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Interview with Ferol (FerolV).

May 8, 2008

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Ferol (FerolV)

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.

Keywords: 24-hour ufc, ACTH, adenoma, adrenal insufficiency, artery, blood tests, cholesterol, chronic, clotting, cortef, cortisol, Cushing's, cyclic, diabetes, diagnosis, Discovery Health, dynamic MRI, emdometrial ablation, endocrinologist, ENT, free T-3, Free T-4, hair loss, hearing loss, hirsuitism, hydrocortisone, hypertension, hysterectomy, Loestrin24, Metformin, nausea, nerve, neurosurgeon, night sweats, NIH, OB-GYN, physical, pituitary, plaster cast, prolactin, scar tissue, scoliosis, sinus, skeletal soft tissue degeneration, steroids, surgery, symptoms, testing, tired, thyroid, treatment, urine, uturus, vaginal atrophy, wean, weight

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Interview with Monica (Monicaroni).

May 1, 2008

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Monica (Monicaroni) Listen as Monica (Monicaroni) talks about the challenges she's faced maintaining her music career as a professional violinist 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 am on the road to recovery!

From Monica's bio

Keywords: 24-hour ufc, Addison's, adenoma, adrenal crisis, anemia, antibiotics, B12, cholesterol, cortisol, cushing's, diagnosis, Family and Medical Leave Act, fatigue, fish oil, FMLA, gamma globulin, Gatlin Brothers, genetic, growth hormone, immune system, infection, insurance, IPSS, medications, pituitary, positive attitude, red face, sinus, steroids, strength, surgery, swelling, symptoms, testing, tired, treatment, triglicerides, Vitamin D, wheelchair, wean, weight

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Interview with Kevin, husband of Monica (Monicaroni)

April 24, 2008

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Monica's husband Kevin 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.

Keywords: Addison's, adrenal insufficiency, antibiotics, appendix, attention, autoimmune, biology, BLA, blood, Camp Cushie, caretaker, circus, clinic, control, cortisol, Cushing's, cyclic, Dr. William Ludlam, ENT, grief, infection, internet, love, manic, mental hospital, misdiagnosis, moustache, MRI, ordeal, PICC line, pituitary, pneumonia, pre-diagnosis, radiation, research, scared, sinus, socialized medicine, spiritual, spouse, strength, stress, stress dose, surgery, testing, triage, urine, violin, weight, wheelchair

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Interview with Terry G (Terry).

April 17, 2008

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Terry G (Terry) Listen as Mary O'Connor (MaryO) and Robin Smith (staticnrg) hosted an interview with Terry G (Terry)

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.

Keywords: ACTH, antibiotics, auto immune, biopsy, BLA, blood pressure, bone, buffalo hump, chemotherapy, congestion, cortisol, Cushing's, Dr. Diana Maas, Dr. Hrayr Shahinian, Dr. Ted Friedman, endocrinologist, ENT, eyes, fatigue, Hashimotos, headache, hereditary, hospital, infection, kidneys, MRI, Muscle, muscles, narcotic, optic nerve, osteomyelitis, pain, partial empty sella, Percocet, PICC line, pituitary, RA, rheumatologist, rupture, saliva, sarcoidosis, sinus, Sjogren’s Syndrome, sphenoid, steroids, stretch marks, surgeon, survivor, synthroid, thyroid, tumor, vision, Wegner’s granuloma, weight

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Interview with Steven (sowens).

April 10, 2008

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Steven (sowens) Listen as Robin Smith (staticnrg) hosted an interview with Steven (sowens)

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.

Read Steve's bio.
Read Steve's newspaper article.
Listen to Steve's Archived Interview from April 10, 2008

Keywords: ACTH, adrenal, adrenal sampling, cancer, Cushing's, daughter, diurnal rhythm, Dr. Ian McCutcheon, Dr. Ted Friedman, Dr. William Ludlam, endocrine, endocrinologist, HyperBeta Adrenergic Syndrome, hyperplasia, IPSS, joint pain, MD Anderson, metastatic, MRI, pheo, pituitary, police, surgery, therapy, tumor, wean

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Cushing's Awareness Day Special Chat.

April 8, 2008

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Cushing's Awareness Day Special Chat Listen as 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

Read Jayne's newspaper article.
Listen to Archived Cushing's Awareness Day Special Chat from April 8, 2008

Keywords: ACTH, adrenal, awareness, cancer, carcinoid, computer, charity, cortisol, CT scan, dedication, director, doctors, Dr. Edward Laws, Dr. Harvey Cushing, Dr. Mary Lee Vance, endocrine, exploratory transphennoidal, fertility, flyers, fundraising, glands, Joanne Davis, library, lung, Mary O'Connor, MaryO, media, MRI, National Cushing's Awareness Day, National Institutes of Health, newsletters, newspaper, NIH, non-profit, nurses, Oklahoma, OctreoScan, patient, PayPal, petrossal sinus sampling, pictures, pituitary, PO box, post-op, pregnant, President George Bush, Reader's Digest, Senator James M. Inhofe, surgery, survivor, symptoms, tumor, TV commercial, website, XRays, yard sale

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Interview with Jenn (StaceyJenn).

April 3, 2008

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Jenn (StaceyJenn) Listen as MaryO hosted an interview with Jenn (StaceyJenn)

Jenn (StaceyJenn) has steroid-induced (Iatrogenic) Cushing's. She has taken steroids for secondary adrenal insufficiency. She has also been diagnosed with hypothyroidism, candidiasis, intestinal permeability and 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 she and was transferred to his associate. The associate switched Jenn to medrol. Since then, Jenn has tried to wean off the steroids and has had further difficulties.

Keywords: 4-day rotation diet, accupuncture, adrenal, allergies, anti-fungal, asthma, blood pressure, calcium, candidiasis, chronic fatigue, corticosteroids, depression, dexamethosone, holistic, hydrocortisone, hypothyroidism, Iatrogenic, immune system, inhalers, intestinal permeability, joints, leaky gut, LEEP, Lyme Disease, medrol, mood swings, MSM, nasacort AQ, ovarian cyst, pain, predinsone, probiotic, pulmonary, SINGULAIR, specialist, steroids, stress, swelling, thin skin, thyroid, weight

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Interview with Monica (Monicaroni) and Crystal (Vinesqueen).

March 27, 2008

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Monica (Monicaroni) and Crystal (Vinesqueen) Listen as Monica (Monicaroni) and Crystal (Vinesqueen) talked about their pituitary surgeries and bilateral adrenalectomies (BLA)

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!

Monica is a professional violinist.

From Monica's bio

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

Her blog is available at http://vinesqueen.blogspot.com/

Keywords: 24-hour ufc, ACTH, adenoma, adrenal crisis, bilateral adrenalectomy, BLA, bruising, Camp Cushie, cortisol, cushing's, cyclical, Cyclical, diabetes, diagnosis, Dr. William Ludlam, encapsulated, fat pads, forceps, headache, hump, infection, Ketoconazole, lap-band, medications, message boards, MRI, nausea, Nelson's, NIH, OHSU, PCP, pituitary, radiologist, sinus, Solu-Medrol, steroids, surgery, symptoms, testing, tired, treatment, weight, wean, wheelchair

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Interview with Karen Nolan (rooon55), part 2.

March 20, 2008

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Karen Nolan (rooon55) Listen as Robin Smith (staticnrg) hosted an interview with Karen Nolan (rooon55), Part 2.

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 (Rooon 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. After reading Nolan's post on an Internet message board, another patient suggested Nolan's lab results and symptoms could indicate pituitary disease and that help might be found more that 3,000 miles away at Oregon Health & Science University.

Read Karen's newspaper article Patients Fighting Cushings Disease.

Read Karen's bio.
Listen to Karen's Archived Interview from February 21, 2008

Keywords: Addison's, adrenal crisis, anemic, Auto immune Alopecia, bioidentical hormones, blood pressure, bone, bronchitis, cortisol, cycling Cushing's, diurnal variation, Dr. William Ludlam, endocrinologist, exercise, fatigue, free T3 and T3. pituitary, genetica, GH deficiency, growth hormone, gynecologist, hair loss, Hashimoto's, hormone, HRT, IGF-1, lab, medication, menopause, muscle, naturapath, PCP, professor, saliva, stress fracture, Thyroid disease, weight, Weight Watchers, wig

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Cushing's Diagnosis and Symptoms, part 2.

March 13, 2008

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Robin (Staticnrg) Listen as 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.

Members of the message boards who called in to share were Leslie and Becky

Keywords: adenoma, adrenal, adrenalectomy, cushing's, cyclical, depression, diagnosis, DNA, Dr. Salvatori, dynamic MRI, ectopic, fat, growth hormone, hysterectomy, medications, memory, message boards, pituitary, salivary cortisol, serum, steroids, straie, surgery, symptoms, testing, testosterone, tired, treatment, weight

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Mary O'Connor, Cushings-Help.com founder interview with Robin Smith (staticnrg).

March 6, 2008

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Robin Smith (staticnrg) Listen as Mary O'Connor (MaryO) hosted part two the interview with Robin Smith (staticnrg).

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 cushings-help.com.

Robin immediately went into denial and left for several months until she got so sick she knew she had to have help. She had originally sought this PCP because she had been going to all sorts of doctors for all sorts of things trying to get help. She kept getting sicker and sicker, and it got harder and harder to do anything.

Eventually, after having a bad experience with UVA, she went to see Dr. F. We went through some rounds of testing, had our ups and downs, but he stuck with me, and she got some sky high test results. Robin had to learn when to test because she was cyclical. Oddly enough, Dr. Jho, when she had surgery, insisted she was "classical" Cushing's. Robin didn't care what you call it, she just wanted to get well.

Topics discussed in the Archived Interview:

Q: How are you feeling tonight? I know you just had a GH test. Do you have the results of that yet?

Q: I know last time you told us about a bad experience with that bariatric surgeon. How were you treated by other doctors?

Q: What can you tell us about the early testing where no one put two and two together?

Q: How did you contact surgeons and what led you to pick one?

Q: Many people are oddly excited and happy when they find out that they have Cushing's because it means that there may be an end to their suffering finally. For you, instead of being happy about finally having validation, a diagnosis, and treatment (surgery) you weren't happy. Can you tell us a little about that? How did you work through that - or have you yet?

Q: How Robin shares her journey so others who are walking where she walked will recognize Cushing's and find help.

Keywords: 24-hour ufc, adenoma, adrenal crisis, bariatric surgeon, calcium, collapsing veins, cortisol, CPAP, cushing's, cyclical, diagnosis, IPSS, Dr. Laws, Dr McCutcheon, Dr. Hae-Dong Jho, Dr. Ted Friedman, ENT, fat pads, gastroenterologist, hump, insulin resistence, MD Anderson, medications, message boards, MRI, PCP, pituitary, potassium, salivary, serum cortisol, sleep apnea, stress fractures, surgery, symptoms, testing, tired, treatment, weight

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Interview with Jennifer Shutte (JenS).

February 28, 2008

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Jennifer Shutte (JenS) Listen as Jennifer Shutte (JenS) talked about bilateral adrenalectomy (BLA)

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)

Topics covered:

• option after pituitary surgery has failed but has been a treatment in place of pituitary surgery.
• option in place of pituitary surgery
• Can be unilateral in case of adrenal tumor.
• risk of Nelson’s Syndrome. (Nelson’s Syndrome is characterized by high ACTH , usually over 1000, dark skin and growth of pituitary lesion)
• Generally two types of adrenalectomies
• OPEN 10-12 inch incison on each side
• Laprascopic – number of incisions varies by surgeon – can be 6, 8 12, abdominal area is inflated with inert gas so surgeon has room to move, and adrenals are removed via small instruments.
• Walking after the surgery will help alleviate the pain and dissapate the gas.
• During surgery, patient is given 100mg of solu-cortef or solu-medrol.
• Post-op, one has adrenal insuffiency.
• Adrenals controls salt regulation so increasing that in the diet helps
• The following information is general information – please follow your doctor’s instructions. Doctors have different preferences on replacement hormones.
• After surgery one must take replacement cortisol, usually, hydrocortisone
• A normal body would have its highest cortisol levels in the morning, about half that in the late afternoon, with little to nothing in middle of the night. Dosages are usually divided to mimic the body’s rhythm as closely as possible.
• Of course, post op, the patent is recovering and dosages are higher for a time to aid healing. This is called stress dosing.
• Stress dosing is done when you have surgery, have a fever, are sick, feel nauseous, or at the direction of your doctor. Caution should be applied. Too little cortisol is harmful and as well, too much is harmful as that defeats the purpose of having the adrenals out. This was the hardest part of having the adrenals out – figuring this out. It still is.
• In case you run into trouble, it is a good idea to carry an “emergency kit”. A typical emergency kit contains an injectable form of hydrocortisone, a needle and syringe, alcohol pads, emergency letter from the doctor giving instructions to the emergency room, and a list of phone numbers to call. I also added to my kit a few anti-nausea pills and some hydrocortisone pills.
• Another good idea is to wear a bracelet that identifies you emergency personnel that you have an urgent medical issue. It is best to list if as adrenal insuffiency – steroid dependent – or even that you have had adrenalectomies so that it is clear to them that you need medical attention immediately. Unfortunately, paramedics are not allowed to administer steroids so it would help to train a spouse or friend to give you a shot. This will allow you the time to safely get to the hospital.
• In general, you may also need to take a mineralcorticosteroid called Florinef (although the brand has been discontinued). Salt tablets are also very helpful to keep up energy and hydration.
• I did not begin to lose weight until 4 months afterwards. Post op, I lost my appetite completely.
• Weaning, which is the changing of doses after surgery or illness, is now easy for me but for other BLA patients, has remained difficult.
• Doctors in general target a dose of hydrocortisone between 15-30mg. as being optimal.
• ACTH levels post adrenalectomies will sometimes be higher that normal – sometimes averaging around 400 (6-27). This will darken the skin.

Also discussed were Cushing's patients mental issues.

Keywords: ACTH secreting corticotroph hyperplasia, BLA, Corticol Hyperplasia, cyclical, Dr. Shahinian, Dr. Ted Friedman, Growth Hormone Deficient, Hashimoto's, Hypoparathyroid, infection, motor neuron, Myasthenia Gravis, Nelson's syndrome, neuralgia, nodules, Panhypopituitary, Pituitary, prolactinoma, surgery, Thyroid

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Interview with Karen Nolan (rooon55).

February 21, 2008

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Karen Nolan (rooon55) Listen as Robin Smith (staticnrg) hosted an interview with Karen Nolan (rooon55), Part 1.

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 (Rooon 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. After reading Nolan's post on an Internet message board, another patient suggested Nolan's lab results and symptoms could indicate pituitary disease and that help might be found more that 3,000 miles away at Oregon Health & Science University.

Read Karen's newspaper article Patients Fighting Cushings Disease.

Read Karen's bio.
Listen to Karen's Archived Interview from February 21, 2008

Karen will return March 30, 2008 to conclude her interview.

Keywords: Addison's, adrenal crisis, anemic, Auto immune Alopecia, bioidentical hormones, blood pressure, bone, bronchitis, cortisol, cycling Cushing's, diurnal variation, Dr. William Ludlam, endocrinologist, exercise, fatigue, free T3 and T3. pituitary, genetica, GH deficiency, growth hormone, gynecologist, hair loss, Hashimoto's, hormone, HRT, IGF-1, lab, medication, menopause, muscle, naturapath, PCP, professor, saliva, stress fracture, Thyroid disease, weight, Weight Watchers, wig

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Mary O'Connor, Cushings-Help.com founder interview with Robin Smith (staticnrg).

February 14, 2008

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

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 cushings-help.com.

Robin immediately went into denial and left for several months until she got so sick she knew she had to have help. She had originally sought this PCP because she had been going to all sorts of doctors for all sorts of things trying to get help. She kept getting sicker and sicker, and it got harder and harder to do anything.

Eventually, after having a bad experience with UVA, she went to see Dr. F. We went through some rounds of testing, had our ups and downs, but he stuck with me, and she got some sky high test results. Robin had to learn when to test because she was cyclical. Oddly enough, Dr. Jho, when she had surgery, insisted she was "classical" Cushing's. Robin didn't care what you call it, she just wanted to get well.

Topics discussed in the Archived Interview:

Q: When did you start having symptoms? What were your first symptoms?

Q: What did you do to get to the point of diagnosis? How many doctors did you see? How did they treat you

Q: What kinds of testing did you do?

Q: What happened at the bariatric surgeon? Will he be more careful with his answers next time?

Q: Since you started testing with Dr. Friedman, how long was it until you had your surgery?

Q: How many surgeons did you consult with? Who were they? Who did the surgery?

NOTE: This interview will continue March 14, 2008

Keywords: 24-hour ufc, acne, adenoma, adrenal crisis, bariatric surgeon, boils, broken bones, bruises, calcium, collapsing veins, cushing's, cyclical, diabetes, diagnosis, Dr McCutcheon, Dr. Hae-Dong Jho, Dr. Ted Friedman, fat pads, hump, hyperthyroid, kidney stones, lactation, medications, message boards, MRI, ovarian cyst, PCOS, PCP, pituitary, red face, straie, stress fractures, surgery, symptoms, testing, tired, treatment, weight

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

February 7, 2008

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Alicia 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."

Items covered include what happened to make Alicia realize she was sick; psychiatric diagnosis; symptoms did you have; how the "psychiatric symptoms" were actually symptoms of Cushing’s, too, and how that affects those who are trying to get help with this disease; and more.

Read Alicia's bio.
Listen to Archived Interview February 7, 2008.

Keywords: bi-polar, cortisol, cushing's, diagnosis, infections, manic, meds, message boards, pituitary, pneumonia, psychosis, psychotic, testing, treatment

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Interview with Jayne, a Cushing's patient who had pituitary surgery and a bilateral adrenalectomy before finding the true source of her ectopic Cushing's.

January 31, 2008

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Jayne Listen as Mary O'Connor (MaryO) hosted an interview with Jayne, a Cushing's patient who had pituitary surgery 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 an article about Laura, the credit for Laura's Cushing's diagnosis is given to Jayne.

Topics discussed in the Archived Interview:

Q: What can you tell us about your symptoms, diagnosis, and treatment with Cushing's? And why so many MRIs?

Q: And your miracle baby - was it harder to be pregnant with Cushing's than it was with your first child?

Q: How are you doing now? What has happened since your last surgery for Cushing's?

Q: I know you will walk up to people in the street that you think have Cushing's and start talking to them about it. How do you get the courage to do this? Are people mostly glad you did or are some hostile?

Q: Besides dealing with all your Cushing's symptoms, surgeries and two young children, you also are a fierce Cushing's Advocate. I know you were instrumental in getting our first Cushing's Awareness Day passed. How in the world did you accomplish that?

Q: Besides your letter-writing, phone calls and locating patients in your local stores, you also set up health fairs for Cushing's Awareness. How does one get started doing that? What kinds of things do you do? I know others are interested in setting up tables at health fairs locally, too, and they might be able to use some tips from you.

Read Jayne's newspaper article Baby boy is miracle to mother with Cushing's disease.
Read about a patient Jayne talked to about Cushing's who later had surgery: After years, mystery ills diagnosed
Listen to Archived Interview January 31, 2008.

Keywords: 24-hour ufc, ACTH-producing, adrenal, adrenal crisis, Awareness, bilateral adrenalectomy, cushing's, dexamethosone, diagnosis, Dr. Laws, Dr. Vance, femural, hair, health fair, ketoconazole, liver, lung, medications, Nelson's, NIH, petrossal sinus sampling, pituitary, pregnant, president, senate, straie, surgery, symptoms, testing, transphenoidal, treatment, weight

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

January 17, 2008

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Judy and Jess Listen as Robin Smith (staticnrg) hosted 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.

Keywords: 504 Plan, Americans with Disabilities Act, Anxiety, Bipolar, Cedars Sinai, Crazy, Crohn's Disease, Disabilities, Doctors, Dr. Ted Friedman, Ego, Family, Friends, Gallbladder, Groin, Hair, Hump, Husband, Inferior petrosal sinus sampling, Internet, IPSS, MD Anderson, Online high school, Parent, Periods, Psychological, Salivary, School, Sleep, Suicidal thoughts, Temperature, Therapy, UCLA

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Cushing's Diagnosis and Symptoms.

January 10, 2008

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Robin (Staticnrg) Listen as 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.

Members of the message boards who called in to share were Mertie, JenS and JudyC

Keywords: Accutane, acne, adenoma, adrenal, (BLA) bilateral adrenalectomy, cushing's, cyclical, depression, diagnosis, dynamic MRI, hysterectomy, medications, menopause, message boards, pituitary, pituitary hyperplasia, prolactinoma, straie, surgery, symptoms, testing, tired, treatment, weight

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Interview with MaryO, Cushings-Help.com founder.

January 3, 2008

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Mary O'Connor (MaryO) Listen as Robin Smith (staticnrg) interviews Mary O'Connor (MaryO), founder of Cushings-Help.com and 20-year pituitary Cushing's Survivor.

Intro: Hello, I have with us today Mary O'Connor, founder of the cushings dash help dot com website. 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.

MaryO, as she is fondly called by the members of the support board she runs in conjunction with the website, has been instrumental in educating thousands of people about Cushing's. Through the use of her website and support boards, these same folks have been able to garner support and information invaluable to their diagnosis and treatment. She has been recognized in Forbes Magazine, many newspaper and journal articles, and is a speaker at Cushing's Awareness events. She is married to Tom and has a grown son, Michael.

Mary, I know the listeners would love to hear your story. What can you tell us about your symptoms, diagnosis, and treatment with Cushing's?

Other Topics Discussed:

• Why did you decide to start the cushings-help website?
• What are some of the things that can be found on the site?
• What are the message boards?
• How many members are there on the boards?
• How much work is involved in keeping up the site and the boards?
• How are you doing now? What has happened since your surgery for Cushing's?

Closing: As you can see, Mary is a survivor. Not only has she survived, but she has enabled so many others of us to survive, also. Please stay tuned for more stories from these survivors! For more information, visit the cushings-help website.

Keywords: adenoma, adrenal, arginine, arthritis, aspirin, awareness, cortef, cortisone, cortrosyn, Cushing's, diagnosis, endocrine, energy, Forbes Magazine, gland, growth hormone, gym, insurance, kidney cancer, MaryO, menopause, migraine, nap, NIH, obesity, pituitary, Power Surge, rare, renal cell carcinoma, staticnrg, steroid, stimulation, support board, surgery, survivor, symptoms, thyroid, tired, transphenoidal hyposection, treatment, tumor, website, weight, Weight Watchers

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Diurnal variation in diagnosing Cushing's.

December 31, 2008

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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!"

Keywords: Cushing's, cushing, Diurnal, cyclic, rhythm, salivary, circadian, pituitary, adrenal