Cushing's Newsletter, April 23, 2009

In This Issue

Welcome to the latest Cushing's Newsletter!

Cushie Bloggers

Upcoming Interviews

Upcoming Meetings

Podcasts

Cushing's on Facebook and Twitter

Media - Rare Care for a Rare Disease

Want to Volunteer?

Robin writes: Diagnosing and Treating Cushing's: Presentations by Dr. Theodore C. (Ted) Friedman

Clinical Trial: Women With Pituitary Problems Wanted For A Testosterone Study

Clinical Trials in Cushing’s Disease

Help Keep The Cushing's Sites Going

Endo News: Dr Ted Friedman: What is Pseudo-Cushing's ?

Endo News: Dr Ted Friedman: Why Diagnosis is Less Important in Endocrinology in the 21st Century

Endo News: How many people are aware that April 8th is National Cushings Awareness Day???

Endo News: Kanzius left hope

Endo News: MASEP gamma knife radiosurgery for secretory pituitary adenomas: experience in 347 consecutive cases

Endo News: Surgical Versus Conservative Management for Subclinical Cushing Syndrome in Adrenal Incidentalomas: A Prospective Randomized Study

Endo News: Merits and pitfalls of mifepristone in Cushing's syndrome

 

New and Updated Bios
Bios submitted after April 18 have not yet been formatted for the web.

Add or Update your bio here

Names in parens are user names on the message boards

Latest Cushing's Help Newsletter: March 12, 2009

New Bio April 18, 2009
Anne (kittiefoster) is from San Lorenzo, California. She is not yet been diagnosed but has had multiple symptoms of Cushing's for years. She will see an endocrinologist on May 15

New Bio April 10, 2009
Debi (debkelly) is from Palmdale, California. She is not yet diagnosed but has a lot of symptoms.

New Bio April 6, 2009
Betty (bettyd) is from Cedar Hill, Missouri. Her daughter has been in the diagnostic process of Cushings for several months. It was also suggested that she might have "cyclic" Cushings.

New Bio April 6, 2009
Yol is from Toronto, Canada. Her 12 year old daughter is going through Cushing's testing.

Updated Bio April 5, 2009
Beth (EFM1062) is from King of Prussia, Pennsylvania. She is not yet diagnosed with Cushing's but she has many symptoms and is testing. She has been diagnosed with Hashimoto's hypothyroid. Beth updated her bio April 5, 2009.

New Bio April 1, 2009
Sandra (sandra b.) is from Hammond, Louisiana. She had Cushing's in 2002 and is still affected by high cortisol levels. She had surgery to remove an adreno cortical carcinoma..

New Bio March 30, 2009
Tami (TamiinGA) is from Calhoun, Georgia. In May of 2008 she was diagnosed with 2 tumors on her left adrenal gland. She is on her 4th endo who just recently diganosed her with Cushing's.

New Bio March 26, 2009
Lisa Lee is from Swansea, Wales, UK. She was brought up a boy because of a rare medical condition called ‘congenital adrenal hyperplasia’ (CAH).

New Bio March 26, 2009
Jada (Jada71) is from Baton Rouge, Louisiana. She has been diagnosed with pituitary Cushing's and has been to see Dr Ludlam. A local endo told her: "You don't have Cushing's Disease, you have psuedo- Cushing's caused by insulin resistance." Jada asked how he knew this and he replied, "Because it's too rare and too hard to diagnose."

New Bio March 25, 2009
Leslie is from Chislehurst, Kent, United Kingdom. She was diagnosed with an adrenal tumour 15 months ago, then eventually diagnosed with Cushings and the adrenal gland and tumour were removed in July 2008. The other adrenal gland was found to be not functioning and she now hydrocortisone dependant and classified with secondary addisons. She suffers from various Cushing's problems.

Updated Bio March 24
Elisabeth (eals) is from Nanaimo, Canada. She updated her bio after pituitary surgery with Dr. Akagami at Vancouver Regional General Hospital on March 3, 2009

New Bio March 20, 2009
Jennifer (JWOLF74) is from Connecticut. She was diagnosed with PCOS about 10 years ago and had gastric bypass surgery 7 years ago. She is currently testing high and has been referred to a new endo.

New Bio March 16, 2009
Christina (happygirl) is from West Point, UT. She was diagnosed March 2009 with a pituitary source of her Cushing's Disease.

New Bio March 14, 2009
cris (cris) is from Michigan. She has finally been diagnosed with pituitary Cushing's after more than 20 years of trying to find out what's wrong. She has also been diagnosed with Hashimoto's Thyroiditis; Unstable Hypothyroidism;Hyperparathyroidism; Hypocalcemia; Severe D (hormone) deficiency; Adult GH Deficiency and Pituitary Tumor in MRI 2009.

New Bio March 12, 2009
Xchicagoan (xchicagoan) is from Huntersville, North Carolina. She is not yet diagnosed with Cushing's but has many symptoms including Adrenal Hyperplasia and thyroid issues.

New Bio March 11, 2009
Maryanne is from Sidney, BC, Canada (Vancouver Island). She has tumors on each adrenal gland and an MRI showed a 2 mm pituitary tumor. She is taking Ketoconazole until surgery

New Bio March 9, 2009
Jen (AuntieNoWay) is from Seattle, WA. All it took was one blood test and she was diagnosed. I had a tumor on her left adrenal gland that was causing her left adrenal gland to over produce the hormone cortisol. She was diagnosed but they waited 2 months to get her in for surgery and during that time her weight jumped dramatically from 180Lbs to 239Lbs and she was sicker than ever.

 

New and Updated Bios

Now I know...

..why I was told to stress dose with illness. I played hero with bronchitis and only took 5 extra here or there. Tried to fight it off with no antibiotics either. Just call me joe cool .

Felt worse than any day with Cushing's. Ended up going to urgent care last Friday and stress dosing the three days like I should have. It was a rough few days but I am feeling human again and on my normal dose.

Read the entire post at http://www.shouldhaveseenit.com

How my mind works waiting for a phone appointment

Waiting for a phone call - anytime between 9 p.m. and 10:30 p.m. (CST). How nerve wracking, it's after 9, so probably don't have to worry for about 20 minutes at least. We aren't the first appointment for the night.
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Maybe I shouldn't of eaten that hamburger, tasted like cardboard anyway. Ten minutes later - feel a lot like I need to throw up. I have no idea what to expect from this phone appointment. And now it's almost twenty after, I'm getting more nervous.
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Maybe I won't answer the phone, then I won't know if the answers aren't what I want to hear. This, more so than any other appointment feels like it will be life changing, Whether good or bad I don't know. Depends on whether there are any diagnosis given out tonight.
----------------------------
This is worse than waiting for a date to show up (back in my dating days)
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Nothing holds my attention, how many games of solitaire can I play?
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Almost 9:30, was the first appointment a twenty minute or thirty minute phone appointment? No way to know. Wish I was a long distance mind reader!!
-----------
Maybe I'll hyperventilate instead of puking.
-------
I don't remember being quite this nervous before my other phone appointments. I guess I feel like more rides on this one. Bill is in pretty bad shape.
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It's 9:40, maybe I'll go to sleep and forget the whole thing!!
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Heck, I don't think I'll be able to talk anyway, I feel like I can't even breathe. Wonder if Dr. F knows how much he holds in his hands (head?)
---------------
Geeze, my arms feel like they don't work. like not connected to my brain.
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9:50
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Wish there wasn't food commercials on TV, makes me feel ill
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10:00, maybe he won't call, maybe I don't care anymore, we can just live in limbo forever, at least I know how limbo works, Something will change with this phone call
-------
10:10
----------------
Will either of the kids be re diagnosed? What if they are re diagnosed and Bill doesn't even get a first diagnosis? What if one J is diagnosed and the other isn't? How will that affect things? Why can't I just quit thinking?
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10:15, I look at the clock too often
----------------------
we always seem to be the last phone call of the night, wonder how he decides the order of the appointments?
----------------------
10:20 think I can turn off my brain? Quit thinking about when the phone will ring.
-----------------

Just read something I found through Google
Cushing’s
syndrome is a hormonal disorder caused by prolonged exposure of the body’s
tissues to high levels of the hormone cortisol. Sometimes called
hypercortisolism, Cushing’s syndrome is relatively rare and most commonly
affects adults aged 20 to 50. People who are obese and have type 2 diabetes,
along with poorly controlled blood glucose—also called blood sugar—and high
blood pressure, have an increased risk of developing the disorder.

Found it here
10:26, tired of being on pins and needles. I really might be throwing up by the time he calls! I hate this. (not saying anything bad about Dr. F, just saying I hate this all) It messes with your mind.
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10:28, I think Justin is the only one not waiting. I don't think he knows the appointment got changed and is tonight.
----------------
10:29, okay, back to more solitaire. Does everyone feel like this when waiting for their phone appointment?
-----------------
Oh good MASH is on now. Must mean it's 10:30
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I'm feeling sick again, maybe it really isn't going to happen. It's 10:40. I know they don't run exactly on schedule but it's starting to reminded me of the time I stayed up until about midnight thinking maybe the first appointment ran very long. Found out the next morning through email, it had accidentally never been scheduled.
---------------------
10:47, maybe I really should give up hope
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10:52 - oddly I'm not even nervous anymore. I really don't think he'll call. But now I'm dissappointed. No answers this weekend. 11:00 - just checked Lynne's email again to make sure I had the date right. I did.
---------------
11:06 - guess I'm still holding out a little hope or I wouldn't still be watching the clock. Now my arms feel like lead and like they don't want to move. I wonder how we are so lucky to have this happen twice. Now how long before I can have a phone appointment? I got moved to today (HA) because of a cancellation, so I'm sure mine that was originally scheduled for next week has been cancelled. Wonder if it's still available. Bill promised his boss he would have something (good, bad or in between) to report after tonight. Guess not. They already wonder how this can be taking so long. They just don't understand. I'm guessing he is more disappointed than I am.
-------------------------
I was wrong - he called. Bill has Cushng's!!!!!!!!!!! (I knew it) Pituitary source. Also thinks he has aldosteronism. So will need surgery for both. Needs to get another CT of the abdomen. Kids need to get another MRI and send to McC. Both will start Keto and take some hydro. Need to get a baseline liver panel. Justin has been in a low lately (I think) so he needs to get an a.m. cortisol. Bill adds another bp med. I can start setting up pit surgery for Bill. With the kids we'll see what the new MRIs show. If McC sees tumor then it will probably be pit. We discussed BLAs for the kids. In the end it sounds like the type of surgery would be our choice, he wouldn't push. Too much to think about now and appointments to set up. Too bad it's not Monday morning and I could get the show on the road. I think I'm too keyed up to sleep. YES!!!!! Bill is diagnosed and the kids can go back to surgery!! Dr. F said we should ask if McC gives a family discount!!LOL

Cushing's Newsletter February 26, 2009

In This Issue

Welcome to the latest Cushing's Newsletter!

What's Happening at the Organization?

Cushie Bloggers

Upcoming Interviews

Upcoming Meetings

Podcasts

Cushing's on Facebook and Twitter

Media - Amazing Kim

Want to Volunteer?

Clinical Trial: Women With Pituitary Problems Wanted For A Testosterone Study

Clinical Trials in Cushing’s Disease

Help Keep The Cushing's Sites Going

Adult Pituitary Conference in Las Vegas

Endo News: GH replacement in patients with non-functioning pituitary adenoma (NFA) treated solely by surgery is not associated with increased risk of tumour recurrence

Endo News: Diagnosis of rare disease brings area woman hope

Endo News: Pasireotide showed promise as an effective pituitary-targeted treatment for Cushing’s disease

Endo News: Corcept Therapeutics Announces Positive Results From Study of CORLUX

Endo News: King size! Henry VIII's armour reveals he had a 52in girth - for which he paid a terrible price

Endo News: Repeated transsphenoidal pituitary surgery (TS) via the endoscopic technique: a good therapeutic option for recurrent or persistent Cushing's disease (CD)

 

 

New and Updated Bios
Note that there are still 3 more current bios to be added to this list.

Updated Bio February 22, 2009
Joselle (Jo) is from Fredonia, New York. Although she didn't present as a typical Cushie, a doctor gave her a cortisol suppression test and she was diagnosed with a pituitary tumor. Joselle was the subject of a Live Interview in the Cushing's Help Voice Chat / Podcast series. Archives are available. Joselle was the subject of a newspaper article February 22, 2009.

New Bio February 19, 2009
Frank (franbony) is from New York. After 2 years of know knowing what was happening, she started testing and is on the long road to finding out what is wrong.

New Bio February 18, 2009
Shawna (cushings in colorado) is from Ft Collins, Colorado. She had robotic surgery July 19, 2007 to remove her adrenal gland. She lost 80 pounds in 5 months.

New Bio February 17, 2009
Amber (AmberC) is from Pittsburgh, Pennsylvania. The diagnosis of Cushing's due to a pituitary adenoma was made after MRI in June of 2007. Her first surgery was in September of 2007. She is now seeking the advice of a specialist to help get pregnant and have a baby before going back for her fifth surgery!

New Bio February 16, 2009
Sandy (jsdewys) is from Holland, Michigan. She was diagnosed with steroid-induced Cushing's and has many symptoms.

New Bio February 13, 2009
Lori (Frog) is from Longmont, Colorado. She was diagnosed with Cushing's Syndrome in December 2008 but despite all the testing, her doctors have yet to locate the source.

New Bio February 11, 2009
Lori is from Chester, South Dakota. She is not yet diagnosed with Cushing's but has had fibromyalgia for 6 years.

Updated Bio February 9, 2009
Heike (PeeQueen) is from Tallahassee, Florida. Heike has decided to go through another, third, transsphenoidal surgery scheduled for August 22, 2006. Her second pituitary surgery was June 28, 2006. It was not successful and she had to choose between a bilateral adrenalectomy or stereotactic radiation. Her first surgery was in Hamburg, Germany 13 years ago and was exploratory. She developed Diabetes Insipidus after her third surgery. She has added pictures to her bio. Heike updated her bio again after starting on Synthroid for thyroid issues.

New Bio February 8, 2009
Lorrie (lorrie) is from St Louis, Missouri. She is not yet diagnosed with Cushing's but she has had many symptoms and is testing.

New Bio February 6, 2009
Melody (Melody73) is from California. She is a newly diagnosed Cushing's patient but she doesn't yet know the origin. She has had a pituitary MRI and is awaiting the results.

Updated Bio February 5, 2009
Coleen (EyeRishGrl) is from Philadelphia, Pennsylvania. She has pituitary Cushing's and PCOS. Coleen updated her bio in February 2009 after her pituitary surgery. She has secondary adrenal insufficiency (Addison's disease) now.

New Bio February 3, 2009
Melesa is from Chapleau, Canada. Her 23 year old daughter is being tested for Cushing's and she Melesa doesn't know what to expect.

New Bio February 2, 2009
Heather (HeatherKY) is from Kentucky. In 2002, she developed a case of Bell's Palsy and was put on prednisone. In December 2008, after many years of feeling hopeless and alone, she was diagnosed with cyclical Cushing’s Disease caused by a pituitary tumor. Transphenoidal pituitary surgery has been scheduled for February 2009.

New Bio February 1, 2009
Tammie (makeitgreen) is from Hemet, California. She has been diagnosed with PCOS and has taken glucophage and clomid. She is still not feeling well and is seeking a diagnosis to help with her many symptoms. She will be the guest speaker in an interview February 26, 2009.

New Bio January 30, 2009
Michelle (Map820) is from Brookfield, Connecticut. She is not yet diagnosed with Cushing's but she has many symptoms.

New Bio January 30, 2009
Ellen (esg31) is from Wilmington, Delaware. Her son has been struggling for almost a year with unexplained physical and psychological symptoms. He has been tested for thyroid issues, Cushing's and pheochromocytoma.

New Bio January 28, 2009
Michele (blakeanddbrycemom) is from Wentzville, Missouri. She has suffered from a variety of mysterious symptoms including hydrocephalus. Two MRIs show a abnormal pituitary and a meningioma.

New Bio January 27, 2009
Michelle is from Hamilton, New Zealand. She was diagnosed with Cushings Disease when she was 21. She had a recurrence 3 years later. Her ACTH levels are high again.

New Bio January 25, 2009
Gina (ginapooh1969) is from Franklin, Massachusetts. She isn't sure if she has Cushing's but has many symptoms and a pituitary tumor.

New Bio January 24, 2009
Sarah (saskgurl26) is from Biggar, Saskatchewan, Canada. She was originally diagnosed with PCOS but doctors found what they thought was a prolactinoma. She was finally diagnosed with Cushing's and had pituitary surgery November 12, 2008.

New Bio January 22, 2009
Sara (SaraR) is from Birmingham, Alabama. She is not yet diagnosed bus has been suffering from Cushing's symptoms for over 2 years.

 

New and Updated Bios

Part 2: Pituitary Patient Symposium at Swedish

Date:   Saturday, May 9, 2009

Location:  Swedish Medical Center, Cherry Hill Campus

550 17^th Avenue

Seattle, WA 98122

Time:   9:00 a.m. – 5:00 p.m. 
Fee:   $50 per person (Breakfast, lunch and snacks provided;

(scholarships available)

You’re invited!

Please join us for the second annual Seattle Pituitary patient symposium, “A Patient’s Road Map to the World of Cushing’s Syndrome.” Experts from around the world will lead a day-long educational seminar and discussions focusing on Cushing’s syndrome.

There will also be opportunities for you to share your thoughts and experiences with other patients.

Register Online!
http://www2.eventsvc.com/swedishhealth?cat=Neurology

Background Information on Cushing’s

Cushing’s syndrome is a hormonal disorder caused by prolonged exposure to high levels of cortisol on the body’s tissues. Also known as hypercortisolism, Cushing’s syndrome is somewhat rare and most commonly affects adults aged 20 to 50. Cushing's disease is a form of Cushing's syndrome, caused by a hormone-secreting pituitary tumor. About 10 percent of clinically significant pituitary tumors secrete this excess hormone. This elevated hormone level in turn stimulates the adrenal glands to produce excess cortisol. This disease process is called Cushing's disease, named after the famous neurosurgeon, Harvey Cushing.

Location/Parking/Directions

http://www.swedish.org/blank.cfm?id=202

For more information: 206-386-2502

Pituitary Patient Symposium "A Road Map to the World of Cushing's Syndrome" in Seattle, WA.

I wanted to let you know about our upcoming patient symposium which will be held in Seattle, WA on Saturday, May 9, 2009.

The second annual pituitary patient symposium title is "A Road Map to the World of Cushing's Syndrome" and will be held at Swedish Medical Center's Cherry Hill campus in Seattle, WA.
We have eight faculty from around the country (1 international) that will be presenting to patients, and will also be speaking at a CME-accredited physician symposium the same day.

More info to follow.

Diagnosis of rare disease brings area woman hope

From http://www.observertoday.com/page/content.detail/id/519546.html

By JOSELLE SYRACUSE

Like countless others I have had an ongoing struggle with being overweight my entire life. So, it was no great surprise at age 44 that I decided to attempt losing weight once again.

This time was different. I joined Weight Watchers in September 2004. Aside from obesity I still had relatively good health. I didn't want to jeopardize that. In less than two years I lost 100 pounds. I felt wonderful exercising at least three times a week. I still wanted to lose 25 to 50 pounds more but that wasn't to happen. I maintained the weight loss until November of 2006. Gradually, I started putting weight on with no apparent cause. I wasn't eating any differently and continued to exercise. By February 2007 I had put on 40 pounds. It was then that I began to notice heaviness in my legs when I climbed stairs and walked at even the slightest incline. This muscle weakness progressed to the point of having difficulty standing from a seated position. The weakness increased and the weight piled on, despite healthy eating and exercise habits. My body was betraying me.

Other "symptoms" were increasingly more noticeable. Facial hair growth that started as an annoyance in about 2000 took on a life of its own demanding that I shave my face daily. This abnormal hair growth also covered my back. I was plagued with adult acne, menstrual irregularities and constant fatigue. By August 2007 I had put on about 80 lbs. My doctor ordered all sorts of blood and diagnostic tests zeroing in on the specific symptoms and ongoing complaints. Never once did he ignore my lament. Every test result would confirm my "good health". Why then did I feel so horrible?

By December of 2007 I was about to throw in the towel telling my doctor that perhaps it's all just my age. I must be pre-menopausal. I guess I just have to deal with it. He disagreed. My test results did not indicate such hormonal changes. I will never forget his words: "You know your body and you know that something isn't right. We are going to keep looking until we find out what it is". He then suggested "we" check for Cushing's Disease. A very specific blood test, a Dexamethasone Suppression test was ordered. This was the test that was to give me my life back thanks to Dr. Anthony Bartholomew of Fredonia.

The very high levels of cortisol in my body suggested Cushing's Disease, but the cause was yet to be determined. (Cushing's Disease is usually caused by a pituitary tumor, whereas Cushing's Syndrome is caused by an adrenal tumor. Not all pituitary tumors cause Cushing's Disease, either). In the meantime I developed hypertension. Finally, in May of 2008 I had an appointment with an endocrinologist, Dr. Howard Lippes in Williamsville. Given the rarity of the disease and the fact that I didn't "look" like the typical Cushing's patient, Dr. Lippes was convinced a mistake had been made and ordered several more diagnostic tests, some repeats of what was already done. Lo and behold, it wasn't a mistake. I had Cushing's Disease most likely caused by a pituitary tumor. In June I had a brain MRI which detected a pituitary micro-adenoma about 8mm in size. There is no treatment other than surgery. The tumor which secretes ACTH, the hormone that signals your adrenal glands to produce cortisol, must be removed as the condition is ultimately life-threatening often causing diabetes and cardiovascular disease. Cortisol occurs naturally in your system, but too much wreaks havoc on your body.

In July I was referred to Dr. Robert Fenstermaker and Dr. Nestor Rigual both of Roswell Park Cancer Institute in Buffalo. Pituitary tumors of this type aren't typically cancerous, but these surgeons specialized in this particular kind of surgery.

On Aug. 1, 2008, I had endonasal transphenoidal surgery to remove the tumor. Quite simply, they went through my nose! It is still considered neurosurgery given the pituitary gland's proximity to the brain. This delicate surgery was a success!! The entire tumor was gone. I was immediately placed on hydrocortisone. Yes, more steroids!! This was necessary until my adrenal glands functioned normally again. I was gradually weaned off the hydrocortisone taking my last dose on Christmas Eve 2008.

Fast forward to Jan. 19, my most recent visit to my endocrinologist. Normal cortisol levels are evidence that my adrenal glands are working properly. I'm officially cured of Cushing's Disease!! However, the recovery period hasn't been easy which isn't unusual. I've been told that it could take six months to a year to feel good again. Only recently am I seeing improvements. I am happy to report that I can honestly say I feel better and mean it. The hair on my back is gone and minuscule on my face. I'm starting to lose weight again and my muscles are getting stronger thanks to the physical therapy program I follow provided by Dr. David Root of Dunkirk. I can now stand up without preparing for the event!

My reason for writing this article is not to thank my wonderful doctors though I will always be eternally grateful. I just wanted to share my experience thereby spreading information about this sneaky, nasty, so-called rare disease. I think my doctors would agree that it really isn't all that rare. It's just under or misdiagnosed given the myriad of symptoms.

Does this sound like you or someone you know? Don't give up. If you are not as fortunate as I to have a doctor who listened, keep changing until you find someone who does.

Joselle Syracuse is a Fredonia resident who teaches in Jamestown. 

Read her bio on the Cushing's Help website

Listen to her live Cushing's Help Interview