Cushie Chats: Podcasts and Interviews with information and support for Cushing's patients

Laura (LauraNG), October 29, 2009- Interview #56

Fri, 30 Oct 2009 10:50:08 -0500

Laura has been struggling since 2007 with various odd things happening to her body. In March of 2009 she was diagnosed with Hashimoto's Disease and Hypothyroid. Her bio contains a long list of symptoms she has and she has been misdiagnosed with Obesity, Diabetes, Kidney stones, Depression, MS, Manic/Depressive, TIA, Anxiety - stress, Not exercising enough, Not eating properly, Abusive relationship (due to bruising). In responding to the email confirming this interview Laura wrote: "When I started reading the bio's of people like myself, I started to cry tears of relief that what I may have, is actually ONE real thing. I cannot tell you how happy I was to find your website and I think it is wonderful that so many people who truly understand how frustrating it is to think we are alone, are willing to put themselves out there as beacons of hope for the rest of us. I felt so strongly, that I wanted to add my bio and offer myself for interview. If I can help one person feel a little calmer while they go through this process, I am more than willing. I don't know if I have Cushing's but if I do, it is important to me to reach out to others because the attacks coming from the physical and mental side of this illness, deserve to be exposed and recognized. Even though I am feeling a bit humiliated, reclusive and embarassed because of what it is doing to me." Read Laura's entire bio at http://www.cushie.info/index.php?option=com_content&view=article&id=413:laura-undiagnosed-bio&catid=32:bios&Itemid=68

Jon - September 18, 2009- Interview #55

Thu, 17 Sep 2009 21:13:49 -0400

Jon's first pituitary surgery was with an inexperienced surgeon. He took Ketoconozole until his second surgery at UC San Francisco June 2nd, 2009.

Elizabeth (Beth) - Aug 06,2009 - Interview #54

Thu, 6 Aug 2009 22:15:03 -0400

Elizabeth has been sick for about 5 years. She was diagnosed with the start of cervical cancer so she had a LEEP done. Her cortisol level was still high so she went to Johns Hopkins and an endo there diagnosed her with Cushing's in May of 2009. Her pituitary tumor was removed in June 2009.

Lynn (Lynn) - June 18, 2009 - Interview #53

Fri, 19 Jun 2009 06:20:13 -0400

Live interview June 18, 2009, 7:30PM EST Lynn had a left adrenalectomy in 2000. In 2004 Lynn had a Thyroidectomy due to tumor which was malignant on the biopsy, yet benign at surgery. In May 2009 she learned she had a 3mm anterior pituitary tumor. She is a patient of Dr Ted Friedman.

Gail (Dolly) - Mar 19,2009, Interview # 52

Thu, 19 Mar 2009 02:02:56 -0400

Gail was originally diagnosed with Cushing's in 1988. At that time she had a pituitary tumor removed. She was okay for about 10 years and the Cushing's occurred again. Her tumor was removed, as well as her pituitary glands. In 2003, it reoccurred and she had her adrenal glands removed. She is now experiencing all symptoms again and her Endo is puzzled since Gail has no glands, and has undergone radiation. The endo thinks maybe she now has Nelsons Syndrome. It has been a long battle because of the Cushing's, over 21 years, and it has effected her life dramatically.

Dr Ted Friedman (Dr. F.) Interview, Part 2, March 12, 2009

Thu, 12 Mar 2009 15:28:51 -0400

Part 2, 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. Some of the topics covered: What is Cushing's?; 17-hydroxy; ACL (lab); acne; ACTH; adrenal; atrial myxoma; awareness; birth control pills; Carney Syndrome micronodule adrenal; CBG globulin; central hypothyroidism; circadium rhythm; cortisol; creatinine; cyclic Cushing's; depression; dexamethosone supression tests; Diabetes Insipidus; ectopic; endoscopy; Esoterix; estrogen; fingerstick machine; genetic testing; growth hormone; hormones; hump; hyperplasia; incidentaloma; IPSS; LabCorp; LH, FSH; libido; Liddle test; lung; Lynette Nieman; memory; MEN1; Nelson's Syndrome; NIH; optic nerve; parathyroid; PCOS; periods; pituitary MRI; pituitary; psych disorders; salivary cortisol; stretchmarks; surgeons; symptoms; testing; testosterone; thymus; tired; tumor; UFC; ultrasound; Vanderbuilt; weight; wired at night

Cushing's Help Interview # 50: Ami (ADDflower) - Mar 06,2009

Thu, 5 Mar 2009 02:04:17 -0400

Ami had pituitary surgery on January 27, 2009 at UCI University Hospital. Her doctor has been trying to figure out what is wrong with her for 12 years, but she really only joined her crusade 3 years ago, being unwilling to be sick.

Cushing's Help Interview # 49: Tammie (makeitgreen) - Feb 27,2009

Thu, 12 Feb 2009 02:05:39 -0400

Interview with Gina (gmcook3), February 12, 2009

Mon, 13 Apr 2009 15:50:57 -0400

Gina was diagnosed with cyclic Cushing's Disease in August 2008 and has a 3-4 mm abnormality on her pituitary gland and a possible adrenal problem. Read her entire bio at http://www.cushings-help.com/ginac.htm

Unfortunately, all 3 of us - host Mary, co-host Robin and Gina had issues and were booted off the system several times so that this interview never really ended but abruptly stopped. Gina has graciously agreed to return to finish up this interview after her upcoming surgery. Thanks for your patience, everyone, and thanks to Gina for putting up with us disappearing and reappearing!

Interview with Melissa (MELISSA74) - Feb 05, 2009

Fri, 6 Feb 2009 14:23:14 -0500

Melissa had pituitary surgery in October, 2008. She had recently had a baby so all her symptoms had been supposed to relate to her pregnancy. Melissa's brain MRI came back normal. She had a lot of other testing and the neurosurgeon finally saw an area that looked worthy of removal. Her surgery was successful and she has weaned off her cortisol.

Dr Ted Friedman (Dr. F.) Interview, Part 1, January 29, 2009

Fri, 30 Jan 2009 12:35:40 -0500

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. Some of the topics covered: What is Cushing's?; 17-hydroxy; ACL (lab); acne; ACTH; adrenal; atrial myxoma; awareness; birth control pills; Carney Syndrome micronodule adrenal; CBG globulin; central hypothyroidism; circadium rhythm; cortisol; creatinine; cyclic Cushing's; depression; dexamethosone supression tests; Diabetes Insipidus; ectopic; endoscopy; Esoterix; estrogen; fingerstick machine; genetic testing; growth hormone; hormones; hump; hyperplasia; incidentaloma; IPSS; LabCorp; LH, FSH; libido; Liddle test; lung; Lynette Nieman; memory; MEN1; Nelson's Syndrome; NIH; optic nerve; parathyroid; PCOS; periods; pituitary MRI; pituitary; psych disorders; salivary cortisol; stretchmarks; surgeons; symptoms; testing; testosterone; thymus; tired; tumor; UFC; ultrasound; Vanderbuilt; weight; wired at night

Interview with Arubiana, January 22, 9:00PM

Tue, 20 Jan 2009 07:52:24 -0500

Arubiana has attended Dr. William Ludlam's "Camp Cushie" to do definitive Cushing's testing. They found a microadenoma on the left side of her pituitary gland. She will be going to be having surgery with Dr Mayberg in March/April of 2009. In addition to seeing various doctors, Arubiana has seen an accupressurist for help with sleep and general health.

How can I convert to my Time Zone? Go to: http://www.globalmetric.com/time

The first Audio Cushing's announcement: upcoming interview with Dr Ted Friedman

Sat, 17 Jan 2009 23:35:56 -0500

This first "test" announcement is about the upcoming interview with Dr Ted Friedman. Note that the date of this interview has changed to January 29, 2009 at 8:30PM eastern. Future audio announcements will include other news items and happenings in the Cushing's Community.

Interview with Barbara (2maro), January 8, 2009

Thu, 8 Jan 2009 23:34:26 -0500

Barbara (2maro) had surgery at MD Anderson with Dr. McCutcheon who removed her pituitary tumor transphenoidally. Miraculously, over the next 9 months, she lost 100 pounds. She is no longer diabetic and did not have high blood pressure until 2008.

Robin and MaryO discuss...everything, November 21, 2008

Fri, 21 Nov 2008 01:29:48 -0500

Our guest didn't call in so Robin and MaryO discussed a bit of everything from doctors to blogs, to the non-profit, to pending tests to any and everything.

Interview with Cyndie (aautomo884) - Nov 14,2008

Fri, 14 Nov 2008 01:20:10 -0500

MaryO interviewed Cyndie (aautomo884). Cyndie started having symptoms 2004. She had 2 Parathyroid Adenomas removed June 2007. She is now ruling out MEN 1.

Interview with Kay (Casperslove) - Nov 07, 2008

Fri, 7 Nov 2008 08:41:27 -0500

MaryO and Robin interview Kay. Kay is mom to 6 year old twins and was "officially" diagnosed with Cushing's in February 2008. She had surgery to remove the pituitary tumor causing the Cushings in June of 2008. She is in the process of weaning off steroids orally. She documents her post-op experiences in her blog. She did some of her testing at Dr. Ludlam's "Camp Cushie".

Keywords: acne, ACTH, anxiety, blood tests, cortisol, CT scan, dexamethosone test, diabetes, Dr. Mayberg, endocrinologist, estrogen, fatigue, growth hormone, hyperplasia, IPSS, miscarriage, MRI, neurosurgeon, PCOS, pituitary, prolactinoma, salivary, surgery, thyroid, UFC, urine, wean, weight

Second Interview with Gracie (fatnsassy) - Oct 24, 2008

Fri, 24 Oct 2008 15:34:29 -0400

Join us as Mary O'Connor (MaryO) interviews Gracie again. 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 and arranged for her pituitary surgery in Philadelphia, Pa, in August, 2008. This is her first post-op interview.

Interview with Stacey (stacey) - Oct 17, 2008

Fri, 17 Oct 2008 21:14:15 -0400

Join us as Mary O'Connor (MaryO) and Robin Smith (staticnrg) interview Stacey. Stacey will be one year post-op at the time of the interview. She will have been to her 1 year appointment and will give a full update of her recovery.

Interview with SusanM - Oct 09, 2008

Fri, 10 Oct 2008 21:09:19 -0400

Join us as Mary O'Connor (MaryO) and Robin Smith (staticnrg) interview long time Cushing's patient Susan (SusanM). Susan writes: Susan writes: As you may have read in my other post, I retired from a 28-year career at a major health insurance company (one of the big five) on March 31. 2008. I am happy with this achievement, however, much more proud of the actions I took to reach that achievement. Why so? For 27 of those 28 years, I had faced Cushings and we all know what difficulty that may bring. In 2003, I had the pit surgery and became quite ill in 2004. It wasn't until November, of 2005 that I had the BLA which brought about some relief. During all of this, I worked full time consistently until 2004 when I had to take some time off of work. I was GH deficient and had the episode of congestive heart failure. Once back at work, I applied for a work accommodation to work at home on Monday and Friday under the Americans with Disabilities Act. It was granted and I was provided with a full computer set up at home as well as the one at work. This made a great difference in my being able to work or not. Not driving the 26 miles each way to work as well as being at home continued my work. Another thing I did was to work with my PCP to be accepted into the Physical Rehab at the local hospital. It provided medically-monitored exercise (up to 5 days a week) and my muscles recovered well during this time. I had difficulty with shortness of breath due to the weak muscles around my lungs and this was a positive step to correct that situation. What else did I do to keep myself working during this timeframe? I worked incredibly hard on achieving a positive mental attitude! I meditated, performed self-hypnosis, and found a support system that worked for me. This foundation made the better days better and difficult days a bit less difficult. Can someone with Cushings continue working? In my opinion, YES.

Interview with "Dr. Rob"

Fri, 3 Oct 2008 15:11:34 -0400

Dr Rob writes in his very popular blog: "I am a practicing primary care physician in the Southeastern US, caring for patients of all ages (Board Certified in both Internal Medicine and Pediatrics). This blog covers a wide variety of issues, including the following: What it is like to be a physician, dogs driving cars, what troubles are in our system, toddlers with flame-throwers, what would it take to fix that system, llamas, death and dying issues, mutants, and accordions. Maybe I need to write about mutant dying accordions with flame-throwers. Hmmm....I feel a post coming. Anyhow, I like variety. Life is always lived with both laughter and tears. If you are a regular reader of this blog, it is also filled with nausea and nightmares. Thanks for stopping by. -Dr. Rob"

Part 2: Spreading the Word about Cushing's

Fri, 26 Sep 2008 15:00:39 -0400

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.

Interview with Joselle - September 11, 2008

Sat, 13 Sep 2008 09:57:50 -0400

Joselle writes in her bio: "I am a 48 year old female recently diagnosed with Cushing's Disease caused by a pituitary adenoma. It's taken a few years to finally come to this diagnosis. I had a series of symptoms which were indicative of a variety of disorders. However, I don't present as the "typical" Cushing's patient as I don't have the "moon face" or "buffalo hump". Fortunately, I have a primary doctor who didn't give up and ultimately orderd the cortisol suppression test. He then referred me to an endocrinologist. I had an MRI this past week. I have an appointment with a neurosurgeon in a week. It's a bittersweet diagnosis; I am a little scared about the surgery, but THRILLED that I am not crazy.....and maybe I'll actually be able to stop SHAVING my face !!!!!!"

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

Fri, 22 Aug 2008 14:41:54 -0400

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.

Interview with Mar (mrsb91986) - Aug 14, 2008

Tue, 19 Aug 2008 10:32:47 -0400

Mar has been testing for Cushing's for about 4 years. She has been to Camp Cushie twice and keeps a blog of her symptoms and test numbers.

Interview with Sheryl (sherylr), August 7, 2008

Sat, 9 Aug 2008 11:26:14 -0400

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....

Interview with Gracie (fatnsassy), July 31, 2008

Fri, 1 Aug 2008 12:09:49 -0400

Gracie says: "I've been having symptoms of Cushing's at least 14 yrs. I began testing with Dr. F. June, 2007. I was diagnosed in May, 2008 with cyclical Cushing's disease. I have surgery coming up soon. I'm going to see Dr. J. next Monday, and I'll get my surgery date that day, so I will know by the night of the program, when I am going to surgery.

Interview with Katie (kvb927), July 24, 2008

Sat, 26 Jul 2008 12:47:45 -0400

Katie's short bio: Symptoms started in 2002 at age 22, or before. Jan. 2008 - 2 mm. area of differential enhancement on right pituitary and 11 mm. pineal cyst identified by MRI Jan. 2008 - DX - hypothalamic amenorrhea Mar. 2008 - DX - pituitary adenoma, hypogonadism - female Katie will be an officer in the upcoming Cushing's Help Organization

Interview with Kate (Fairley) - July 17,2008

Fri, 18 Jul 2008 11:20:57 -0400

Kate (Fairley), July 17, 2008. Kate has had symptoms since 1991. She has had two pituitary surgeries and another recurrence. She is not yet cured and her current diagnoses are Idiopathic Intracranial Hypertension, panhypopituiarism and a CSF leak. She has appeared on National Geographic TV in the Science of Obesity.

Interview with Charlie (creativeogre) - Jul 10,2008

Thu, 10 Jul 2008 21:09:21 -0400

Charlie is not yet diagnosed with Cushing's but has many symptoms. He writes, in part, "I understand that Cushing's Disease is a very difficult disease to diagnose. However, it seems as though we have had to guide doctors through this process over the past year. If I sound bitter and frustrated, it is because I am! I have not been able to work over the past year. Tasks that used to take me several hours to complete now take two days. I can no longer walk the dog..."

Alicia Returned for a Second Interview, just after her Social Security Disability Medical Screening, June 26, 2008

Thu, 26 Jun 2008 20:16:24 -0400

Interview with Alicia, a Cushing's Message Board member who is still testing. Alicia writes "But my life has changed significantly since my last interview, and I could talk about losing my job and applying for Social Security at such a young age. And the issues about self-esteem tied to career, and risk of depression and isolation. Let me know...will be right after my disability medical screening, I should have lots to talk about!"

Interview with Donna Sellers, President, John's Foundation for Cushing's Awareness, mother of a Cushing's patient, June 19, 2008

Thu, 19 Jun 2008 20:44:58 -0400

Donna's son may have been born with an adrenal tumor. His tumor was discovered and removed about 4 years ago. Since that time, he has been diagnosed bipolar and ADHD. Because of John's ongoing medical issues, Donna home-schools him in addition to running the foundation she started and named for John. Donna helps children and families worldwide who are dealing with Cushing's.

Interview with Dr. Dori Middleman, June 12, 2008

Thu, 12 Jun 2008 20:50:00 -0400

Dr. Dori Middleman is a Psychophamacologist, Certified Gestalt Psychotherapist and Cushing's Patient. She has had pituitary surgery and two gamma knife radiosurgeries to cure her Cushing's disease.

Interview with Heather S, June 5, 7:30PM

Sun, 8 Jun 2008 20:21:26 -0400

Heather S had pituitary surgery on January 18, 2006 after years of medical problems, June 5, 2008. From Heather's bio: "I lived my life with cerebral palsy growing up.. I had problems with weight, but nothing really horrible like now. When I gained it was little bits, but with how active I was, I could never lose anything. When I turned 21 I graduated from college and was looking for employment, which was also difficult because people thought that I was in pain when I walked. Around the age of 22 I started to see fluid retaining in my legs.. it wasnt so bad at first.. also in college I broke my bones in my feet 3 times for no real reason. The fluid in my legs started getting worse and worse and the fluid was just leaking out of my legs. I went to the emergency room and had no insurance so I was kind of unlucky there. I went to a primary care doctor and was told that I had lymphedema and was given fluid pills. They didn't really work..."

Steve Owens (sowens) returned to talk about support networks and agencies, May 29, 2008

Fri, 30 May 2008 13:22:21 -0400

His topic was building up support networks and using available agencies to get back to work (rehab, PT/OT, job coaches, etc). Steve was diagnosed with HyperBeta Adrenergic Syndrome in August, 2005. Doctors thought he might have a pheo, now they're checking for ACC cancer.

Interview with Leslie, May 22, 2008

Thu, 10 Jul 2008 21:16:32 -0400

Leslie had pituitary tumors removed twice at the University Of Michigan. After her second surgery she gave birth to her second baby. She has had another recurrence and has had Gamma Knife Radiation April 3, 2008. She is not yet sure if the Gamma Knife worked yet.

Interview with Jackie (samsmom) & Jordan - May 15,2008

Fri, 16 May 2008 10:48:09 -0400

Jackie (samsmom) & Jordan: Cushing's in young people, the fight to diagnose, the amazing gift of a GOOD endocrinologist. Jackie has appeared on Discovery Health discussing her fight for a cure for her younger daughter, as well. Later, the gene responsible for Sam's illness was found. Her father carried the gene as did her two sisters. Jordan, Jackie's oldest daughter, has recently had her adrenals removed.

Interview with FerolV, pituitary survivor - May 08,2008

Thu, 8 May 2008 20:22:13 -0400

Ferol started noticing irregular symptoms in her late 20's, but more developed since 2001, and rapidly more chronic as time went by. Finally at her March 2005 physical, she had enough symptoms listed for her GP to start getting the connection to Cushings'. She was immediately referred to Dr. Adam Spitz, endocrinologist, with a battery of tests confirmed the initial diagnoses. An MRI confirmed the tumor involvement and pituitary surgery was performed 09-30-05.

Interview with Monica (Monicaroni), May 1, 2008.

Thu, 1 May 2008 21:12:24 -0400

Monica returned to talk about the challenges she's faced maintaining her music career while in testing and treatment.

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. Both surgeries were in Seattle. She is now free of Cushing's and is on the road to recovery!

Interview with Kevin, Monica (Monicaroni)'s husband, April 24, 2008

Thu, 24 Apr 2008 22:05:20 -0400

Listen as Kevin discusses his role as caretaker and spouse. At the time of this chat, Kevin was bringing Monica home from the hospital. She had just had another Adrenal Insufficiency episode. Kevin is also Monica's producer/ manager. He has been a tour manager and sound engineer in the music industry his whole life and has worked with many of the greats in the industry. 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. Monica and Kevin spent their honeymoon in Portland at OHSU doing one of her several "camp cushie" trips.

Interview with Terry (Terry), April 17, 2008.

Thu, 17 Apr 2008 21:26:30 -0400

Terry (Terry), April 17. 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 removed infection from one area, make another area clear to allow for better drainage, checked her bone and found one area okay but took bone for culture from another area. Terry has had an infection requiring a post-op PICC line.

Interview with Steven Owens (sowens)

Thu, 10 Apr 2008 23:43:25 -0400

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

Cushing's Awareness Day Special Chat

Wed, 9 Apr 2008 10:49:08 -0400

Jayne Kerns and Robin Smith (staticnrg) hosted a Cushing's Awareness Day Special Chat This chat had callers and some testimonials for the website and Mary O'Connor (MaryO). Ideas were discussed for setting up non-profit status for this website.

Interview with Jenn (StaceyJenn), April 3, 2008

Thu, 3 Apr 2008 22:56:07 -0400

Jenn 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. Her doctor stopped practicing and she was transferred to his associate. She switched Jenn to medrol. After Cushing's symptoms, a new endo started weaning her off the medrol and she had many problems. Read Jenn's bio at http://www.cushings-help.com/staceyjenn.htm

Interview with Monica (Monicaroni) and Crystal (Vinesqueen), March 27, 2008.

Thu, 27 Mar 2008 20:01:12 -0400

Crystal and Monica went through every step of their Cushing's journey together--tested together, had surgeries the same days, and have become best friends because of it. 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. Both surgeries were in Seattle. She is now free of Cushing's and am on the road to recovery! Crystal had pituitary surgery surgery 11/06 followed by a BLA 12/06. She also had a sinus excavation 2/06 and sinus surgery 5/07. Her last surgery was an internal hernia repair 8/07

Interview with Karen Nolan (rooon55) a cyclical Pituitary Patient, part 2, March 20, 2008

Thu, 20 Mar 2008 10:21:49 -0400

Karen (Rooon55), part 2, March 20, 2008. Karen's disease started when she was a little girl (7) and she finally got a diagnosis in 2005. She had cycling Cushing's, Thyroid disease, GH deficiency, and Auto immune Alopecia. She believes she is cured after two Pituitary surgeries. A doctor didn't advise Vermont's Karen Nolan (Rooon55 on the boards) that she might be one of the scant 3.5 per million people diagnosed annually with Cushing's disease - another Cushing's patient did.

Cushing's Diagnosis and Symptoms, part 2

Thu, 13 Mar 2008 18:47:34 -0400

March 13, 2008: Robin Smith (staticnrg) and Mary O'Connor (MaryO) hosted as Cushing's message board members called in to talk about their fight for diagnosis and treatment. Robin opened the show with a brief explanation of what Cushing's is and what the symptoms are.

Mary OConnor (MaryO) interviews Robin Smith (staticnrg), Part 2 - March 6, 2008

Thu, 6 Mar 2008 20:12:10 -0500

Mary OConnor (MaryO) interviews Robin Smith (staticnrg),Part 2 - March 6, 2008. Robin had Cushing's for over 20 years, at least. Of course, no one figured it out or even put two and two together until her new PCP whom she found in 2004 said "endocrine". She didn't figure it out, either, but at least Robin had a piece of the puzzle and she found http://www.cushings-help.com.

JenS discussed Bilateral Adrenalectomies (BLAs)

Thu, 28 Feb 2008 20:35:37 -0500

Jen had Pituitary surgery by Dr. Shahinian 4/28/04, removed ACTH secreting corticotroph hyperplasia and prolactinoma.

She was diagnosed by Dr. Ted Friedman with cyclical pituitary Cushings. Her second Surgery 7/21/04 for infection resulted in neuralgia.

She had a BLA in March 2006 as Corticol Hyperplasia returned and she now has possible Nelson's syndrome. Jen also has Thyroid Issues (Hashimoto's, multiple nodules and entire thyroid removed 2003) and she is Growth Hormone Deficient (3/2006); Panhypopituitary (5/2007). Her latest medical issues are possible Myasthenia Gravis or other motor neuron issue (7/2007) and Hypoparathyroid (9/2007)

Jen talked about Bilateral Adrenalectomies (BLAs) and answer your questions.

Interview with Karen Nolan (rooon55) a cyclical Pituitary Patient, part 1, February 21, 2008

Thu, 21 Feb 2008 19:05:59 -0500

Karen (Rooon55), February 21, 2008. Karen's disease started when she was a little girl (7) and she finally got a diagnosis in 2005. She had cycling Cushing's, Thyroid disease, GH deficiency, and Auto immune Alopecia. She believes she is cured after two Pituitary surgeries. A doctor didn't advise Vermont's Karen Nolan (Rooon55 on the boards) that she might be one of the scant 3.5 per million people diagnosed annually with Cushing's disease - another Cushing's patient did.

Mary OConnor (MaryO) interviews Robin Smith (staticnrg), Part 1 - Feb 14, 2008

Fri, 15 Feb 2008 11:52:25 -0500

Mary OConnor (MaryO) interviews Robin Smith (staticnrg), Part 1 - Feb 14, 2008. Robin had Cushing's for over 20 years, at least. Of course, no one figured it out or even put two and two together until her new PCP whom she found in 2004 said "endocrine". She didn't figure it out, either, but at least Robin had a piece of the puzzle and she found http://www.cushings-help.com.

Interview with Alicia, a Cushing's Message Board member who is still testing.

Thu, 7 Feb 2008 21:03:35 -0500

MaryO and Robin interview Alicia, who is still testing for Cushing's.

licia writes "Around the end of my Junior year, probably one of the worst things that could have happened during my 8 years of illness happened, I had severe psychiatric symptoms at school, including psychosis, and was put on a 'students in crisis' plan and sent home for a little while. Being diagnosed as a 'psych patient' would delay my diagnosis for years, most doctors just considered me "crazy."

Mary O'Connor (MaryO) interviews Jayne, Ectopic Cushing's Patient.

Thu, 31 Jan 2008 20:27:25 -0500

Mary O'Connor (MaryO) hosts an interview with Jayne, a Cushing's patient who had pituitary surgeries and a bilateral adrenalectomy before finding the true source of her ectopic Cushing's.

Jayne also had a miracle baby despite her illness, which usually makes women infertile. She was featured in her local paper. Jayne has seen several potential Cushies and spoken to them. Many have contacted their doctors and turned out to have Cushing's Syndrome. She was also instrumental in setting up the first Cushing's Awareness Day and continues to provide Cushing's Awareness tables at local health fairs. One of the patients Jayne urged to check out Cushing's is Laura Zastrow. In the article about Laura, the credit is given to Jayne.

Interview with Judy, mother of two Cushing's patients, and daughter Jess

Thu, 17 Jan 2008 19:43:08 -0500

January 17, 2008: Robin Smith (staticnrg) hosts an interview with Judy, the mother of two Cushing's patients, and her daughter, Jess, a high school student diagnosed with Cushing's. Both children have been diagnosed with pituitary adenomas and are waiting for surgery. Items covered include the difficulty in getting a diagnosis; dealing with family and friends; attending school through the diagnostic process and more.

Cushing's Diagnosis and Symptoms

Thu, 10 Jan 2008 19:28:35 -0500

January 10, 2008: Robin Smith (staticnrg) hosted as Cushing's message board members called in to talk about their fight for diagnosis and treatment. Robin opened the show with a brief explanation of what Cushing's is and what the symptoms are.

Interview with MaryO, Cushings-Help.com founder

Sat, 5 Jan 2008 07:35:03 -0500

January 3, 2008: Listen as Robin Smith (staticnrg) interviewed Mary O'Connor (MaryO), founder of Cushings-Help.com and 20-year pituitary Cushing's Survivor. Mary is a 20 plus year survivor of Cushing's Disease. For those who do not know what Cushing's Disease is, you may want to peruse the Cushings-help website. Briefly, it is an endocrine-related disease caused by a pituitary tumor (also called an adenoma) which causes life-threatening symptoms. Cushing's Syndrome is a similar disease caused by an adrenal or other tumor.

Robin (Staticnrg) explains how diurnal variation and circadian rhythm is useful in diagnosing Cushing's.

Mon, 31 Dec 2007 02:41:55 -0500

Robin (Staticnrg) explains that diurnal variation is one of the ways to diagnose Cushing's. It's typical of those of us who have Cushing's Robin says "If you have pseudo-Cushing's, this variation doesn't happen. A typical/normal person has their highest cortisol around 8 a.m. and it goes down incrementally until it is around zero at midnight. This is true of a person with pseudo Cushing's, too. A person with Cushing's Disease/Syndrome will have the variation shown in the link above. It's important to have this measured. The easiest way to find out is to have late-night serum cortisol measurements (around 11 p.m.) to see what it is at that time of night. If you have elevated late-night cortisols, it indicates Cushing's Syndrome/Disease. One test in the a.m. will not tell you enough information. Stress affects everyone's cortisol. But elevated cortisol over a period of time is due to something other than "stress". And it hurts your body. Even it is intermittent (cyclical), it is very damaging, but harder to diagnose. I hope you will go for more testing. I believe you need to find a doctor who will test 8 a.m. cortisol levels and late-night cortisol levels, preferably by both salivary and serum tests. Also, high Urinary Free Cortisol (UFC) levels are the "gold-standard" for Cushing's and if high, are very indicative. However, many of us don't have high UFC's but do have high salivary and serum levels. You need MUCH more testing to determine if you have Cushing's and to determine if your diurnal rhythm is out-of-whack!"