, 12:30 a.m. ACTH 10 Cortisol 8.3, 4:00 a.m. ACTH 26 Cortisol 17.2, 8:00 a.m. ACTH 15 Cortisol 16.5
Random IGF-1 70 Final result of stim test: 71 L (101-267) Two midnight (11:59 p.m.) saliva's 7.4 & 4.9

Read Mar's blog
Listen to Archived Interview from August 14, 2008

Keywords: ACTH, adenoma, adrenal, blood pressure, buffalo hump, Camp Cushie, concentration, dystonia, endocrinologist, fatigue, fibromyalgia, growth hormone, memory, MRI, pituitary adenoma, salivary, stretchmarks, tremors, UFC, Weight Watchers

Sheryl Listen as Mary O'Connor (MaryO) hosted an interview with Sheryl. Robin Smith (staticnrg) cohosted.

Sheryl (sherylr) talked about what it's been like living with Addison's after a BLA - for over 30 years.

Sheryl writes in part:

"I was diagnosed with Cushings Syndrome of the adrenal glands in September, 1973. I underwent a bi-lateral adrenalectomy in January, 1974, 30 years ago.

"I'm sure some things have changed since then; I was in the hospital for 3 weeks post-op. I had all of the symptoms listed on this site. I originally was in the ER for what turned out to be a kidney stone. While there the doctors noticed a few oddities. For me the symptoms had been coming along so gradual that no one really noticed. The kidney stone was one result of Cushings. From the ER I was sent for many tests. MRI was not available then, and a test was done by threading a catheter into the groin area artery and shooting dye into it in order for the doc. to see the tumor(s). I tried to find it interesting and it was except every time they pushed more dye into me it was painful and eventually passed out.

"By that time I had entered the hospital knowing surgery would happen and that was the final test to make sure exactly where the tumors were. The surgeon told me afterwards that each adrenal had a huge tumor-benign-fortunately-each one the size of a grapefruit. The surgical incisions were made in my back, one on each side of the spine, in a sort of half moon shape. They are quite large because the tumors were so large. The replacement therapies required are hydro-cortisone and florinef. Because everyone is different you may have a different dose than I do. It took quite some time for my body to really become adjusted to the replacements. At least 5 years for me. I would hope for you newcomers that medical progress has considerably lessened that time!

Read Sheryl's bio
Listen to Archived Interview from August 7, 2008

Keywords: Addison's, adenoma, adrenal, adrenal insufficiency, anger, anxiety attacks, bilateral adrenalectomy, BLA, blood pressure, calcium, cortef, cortisol, cortisone, Cushing's, endocrinologist, energy, ER, florinef, grief, hair, heat stroke, joint pain, kidney stone, meds, memory, moonface, MRI, pain, PCOS, pregnant, sodium, steroids, stress, surgery, symptoms, testing, tumor, UFC, urologist, weight

Gracie

Listen as Mary O'Connor (MaryO) hosted an interview with Gracie

Gracie (fatnsassy) has been dealing with Cushing's symptoms for about 14 years.

She began testing in California with Dr. Ted Friedman June, 2007 and she was diagnosed in May, 2008 with cyclical Cushing's disease. She saw Dr. Hae-Dong Jho just before this chat and arranged for her pituitary surgery in Philadelphia, Pa, in August, 2008.

Read Gracie's bio
Listen to Archived Interview from July 31, 2008

Keywords: adenoma, adrenal, anemic, anxiety attacks, arthritis, blood pressure, cortisol, Cushing's, cyclical hormones, diabetic, Dr. Ted Friedman, endocrinologist, energy, heart palpitations, hysterectomy, IPSS, iron, joint pain, meds, MRI, neuropathy, neurosurgeon, pituitary, stamina, stretchmarks, surgery, symptoms, tumor, UFC, weight