January 31, 2007

In This Issue

Search the website:

New on the Message Boards:
•  Kate's Top Ten List of Pituitary Surgery Observations (In No Particular Order)

Cortisone:
• The other steroid

Growth Hormone:
• Merck Serono Launches Easypod, First Electronic Growth Hormone Injection Device
- easypod(R) Was Designed to Improve Ease of Usage, Reliability and Convenience

General Health
Polycystic Ovary What? 2007-Jan-26 - Update on Polycystic Ovarian Syndrome
Still A Mystery. Why is it Polycystic Ovary Syndrome (PCOS) the most common hormonal problem in women, affecting up to 10% of the female population worldwide still considered by many a rare disorder?
Newest site features: bios, Helpful Doctors
US Postage Stamps for Cushing's Awareness
Order Cushing's Awareness Silicone Bands for yourself, a family member or donate to a Cushing's patient at NIH
Upcoming Meetings: Washington, DC and Toronto ENDO 2007.


Also on the website:

Pictures from Past Meetings:
April 8, 2007, Petitions on the message boards to have April 8 be declared as Cushing's Awareness Day again this year. This date was chosen because it was Dr. Harvey Cushing's Birthday. More info here »

Pictures from the Pittsburgh, PA Christmas Dinner, December 13, 2006
Click here »

Pictures from the April 5-8, 2006 CUSH Cushing's Awareness Day Medical Forum, held in Oklahoma City, OK
Click here »

Upcoming Meetings:
MAGIC Foundation (Growth Hormone) 3rd Adult Educational Convention, February 9 to 11, 2007, Las Vegas, NV More info here or call 708.383.0808 for details.»
June 2-5, 2007, ENDO 2007, Toronto, Canada, Metro Toronto Center.

Recent Donations:

click for fullsize graph

• In honor of:
   Dr. Jennifer Pecina
Other donors
To make a donation
Donations cover...

News:
Dr. Theodore Friedman from Charles R. Drew University, Division of Endocrinology is currently seeking patients to participate in a research study of pituitary dysfunction. More info.
• The message boards now number over 5,600 participants.
Search Tool. Use this tool to search this site, PubMed, NIH Clinical Trials or any other website. More sites to be added soon.
CUSH Cuisine! $10.00 each, including shipping.
More info »
Guest Transcripts »

Latest Media:

Sam who has been on The Mystery Diagnosis TV Show (Discovery Health) has been invited to appear on Dr. Phil taping possibly as soon as Thursday January 25th. More info as it becomes available.
Helpful Books (pituitary):
Art Russell shares the powerful story of his struggle with Cushing's Disease.
October 18, 2006 Obese from Secret Disease (ABC News) (Jaimie on the boards) Read this article »
Jun 17, 2006 Student hopes to rebound from brain surgery Rare disease caused teen to double weight in a year Read this article »
May 21, 2006 Rare disease treated at OHSU (sowens on the boards) Read this article »
May 15, 2006 Patients Fighting Cushings Disease (Rooon on the boards)
Read this article »
MedScape News

Newest Site Features:
Read the Current Newsletter »
Packing Suggestions For Surgery
Talk to Your Doctor
New Diabetes Drug Successfully Used to Treat Pituitary Tumors
New Approaches to Managing Tumors of the Pituitary Gland Offer Patients Hope.
Corticosteroid Converter.
More info on Adrenal Crisis.
Helpful Hints for dealing with Cushing's Symptoms. The first ones are here.
Add your Helpful Hints
US Cushing's Postage Stamps to promote Cushing's Awareness. See a sample here.
Cushing's Bracelets to promote Cushing's Awareness. Order the bands here.
Reviews of this site

Testing:
Midnight Salivary Cortisol Versus Urinary Free and Midnight Serum Cortisol

Videos and Webcasts:
Video: Transnasal Pituitary Surgery
Webcasts from NIH Pituitary Symposium and Endo 2004.
Videos on several topics of interest to Cushing's Patients:
Jaimie and others from the message boards on TV
• Transsphenoidal Pituitary Surgery
• Laparoscopic Bilateral Adrenalectomy (BLA)
• Transsphenoidal Pituitary Surgery
A Young Woman's Battle with a Hidden Enemy: Cushing's Disease
Top Five Webcast feature updates twice daily and highlights the most popular webcasts viewed each day.
New pages and updates

Doctors and Hospitals:
The US Helpful Hospitals list has been updated

Helpful Doctors:

New Doctors added to
East Setauket, NY
Erie, PA
Astoria, OR
Portland, OR
Boston, MA
Toronto, Ontario, Canada
Norwalk, CT
Pennsylvania
Lucknow, India
Moorooka, Queensland, Australia
Budapest, Hungary

Doctors updated:
Dr. Roberto Salvatori, Johns Hopkins, Baltimore, MD
Dr William Ludlam has moved to Seattle, WA from Portland, OR.
More info here
Dr. James Neifing, Portland, OR

Newest Bios:
Add or Update your bio here
Newest bios,
listed by type of Cushing's
Susan
Cathy R
Sheila Mary
Lori
Heather D
Siobhan
Sonda
Stella
Marsha
Debbie
Frank
Barb F
Mary Jo

Updated Bios:
Newly updated bios, listed by type of Cushing's
Tricia Francis
Tracie
Diana
Judi
Jessica M
JoAnn (In Memory)
MaryO

In Memory
Sue Ann Koziol (SuziQ),
CUSH Founding President

Sue was a very special friend to Cushies world-wide. We will remember her always.

• To light a candle or post a tribute for Sue, please click here »

• To read more about Sue's journey, please click here »


Welcome to the Cushing's Help and Support Newsletters!

If it appears that the entire newsletter is not here, or you prefer to read the HTML version of this newsletter on the Internet, it is available here: http://www.cushingsonline.com/newsletters/1-31-2007.htm.

Read archived past newsletters here: http://www.cushingsonline.com/newsletters/newsletters.htm

To make sure you continue to receive Cushing's e-mail in your inbox (and that it is not sent to bulk or junk folders), please add CushingsSupport@aol.com to your address book.

Unsubscribe information appears at the bottom of this, and every, newsletter.

Cushing's Awareness Day! April 8, 2007


What Can *YOU* Do to help?

Sign Amber's Petition. www.ipetitions.com/petition/CushingsDiseaseAwareness

Amber writes:
Thought I would explain what this petition can do....

First of all, it adds power and substance to our efforts to have a Nationally recognized day if we have an extensive, following.

Second, this petition and all the signatures can be printed and sent to a Senator, politician, or medical professional that may be will to take on the cause.

Third, this petition and its list of signatures are IDEAL for releasing to the press and media for coverage and will assist GREATLY in getting the word out there.

It is so simple. The petition has a place to add your name and a comment if you want. PLEASE take a moment to sign and formward it on to all the people in your address book, your friends and family.

We all get forwarded messages all the time, but this one is dear to our hearts and can make a differnce! WHATS STOPPING YOU!?

PLEASE SUPPORT OUT EFFORTS TO RAISE AWARENESS! YOUR HELP IS NEEDED AND IT IS SO EASY!

CherylF, CUSH Vice President suggests:
I contacted Senator Inhofe's (OK) office recently, and he is happy to reintroduce the Cushings Awareness Day Resolution for April 8, 2007.

Please contact your US Senator's office and ask them to support this Resolution. I'm not sure when Senator Inhofe will try and contact other senators but if you send a letter soon, and call your senator to let him know your letter is coming, and that Senator Inhofe is going to reintroduce the Resolution, it will truly help.

Last year the Resolution was introduced, but to my understanding, only one senator-another from Oklahoma was the only one to contact Senator Inhofe's (Okla) office to co-sponsor the Resolution.

If you send a letter requesting it, you might also request that a reply be sent back to you . Please try to send the letter in the next two weeks if possible.

Last year we had a small Conference in OKC celebrating the passing of the Resolution, and there is some information on that conference on the CUSH website (CUSH.org) , and I believe on this one as well. We won't be having a specific conference in OKC, but ask that you bring awareness in your own states, communities as you can. Last year a TV station in OKC aired a small segment about the conference & Cushings Awareness Day, as did one in Nebraska- with Autumn as the contact person.

As the OK CUSH rep as well, I might have something for those around the OK area, a small get together if anyone is interested...more like a dinner or luncheon so we can visit each other. You can always contact me for more info if you'd like...together we can make a difference!

cheryl1957ann@sbcglobal.net
Thank you in advance, Cheryl Farrar- CUSH Vice President

Contact your Senator Print out a sample letter to send to your congress person or senator or download it in Word format.

More information here

Follow Jayne's Lead. She writes:

Of course, I'll be supporting the day and writing letters and emails and making phone calls. I hope to find us a celebrity ribbon wearer. Something else I am working on is national TV recognition with the major networks and National publications. You can email them as well on their "contact us" info. Contact the hosts of the show and the producers to mention April 8th and Cushing's Awareness.

I am going to find out information on getting money (grant) to publish magazine adds/articles for the April editions, if not this year then for next year. I know they are probably being printed, but I just thought of this idea. My local paper will run a small 2x3 ad for starting at $300. I want the whole page! I thought about having a yard sale to raise money to put in an ad, but doubt that I'd make enough. Oh Well!

Something else I thought about is getting a chain pharmacy to post cushings info for that week prior to the 8th. Medical school journal/papers can also be contacted. I know I must have emails over 100 doctors last year on the 7th (once I know that it had passed). I'll be setting up a booth at the women's Forum again this year. I hope to set up at some health expo's and at the local Hospital or at least make/pass out flyers.

US Cushing's Postage Stamps to promote Cushing's Awareness. See a sample here.

• Wear Cushing's Bracelets or T-Shirts to promote Cushing's Awareness. Order the bands here.. Cushing's Awareness T-Shirts and other products are available here: Cushie GiftStore.

Post your ideas and what you have done here: http://cushings.invisionzone.com/index.php?showtopic=19173


Last year:

For Immediate Release:                                                                   

                    April 6, 2006                                                                                                          

INHOFE DESIGNATES ‘NATIONAL
CUSHING’S SYNDROME AWARENESS DAY

More info here »


April 8, 2006, the Cushing's Understanding, Support & Help Organization (CUSH) petitioned in the USA to have April 8 be declared as Cushing's Awareness Day. This date was chosen because it was Dr. Harvey Cushing's Birthday. More info here »


The Cushing's Awareness Day Proclamation, from http://thomas.loc.gov/cgi-bin/query/z?c109:S.RES.423:

Designating April 8, 2006, as `National Cushing's Syndrome Awareness Day'. (Agreed to by Senate)

More info here »

CUSH Cookbooks are here!

The CUSH Cookbooks are only $10.00 each including shipping and handling.

Any profits will go to help bring awareness for Cushings. Thank you!

The cookbooks have about 169 recipes, so it isn't a huge cookbook, but one that includes contributions from many Cushing's message board members.

To purchase a cookbook send a check to:
CUSH
PO Box 1843
Florence, AL.
35631-1843

please indicate on your check "Cookbook" or include a note with payment.

You can also purchase cookbooks through Paypal. Please indicate that the payment is for "cookbook."

 

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Be sure that your correct mailing address is included with payment along with a contact phone number in case we have questions concerning your order.

If anyone has any questions concerning cookbook payments please contact CUSH Treasurer Cathy Gifford at CUSHOrg@aol.com

Dr. Theodore Friedman from Charles R. Drew University, Division of Endocrinology is currently seeking patients to participate in a research study of pituitary dysfunction. More info.


Coming Soon!
Cushing's Podcasts coming soon! What would you like to hear in a Cushing's Podcast?

These are the podcast ideas that have been posted so far:

  • What is Cushing's?
  • So, you think you may have Cushing's?
  • Where do you find help if you suspect Cushing's?
  • Let's talk about the symptoms
  • What's the difference between Cushing's Disease and Cushing's Syndrome
  • Success stories
  • Doctor's point of view... How to best present information to them, help them help us...
  • When the best testing time would be and the differences between the tests.
  • How to compile a journal
  • What it is like to visit an out of town doctor
  • weekly recap of top 10 topics from the boards.
  • Bios, possibly read by the person
  • Cushing's news (sometimes hard to come by!)
  • Interviews with patients
  • Interviews with doctors
  • Would you be willing to interview your doctor/surgeon?
  • Listener comments?
  • Other ideas?

Some of the podcasts I listen to have "chapters" so people can skip over things they don't want or need, or listen to parts that they like several times. Do you think that's a good idea or not??

Submit your opinions and see what others have said on the Message Boards.

New on the Message Boards:

http://cushings.invisionzone.com/index.php?showtopic=19291&st=80

Kate's Top Ten List of Pituitary Surgery Observations (In No Particular Order)

1. Presurgical jokes referencing your brain tumor as the cause for your apparent failing memory should be used judiciously; I only got two laughs out of at least a dozen tries.
2. One-size-fits-all hospital gowns actually come in two ranges: Regular Folks...and Great Big Ma'ama Jamma!!!! (Even that one swallowed me, and I'm a big 'un!)
3. Cost of red plastic hospital bracelet on which the nurse clearly wrote, "Allergic to latex, bandaids and adhesives": $2.50. Cost of roll of adhesive tape subsequently used in mass quantities on inner elbow by same nurse after serum draw: $4.00. Bic pen used by mother of patient, after pulling off tape and noting angry rash, to write on patient's inner arm funny frowny-faces and long arrows pointing to residual rashes: Priceless.
4. "Your surgery will be mid-morning and should last about two hours." Translation: "Register promptly at 7:15 a.m. and then plan to wait twelve hours before seeing your family again."
5. When the lady in recovery keeps calling your name and telling you she needs you to wake up, this is NOT the same thing as when you were a teenager and your mom threatened to get a glass of water while you turned over to go back to sleep. They really mean that s*&% when they say they want you to wake up!! tongue.gif
6. "Hey, what'reyou in here for?" = not a great opener when striking up a conversation with guy moaning next to you in recovery.
7. Two words upon standing, post op: Nose bleed!
8. Time between requests for beverages: 30 minutes. Time between trips to the bathroom to tinkle: 60 minutes. Time between doses of pain meds: 240 minutes. I know, because I counted! cool.gif (like, for the past 24 hours!)
9. Never again will you so carefully examine your boogers and snot for evidence of the dreaded clear fluids (indicative of CSF leak). "Hey, Mom, does this look pink or red to you?"
10. Transnasal transsphenoidal endoscopic pituitary microadenectomy: as close to drive-through brain surgery as you can get!

From Kate, one week post op:
http://cushings.invisionzone.com/index.php?showtopic=19414

Hello, my dear friends,

It is strange to be writing to you from the other side of surgery (well, at least this time somewhat coherently, as my prior post-op posts have been, let's say, lubricated nicely by some very nice pain pills). It seems not too long ago, I was writing my introduction post back in August, then posting questions about testing, months of which are now thankfully over.

Some of you may remember my first posts, and I can't believe that it's only been 5 months ago that I was telling my story and searching for answers. Today, I post both because I learned some things through the surgical process, which I wanted to share with those of you who may be doing this after me. But I also post because this is my denouement...the post-climactic events in my Cushing's story. (Don't worry, though -- I'm not going to leave!)

PRE-OP SUGGESTIONS:
1. IN-PERSON PRE-SURGICAL CONSULT
Go see the surgeon in advance of surgery. If you can afford to actually go see the surgeon face-to-face ahead of time, I recommend it. This is brain surgery. Yes, it's an additional expense for travel, but if you can, make it happen. You will thank yourself, and you will walk out of that consult with a clear confirmation whether the surgeon will perform your surgery or whether there may be additional tests, labs, reports, referrals, etc. needed prior to that agreement.

Because I'd been fortunate to have this consult, by the time I reached the surgeon on Wednesday (before the Friday surgery) to drop off my films, he basically said, "We already met, and I have nothing to add to our prior conversation, but I'd be glad to answer any questions you may have at this time." The appointment lasted about 2 minutes. Seriously. I think having met the surgeon and him having already agreed to do my surgery meant that no questions were left to be answered -- by either of us -- by the time I went for the operation.

2. INSURANCE: Make sure your insurance is in order. You probably need a referral to the surgeon for "evaluation and treatment"; this referral comes from your PCP to the surgeon. Most surgeon's offices will handle the preauthorization with your insurance company for you. Mine did. Still, for my own peace of mind, I checked with my insurance company more than once to make sure that they had the preauthorization approved.


3. PAPERWORK:
A. LABS - Even if you've had a pre-surgical consult, or even if you've mailed your labs ahead of time, PLEASE do yourself a favor and go to surgery with your paperwork in perfect order. This means even if you have your films and labs already in the hands of the surgeon, ALSO bring a copy of your labs with you!

B. REFERRAL - This next one is non-negotiable: HAVE A REFERRAL FOR SURGERY BEFORE you arrive for surgery. If possible, have a copy of this written referral in your hands. You can arrange this by having your referring endocrinologist copy you on the referral letter/email. Just print it out and make it part of your folder. You cannot self-refer for surgery. You MUST have a referring endocrinologist confirm your diagnosis, the basis for the Dx, and put in writing his recommendation and referral for surgery. If you do not have this, then do not expect to pass go or collect $200. Them's just the facts.

C. PRE-SURGICAL PHYSICAL REPORT - You will have to have a pre-surgical physical. There will be bloodwork, and EKG, possibly a cardiac workup (if necessary), a chest X-ray, and whatever else your surgeon and PCP feel may be necessary to ensure your safe release for surgery. Once all of these tests are completed, it is then necessary to ensure that the report actually makes it to the surgeon's office. I learned this the hard way because I'd coincidentally had a pre-surgical physical for the cancelled IPSS, which had been scheduled as the same day I had surgery instead. Although I'd anticipated that my physical report would therefore wind up at UCLA (where the IPSS was scheduled) instead of Pittsburgh (where surgery was scheduled), and even though this did in fact happen, it only took a couple of phone calls to make sure my surgical clearance report finally made it to the surgeon's office. Two days before surgery, or more (if you have more notice than I did), just sit down for an hour or two and make phone calls to make sure everything is in order and where it needs to be.

D. SELF-CREATED SURGICAL PACKET - Once all of the above is accomplished, the most helpful thing you can do for yourself is to put together a packet to take with you to the surgeon:

  • Labs
  • Concise list of labs (listing all high numbers, dates, times categorized by test type)
  • Referral letter from your endocrinologist with the diagnostic basis for your referral
  • Films (Originals AND/OR on CD -- I brought both)
  • Pre-Surgical Physical report from Primary Care Doctor

I put my referral letter on top, my own synopsis list of labs under that, then the labs, then the physical report, and I had the clipped together and handed to the surgeon's staff upon my arrival. Maybe some of it was duplicitous, but that way, they had everything they could need at their fingertips.

4. PACKING: Pack well, but lightly. You won't be wearing a lot of clothes, and there are only so many nightgowns you can wear. Take two sets of clothes and two nightgowns, a robe and some slippers with outdoor-type soles, and then slog around in those slippers even after surgery when you are back in clothes and traveling. My sweetie husband bought me some UGG slippers with shearling insides and rubber soles, and I haven't taken them off since I got out of surgery -- even wore them to the doctor yesterday, the lab for draws on Tuesday, and plan to wear them until I am feeling like my feet don't need the comfort of something soft and warm again.

I think Mary printed my packing list in one of the recent newsletters, but I just wanted to confirm YOU DON'T NEED TO TAKE MUCH STUFF. I didn't feel like reading, playing cards, or even really watching TV. So unless you are going somewhere where they do a traditional rather than endoscopic approach (meaning you will be in the hospital more than overnight), skip the toys and such. Every other need you have will be met by the hospital.

5. PRESCRIPTIONS - Get your regular med AND post-surgical meds filled prior to leaving your hometown, if possible. This includes cortef AND injectable solucortef PLUS syringes. Not all pharmacies stock this stuff, so plan ahead a couple of days so they can order it if necessary.

6. BUY A PIK-STICK - This is a thing with a handle on one end and pinchers on the other, which will help you retrieve things off the floor post-op. Trust me, this is a good purchase. $15 at your local pharmacy or Walmart, etc.

7. PREPARE YOUR ENVIRONMENT FOR POST-OP - Get your house clean. Hire someone if you can't do it or don't have family to help. I've never had help, and this was the best thing I did for myself. I came home to a spotless house, which relieved a lot of stress.

Plan where you will sleep upright after surgery. A recliner or a chair with ottoman and pillows both work well. Gather bed pillows to prop under legs. Have a small table next to whereever you will sleep/spend the day. Put lip balm, a coaster for drinks, Puffs Plus with lotion tissues on it, and anything else you think you will need close at hand.

Make arrangements for who will help care for you post-op. You will need intense care for at least a week, and maybe two. Don't be shy to ask people for help, and tell them to bring food rather than flowers. I have enough soup in my freezer for a month, and I don't have to worry about cooking for my husband....nice!

8. SAY GOODBYE TO WORK FOR A WHILE - Don't do what I did and take work to the hotel with you. If you had appendicitis, they would live without you. No one is indespensible. This used to bother me; this week, I am appreciating the revelation. Tell everyone you need limited contact, few visitors if any and NO STRESS after surgery.

SURGICAL SUGGESTIONS
1. LOCATE THE ROUTE TO THE HOSPITAL IN ADVANCE - Find your way to the hospital before the day of surgery. Or, do like I did and arrange to stay in a hotel near the hospital that has a shuttle service. Then, arrange for the shuttle to pick you up half an hour before your appointed registration time. If going to Pittsburgh, I cannot recommend enough staying at Springhill Suites in Northshores, 1 mile from Allegheny Hospital. They took us everywhere we needed to go, including downtown to a pharmacy. For free.

2. MAKE A LIST OF PHONE NUMBERS TO CALL AFTER SURGERY - Take a list of phone numbers for your family members to call when you are out of surgery. You won't feel up to it yourself, but they will be delighted to let your friends and other family know how you made out. I confess my list was developed from my cell phone call log after I was already registered and waiting to go down to anesthesia....which is only to say if my mother didn't call you after my surgery, it does NOT mean you are not my dear friend -- it only means I couldn't quickly access your number from my call log in order to give it to her. I wish I'd written the list out in advance, though, because it relieved me to know people knew the outcome as I knew they were waiting to hear.

3. CHILL OUT, THE SYNTHETIC WAY (IF NECESSARY) - If you are like me -- someone who has not done a lot of surgery, and also hasn't taken a lot of tranquilizers -- I HIGHLY RECOMMEND GETTING TUNED IN by some Xanax, Valium, Ativan or the like immediately after registration. Now, of course I had to arrange for this medication prior to surgery, and I did this through my PCP who thought it was a great idea to have something for anxiety. Then, I did not take it until I had cleared it with the surgical team after admission to the hospital. If you talked to me on the morning of surgery as I waited to go down, you probably had a good laugh. I'm a real hoot on 2 mg of Ativan, as Robin may attest!

The net effect of the tranquilizer was that by the time they wheeled me down to anesthesia, I was not only ready for surgey, I was okay with it, not scared, kind of excited to be moving forward after all of the waiting, making funny small talk with the hospital staff, etc. Maybe you won't need this, but for me, drugs....mmmmmmmm, mmmmmmm, goood!

4. TEE TEE BEFORE CHANGING INTO HOSPITAL GOWN - Use the bathroom BEFORE putting on the surgical gown. I had gone before leaving the hotel, and since I hadn't eaten or drank anything, I thought I wouldn't need to go. Then I found myself in a 2 hour wait down in the anethesia area, and suddenly I had to tinkle. It was, I'm sure, a pretty sight to see me hobbling down the hallway in that surgical gown, in those ugly socks (that are not shaped like feet, by the way), all zonked out on Ativan and waving at people. tongue.gif

Where I had surgery, they did NOT use a catheter, by the way.

5. WARM BLANKIE WHILE WAITING FOR SURGERY = GOOD STUFF - Tell them you are cold, even if your temperature is just right. That warm blanket was so comforting. Made me feel all snuggly and nice. A pre-surgical hug, if you will.

6. PREPARE INFO FOR SURGICAL TEAM - Tell your anesthesiologist/s EVERYTHING about yourself. Mine was a complicated case because of my sleep apnea, which is (was?) severe. They had prepared to intubate me while awake, if necessary. By the time I had the Versed, I truly, truly would NOT have cared!!! I was so ready for surgery by the time they wheeled me in and gave the Versed, I would have pushed the tube down for them if necessary. But because anesthesia is a risk in and of itself, be SURE to tell them about ANY breathing problems you have, even asthma, some congestion from a lingering cold, apnea, whatever. I wound up in ICU -- briefly -- after surgery, just as a precaution.

7. VERSED: THE POINT OF NO RETURN - Watch your mouth after the Versed. It will give you loose lips!!! Who knows what gems may have come out of my mouth....the one thing I remember was trying to hook up Dr. D with Robin's daughter, Sarah Beth. I do think I also told him he was Dr. D -- for "Dreamy." This was right before he told me he was married, and then the next thing I knew, I was in recovery.

8. SURGERY WAS NOT THAT BAD!!!! Mine lasted 2 1/2 hours. I had it endoscopically by Dr. J, who I am convinced is a world-class surgeon. It went "perfectly," according to my surgeon. Although I had a wicked headache and a nosebleed every time I stood up, it really was not that bad. Kind of like a migraine plus a low-grade flu, and the pain meds hooked me right up. I was doing so well that by 8 a.m. the next day, they had released me from the hospital. I elected to stay until 12, though, to get my last dose of pain meds before adiosing the hospital.

For those who asked, my tumor was 5mm on the right side, had grown down into and around my septum, had been there for years to have grown in that fashion, was not recognized by the radiologist who initially read my MRI, was seen as curiously small on film by the 3 surgeons who did recognize it, and had a 3mm extension/second tumor on the left side of the pit. Dr. J and Dr. D assured me that they felt they got it all and that they had even milked the gland afterwards, though I don't know what that means.

My tumor stained positive for ACTH, and there was plenty for pathology. I have not received the official report, but at 6 a.m. the morning after surgery, Dr. D gave me the truly overwhelming news that I had pathology-proven Cushing's. I wept, pumped his hand up and down, called my husband at the hotel, and according to my mom, my husband met her for breakfast with tears streaming from utter relief and validation at this news.

P.S. Have been told that my gland was preserved and that I may be able to get pregnant. After all this time. Despite Dr. W, my repro endo who for seven years never tested me for Cushings and told me I had PCO.

NOTE FOR THOSE INTERESTED: Remember that Jan. 9th appt. I'd scheduled back in the fall with Dr. W, the one they were really reluctant to schedule? I got a call on Jan. 8th at 8 a.m. from the office manager for the fertility practice informing me that Dr. W retired on Jan. 1. Veddy, veddy interesting. I think my malpractice attorney will find this news to be interesting as well.

9. STAY IN THE HOSPITAL TWO NIGHTS IF YOU WANT TO! I wound up staying back at the hotel the night after surgery, but it would have been nice to have been in that hospital bed, having a nurse bringing me Sprite Zeros and soft, nuggety ice and helping me to the bathroom. However, most medical professionals will agree that it's best to get out of the hospital as soon as you really safely can -- there's a lot of sick folks and germs in that place, after all!

10. P-BURGH = EXCELLENT CHOICE - If you choose to have surgery in Pittsburgh, you will be treated like royalty at every step of the way. Top-notch facility, private room with a stunning view of the city, comfortable bed, constant attention, true compassion from staff, support for your family as they wait for news of your successful procedure.

POST-OP
1. TRAVELLING AFTER SURGERY - Zonk up on pain meds and suck it up and do it. Home is better than hotel, and you won't remember much of the trip if you are on meds and have help from family to do it right. If travelling by car, take pillows and snuggly blankets.

2. PAIN - For me, there wasn't a lot. Then again, I chose to spend the first three days cross-eyed and drooling on Percocets before realizing I didn't really need them. I am still taking one at night to sleep or if I get a headache. But we are talking normal headache now, not the hatchet kind.

3. CONGESTION - You will have some, but keep in mind some of that is surgical swelling and not congestion. I learned this at my PCP yesterday who said she could see the tissue swelling. Mucinex works wonders for getting packed mucus to drain, but then expect some coughing as it tickles the throat. Some folks have used humidifiers, hot bowls of water with salt and a towel over the head, throad lozenges, saline sprays and mists, nose pots to rinse the sinuses. I've done the hot bowl of water twice, and hot showers. It's been one week, and the congestion is pretty much over.

NO: Nose blowing, snuffing up, hocking loogeys, back-swallowing. Also, no bending, reaching down, straining to get up or have a bowel movement (or, as I discovered last night, doing the long cat-stretch while making the cat-stretch noise - OUCH!)

YES: Drinking hot tea, following list above, laying your head back and letting it drain down your throat, sucking it up and realizing it is temporary. LET OTHERS DO FOR YOU. This is not the time to be superwoman.

4. MEDICATIONS - Buy a seven day pill box, then fill it with what you need for the day.
Set up "Crisis Central" with your crisis letter from your endo to take to the ER if necessary (also give this to your PCP ASAP), your solucortef injectable WITH syringes, instruction sheet on how to give the shot, etc. Take your medications on time. Make sure they remain filled and call early to refill.

5. AVOID STRESS - No work. Very few phone calls. Limit internet for at least one week, maybe more. No arguing or debating with anyone about anything. Let others take care of you, even if you've never done this before in your life.

6. SLEEP A LOT. Your body needs it to recover.

7. SNUGGLY BLANKET = BEST FRIEND after surgery. I got a microfleece blanket from Target, and it has been across my lap during the day and draped over me at night. It feels like being enveloped in warm marshmallow cream, or Cool Whip. Very good $29.99 expenditure. Added bonus if you have a sweet lap dog to curl up with you.

8. LISTEN TO YOUR BODY - Mine, at least, has been telling me things: hunger, pain, stress, anxiety, fatigue, weakness, energy, etc. Respond accordingly: take pain meds for pain, eat healthfully and in small amounts when hungry (or else nausea will ensue), take meds on time, don't be afraid to take Xanax or the ilk when stress comes on. I am managing some of these meds with my PCP, who thinks keeping things on a very even keel is a good idea. Since this is new to me, Ms. Intensity, I'm having to ease through this medicinally. Deep breathing exercises work, too.

9. SHOWERING - helps break up congestion and is a good way to perk up if you are feeling low. Just, be careful showering if you are weak. I take my cortef, then shower 45 minutes later when I have some energy. Then settle back down and be quiet. Your body needs stillness and quiet to heal.

10. DON'T PUSH IT. For me, post-op has been pretty much a breeze. No intense pain, only moderate nausea, pretty good adjustment to cortef. I do note I am emotional and somewhat unable to process simple stressors. For instance, even going over to the in-laws for a simple meal was too much last night, one week post-op. So I am doing things like letting the answering machine answer for me, etc. Build a cocoon, then live in it for a while. After years of Cushing's, YOU DESERVE IT (ME, TOO!)


Updated Pages on the Website:

Testimonials http://www.cushings-help.com/testimonials.htm

MaryO has done such an incredible job of creating a website that has so many different means of support and knowledge for those who are struggling with problems...
Thanks Mary O! I are loved on this board. What you have done for people suffering with cushings is amazing.
Without this board I would be in a mental instituion somewhere babbling about some un-founded tumors in my head while they shoot me up with mood stabilizers to shut me up. I am not kidding, that was where I was before I found this board & began my fight for some real answers.
Mary, I just want to say, you mean so much to each one... You are such a private person and sometimes I know I feel awkward about emailing you as I just don't want to impose but I want you to know that what you have done for me is beyond words. By creating this site without knowing it you helped me to get better...I could barely walk but now I can run, I couldn't pick up my baby boy and now I can lift him way up in the air...and that is through the help and support I got here.

Helpful links: http://www.cushings-help.com/links.htm 

Helpful Hints for Dealing with Cushing's: http://www.cushings-help.com/helpful_hints.htm


News Items:

Media:

• Sam who has been on The Mystery Diagnosis TV Show (Discovery Health) has been invited to appear on Dr. Phil taping possibly as soon as Thursday January 25th. More info as it becomes available.


Cortisone:

• From http://www.enidnews.com/features/local_story_023000343.html?keyword=topstory

Published: January 23, 2007 12:03 am

The other steroid
By Judy Rupp, commentary

They’re steroid drugs often used to treat sports injuries. But if your doctor gives you a corticosteroid injection, don’t expect it to bulk up your muscles or give you secondary sexual characteristics.

Corticosteroids are “the other steroid,” and they’re widely used for treating disorders ranging from simple skin problems to brain tumors.

When Mayo Clinic doctors first gave corticosteroids to persons with arthritis, the effects were so dramatic it was believed a miracle cure had been found. Doctors soon discovered these valuable effects came packaged with serious risks. Possible side effects include increased susceptibility to infections, poor wound healing, fluid retention, high blood pressure and an increased risk of osteoporosis, diabetes and glaucoma.

Topical Steroids: One of the most common uses of corticosteroids is to treat skin problems. A staple in most home medicine cabinets is hydrocortisone (Cortaid), a steroid skin cream used to treat simple skin allergies or itching. At this low strength, there’s minimal danger.

Steroid Injections: For arthritis, gout or sports injuries, a corticosteroid can be injected directly into a joint, ligament or muscle to relieve pain, swelling and inflammation. Steroid injections are usually for individuals who are unable to take NSAIDs (nonsteroidal antiinflammatory drugs) or have not responded to them. A doctor must be certain the inflammation is not caused by an infection since steroids inhibit the immune response.

Inhaled Steroids: Inhaled steroids are often prescribed for patients with asthma or other chronic lung disorders because the drugs can prevent or reduce swelling and the accumulation of mucus inside the airways. An asthma attack occurs when the airways over-react to stress, sudden cold air, exercise, pollen or other allergens, and the corticosteroid has a rapid effect in making the airways less sensitive to such irritants.

Oral Steroids: For asthma, arthritis and skin conditions as well as for certain cancers, corticosteroids may be prescribed orally as pills or a syrup. For asthma, oral corticosteroids are considered emergency medicines used primarily when other medications are unable to restore control after a serious attack. That’s because the drug goes through the stomach and enters the blood stream so it has systemic effect and can cause side effects in all parts of the body. It takes several hours for an oral steroid to start having an effect, but after only a few days side effects such as weight gain, fluid retention, rounding of the face, high blood pressure and changes of mood can occur. Long-term use can lead to even more serious effects such as high blood sugar, loss of bone density, muscle weakness and cataracts. About half of patients taking oral steroids over an extended period to treat severe diseases such as arthritis or cancer eventually develop bone fractures.

Because of suppression of the adrenal glands, sudden discontinuation of corticosteroids after use for more than five days can be dangerous.

Corticosteroids are powerful drugs with many valuable uses. Unlike the steroids you read about on the sports page, they will not build big muscles nor give you a competitive advantage on the field. They will, if used wisely, give you a head start on beating diseases ranging from athlete’s foot to cancer.


Rupp is information and assistance case manager with the Northern Oklahoma Development Authority Area Agency on Aging.


Growth Hormone:



From http://www.medadnews.com/News/index.cfm?articleid=410004

Merck Serono Launches Easypod, First Electronic Growth Hormone Injection Device
- easypod(R) Was Designed to Improve Ease of Usage, Reliability and Convenience


GENEVA, Switzerland, January 30, 2007 /PRNewswire-FirstCall/ --Merck Serono announced today the launch of a unique growth hormone injection device, easypod(R), for the once-daily administration of Saizen(R) (somatropin), the company's recombinant growth hormone deficiency therapy. easypod(R) is the first of its kind in this therapeutic area and was designed to improve patients' ease of daily use, reliability and convenience. It has been developed in conjunction with patients and healthcare professionals and as a result has been specifically designed to meet their needs and simplify patients' daily treatment.

Dr Jovanna Dahlgren, Assistant Professor, Queen Silvia's Children's Hospital, Gothenburg, Sweden, said: "We are extremely encouraged by the response to easypod(R) from our young patients and their parents, as well as from nurses and physicians. It has been extremely well received, bringing additional benefits to the often sensitive task of administering daily therapy to children and young adults and supporting their adherence to that therapy. Above all, this device is easy to use and reliable."

Hans Christian Rohde, current Head of Global Therapeutic Area, Endocrinology, Merck Serono, commented: "This breakthrough technology reaffirms our commitment to innovation in metabolic diseases, especially in growth hormone deficiencies where compliance is a major limitation to treatment success. This is a significant advance in our patient drug device portfolio in this therapeutic area that will support our efforts to improve patient treatment and will distinguish us from existing injection devices."

easypod(R) is used in three simple key steps and delivers one daily injection subcutaneously to children and adults, designed to minimize discomfort and pain. The device enables healthcare professionals to pre-set dosing levels, reducing the possibility of dose miscalculation. No daily dose adjustment is required by the patient, and the injected dose is confirmed after delivery, giving the patients and their carers confidence in administration. The device also records the number of doses administered, allowing a physician to monitor patient compliance to therapy.

easypod(R) has been approved in Europe and is already available in Sweden, Norway, Finland, Canada, Australia, Italy and Germany, where it has been met with an extremely positive response from patients and healthcare professionals alike. January 2007 onwards will see the roll out of the device in other regions around the world.

About Growth Hormone Deficiency

Growth hormone deficiency occurs when the pituitary gland in the brain is unable to release or produce sufficient amounts of growth hormone. The problem can be congenital (malfunction of the pituitary gland and hypothalamus), idiopathic (unknown cause) or traumatic accidents or tumours.

In children, growth hormone deficiency causes slow growth and, without treatment, many will end with short stature as an adult. Growth hormone deficiency can also develop in adults as a result of tumours or surgery around the pituitary gland area. Growth hormone deficiencies in adults are a significant problem with a number of physiological consequences: changes in body composition (including central obesity), effects on lipids in the blood, changes in muscle strength and bone composition, increase in cardiovascular risk and psychological well-being (social isolation and depression).

Merck Serono Easy to Use Devices

Growth retardation affects children and requires chronic, long-term treatment with daily injections of recombinant growth hormone. Merck Serono is the only company to offer innovative needle and needle-free options to children and adults with growth hormone deficiency to help simplify treatment administration and encourage compliance.

About Saizen(R)

Saizen(R) (somatropin) is a recombinant human growth hormone and is therapeutically equivalent to the natural growth hormone produced by the body. It is indicated for treating growth hormone deficiency in children and adults, as well as for treating Small for Gestational Age, Turner's Syndrome and Chronic Renal Failure outside the US.

About easypod(R)

easypod(R) is an easy to use device that administers a subcutaneous injection in three simple key steps - attach needle, inject dose, detach needle. As the dose is pre-set for each patient by the physician or healthcare professional, the risk of miscalculating the dose is reduced and no daily dose adjustment is needed. Patients' confidence is improved thanks to an immediate confirmation of the injected dose and the permanent display of the number of injections left in the cartridge. It also tracks the number of doses administered allowing physicians to monitor patient adherence to therapy. easypod(R) is CE marked by Serono Europe Ltd, an affiliate of Merck Serono S.A.

Forward-looking statements

Some of the statements in this press release are forward looking. Such statements are inherently subject to known and unknown risks, uncertainties and other factors that may cause actual results, performance or achievements of Merck Serono S.A. and affiliates to be materially different from those expected or anticipated in the forward-looking statements. Forward-looking statements are based on Merck Serono's current expectations and assumptions, which may be affected by a number of factors, including those discussed in this press release and more fully described in Serono's Annual Report on Form 20-F filed with the U.S. Securities and Exchange Commission on February 28, 2006. These factors include any failure or delay in Merck Serono's ability to develop new products, any failure to receive anticipated regulatory approvals, any problems in commercializing current products as a result of competition or other factors, our ability to obtain reimbursement coverage for our products, the outcome of any government investigations and litigation. Merck Serono is providing this information as of the date of this press release, and has no responsibility to update the forward-looking statements contained in this press release to reflect events or circumstances occurring after the date of this press release.

About Merck Serono

Merck Serono is a global biotechnology leader, with sales in over 90 countries. The Company is the world leader in reproductive health, with Gonal-f(R), Luveris(R) and Ovidrel(R)/Ovitrelle(R). It has strong market positions in neurology, with Rebif(R), as well as in metabolism and growth, with Saizen(R), Serostim(R) and Zorbtive(TM). The Company has recently entered the psoriasis area with Raptiva(R). Merck Serono's research programs are focused on growing these businesses and on establishing new therapeutic areas, including oncology and autoimmune diseases.

Bearer shares of Merck Serono S.A., the holding company, are traded on the virt-x (SERO) and its American Depositary Shares are traded on the New York Stock Exchange (SRA).
www.merckserono.net

About Merck

Merck is a global pharmaceutical and chemical company with sales of EUR 6.3 billion in 2006, a history that began in 1668, and a future shaped by about 35,000 employees (including Merck Serono) in 56 countries. Its success is characterized by innovations from entrepreneurial employees. Merck's operating activities come under the umbrella of Merck KGaA, in which the Merck family holds a 73% interest and free shareholders own the remaining 27%. In 1917 the U.S. subsidiary Merck & Co. was expropriated and has been an independent company ever since.

CONTACT: Merck Serono, 9 Chemin des Mines, 1202 Geneva , Switzerland ,www.merckserono.net; Corporate Media Relations, Tel:+41-22-414-36-00, MediaRelations, USA, Tel :+1-781-681-23-40 ; Corporate Investor Relations,Tel:+41-22-414-36-01, Investor Relations, USA, Tel:+1-781-681-25-52

Ticker Symbol: (NYSE:SRA)

Terms and conditions of use apply Copyright © 2007 PR Newswire Association LLC. All rights reserved. A United Business Media Company


General Health:

From http://www.bismarcktribune.com/blog/?w=tch&e_id=1667/

Polycystic Ovary What?
• 2007-Jan-26 - Update on Polycystic Ovarian Syndrome

Update on Polycystic Ovarian Syndrome Shahab S. Minassian, M.D.
Director, Drexel Fertility
Division of Fertility and Reproductive Endocrinology
Co-Director, Center for PCOS at Drexel University College of Medicine

The changes are gradual but no less frustrating. Weight gain, excessive hair growth, acne and a steadily worsening irregularity of menstrual periods begin to surface. Fertility, once thought to be a natural process, is impaired. After its formal reports in the medical literature and for decades in modern times, the diagnosis, treatment and health risks of Polycystic Ovarian Syndrome (PCOS) have afflicted patients and perplexed their physicians. However recent advances in the knowledge of this common syndrome, especially in the area of insulin resistance, have helped everyone involved to better understand the problems PCOS causes and turn to newer, more effective treatments to combat them. It is hoped that this will serve as an overview to our readers and offer them hope that was not available until recently.

Women have most likely been affected by PCOS as a disease for a very long time. However, it wasn’t until a French physician reported the appearance of polycystic ovaries in the mid 1800’s that brought it to the attention of the medical community. Gradually more reports surfaced including surgical recommendations for treatment, most notably the “wedge resection”, in which wedge-shaped portions of the ovaries were removed. In 1935 Stein and Leventhal, two gynecologists from Chicago, described the symptoms of PCOS (immediately named the Stein-Leventhal Syndrome), and noticed that they disappeared, at least for a while, after the wedge resections were done. These patients were for the most part overweight, infertile, hirsute and had a lack of periods. Since those reports many if not most physicians, until recently, have thought of PCOS in this way. There are, however, a significant number of patient who are not overweight, or may have one or a few of these symptoms. Finally, in 1990, an NIH consensus conference defined PCOS as the finding of elevated androgens and impaired (irregular) ovulation when the hormonal diseases of congenital adrenal hyperplasia (an inherited enzyme disorder), elevated prolactin, thyroid disease and Cushing’s syndrome were excluded. Later on, in 2003, a conference of specialists in the field held in Rotterdam, Netherlands proposed a modification of the definition. They supported the finding of polycystic ovaries during ultrasounds as part of the criteria to diagnose PCOS. They also proposed that PCOS can be diagnosed even if a woman has regular periods. This definition is accepted by many PCOS specialists worldwide, as is the NIH definition. Needless to day there is a great worldwide controversy going on at this time about this definition.

Not all patients have all of the symptoms of PCOS. Hirsutism (90%), menstrual irregularities (90%) and infertility (75%) are the most common. Polycystic ovaries can be seen on ultrasound in many (84%). Excessive weight is commonly seen but not exclusive (50%). Insulin resistance is a rather newly found problem (up to 30%). Insulin resistance can be so serious in some patients that Type 2 (adult-type) diabetes has been found in up to 7% of PCOS patients. How common is PCOS? Much work has been and continues to be done in this area. The answer may depend on many factors, including how it’s diagnosed or who is being diagnosed. If ultrasound is the only way used, over 20% of all women have polycystic ovaries. If only irregular periods are used about 10% have PCOS. Ethnicity plays a major role: Caucasians and African-American women have a 4% incidence, but certain Native American groups have an over 20% incidence. Greek women (9%) and perhaps certain Latino groups have a higher incidence. These facts lead many researchers to suggest that PCOS may be an inherited problem in some women. Insulin resistance appears to be inherited too. Can this be a partial answer?

In an effort to confirm a PCOS diagnosis, and to locate a possible source of the problem, doctors will turn to physical exams, laboratory tests and imaging tests. Women with PCOS and excessive weight tend to have more fat tissue at the waist and upper body. Aside then from the usual weight and height measurements, the waist-hip ratio and body-mass index are excellent tools to evaluate excessive weight. Common blood tests include androgen levels (testosterone, DHEA-sulfate, 17-hydroxyprogesterone, androstenedione for example). Many women have increased LH (luteinizing hormone) levels compared to FSH (follicle-stimulating hormone), resulting in an elevated LH to FSH ratio. Vaginal ultrasound is an increasingly popular test. The ovaries are seen to have a polycystic appearance, a bit enlarged and with collections of small follicle cysts lining the outer edge, just under the surface. This finding is called the “pearl necklace”, “string of pearls” or “necklace” sign.

The current opinion of many PCOS researchers is that it is a syndrome with more than one cause. Two have been most often proposed: (1) insulin resistance and (2) some type of abnormality in the way the ovary produces hormones (androgens and estrogens). Insulin resistance is strongly linked to PCOS. In this problem the cells of the body cannot process insulin, to keep the blood sugar normal, very efficiently. Excessive weight further aggravates the insulin resistance. The body will compensate by making more insulin. The excessive insulin stimulates the ovary to make androgens. Additionally, it’s difficult to lose weight when insulin levels are elevated, further compounding the problem. At least one third of patients with PCOS can have insulin resistance. In the second case, some researchers have proposed that a gene defect may force the ovary into making the excessive androgens. Either way, the androgens will cause follicles, normally trying to mature and ovulate, to stop growing. The follicles collect in the ovary (making it appear polycystic), and eventually degenerate. The androgens also may create excessive hair and/or acne. One area that is much less studied, but may be important, is the effect of stress on PCOS. There have been some older and more recent reports that PCOS patients score higher on anxiety or other psychological testing. Adding stress reduction techniques seems to help with PCOS treatments.

PCOS is a syndrome with both short and long term risks to women. In the short term, it can cause infertility and/or uncontrolled or irregular vaginal bleeding (dysfunctional uterine bleeding) with the possibility of anemia. The infertility results from as obvious a problem as a lack of ovulation to as subtle a problem as sub-optimal ovulation (such as luteal phase defect). Irregular bleeding, spotting or staining, which can plague women for weeks or months, is due to a lack of ovulation which would ordinarily cause a regular monthly shedding of the uterine lining (endometrium). The endometrium continues to grow in thickness despite the lack of regularity eventually breaks down in a disorderly way. Many of the longer-term risks of PCOS have been known for years, but others are just recently being discovered and studied. Women who have the insulin resistance version will have a much higher risk of Type 2 (adult type) diabetes later in life. These women also have a higher risk for “dyslipidemias”: high blood levels of cholesterol or other lipid substances. High blood pressure is more common. For this reason, most PCOS researchers feel that there is a higher rate of heart disease and atherosclerosis in women with PCOS. Cancer of the endometrium is a long-term risk that has been known for decades. Women with PCOS do make enough estrogen to grow their endometrium (much of it from their body fat) but without regular shedding of the lining it can grow uncontrollably. Without ovulation there is no progesterone (hormone of ovulation) to oppose this effect of the estrogen. After many years this “unopposed estrogen” may lead to a precancerous condition of “hyperplasia”, which may eventually lead to cancer. Some studies have suggested that PCOS may be linked to a slightly higher chance of ovarian cancer but more work needs to be done. It was previously thought that PCOS may lead to a higher breast cancer risk but this evidence is not quite solid. One new area of research has looked at the risks for pregnancy complications in women with PCOS once they conceive. Miscarriage rates seem to be higher and may be related to their higher androgen or LH levels. Gestational diabetes risks can run up to 30%, and a recent report has studied a possible PCOS link to pre-eclampsia during pregnancy.

The workup for PCOS should include a thorough physical and pelvic examination, laboratory testing, perhaps imaging studies, and definitely counseling as to the risks and treatment choices (which may be different for individual patients). Of course, excessive weight (women with PCOS tend to gain weight in the upper body and trunk more than in the hips and thighs) excess hair growth and acne are looked for. Noticeable skin problems that are suspicious for insulin resistance are acanthosis nigricans, a brownish, raised skin discoloration in the body folds (neck, armpits, groin) and “skin tags” scattered over the skin. If the woman has a long history of irregular bleeding an endometrial biopsy may need to be performed to check for the above endometrial changes. Hormonal testing for androgens, LH, FSH and for other hormonal diseases that can mimic PCOS must be drawn. The way to check for insulin resistance is controversial at this point, but a popular test is the fasting glucose:insulin ratio. This test is drawn after an overnight fast and checks the baseline levels of the patient’s blood sugar and insulin. A ratio less than 4.5 is a good indicator of insulin resistance. However, this test seems to be only 85% effective. Some doctors may choose to extend the test into a 2 or 3 hour glucose tolerance test (GTT) with insulin levels. This test “stresses the system” to uncover the diagnosis. A fasting lipid profile (cholesterol, LDL, HDL, triglycerides) may be drawn also.

The treatment of PCOS has been noticeably changed in recent years. Medications for insulin resistance, the “insulin sensitizers”, have helped many patients. These medications lower insulin levels; androgen levels drop and menstrual cycles return. The most studied and prescribed is metformin (Glucophage). It is at least 75% effective in recent studies. Many patients will report some weight loss initially on this drug. Newer sensitizers include pioglitazone (Actos) and rosiglitazone (Avandia). These are less well studied but can provide an alternative to metformin if needed. Troglitazone (Rezulin) has been taken off the market. Side effects, especially of metformin, can include gastrointestinal distress (diarrhea, loose bowels, bloating). Pioglitazone (Actos) and rosiglitazone (Avandia) are known to cause some weight gain and water retention. Liver and kidney problems are extremely unlikely in a non-diabetic but blood pre-screening and occasional monitoring while taking the medications should be done. PCOS treatment really does depend on the individual medical circumstances, and wishes, of the patient. If she wants fertility treatment clomiphene citrate (Clomid, Serophene), the oral fertility drug, is usually prescribed. If she is insulin resistant, taking metformin or another insulin sensitizer alone is now becoming an option. Some specialists will even give both drugs together. As a last resort ovarian drilling, a same day surgery laparoscopic procedure that is a new version of the old wedge resection, has been shown to at least temporarily make periods regular. However, this approach does lead to scarring of the ovaries in at least 20% of women, has not been proven to help against insulin resistance, and many will return to irregular periods eventually. Women who are not currently interested in fertility have many options too. Whether insulin resistant or not, oral contraceptives can regulate bleeding to prevent dysfunctional bleeding and uterine cancer risks, and treat acne. If they are insulin resistant, insulin sensitizers can be given to allow for regular periods and prevent the long-term effects of PCOS. The sensitizers will let ovulation occur so sexually active women must use care to avoid unwanted pregnancies. In fact, some specialists are using oral contraceptives and sensitizers together to prevent this. Hirsutism can be very well treated with oral contraceptives together with the drug spironolactone, which lowers androgens. Vaniqua, a new prescription cream, looks effective for excessive facial hair. Of course, whether wanting to conceive or not, a great way to treat PCOS is by lifestyle alterations including diet, exercise and stress reduction. Weight loss in women with excessive weight can help their response to medications, or for some may even eliminate the need for them. Low carbohydrate diets can be very useful for weight loss in insulin resistant women. Exercise is essential for weight loss too and diet and exercise must be used together for the best results. Stress reduction can be accomplished in many ways. “Western” methods like biofeedback have been advocated, as well as “Eastern” methods like meditation, tai chi, chi kung and yoga. Anything to reduce stress that is enjoyable, and therefore can be counted on for long-term use, is advisable. In the complementary medicine area, acupuncture has been shown in some small Mainland Chinese studies (and one from our group that was the first report in North America) to allow ovulation and regular periods to occur. The treatment options for women with PCOS have certainly increased!

The diagnosis of PCOS brings a lot of questions, frustrations and anxiety to many patients. Physicians are not the only source of counseling and information anymore, and patients are fortunate to have support and advocacy groups to turn to. Through the ongoing efforts and partnership of physicians, researchers and patients, the syndrome of PCOS has and will continue to become less of a mystery. The goals of fertility and good health are now within closer reach for women with PCOS. Comments (0) :: Permanent Link

• 2007-Jan-26 - Still A Mystery

Why is it Polycystic Ovary Syndrome (PCOS) the most common hormonal problem in women, affecting up to 10% of the female population worldwide still considered by many a rare disorder?

Polycystic Ovary Syndrome (PCOS) is the most common hormonal problem in women. It is also a metabolic disorder that affects several body systems and can cause significant long-term health consequences. PCOS is often characterized by enlarged ovaries, with multiple small painless cysts or follicles that form in the ovary. Two other key features of PCOS are production of excess androgens (male sex hormones) and anovulation (the failure to ovulate properly), which makes PCOS the leading cause of infertility.

The symptoms of PCOS can be not only physically debilitating, but also emotionally and psychologically wrenching. While no two women may have the same symptoms of POCS, they are likely to include any or all of the following: Infertility, Irregular or absent periods, Excess hair growth on face and body, Male-Pattern hair thinning, Acne, Obesity and Lipid Abnormalities

While these symptoms easily help identify a problem, the cause of PCOS is not yet fully understood. It is thought that there are several causes, which could explain why different women have such varying symptoms to varying degrees of severity. This could also explain why less than have of those estimated to have PCOS, actually know they have it and have delays in getting a diagnosis.

Many physicians often misdiagnose PCOS based on the fact that they look at the symptoms individually, rather than as a complete picture. Furthermore, since many of the symptoms involve a woman's reproductive system, PCOS is often mistaken for a gynecological disorder. It is, however, a disorder of the endocrine system, involving hormones and hormone production

Finding the proper PCOS diagnosis requires obtaining blood samples for a variety of hormones, including those produced by the ovaries, adrenal glands, pituitary gland and thyroid gland. A full physical examination and screening for cholesterol, triglyceride, glucose and insulin should also be part of a complete evaluation.

The mystery has to be solved, due to the fact that PCOS can be associated with a number of serious medical conditions, frequently associated with decreased sensitivity to insulin (i.e., insulin resistance), which in turn may lead to an increased risk of adult on-set diabetes mellitus and cardiovascular disease. PCOS can also be associated with uterine and endometrial cancer. If left untreated, PCOS can lead to serious medical complications such as endometrial cancer and hysterectomy of the ovaries and uterus. PCOS affects the glucose levels of the body causing Insulin Resistance, a serious pre-diabetic condition. PCOS increases a woman's risk of heart attack and stroke because it increases cholesterol and blood pressure. PCOS is the leading cause of infertility in women. If causes Endometriosis, cysts, and early Ovarian failure

The other difficulty in solving the PCOS mystery is there is often a stigma attached to many of the symptoms of PCOS, which may inhibit a woman from discussing various symptoms with her doctor such as facial and body hair, infertility and obesity. Some women may even suffer from depression as a result of dealing with these symptoms. Therefore, Public information and awareness about the symptoms and the serious nature of the disorder are crucial to identifying women in need of treatment.

Unfortunately, at the present time doctors can only treat the individual symptoms of women with PCOS, rather than the entire syndrome. Once diagnosed, in most patients it can be managed effectively to help patients lead healthier and more satisfying lifestyles. In the meantime, research continues to determine the cause and look for new and better treatments for PCOS.

To learn more about PCOS and tools available for treatment of PCOS, log onto the Project PCOS Website on February 1, 2007

http://www.projectpcos.org

Questions can be directed to tarra@projectpcos.org
Comments (0) :: Permanent Link


Add your Helpful Hints for Dealing with Cushing's to the website and the email Newsletters.

Newest Bios:
To add or edit your bio, http://www.cushings-help.com/forms/bio.htm
Adrenal
Cathy (Cat80) Cathy has taken a lot of prednisone and Kenalog (an injected longer term acting cortisone) for many years and now has weakened adrenal glands and secondary Addison's Disease. San Diego, California
Marsha Marsha was diagnosed with Cushing's when she had an MRI for kidney stones. She will have surgery on January 30, 2007. Bellingham, WA
Stella (Stella) Stella has 2 large masses on both adrenal glands and has been to NIH for testing. Bowie, Maryland
Not Yet Diagnosed Patients
Sheila Mary (Sheila Mary) Sheila Mary is not yet diagnosed but feels that she has intermittent Cushing's. Ottawa, Canada
Susan (CUSHIE SUE) Susan is not yet diagnosed but has PCOS. She has had many symptoms and problems beginning in June 2005.

Susan has added Dr. Harold Carlson to the Helpful Doctors List for New York.

Susan has added this tip to the Helpful Hints page:
ALWAYS TRUST YOUR INSTINCTS!!
Central Islip, Long Island, New York
Heather (siobhan2007) Heather is not yet diagnosed with Cushing's but has diabetes, PCOS, interstitial cystitis, fibromyalgia, insulin resistance and high blood pressure. Columbia, South Carolina
Pituitary Patients
Lori (CMONDWN) Lori has had three pituitary surgeries. The last was at NIH with Dr. Ed Oldfield. Since her third surgery she lost 80 lbs, won a car on The Price is Right, was featured in Shape Magazine for her weight loss success story (6/05) and got married. She now fears a recurrence. New York, New York
Siobhan (siobhan2007) Siobhan's symptoms started in 2001 with weight gain. She has both throat and breast tumors/adenomas. Although not yet diagnosed with Cushing's she has many symptoms.

She didn't say this in her bio but mentioned on the boards that she has a 2mm pit tumor, low ACTH and low TSH.
California
Sonda (Sonda) Sonda has Acromegaly (another form of pituitary tumor). She had surgery in April 2005 and Gamma Knife Aug 2006. She also has Diabetes. Azle, Texas
Steroid-Induced Patients
Cathy (Cat80) Cathy has taken a lot of prednisone and Kenalog (an injected longer term acting cortisone) for many years and now has weakened adrenal glands and secondary Addison's Disease. San Diego, California
To add or edit your bio, http://www.cushings-help.com/forms/bio.htm

Newest Helpful Doctors:
Dr. Harold Carlson
26 Research Way
East Setauket, New York 11733
Ph.: 631-444-0580
Fax Fax: 631-444-0562
http://www.upsb.org/xq/asp/
code.868/qx/
html_patient/physician.htm
Endocrinologist,
Adrenal Gland Diseases,
Adrenal Pheochromocytoma,
Calcium Metabolism,
Pituitary Diseases,
Thyroid Diseases


Dr. Carlson is board certified in internal medicine and endocrinology and metabolism and his clinical practice has been around since 1974.. Dr. Carlson is also a professor appointed at stonybrook since 1985. he's a great doctor, he takes his time to listen and does an in depth evaluation. i highly recommend him.
East Setauket,
New York
Dr. Roberto Salvatori
Associate Professor of Medicine

Medical School: Catholic University School of Medicine, Rome, Italy

Residency: Montefiore Medical Center

Fellowship: Cornell University, Johns Hopkins University

Board Certification: Endocrinology and Metabolism, Internal Medicine

Address: Division of Endocrinology & Metabolism, Johns Hopkins University, 1830 East Monument Street, Suite 333, Baltimore, MD 21287

Phone: (410) 955-3921

Fax: (410) 955-8172

Email:
salvator@jhmi.edu


Links
Updated bio
Neuroendocrinology, pituitary disorders, adrenal disorders

Research Interests: Control of growth hormone secretion, genetic causes of growth hormone deficiency, consequences of growth hormone deficiency

Dr. Salvatori’s primary research interest centers around identifying the genetic causes of isolated growth hormone deficiency (GHD) and the consequences of untreated GHD. He has been studying GHD patients who have never received GH to determine whether they have a higher prevalence of cardiovascular diseases. In addition, he has created a mouse model of isolated GHD, by removing a gene necessary for the production of GH (GHRH).


Recent publications


I found Dr Salvatori to be wonderfully kind, interested and knowledgeable. He listened thoughtfully to my complaints and never suggested that I was simply "fat and depressed". In the first visit, he learned things about my diagnosis that my previous endo had completely missed.
~~MaryO
Baltimore, MD
To add your helpful doctor, http://www.cushings-help.com/forms/doctor.htm

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