Saturday, June 27, 2009


I have so much respect for Carol Perkins for sharing her story in Ladies Home Journal, the prominent women's magazine. That takes a lot of courage. Women are five times more likely than men to be affected by Cushing's. It is my strong belief doctors dismiss women in their 20s-50s when they present with weight problems, fatigue, headaches, etc. In addition, while they tend to go to the doctors more often than men, it seems that women are more likely to be passive in dealing with the medical community, particularly male doctors. Aren't we all taught how smart doctors are, and how they went to school for all those years, make all that money now, and therefore, they know what they are speaking about, but not us? Little ol' measly puny us? Who are we to think that we know more? It's instinct. It's guts. That's what.

Women with a rare disease are unfortunately being treated contempt and given pithy advice to exercise and lose weight. Most docs are not too subtle in their suggestions, leaving Cushies feeling demoralized, dejected, and humiliated. This must stop. Thank you, Carol, for helping us get the word out. Kudos to you.

It is important to thank the folks at Ladies Home Journal for publishing this important article. I know that with ever mention of Cushing’s disease, there will be at least one person’s life that is saved, as early diagnosis is key to Cushies making a full recovery (and cutting out unnecessary misery).

Do you want to tell LHJ thank you, too? Follow this link to post a comment on the LHJ website.You have to register, but please do it, if you have an extra moment or two. It will show them how appreciative we are. Do it for the Cushies and the ones who love us.

~Cushie Melissa

Carol Perkins' Pet Project: Home bound with a devastating illness, former fashion model Carol Perkins started designing accessories for dogs and discovered a new career.

By Jenny Miller

Originally published in Ladies' Home Journal, July 2009.

Throughout her 20s and 30s Carol Perkins lived a dream life. She traveled the world as a Ford model and appeared in magazines like Vogue and Harper's Bazaar. In her early 30s she continued modeling for clients like Victoria's Secret and started performing with magicians Penn and Teller. When she wasn't working she was out on the town, at art exhibition openings, theater events, and nightclubs. Home was a loft apartment in Manhattan. "It was a fashionable, fast-paced life," Perkins says. "Definitely glamorous."

Then she got sick. "I started getting dizzy and having severe headaches," she recalls of 1995. Even worse for her career, her weight shot up by 70 pounds. She developed a hump between her shoulders and noticed hair growth on her chin. Doctors prescribed antidepressants, weight-loss pills, and migraine medication, but nothing helped. As the bizarre symptoms intensified, Perkins could no longer work. "I was disfigured and unemployable," she says. "I kind of hunkered down and lived off my savings."

In a short time Perkins had gone from jet-setter to shut-in. Many friends, unable to deal with her illness and physical transformation, stopped coming by. "It was a really dark downward spiral," she remembers. Two things kept her from complete despair: dogs and sewing. Perkins had always loved animals, so much so that she'd once considered going to veterinary school. But her travel-heavy career had made it impossible for her to have a pet. Now homebound, she began pet-sitting for friends and neighbors. "They were my emotional support dogs," she says. "Dogs don't care if you're fat -- they love you unconditionally." Perkins also loved to sew, and she began making robes, sweaters, and dog beds as gifts for her canine guests. "There's such a joy in making something with your hands," she says. "I was really grateful to have a purpose."

A year and a half later, Perkins was finally diagnosed with Cushing's syndrome. In her case the rare illness was caused by a tumor on the pituitary gland, which made her body produce too much cortisol and led to her many strange symptoms. Two weeks later she underwent brain surgery to remove the tumor. When she awoke, "It was like a weight had been lifted," she recalls. "I decided right then that I was going to devote myself to helping animals and people."

Back home, Perkins faced a long recovery as her brain healed and her body chemistry returned to normal. But the animals continued to visit, and she kept up her crafting with a newfound purpose -- to turn her hobby into a career. An opportunity arrived sooner than expected. Just a few months after Perkins's surgery, an editor at a fashion magazine happened to see a dog bed she'd made as a gift for a neighbor's pug. The bed was featured in the magazine's May 1997 issue. Perkins had never sold any of her crafts before, but her company had launched -- whether she was ready or not. "The phones were ringing and buyers from Bloomingdale's were ordering," she says. She scrambled to fill those orders, then decided she'd better figure out how to really start a business. "I was the typical entrepreneur in that I didn't have a clue." Perkins spent most of 1998 and 1999 doing research and development, still filling orders from her kitchen table.

In 2000 she launched her company for real. She cashed in all her assets, traded New York City for Savannah, which was more affordable and closer to the textile mills she needed to work with, and opened up Harry Barker. "All dogs are hairy barkers," Perkins explains. Then she finally adopted a dog of her own, a sheltie-collie mix she named...Harry Barker.

Perkins not only found success in business but she also found love: She met her future husband, David Rawle, on a blind date and at 45 became a first-time bride, moving to Charleston to live with him. Today Perkins, 51, and Rawle, 66, share their home with Harry Barker and Josephine, a briard. Harry Barker, the company, has seven fulltime employees and operates out of a dog-friendly office in Charleston. The pet accessories for dogs (and, in more limited fashion, cats), such as collars and leashes, beds, toys, and treats, are available online at and in 3,500 stores internationally.

And Perkins didn't forget that promise she'd made to do good things for people and animals. This year the company launched a line of dog treats and toys that benefits therapy-dog programs at a nearby hospital. Many of Harry Barker's products are hand-packaged by adults with disabilities through a community partnership with the local disabilities board. And a good number of items are earth-friendly -- a recently introduced line of environmentally conscious collars and leashes is made out of recycled plastic bottles. But as gratifying as those do-good initiatives are, says Perkins, the real joy of her new career is all about the dogs. "There's just something about a wagging tail that makes me happy."

Originally published in Ladies' Home Journal, July 2009.

Wednesday, June 24, 2009


I wanted to share some questions I've received from someone who is embarking on her testing and diagnostic journey. For me, it is good to share the bios of other folks because when we share details, we share ourselves. Melissa, like me, planned a wedding and struggled with the stress and LOOK of the wedding. I bailed but she finished it wmth her big wedding. Even a small piece of life like this can bring your closer to people who are like you, know what you've been through, and are therefore the best ones to take care of you as you get ready for surgery.


On Jun 21, 2009, at 11:24 P, Melissa wrote:

Hey Melissa,
I wanted to say thank you so much for your help today. It was nice being able to talk with you about things, and I look forward to talking with you tomorrow. I wanted to give you a general time line of my symptoms, etc. just so it will help you know a little more about my situation. It's easier for me to type it out, I get kind of lost with it all when I talk about it sometimes.

I don't know when all of this actually started, if it is Cushings, but when I was a young girl I was always a good weight. Then in forth grade I gained fifty pounds. (Right before I gained the weight I was diagnosed with asthma, and was put on steroid inhalers- at one point I was on four different inhalers. Often had to take steroid asthma breathing treatments at hospital and eventually had to buy the machine for home. Also went on steroids for bronchitis at least twice a year.) I remember too that I had very large eyebrows, etc. and more hair than normal for that age. My hair changed texture as well, going from very straight to very frizzy. I struggled with my weight in middle school and high school. In college I was able to combine exercise with diet and maintained my weight around a size 14. When I did do a diet, like the Atkins it was successful during college . I worked at Banana Republic in college as the window display designer, and so I was very active with my job.

Once in college, went off inhalers since I wasn't at home. Did fine without them, didn't have asthma or problems like I had in high school. Weight was more easily managed.
(Off inhalers 2001-2005)

Here's my recent timeline:

2004- Size 14 and in college, started having some difficulty with concentrating in class, etc. Neck pain and fatigued more.

2005- Gained 60-70 lbs. between 2004-2005. Didn't change eating habits or lifestyle, tried to exercise more and wasn't able to lose weight. Started having mood swings more often, cried a lot. Then in Fall of 2005 started having headaches and dizziness. Almost passed out twice in classes, and had to have people walk me to a car and take me home. Doctors said it was my asthma, and put me back on inhalers (I don't know why headaches and dizziness would be considered asthma related, but I went ahead and took them. - Stopped them again in 2006) Tried Weight Watchers and Curves to lose weight, not successful.

2005-2006- Planned wedding, anxiety increased. Headaches and dizziness increased. So did fatigue and neck and jaw pain. Blurry vision, fatigued, not able to move items on the floor at work. Got married in 2006 (Fall)...had to quit job in November, would get very sick feeling, sometimes unable to get out of bed. Doctors diagnosed neck pain and headaches as "TMJ." Went to two TMJ specialists who fit me with a brace and did pain injections. Nothing helped the headaches, or pain. I was also starting to get times when my heart would race even though I didn't feel anxious. I would get a tingling or energy feeling in my muscles. Even woke up with heart racing sometimes. Heat and cold sensitive. Went to physical therapy on doctors recommendation for neck pain. Didn't help, went for over four months.

2007- Doctors tested for Lymes and MS, both were negative...they treated me for Lymes ("just in case" since I had been in a Lymes area- Wisconsin) with one month of Doxcycline. It didn't help. Daily pain. Daily headaches. Would feel shaky, and was unable to do even small tasks around the house without pain or fatigue. For about six months even blow drying my hair was hard, would get pain and fatigued doing even that. Went to Mayo Clinic, and they diagnosed it all as Myofascial Pain Syndrome and Migraines. Did not respond to migraine medicine. They also diagnosed my frequent heartburn as Gastritis. Took medicine for the heartburn, which was strong and used for ulcers and gastritis...heartburn didn't respond to the medicine after six months. They also tested my heart since it would race periodically, it checked out ok.

Found a counselor and went for a year, to deal with the chronic pain and with the situation (not having a diagnosis that fit or anything that helped). Taught me breathing techniques to help when anxiety happened.

2008- Tried Atkins diet to lose weight, wasn't successful at losing any weight even after four months. (Husband lost 15) Tried a new general doctor, who said Mayo was wrong, that since I had neck and shoulder pain that the headaches weren't migraines..they were tension headaches. Medicine still didn't help. Still fatigued, would stay up late at night. Had been doing that for a few years, where I am unable to go to sleep until 2 or 3 most nights. I will be fatigued all day, and then have more energy at night. Doctors wanted me tested for Pseudotumor Cerebri, had two spinal taps and went to neuro opthamologist. Did not have pseudo tumor. Went back to general doctor who said it was al probably Fibromyalgia and to just forget the pain, dizziness and fatigue. Insulin levels high but glucose ok. Wanted to put me on Metformin. Thyroid functions all ok.

2009- Tried cutting out most sugar to lower insulin instead of Metformin. Insulin levels are now normal. Have cut out most sugar and have not lost weight. I have cut out pop for three years, still have not lost weight. Eat mostly fruits, veggies, lean proteins, and high fiber foods. Get plenty of water. Exercise is hard, but have tried intermittently to exercise consistently over the past three years...painful and get fatigued very easily. Doesn't help me lose weight either. Went to a headache doctor who told me I have Metabolic Syndrome probably (Even though Cholesterol- ok and triglycerides- ok), wanted me to do to Atkins Diet to lose weight and said all my symptoms would just go away if I did the diet. I told him I'd tried it the year before and couldn't lose weight, plus none of my symptoms went away when I did it. He told me to try it anyways. Went back to family doctor who says it is all because I have low vitamin d and I'm overweight. Tells me since I have missed 7 of 12 periods that I probably have PCOS. I have also had pain behind my eyes and an uneasy feeling behind my eyes. Sometimes see floaters and bright spots, not in combination with a headache. I also often see greyish spots in vision. Kind of like there's a fuzzy wall between me and whatever I'm looking at... Lights at night often have a halo around them.

That's just a general time line, but when I went online to look for things with hormones and headaches Cushings came up. I hadn't heard of it. Then I read your blog and Cushings Help and things I didn't even realize were symptoms were listed. I have most of them... The staying up until 2 or 3 at night. The stretch marks. (Mine go from silver in the morning to really dark pink and purple at night - or range during the month) I have them all over. (Stomach, back, hips, chest, arms, etc.) My face has gotten more round. I have the hump. Actually quite a nice one which I just thought was normal...! :-) My weight is mostly in my stomach. I also have some hair loss...which my mom kept thinking this was all from my thyroid because of that - but my thyroid is fine. (Hair in tub and on floor, have to dust it off after styling hair) I've missed 7 of my last 12 periods. I have more facial hair than I used to...more on lip, etc. darker. I have the problems with concentration, I had to take an incomplete for the first time this semester (I'm in Grad school online through the Savannah College of Art and Design because it was the only way I could continue my education even though I feel this way). I forget what I'm going to say a lot of the time, and I have a very hard time writing papers for's often hard to put information together.

One main thing you wrote is that you got pain going up the stairs. That really clicked for me, because I have a VERY unusually hard time going up stairs. I know I'm overweight but it's not just being out of breath, I get PAIN. I've tried to tell my doctors that and they tell me it's just because I'm overweight by it hurts in my neck and shoulders and head, as well as my legs, etc. Some times it even feels like a "steam pot" in my head, just like it's going to burst from pain. I get that just when I stand up some times too. Even gardening is hard, I get a lot of pain and very fatigued doing small stuff. I even have the muscle weakness, one thing that I've noticed that's really hard is pulling clothes out of the washer. My arms just kind of give out on me doing that.

Sorry if I've typed too much, it's just easier for me to write this all down for you. I get side tracked easily on the phone or talking with people about all of this because it's been so much.

Do you think with my history that's it's a good idea to test for Cushings? I hope I'm on the right track, but things just seemed to match the symptoms to a T. I read stuff on Cushings Help and I'm like "That's me!" It's weird. I am scared to even hope that it's an answer. I've been through so much. It's been hard being newly married and graduating from college...only to have all of this happen. I really appreciate your help, ideas, etc. I hope I can help you in any way as well. Thank you again and I look forward to talking with you tomorrow.

Melissa :-)


My dear sweet Melissa.

I'm not a doctor but I play one on the internet. However, do not substitute my advice for anything that a medically trained professional might give you. Wow. Even for disclaimer purposes, that is difficult for me to say!.

You have done a wonderful thing in capturing your story, your life in writing. You took the time to write it out to me, but you will use this time and time again to tell your Cushing's story to nurses, doctors, surgeons, and future blog readers.

You are on your way to a better health already. You have taken control.

My hunch, like yours, is that you have Cushing's disease. Pituitary Cushing's because of your eye problems and headaches. But interesting to see the mix of synthetic steroids through your time line. Are you on steroids currently? We'll have to see how this plays into things. May have aggravated your pituitary Cushings.

I recommend that you begin to test for Cushing's.
Stage 1: at home or nearby: watch your symptoms and get day time tests done.

Stage 2: travel to Seattle to see a Cushing's specialist for night time testing, which is critical for showing a disruption of diurnal variations.

Do you have good insurance coverage? PPOs create less hassle for the patient, so if possible, switch that over. More expensive, but less hoops to jump. You will find this process is long and difficult anyway. If you can throw a little money at it and make stronger faster better decisions by choosing your own doctors and dropping the need for referrals, then I say do it. We switched from HMO to PPO, and it saved us time. I know it did.

My first recommendation is to call Dr William Ludlam, neuroendocrinologist at the Swedish Hospital, Cherry Hill Campus in Seattle, WA. It may take a few months to get an appointment for Camp Cushie, as he only accepts 3 patients for the week long testing spots. Set the appointment. It is worth it. Traveling there got my my highest highs in midnight cortisol and 4 am ACTHs.

Dr. Ludlam,, 206-320-2800. Email him this time line and tell him of your plans to try local testing before you come out there.

I suggest making a second appointment with a more local doctor in hopes that this doctor will begin ordering some basic Cushing's tests. This will be particularly helpful in catching tests during the day. Then you go on to Ludlam and the Swedish for night time tests, since few facilities and hospitals are set up to accommodate that intensive schedule of blood draws. That office manages that process very well.

When I went to see Dr Ludlam, I went after I had initially seen a local endo. I did not get any high results from day time testing with local yokle. So, I travelled without any high results on Cushings tests. I traveled there with hope and instinct on my side. I got my highs there (4 am ACTH because tumor fires off at that time for most Cushies, they don't know why; and midnight cortisol blood and salivary).
On the plane ride home--after I got my medical records--I couldn't stop smiling.

Set appt with other recommended endocrinologist. He can order cortisol labwork (cortisol blood draws at 8 am and 4 pm on same day). Cortisol is highest at 8 am to wake you up, 4 pm cortisol is roughly half of 8 am, then cortisol levels at midnight--tested in saliva or blood serum--should be 0. Any abnormality in this pattern (also known as circadian rhythm or diurnal variation--look it up) indicates a flaw in the feedback loop of the hypothalamus-pituiatry-adrenal axis, or HPA. This means CUSHINGS.

Always make sure they do cortisol blood draws and ACTH plasma draws at the same time. You need both at each drawing. Then, make sure they process the ACTH according to specifications: click here to learn about all tests

Even if you don't know it all, learn the language. Doctors refute you less if you are knowledgable and speak their language. Read the medical literature. Discuss it with a Cushie friend. You must be able to present your case to doctors who have many other patients to see. It's your one shot to get the right information to them.

A short note about me, I think I've had a milder course of Cushing's since I was 11. That's 25 years. I plan to update my timeline going further back with photos, etc.

So, Melssa and any other newbies reading this. Here are my suggestions based on what worked for me. If you decide to travel to Seattle, there is other info I can post here about where to day for cheap (in the hospital itself--like YMCA) and how to get your records before you leave, etc. I can help, and I want to help. I hope to be online more, so my plan is to answer each of these requests as they come in. Be patient with me because my dear little Elena wants me all the time, and sometime I can entertain her in other ways... but just for short bursts of time.

OK. Sleeping meds are really fully working. Better reread this in the morning to see if I made since! Thank you Ambian 10 mg!

Saturday, June 20, 2009


From Sweet Sue in Houston, through Facebook:
Melissa, if you can see this, hope you are doing okay with good thoughts and prayers your way. Let us know if you need something.


Hi Sue. Thanks for checking on me. You are so sweet. I am doing well. I am trying to write stuff up to post on my Cushing's Moxie blog. I'm trying to get a follow-up email set up, too. People may be wondering how I am, and I don't want them to worry.

I am doing well, better than expected. I have to remind myself though, it is all synthetic. My body is not making cortisol/steroids on its own, and any good feeling now will soon be replaced with severe withdrawal symptoms as they lower my dose of hydrocortisone week by week.

BUT I am happy.
I feel more in control.
Optimistic to be moving forward.
Happy to be me.
Happy to have my husband, miracle baby, family, and friends.

It's all good. :)

They must have pushed through an extra dose of clarity with my anesthesia last week.

~Cushie Melissa


You may be dropping by to check on me after my surgery. I am doing well. I'll post more soon.

For now, I want to take a moment to post a story that many Cushing's patients have accepted as their own. We think about spoons and nod our heads in understanding. Even though we didn't author this story, we feel Christine could be writing about our lives.

Please take a few moments to read Christine Miserandino's personal story. It is an eye-opening look into the life of a person with a chronic sickness or disability.

Especially, I want to say thank you to Christine, from all of us out there suffering from a disease that people don't understand.

Read Christine's Spoon Theory here.

I've also posted a Kate's Letter to Friends and Family that may help foster kindness and understanding for Cushing's patients. You can read that previous post on my blog by clicking here

Happy weekend!
~Cushie Melissa

Friday, June 19, 2009

GIVE ME A P: Why the Pituitary Gland Needs a Cheerleader

From the pituitary center at the Oregon Health and Science University. Very helpful info. Details why pituitary patients suffer for too ling and wind up self-diagnosing.


How Do I Work With My Doctor To Find Out If I Have A Pituitary Disorder?

In many cases, patients with pituitary disorders actually suffer for years with their condition before it is recognized; all too often, multiple medical specialists fail to recognize the underlying source of their symptoms. This can be an extraordinarily frustrating and costly experience and can leave a patient ill for many years.There are many reasons why the medical community does not easily identify pituitary tumors and pituitary diseases.

First, pituitary disorders are relatively uncommon. This means that primary care providers often do not have the requisite experience to easily recognize these disorders in a clinical setting.

Second, the physical signs and symptoms of pituitary disorders can be common to many different diseases. Together, these obstacles can significantly delay the diagnosis and treatment of pituitary disorders. By searching the internet, reading literature, and talking to other patients, it is sometimes the pituitary disease patient themselves who ultimately identify the pituitary as the source of their problems. Fortunately, once considered, pituitary disorders can be typically diagnosed with a few tests. To aid both patients and their physicians, we have provided a link below to the printable PDF file, "The Basic Pituitary Tumor / Pituitary Disease Work-up." This work up is also outlined in the section, A Clinicians Guide to the Work-up of Pituitary Disorders. The OHSU Pituitary Disease Unit is available to aid in the interpretation of these tests.

For more details on the signs and symptoms of pituitary tumors or pituitary diseases, please see the sections Diseases of the Pituitary -- A Basic Overview or A Clinician's Guide to the Work-up of Pituitary Disorders. (Click here).

Monday, June 15, 2009

Goin' Home

I got released fromthe hospital today around noon. I'm feeling bad but that is a good sign.

We are about 50 miles from the house. We get to see Elena soon! I miss her. I haven't seen her since Thursday morning. It is the longest I have ever gone without seeing her. I can't pick her up because I can't lift more than 10 pounds and she weighs 20! She will just have to be gently placed in my lap. I will take that baby loving any way I can get it. I miss her!

Ok. Gonna go. I'll post more details soon. I am good and happy and SICK.

Sunday, June 14, 2009

PITUITARY SURGERY: I Did Survive (to be sung like Gloria Gaynor)

Hi everyone. Day 4 in the hospital, and I am doing well. I'm really sleepy, so I will post the highest of highlights, then I'll scoot.

From Neurosurgeon Jukebox Hero:

---NS found a 3 millimeter tumor on the left, just like he saw on both 3T MRIs. My IPSS in November 2007 confirmed the pituitary as the source of excess ACTH production, which is the purpose of the IPSS test. IPSS show lateralization, or which side of the pituitary the tumor is on--only 85% of the time. In my case, my IPSS showed the tumor on the right; but since my NS saw the tumor on the left, just like in the higher powered 3T MRIs. So my IPSS fell in the 15% category of the IPSS failing to show accurate lateralize. The NS located a tumor only on the left. He did explore all around the gland, looking for any other tumors, but he said "my anterior and posterior pituitary lobes were easily separated" and it's why he thinks I didn't face diabetes insipidis or DI. This is different from sugar diabetes. Both the NS and e endocrinologist say that DI usually shows up in the first 48 post op. It is now nearly 72 hours post up. Yay!! Endo did mention that if I started getting up 3 to 4 times a night to urinate, it could be DI. I am supposed to notify her and she will call in the prescription for oral DVAPT.

[BLOGGER'S NOTE: In April 2011, another neurosurgeon at MD Anderson Cancer Center in Houston removed a 3 millimeter tumor on the right side of my pituitary. So, IPSS was correct after all.]

--- NS did not use a fat plug.

--- NS said there is less than 1% chance that I will develop a CSF leak or cerebral spinal fluid leak.

---he said my tumor was the classic Cushing's tumor. It was encapsulated nicely but when he resected or cut it open, there was a milky liquid inside. It even ran out of tumor some. He scooped out tumor, milky liquid, and a little bit of normal tissue to ensure he got all of the dastardly Cushing's cells. Pathology report is expected within a week or so. Surgeon is confident it was Cushing's aka ACTH-secreting pituitary tumor.

--- he worked with the ENT during surgery. ENT cut through the sinus, then the neurosurgeon punched through the sella turcica on to the pituitary. So, after NS removed tumor, ENT placed stitches to close off incision sites in sinus, then stitched in stints to keep my nose aligned, then placed tampon-like packing into both nostrils to catch blood coming from incision. After only 12 hours post op, the neuro critical care nurse removed the bloody cotton tampon things the next morning after a quick hit of 2mg morphine. Not too bad, really.

---he said he bets I have been educating all the nurses. I told him he was correct. Then he said they should put me out on the conference circuit so I can present my story to educate more doctors. I told him I would love to do that. I see Vanna White booth time and waving in my future!

Tuesday, June 9, 2009


During our research for Cushing's disease and its post-op counterpart Addison's disease, Jonathan and I have turned the internet upside looking for stuff. Reading reading reading. This was one very interesting historical fact I didn't know.

President John F. Kennedy suffered from Addison's disease, or adrenal insufficiency. The John F. Kennedy Presidential Library includes a four-page summary of his condition and how he handled it as he ran several campaigns.

As an aside, we have been doing family research on I found a fourth cousin who traced our shared side of the family to the Kennedys. My grandmother and Rose Fitzgerald Kennedy are 8th cousins, and JFK Jr. and I are/were 10th cousins.

Perhaps adrenal issues run in our family....?

Sunday, June 7, 2009



I have been focusing on pregnancy, baby Elena, and family for 18 months. She is almost 9 months old now. Elena is fantastic beyond measure. She is a wonderfully curious and loving child. She is a very good and happy baby. I am proud to be her mama!


Raising a baby while having Cushing’s has been rough on Jonathan and me. I do as much as I can, but he picks up the slack, after working his 40+ hours. He has been wonderful to Elena and me. Through this experience, we have grown closer and stronger both as a couple and a family. In the end, I know that while my house is not as clean or organized as I would like, I know that I have done the one job that was most important. I have cared for my precious Elena every day. She is happy and healthy. We are so close. That’s what really matters.



The orginal plan was to nurse Elena for three months, then wait three months to have pituitary surgery in March 2009. However, when the time came, we felt Elena was just too small to wean after only 3 months. We adjusted our schedule. I nursed her for seven months, set up my doctor appointments for late May, and weaned her in April. The goal? Pituitary surgery in early summer 2009. (I mention this here because breastfeeding keeps the pituitary active by producing prolactin, the hormone necessary for milk production.)

On May 27, 2009, we traveled to San Antonio. We met with the endocrinologist who diagnosed my Cushing's in December 2007. She sees that my symptoms have continued and my lab work continues to show pituitary disease (high cortisol, high ACTH, low IGF-1=70, low vitamin D=15, rising a1c=6.1). She is willing to follow me post op—partnering with my local endo at home--and is ready to do it if the neurosurgeon is ready. She trusts him completely, and she sends all of her pituitary cases to him. She tells me he is well known in Texas for taking the difficult surgical cases that others say are inoperable… and he gets it done.

On May 28, 2009, I had a 3T MRI. This was the second time I had an MRI at this facility. I was in the same room as before. After the usual prep, I was lying on my back and they moved me into the long tube machine thing.

I asked, “Are my feet showing?”

Tech said, “Yes.”

I asked, “Is this a 3T MRI machine? I don't think my feet stuck out last time.”

He said, “No.”

I said, “My neurosurgeon ordered a 3T. It’s what he needed last time.”

He hit the button to slide me out of the machine and checked the papers.

He said, “Yes, we need to move you to the other machine. It was written on the second page of the order, and there was a paper clip covering it.”


Several techs did tell me that my neurosurgeon is the one of the best there at the hospital, and when the other neurosurgeons need help during surgery, they call my neurosurgeon. =)

Ok, so although we were late after the MRI switcheroo (I had to wait my turn for the machine), we met with my neurosurgeon. Still like him. We really, really like him. This is the same one who ordered the inferior petrosal sinus sampling (diagnostic!) and cleared me for surgery in December 2007. He understood our need to try for a baby, and he was so excited when we showed him a photo of Elena. I felt he was really rooting for us. I explained I was ready to get back on the surgery fast track.

He said he read the MRI films on his computer, consulted with their neuroradiologist, and they see two suspicious areas on my pituitary. One is located on the right side, one is located on the left. He couldn’t say whether they increased in size.

The neurosurgeon says he is ready to go in and get the tumors out. HE CLEARED ME FOR PITUITARY SURGERY.

The best part is that the neurosurgeon said, and I quote, “I don’t see any reason to make you go through the hassle of retesting” since my symptoms, lab work, MRI and IPSS results all point to Cushing’s disease. He said, “We won’t find out anything we don’t already know.” If you are a Cushie reading this, you know what a relief that is. Plop plop fizz fizz!


On June 1, 2009, I get the call. Surgery in 10 days!

When: Thursday, June 11th at 2:30 pm (I fast from midnight on!)

What: pituitary surgery (endonasal transphenoidal pituitary resection)

Length: surgery should take 2-3 hours

Where: San Antonio, TX

Hospital stay: 3 to 4 days

Recovery time: THIS WILL NOT BE A QUICK RECOVERY. Doc says we will feel much worse before we feel better. Most patients take 6 to 24 months to feel better. Extended recovery time is not from the surgery but from the hormone replacement process.

Feelings: relief, excitement, anxious. READY.

I know many of you will not be able to contain your outpouring of love and support for me, and you will want to send flowers. PLEASE DO NOT SEND FLOWERS. The surgeon removes the tumor(s) through my nose and sinus cavities. Flowers in the patient’s room are not too friendly to the recovering nose. Don’t worry, an email will do nicely, too.


I’ve added pituitary surgery information a lot of to my Cushing’s website.
You will find all that you ever wanted to know below.

For surgery updates, please check back here often. We will be posting on Facebook, too. We will have proxies post on my wall, so be sure to check there as it won’t show up on my status updates. I will do my best to keep everyone posted. Forgive us if we get a little busy!

So, there you have it. I love that it all worked out according to our plan. I can’t help but smile at my ability to pull all of it off. I have Jonathan, I have Elena, and I have my feet moving in the right direction. All that makes me smile.




Although I have made many transitions in the past few years (career to no career, single to married, 1st home to 2nd home, childless to mother, healthy to sick), I have really struggled with one aspect of Cushing's disease. To this day, I still can't shake it.

How do I explain

a disease that no one has ever heard of
in a sound bite that will hold the attention of the listener
while being factually accurate and
true to what I am experiencing
while describing the pervasive devastation to every part of my body
but without being Debbie Downer?

I've realized this, for me, has been mission impossible.
I give too many details, and their eyes glaze over.
I lie and say I am fine, or I gloss over many details.

The result?
1) I haven't adequately explained my condition to others.
2) I feel lonely thinking no one understands.


So, tonight, the last Saturday before my pituitary surgery, I make my final attempt. I'm trying something different. I'm using someone else words to describe all that I can't.

I present to you an eloquent description of my life as a person with Cushing's disease. Kate is a dear friend who is a Cushing's survivor, advocates for Cushing's awareness, and has been a wonderful leader for all Cushies. She had the courage to capture the patients' experience--and it's different from what you will read on many websites describing this disease. We thank her for that.

Kate is featured in the video clip The Science of Obesity.

I hope you will take a few moments to read Kate's letter.


Dear friends and family:

I am writing this letter to share with you some basic facts about Cushing's Disease and the recovery process so that you will have sufficient information to form realistic expectations about me and my ability to engage in certain activities in light of this disease and its aftermath.

As you know, Cushing's is a rarely-diagnosed endocrine disorder characterized by hypercortisolism, or the overproduction of cortisol. Cortisol is a hormone produced by the adrenal glands. It is vital to regulate the body's cardiovascular functions and metabolism, to boost the immune system and to fight inflammation. It's most important job is to help the body to respond to stress.


The adrenal glands release cortisol in response to stress, so athletes, women experiencing pregnancy, and those suffering from alcoholism, panic disorders and malnutrition naturally have higher-than-normal levels of cortisol.

People with Cushing's Syndrome live life with too much cortisol for their bodies as a result of a hormone-secreting tumor. Mine is located in the pituitary gland. Endogenous hypercortisolism leaves the body in a constant state of "fight or flight," which ravages the body and tears down the body's major systems including cardiovascular, musculoskeletal, endocrine, etc.

Symptoms vary, but the most common symptoms include:

* rapid, unexplained weight gain in the upper body with increased fat around the neck and face ("moon facies")
* buffalo hump
* facial flushing/plethora
* muscle wasting in the arms and legs
* purplish striae (stretch marks) on the abdomen, thighs, buttocks, arms and breasts
* poor wound healing and bruising
* severe fatigue
* depression, anxiety disorders and emotional lability
* cognitive difficulties, including problems with concentration, memory, word recall
* sleep disorders due to abnormally high nighttime cortisol production
* high blood pressure and high blood sugar/diabetes
* edema
* vision problems
* premature osteoporosis
* in women, signs of hyperandrogenism such as menstrual irregularities, infertility, hirsutism, male-patterned balding and steroid-induced acne.

As you can see, the effects of the disease on the body are dramatic. Worse, the psychological and emotional effects of having a chronic, debilitating and disfiguring disease range from distressing to demoralizing.

Imagine that, in the space of a year, you became unrecognizable to those around you and to yourself. You look in the mirror, but the person staring back at you is a stranger. You endure the stares and looks of pity from those who knew you before Cushing's, fully aware that they believe you have "let yourself go" or otherwise allowed this to happen to your body. Nothing you can say or do will persuade them otherwise, so at some point, you stop trying and resolve to live your life in a stranger's body.

You feel increasingly sick, but when you explain your array of symptoms to your doctor, you are dismissed as a depressed hypochondriac who needs to diet and exercise more. Worse, your family members think the same thing — and are often quick to tell you how you need to "change your lifestyle" to overcome the effects of what you eventually will discover, once properly diagnosed, is a serious and rare disease.

If only it were so simple! No one would choose to have Cushing's. Those of us who have it would not wish it even on our worst enemy.

Most people with Cushing's long for the ability to do simple things, like walk a flight of stairs without having to sit for half an hour afterwards, or vacuum the house or even unload a dishwasher.

One of the worst parts about this disease is the crushing fatigue and muscle wasting/weakness which accompanies hypercortisolism. Not only do we become socially isolated because of the virilizing effects of an endocrine tumor, which drastically alters our appearance, but we no longer feel like ourselves with regard to energy. We would love to take a long bike ride, run three miles or go shopping like we used to — activities, which we took for granted before the disease struck. Those activities are sadly impossible at times for those with advanced stages of the disease.

Sometimes, as with any serious illness, performing even basic tasks of daily care such as showering and dressing can exhaust the limited reserves of energy available to a Cushing's patient.

How do we explain to you what it's like to watch our lives slip away? How do we explain to you what it's like to watch your lives move on in fulfilling ways while ours stand still? What response is sufficient to express the grief and frustration over losing so much of ourselves? It is often difficult to find the strength to explain how your well-meaning words of prompting and encouragement (to diet or exercise) only serve to leave us more isolated and feeling alone.

Though we wouldn't want it, we wish our disease were as well-understood as cancer so that those who love us would have a frame of reference for what we go through. With Cushing's, there is such limited public awareness that we are left to describe the effects of the disease from a void, often with limited understanding from those who love us most, which is disheartening.

The most frustrating misconception about this disease is that we somehow are "doing this to ourselves," or delaying recovery because we need to continue steroid replacement or lack the energy to exercise often, which is sadly false. Trust me that we would love to have that much control over such a terrible disease.

Fortunately, there is a good likelihood of remission from Cushing's in the hands of a skilled pituitary surgeon. Unfortunately, the long-term remission rate is only 56%, meaning that 44% of people with Cushing's will require a second (sometimes third) pituitary surgery, radiation or bilateral adrenalectomy to resolve the hypercortisolism. Without successful treatment, Cushing's leads to death. Even with successful treatment, I will have to be monitored for possible recurrence for the rest of my life.

After surgery or other treatment, the recovery period can last months or even years. Because the tumor takes over control of the body's production of cortisol, the adrenal glands, which had lain dormant prior to surgery, require time to start functioning properly again.

Until this happens, we must take synthetic steroids or else risk adrenal insufficiency or adrenal crisis, which can be quickly become life-threatening. Careful monitoring of our cortisol levels is critical during the weaning period. It is a rare but sad fact that some people's adrenal glands never return to normal, and those people must continue to take hydrocortisone or prednisone — sometimes for life — simply in order for the body to perform correctly its basic systemic functions.

The physical recovery from surgery can be quick, but the withdrawal from hydrocortisone can be a lengthy and extremely painful process. As I described above, Cushing's causes a tearing-down of muscles and bone. While there is an over-abundance of cortisol in our bodies (as a result of the tumor), we often can't feel the effects of the muscle-wasting and bone deterioration because of the anti-inflammatory action of cortisol. Upon weaning, however, these become painfully (literally!) evident.

The physical pain experienced while weaning from cortisol has been described as worse than weaning from heroin. When cortisol levels are low, one experiences the symptoms akin to a really bad flu, including severe fatigue ("like a wet cement blanket laid on top of me"); weakness and exhaustion; nausea; headache; vomiting; mental confusion.

It is imperative for people who are on replacement steroids after Cushing's surgery to carry extra Cortef (or injectable Solu-Cortef) with them at all times in addition to wearing a medic alert bracelet so that medical professionals will be alerted to the possibility of adrenal insufficiency in the event of an adrenal crisis.

People who have struggled with Cushing's Syndrome all hope to return to "normal" at some point. Though none of us want to have Cushing's, it is often a relief finally to have a correct diagnosis and treatment plan. For many, there is a gradual resolution of many Cushing's symptoms within a few years of surgery or other successful treatment, and a good quality of life can be achieved.

Regrettably, this is not possible in every case. Depending on the severity of the disease and the length of time before diagnosis and treatment, the prognosis can be poor and lead to shortened life expectancy and diminished quality of life. This is not a choice or something we can control, but it is the reality for some people who have suffered the consequences of long-term hypercortisolism.

The best support you can give someone who is suffering from Cushing's or its aftermath is to BELIEVE them and to understand that they are not manufacturing their illness or prolonging recovery. Ask them what they are able (and not able) to do, and then be prepared to help them in ways that matter — whether that be to bring them a meal or help them to run errands, pick up prescriptions from the pharmacy or clean their house.

Because it's these little everyday tasks, which can fall by the wayside when someone has (or has had) Cushing's, and these are the things we miss the most: doing for ourselves.

Ask us questions about the disease, and then actively listen to what we say. We know you don't know much about Cushing's — even our doctors sometimes lack information about this rare disease. But know we appreciate the interest and will tell you everything you want to know, because those of us who have it necessarily become experts in it just in order to survive.

Thank you for caring about me and for hearing what I am saying in this letter. I know you love me and are concerned about me, and I appreciate that so much. Thank you also for taking the time to read this letter. I look forward to discussing further any questions you might have.

In the meantime, I am attaching a brief article written by a woman who recently was diagnosed with Cushing's. I hope hearing another person's experiences will help you to understand what I'm going through so that when we talk, we will be coming from a similar starting place.



Dear Family & Friends,

Endocrinologists (doctors who specialize in Cushing's Syndrome and its related illnesses and issues) realize the medical aspect and know the damaging effects that Cushing's has on the body. Family and friends see their "Cushie" (affectionate nickname for a person with Cushing's Syndrome) suffering and know they are hurting physically and often times mentally and emotionally. However, understanding the debilitation of Cushing's and how it can affect every aspect of a person's life is "only truly realized by those who have experienced the syndrome."

The CUSH organization, a non-profit organization ran by volunteers who have Cushing's or had Cushing's is furnishing this letter for patients to provide to their family and friends in hopes of providing a better understanding of the syndrome.

Cushing's Help and Support, a non-profit family of websites maintained by MaryO, a pituitary Cushing's survivor, also provides this letter for patients to provide to their family and friends in hopes of providing a better understanding Cushing's and its many aspects.


We're sorry to hear that your family member or friend has Cushing's Syndrome. Having Cushing's is like a war going on inside of the body. The person may feel better at times then at other times. It's common for a Cushing's patient to have burst of energy and then all of the sudden they become lethargic and don't feel like moving a muscle. There are many symptoms that are associated with Cushing's. They include weight gain, fatigue, muscle weakness, shortness of breath, feeling achy all over, headaches, blurred vision, mood swings, high blood pressure, stretch marks (striae), buffalo hump, diabetes, edema, and the list goes on. Hormones affect every area of the body.

Cushing's patients are in a sense like snowflakes….we all have the same composition, "an illness that is caused by excessive cortisol" However, no two Cushing's patients will be exactly the same. Not everyone who has Cushing's will experience the same symptoms, treatment, or recovery. Because not all "Cushies" have these symptoms, it makes diagnosis even more difficult.

Cushing's causes the physical appearance to take on a different look due to weight gain, hair loss, changes in complexion, etc. This can be very disturbing when looking in the mirror. This can cause the Cushing's patient to withdraw from family and friends. Cushing's can be a very lonely illness. Cushing's patients often feel alone like everyone is against them and that no one understands.

Cushing's is not a prejudice disease, it can affect, young, old, white, black or other ethnic background, male and female, though it is more common in women than men.
Cushing's patients need to be able to take one day at time and learn to listen to their bodies. There will most likely be times when naps are needed during the day and often times they may not be able to sleep at night due to surges of cortisol.

Your Cushie doesn't expect you to understand Cushing's syndrome to the full extent. They DO need you to be there for them and try to understand to the best of your ability what they feel and not give up on them.

Often, a Cushing's patient may tend to be moody and say things that they don't mean. If this should happen with your Cushie, try not to take it personally and know that it's most likely caused by the elevated cortisol and disturbances in other hormone levels caused by the Cushing's and not from the heart or true feelings of your Cushie.

It can be very depressing and frustrating having so many limitations and experience things in life being taken from you. Cushing's patients are sick, not lazy, not hypochondriacs, or even the newer term "Cyberchondriacs". If a Cushing's patient says they don't feel like doing something or they express how bad they feel let them know that you believe them. One of the most frustrating things to someone who is sick is to have those you love not believe you or support you. Telling a Cushie to think positive thoughts will not make him/her well and will just be aggravating.

Testing procedures can be lengthy and this can become frustrating for the patient and family. Often, it takes a while for results to come back and this can be stressful. Don't look too far ahead; just take one day at a time and deal with the situation that is at hand at the present time.

After a diagnosis is made, then it's time for treatment. Surgery is usually the best treatment option for Cushing's that is caused by tumors. Don't be surprised if the surgeon's facility wants to run even more tests or redo some of those that have already been done. Your Cushie may have to travel a great distance to find a surgeon who is trained in these delicate surgeries and who has performed many of them.
Once the diagnosis has been made and treatment has been given, then it's time for the recovery process. Not all patients who have surgery are cured and they have to make a choice along with the advice of their doctor as to what their next treatment option will be.

The recovery from the surgery itself is like any other surgery and will take a few weeks to recover. The recovery process obtained from getting a cure from Cushing's is quiet different from other corrective surgeries.

A Cushing's patient's body has been exposed to excess cortisol, usually for quite a long time, and as a result, it has become accustomed it. When the tumor that has been responsible for the excessive cortisol is removed and the body is no longer getting it, this causes the body to have withdrawal symptoms. Withdrawal can be very difficult, causing an array of symptoms: muscle aches, weakness, bone and joint pain, emotional disturbances, etc. (Please read the "Adrenal Crisis" publication at the end of this letter.)

Thank you for reading this. We hope it will help you to understand a little more about Cushing's and the debilitating affect it can have on a person. Thank you for being there and supporting your Cushie during this time in their life. We realize that when a family member has Cushing's, it not only affects the individual but also other family members and those around them as well. Showing your love and support will encourage a speedy recovery for your Cushie.


While I started this blog to share my journey with Cushing's with friends and family, the more tangible, concrete, rewarding, and unexpected aspect of creating this blog is the feedback I've received from others... sick and trying to find answers. They thanked me for gathering information in this one spot. To those folks, I say, Thank you for taking the time to read my words.

Saturday, June 6, 2009


I have not actually done the wean itself yet. It comes after pituitary surgery!!

I found this helpful in explaining the overall hormone replacement process, and why it is "common" for Cushies to end up in the ER after pituitary surgery. I cannot attest to the tapering schedule and amounts of hydrocortisone to take and when. Please consult with your doctor. ~Melissa



The experience of cortisol withdrawal during the first several months after being cured of Cushing's can be very unpleasant. During this period, cortisol must be given back to the patient and then tapered off over time. Classic symptoms of this withdrawal process include fatigue, aching, and depression. Abdominal pain, nausea and vomiting, and dizziness are indicators that the cortisol withdrawal is occurring too quickly (adrenal insufficiency is occurring) and the hydrocortisone taper should be slowed.

There are two main phases that a cured patient will go through after surgery. The first is the cortisol withdrawal phase. The features of Cushing's disease are due to cortisol excess and the body reacts to having the cortisol withdrawn. To make the process tolerable (and safe), large doses of glucocorticoids are given to the postoperative patient and then tapered over a month or so as symptoms allow. This can be an awful experience for the patient marked by fatigue, depression, and body aches. Headache may be present but if severe (especially if accompanied by nausea and dizziness) may indicate that the taper is happening to quickly. After the initial withdrawal phase, the second phase is marked by the temporary need for continued glucocorticoid replacement (typically 20 mg hydrocortisone or 5 mg prednisone) until the hypothalamic/pituitary/adrenal (HPA) axis awakens. This phase may last many months and may last over a year. Until this axis awakens, the patient is adrenally insufficient and should be treated accordingly.

Assessment of Cure
Just as the initial diagnosis of Cushing's disease can be difficult to make, "proving" someone has been cured of Cushing's can be very challenging as well. One early indicator of biochemical cure is the measurement of very low (or undetectable) post-operative morning cortisol levels (typically measured 72 hours after surgery). In this post-operative setting, morning cortisol levels are typically low because normal ACTH producing cells in the pituitary have been suppressed by elevated serum cortisol levels. Therefore, the removal of the ACTH secreting tumor leaves no source of ACTH, the adrenal glands are no longer stimulated and cortisol levels plummet. It is important to note that as high as 30% of patients with long term cure of cushing's disease do not have a history of undetectable 72 hour post-operative serum cortisol levels. Therefore, if 72-hour post-operative cortisols are not below 5 ug/dl, further evidence should be obtained to confirm the presence or absence of cure.

After a patient has been tapered off replacement glucocorticoids post-operatively, it is important to demonstrate the normalization of the tests that were initially used to diagnose Cushing's disease. For example if a patient had a significantly elevated 24-hour UFC pre-operatively, it should normalize if a cure was obtained. Other evidence of cure is the dramatic resolution of the features of Cushing's disease. For example, many patients note a dramatic weight reduction in the first few months after surgery. By contrast, even in the context of a biochemical cure, features may resolve slowly. Even in the context of a biochemical cure, the symptoms of fatigue and depression can persist for many months since they are also the symptoms of cortisol withdrawal. It is important to note that even with an incomplete cure (i.e., not all the pituitary tumor was removed), many symptoms will begin to resolve at first but they usually return over time.

In general, when a cure is obtained, most of the features of Cushing's disease will reverse over time. Some of these changes can be dramatic. Some may take years. Of note, the need for medical treatment for high blood pressure and diabetes should be evaluated closely and will likely need to be tapered.

Finally, even in the hands of an excellent neurosurgeon, there is a recurrence rate of about 10% over time for Cushing's disease. Therefore, even in the context of a "biochemical cure", Cushing's patients should be monitored by history, physical, and biochemistry over time for possible recurrence of their disease. Work up and treatment are similar to those done at initial presentation.

Long-term Course and Potential Complications

Cured Cushing's are typically delighted with the resolution of most of their Cushing's symptoms. This can, however, take from months to even years to fully happen. As stated above, recurrence does occur and should be watched for by the patient and their clinician. Associated diseases such as diabetes mellitus, hypertension, and osteoporosis should be followed (and treated if necessary) although each may resolve fully over time as well.



Question: I have been trying to taper my replacement dose of hydrocortisone following pituitary surgery, and I have ended up in the Emergency Room several times due to adrenal insufficiency. I have been told that for my adrenal gland to start producing cortisol and working properly again, I need to be this low. Is that true? What tapering protocol would you recommend and what tests should be performed during the tapering phase?

Answer: These are very good questions. Tapering of hydrocortisone following the removal of an ACTH-producing pituitary tumor, bilateral adrenalectomy or a single Cortisol secreting adrenal tumor results in profound hypothalamic pituitary adrenal suppression, especially when it is successful. The reawakening of this axis may take six to nine months, sometimes longer.

In the interim, patients need to be replaced with glucocorticoid therapy. There is an additional confounding problem and that is when you have Cushing's, your body gets used to higher doses of glucocorticoids; therefore, such high doses need to be continued above replacement doses immediately after surgery and then slowly tapered.

Right after surgery we replace with Hydrocortisone 60 to 80 mg a day for two weeks and start a taper, diminishing 10 to 20 mg every 10 to 14 days, until you are down to physiologic, which is in the neighborhood of 15 to 20 mg per day.

We like to do a Cortrosyn stimulation test every two months to plot the hypothalamic pituitary adrenal recovery. Morning plasma cortisol before taking oral cortisone may also be useful, but we prefer the cortrosyn test. Once the Cortrosyn stimulation test is in the normal range, then Hydrocortisone can be safely discontinued, or tapered to a lower dose, then discontinued.

We do not suggest longer acting steroids, such as Prednisone, which might further prolong pituitary adrenal suppression. The use of Hydrocortisone alone is what is suggested immediately after successful surgery. There is not only a need for Glucocorticoid replacement to avoid adrenal insufficiency, there is a withdrawal from the high endogenous levels. When you withdraw from steroids, even though you are in the normal range for replacement, you will have symptoms of steroid withdrawal which include fatigue, depression, and muscle and joint aching. This is why endocrinologists will tell you that you will feel worse from steroid withdrawal after successful surgery than you felt with the Cushing's syndrome. The steroid withdrawal symptoms can last up to two years and they are again, fatigue, depression, and aching.

There is no good evidence that taking less steroid, or no steroid, accelerates the hypothalamic pituitary adrenal axis recovery. Certainly you cannot use high doses without continuing to suppress the pituitary adrenal axis, but in general, completely stopping steroids is not suggested, since adrenal insufficiency would be predicted under those sets of circumstances and also aggravation of severe withdrawal symptomatology.

In summary, it is important to treat adrenal insufficiency symptoms of lightheadedness and nausea, and also distinguish that from steroid withdrawal symptoms, which are fatigue, depression, and achiness, even though you might be protected from adrenal insufficiency.


I'm sharing a few links that may be helpful. I have collecting these websites for months while preparing for pituitary surgery. There are so many articles out there. Keyword searches are your friend. Mix it up. An abundance of information awaits you. Ex: pituitary surgery, transphenoidal, cortisol hormone replacement, post op pituitary surgery. Just use your imagination, and it will appear! Dedicate yourself to learning as much as you can about your condition. Knowledge is power.


Good transphenoidal pituitary surgery thingee to share with family

Answers From a Pituitary Surgeon

Frequently Asked Questions About Transsphenoidal Surgery For Pituitary Adenomas: A Patient Guide


Kate's Packing Tip

Kate's Pituitary Surgery Observations


**These links are included for you to get a sense of how different facilities manage their patients after pituitary surgery. The inclusion should not be substituted for medical advice. Please follow your doctors' care.

So you had your surgery-now what? Theodore C. Friedman, MD, PhD.

After Pituitary Surgery Instructions

Cushing's Disease after Successful Transsphenoidal Surgery - What to Expect and How to Manage

Learn more about hydrocortisone (brand name Cortef) and how this synthetic hormone will replace your new lower cortisol levels after surgery.


Learn more about how pituitary surgery may likely lead to secondary adrenal insufficiency.

Learn more about Solu-Cortef, the emergency injection of hydrocortisone you should always carry with you!!


The Pituitary Network Assocation (PNA) has done a fantastic job of putting together this list of frequently asked questions. I even learned something new while posting this! Thanks PNA, bok bok!


FAQs by Pituitary Network Association

– What is the pituitary?

The pituitary is a small, pea-sized gland located at the base of the brain that functions as "The Master Gland." From its lofty position above the rest of the body it sends signals to the thyroid gland, adrenal glands, ovaries and testes, directing them to produce thyroid hormone, cortisol, estrogen, testosterone, and many more. These hormones have dramatic effects on metabolism, blood pressure, sexuality, reproduction, and other vital body functions. In addition, the pituitary gland produces growth hormone for normal development of height and prolactin for milk production.


– Is "The Master Gland" connected to the brain?

The pituitary hangs from the hypothalamus, a part of the brain located immediately above it, by a thread-like stalk that contains both blood vessels and nerves. Hormones produced in the hypothalamus carry signals or messages to the pituitary gland. The hypothalamus serves as a "switching station" to relay signals from many different parts of the brain to the pituitary gland, which in turn transmits its own signals to various parts of the body. The pituitary is divided into a larger anterior region (adenohypophysis) and a smaller posterior area (neurohypophysis). It sits in a small pocket of bone in the base of the skull called the pituitary fossa, also known as the sella turcica, or Turkish saddle, because of the resemblance. The sella turcica is located deep within the skull, which can be imagined by drawing an imaginary line from the top of the nose through the brain to the back of the head, and from ear to ear. The point at which they intersect is where the pituitary gland sits.


– Why are pituitary disorders so hard to diagnose?

Pituitary disorders can cause a wide spectrum of symptoms, both hormonal and neurological, due to its location near the brain, the intracranial nerves and blood vessels and because of the vital hormonal control that the gland provides. Diagnosis of pituitary disease may be extremely difficult because it's often confused with other disorders. It is dependent on symptoms, signs on examination, blood tests and MRI findings. Direct access to the pituitary can only be reached at surgery.


– Which hormones are secreted by the anterior pituitary?

Thyroid Stimulating Hormone (TSH) causes the thyroid gland to produce and release thyroid hormones. Thyroid hormone controls the basal metabolic rate and plays an important role in growth and maturation. Thyroid hormones affect almost every organ in the body.

Growth Hormone (GH) regulates growth and metabolism.
Adrenocorticotropic Hormone (ACTH) triggers the adrenals to release the hormone cortisol, which regulates carbohydrate, fat, and protein metabolism and blood pressure. The adrenal glands sit above the kidneys and are also responsible for the body's fight or flight response.

Luteinizing Hormone (LH) and Follicle Stimulating Hormone (FSH) control the production of sex hormones (estrogen and testosterone) and sperm and egg maturation and release.

Melanocyte-Stimulating Hormone (MSH) regulates the production of melanin, a dark pigment, by melanocytes in the skin. Increased melanin production produces pigmentation or tanning of the skin; in certain conditions excessive production of melanocyte-stimulating hormone can cause darkening of the skin.

Prolactin (PRL) stimulates production of breast milk and is necessary for normal milk production during breast feeding.


– Which hormones are produced and/or controlled by the posterior pituitary or hypothalamus?

Oxytocin stimulates contractions of the uterus during labor and the ejection of milk during breast-feeding.

Antidiuretic Hormone (ADH) increases reabsorption of water into the blood by the kidneys and therefore decreases urine production. Also referred to as Vasopressin.


– What happens if the pituitary produces either too much or too little of these hormones?

An imbalance occurs, leading to more than a dozen disorders of the endocrine system. Deficiency of thyroid hormone, adrenal cortical hormone (cortisol) or antidiuretic hormone (vasopressin) is rapidly life-threatening. In patients with abnormalities of the other hormones, quality of life is significantly compromised.


– What causes the pituitary to malfunction?

Tumors (overwhelmingly benign), inflammation, infections and injury can cause the gland to malfunction, as well as metastasis or spread of other tumors to the pituitary (rare). Radiation therapy to the brain can also cause normal pituitary cells to malfunction.


– What is a pituitary tumor?

A pituitary tumor is an abnormal growth of pituitary cells. Pituitary tumors can either be nonfunctional (that is they do not secrete hormones) or produce specific hormones, such as prolactin (causing infertility, decreased libido, and osteoporosis), growth hormone (causing acromegaly), ACTH (causing Cushing's), TSH (causing hypothyroidism), or be nonfunctional (that is they do not produce hormones). These tumors behave according to their cell of origin and are named for the specific cell type affected. For example, if a tumor originates in a prolactin producing cell, the patient develops a prolactinoma-a prolactin secreting pituitary tumor that is common and usually treatable. High prolactin levels suppress production of the pituitary hormones (luteinizing hormone and follicle stimulating hormone) that stimulate production of estrogen or testosterone. Men with these tumors have low testosterone levels and lose their sex drive and eventually their masculine characteristics-hair, muscle, erections, and ability to produce sperm. Women with prolactin producing tumors often do not ovulate, experience low estrogen levels, and cease having menstrual periods. In both cases, patients with low sex hormones develop osteoporosis. It is important to remember that most pituitary tumors are benign and cancer is very rare. They have variable patterns of growth and affect different people in vastly different ways. Some are small and incidental, while others are small but cause hormone excess. Others may be rapidly growing mass lesions.


– Are pituitary tumors deadly?

If diagnosed early enough, the prognosis is typically excellent. If not, some tumors can grow into macroadenomas that press on the optic nerves (causing loss of peripheral vision and, in some cases, blindness), the brain (impacting function) and the pituitary (limiting or eliminating hormone production). Large tumors can also invade the cavernous sinuses, which house the carotid arteries, the veins to drain the eyes, and nerves involved in eye movement. Surgery around the cavernous sinuses is difficult and should be performed by an experienced pituitary surgeon. The tumors can also secrete too much of a hormone, causing hypertension, diabetes, mood disorders, sexual dysfunction, infertility, osteoporosis, arthritis, accelerated heart disease and death.


– Why is early diagnosis such a problem?

The confusing constellation of symptoms that can be produced by pituitary tumors and the difficult to visualize location make diagnosis very tricky. It is not uncommon for patients to have symptoms of either hormonal deficiency (caused by compression of the pituitary or its "stalk") or hormone excess (caused by unregulated production of hormones by the pituitary tumor). In a significant minority of patients diagnosis is not made until the individual has developed debilitating or life-threatening symptoms of heart disease or adrenal (uncommon), gonadal and/or thyroid insufficiency. Even in the 21st century death from a large pituitary tumor or hormonal deficiency still occurs, albeit rarely. Early diagnosis is usually a reflection of a high index of suspicion on the part of a physician. Unfortunately, many doctors have been taught that pituitary disease is rare, so it is not at the forefront of their list of possible diagnoses.


– How prevalent are pituitary tumors/disease?

Autopsy reports and radiologic and MRI evidence from around the globe indicate that one out of every five people worldwide has a pituitary tumor. The earliest study took place in 1936, when Dr. R.T. Costello of the Mayo Foundation conducted a cadaver study and found pituitary tumors in 22.4 % of the population (Costello R.T. Subclinical adenoma of the pituitary gland. Am. J. Pathol. 1936; 12:205-214). Statistics have not changed much ever since. The clinical significance of these findings are critical to determine.


– Why are these tumors so common?

We don't know because funding for benign brain tumor research is virtually nonexistent. That's about to change. In October 2002, Congress passed the Benign Brain Tumor Cancer Registries Amendment Act, which will force hospitals, clinics and doctors to report pituitary tumor incidence rates in the data collection of cancer registries. The problem remains diagnosis. No report of incidence rates is possible without it.


– Why aren't pituitary tumors/disease common knowledge?

There are four main reasons:

Pituitary tumors/disease present a vast array of symptoms, and it's often the symptoms that get treated, not the disease. As a result, pituitary patients can spend years being misdiagnosed as their tumors grow. People with undetected pituitary tumors can die of heart attacks, hypothyroidism, adrenal insufficiency or water balance problems, all of which can mask the main cause: a pituitary tumor.

Dollars spent. As a result, we have failed to answer the most important question: Why are pituitary tumors so common?

There is a lack of education within the medical community and among the general public.

The insurance industry hasn't caught on to the untold billions of dollars that could be saved through early diagnosis and treatment. Once it becomes clear that it's in everyone's best interest, the word will spread.


– How are pituitary tumors treated?

It depends on the type of tumor and how far it has invaded into the brain, as well as the patient's age and overall health. Three kinds of treatment are used: surgery (removing the tumor during an operation), radiation therapy (using high-dose x-rays/proton beams to kill tumor cells) and drug therapy to shrink and sometimes eradicate the tumor. Drugs can also block the pituitary gland from making too much hormone. A Transphenoidal operation can remove the tumor through a cut in the nasal passage, leaving no external scar. (Sometimes a surgeon prefers to go through an incision under the upper lip instead of the nose, also with no external scarring.) A craniotomy removes the tumor through a cut in the front of the skull; this is rarely done for large invasive tumors.


– Is pituitary tumor surgery risky?

Surgery is a common treatment, and it is almost always successful IF performed by a skilled and specialized neurosurgeon. The smaller the tumor, the greater the chance the surgery will be successful. Large tumors that grow upward (into the nerves that mediate vision) or laterally (into the cavernous sinuses that contain the major arteries to the brain-the carotid arteries) increase the risk of surgery and are generally associated with a lower probability of cure. Early diagnosis and treatment is the key.


– Is there a long recovery process from pituitary tumor surgery?

In most cases, no. Patients often report immediate relief from symptoms after Transphenoidal Hypophysectomy and little pain. Some leave the hospital the same day.


– How effective is radiation therapy?

Radiation therapy uses high-energy x-rays to kill cancer cells and abnormal pituitary cells and shrink tumors. Radiation for pituitary tumors these days almost always comes from a radiation source outside the body (external radiation therapy). Radiation therapy may be used if medication/surgery fails to control the tumor. There are several different types of radiation therapy.

Standard External Beam Radiotherapy uses a radiation source that is nonselective and radiates all cells in the path of the beam; in almost all cases other portions of the brain in the area of the pituitary are in the path of the radiation beam.
Proton Beam Treatment employs a specific type of radiation in which "protons", a form of radioactivity, are directed specifically to the pituitary gland. The advantage of this technique is less damage to tissues surrounding the pituitary gland.

Gamma Knife Irradiation combines standard external beam radiotherapy with a technique that focuses the radiation through many different ports. This treatment tends to do less damage to tissues adjacent to the pituitary gland. Some clinics are using proton beam therapy; laser-guided MR imaged stereotactic intrasellar tumor localization can be used for selected patients with untreated pituitary tumors, incomplete surgical resection, or tumor recurrence.


– Are all pituitary tumors created equal?

No. There are more than a dozen very different disorders that result from pituitary tumors and disease. For example, if a tumor forms in an ACTH secreting pituitary cell, it could result in the overproduction of cortisol (Cushing's Disease) or the underproduction of cortisol (adrenal insufficiency, often referred to as Secondary Addison's Disease). Cushing's is a condition characterized by excessive fat accumulation in central parts of the body (obesity, including a rounded or fat-filled face), diabetes, hypertension, a low serum potassium, thinning and bruising of skin, and osteoporosis. Symptoms of adrenal insufficiency include dehydration, low blood pressure and sodium level, and excessive weight loss. Primary Addison's Disease is caused when the adrenal glands fail to work on their own, i.e. fail to respond to directions from the pituitary and hypothalamus.

If the tumor forms in a growth hormone producing cell, it can overproduce growth hormone. Tumors that form from growth hormone producing cells cause two different clinical pictures. If they occur in children before the growth plates in long bones have closed, excessive growth hormone will cause gigantism. (Do you recall the movie "My Giant" with Billy Crystal and the basketball player?). If the growth hormone excess occurs during adulthood there is excessive enlargement of the hands, feet, and jaw, as well as soft tissue swelling of many tissues (acromegaly). Acromegaly is associated with an increased probability of developing diabetes mellitus, heart attack, hypertension, and certain types of cancer including malignancy of the colon. Most commonly the facial changes develop subtly and may not be noticed by the patient or his/her family.


– What happens after a tumor is removed/treated?

There may be permanent loss of some or all pituitary hormones, an imbalance that can be treated with Hormone Replacement Therapy, which has been inaccurately associated with only one group of patients: post-menopausal women. HRT can replace thyroid, growth, testosterone, or adrenal hormones when those made by the pituitary to stimulate the endocrine glands are no longer produced. It can be lifesaving therapy for the many millions of patients who need to replace hormones they no longer make.


– How do I get diagnosed?

Anyone suffering from a constellation of complaints/clinical findings suspicious for pituitary disease should get blood and urinary hormone levels checked and, if indicated, a brain MRI, keeping in mind that microadenomas may not show up on the x-rays. Combinations of three or more of the following may suggest the possibility of a pituitary tumor: sexual dysfunction, depression, galactorrhea, infertility, growth problems, osteoporosis, obesity (specifically central), severe vision problems, easy bruising, aching joints, carpel tunnel syndrome, disrupted menses, early menopause, muscle weakness, fatigue.


– Where do I go to get tested?

It is important to go to a hospital with a Neuroendocrine Unit or Pituitary Testing Facility, preferably both. (This may necessitate plane travel, but it would be worth every penny.) Pituitary blood tests can be very complicated and must be performed by specially trained technicians who can conduct dynamic hormone testing and precisely-timed blood sampling, administer testing agents, and have special expertise in measuring pituitary hormones. Tests that require special attention include ACTH (Cortrosyn) stimulation, bilateral inferior petrosal sinus ACTH sampling, Insulin tolerance, growth hormone stimulation, TRH stimulation, GnRH stimulation, Oral glucose tolerance, and GHRH/arginine testing for growth hormone reserve.


– Where do I go to get treated?

Ideally you want to be seen by a pituitary endocrinologist associated with a neuroendocrine or pituitary unit with a pituitary testing facility. The interpretation of complex blood tests can result in misdiagnoses. This can be associated with microadenomas (very small tumors) that do not show up on an MRI of the brain. It often takes a real expert to get the right answers and avoid pitfalls.

SIMPLY THE BEST: Pituitary Center brings life-changing treatment to thousands

I searched on the internet for three words: Best Pituitary Surgeon. This article appeared.

Dr. Edward Laws is not my neurosurgeon. My neurosurgeon trained directly with Dr. Laws. Dr. Laws is widely considered to be the best pituitary surgeon in the world. He has done more pituitary surgeries than anyone else. Like over 4,500.

My neurosurgeon was the chief neurosurgery resident under Dr. Laws during his tenure at the University of Virginia. They would do 6 pituitary surgeries a day together.

In surgery, it is all about who you train with. I have complete faith in my doctor. I really felt positive about my surgeon choice before researching Laws again. Now, I admit to feeling even better!


Simply the Best
Pituitary Center brings life-changing treatment to thousands

Photo by Andrew Shurtleff
Dr. Edward Laws prepares to remove a pituitary tumor from a patient. These tumors account for 20 percent of all primary brain tumors, and Laws is internationally recognized as the top pituitary surgeon.

By Fariss Samarrai

Dr. Edward Laws stands on a wooden pedestal as he extracts a brain tumor through a woman’s right nostril. His resident, Dr. Adam Kanter, and a team of operating room specialists, have prepared the patient for the procedure by first anesthetizing her, and then, by sending long and slim instruments up the woman’s nostril, they have removed a thin wafer of bone, allowing direct access through the air sinuses to the pituitary gland at the base of the brain.

Laws’ job is to remove a tumor that has grown on the pituitary by carefully scraping loose and periodically removing fragments of the mass of bad cells while being careful to leave the healthy tissue of the pituitary and the brain intact. He does this while looking at the inside of the patient’s head through a binocular endoscope with a micro-camera attached, allowing everyone in the OR to observe the procedure on a video monitor.

He pulls out another fragment of the tumor.

“These tumors have the texture of tofu,” he says, though the tissue he is extracting is bloody. He mentions in passing that he used to tell people that pituitary tumors have the texture of tapioca, but that many people don’t seem to know what that is anymore.

Laws removes a final fragment of the tumor, and his work is done for now. The procedure is called trans-sphenoidal surgery — basically access-through-the-nose surgery. By day’s end Laws will have removed pituitary tumors from six patients, likely making the lives of these people immeasurably better.

Laws is director of the Pituitary Center at U.Va. He has removed pituitary tumors from more than 4,300 patients, more than any other doctor in the world. Most of these surgeries have been performed at the U.Va. center he helped found in 1972. Laws is internationally recognized as the top pituitary tumor surgeon. Medical residents from around the world come to U.Va. to train under him.

Illustration by Craig Luce

Pituitary Tumors
Where they are and how they are removed
The pituitary gland is located at the base of the brain near the spinal cord, in the lower center of the head. This gland, normally the size of a pea, is the master gland that controls the production of all hormones. The pituitary controls growth, sexual maturation, fertility, metabolism, stress response and fluid balances. Pituitary tumors are reached by passing long and slim surgical instruments through the air sinuses to the diseased gland.

The procedure, like all planned operations, is methodical, calm, controlled, predictable, with precautions in place for possible problems or emergencies. The operation is so un-invasive, it more resembles routine dental work than major surgery. Yet, Laws and his colleagues are working at the very edge of the brain. There is little room here for error.

In past years, pituitary surgery was more dramatic, and intensive, for both the surgeon and the patient. It involved removing a portion of the skull and pushing the brain aside to reach the pituitary. The recovery period was long, and there was much greater risk for damage and complications. Laws and others invented and refined the current technique — passage through the nose — which rarely involves direct contact with the brain, even as they operate within its midst.

The pituitary gland is located at the base of the brain near the spinal cord, in the lower center of the head. This gland, normally the size of a pea, is the master gland that controls the production of all hormones. The pituitary controls growth, sexual maturation, fertility, metabolism, stress response and fluid balances.

For reasons not well understood, the pituitary is subject to the slow growth of tumors. These tumors are the third-most common type of primary brain tumor, accounting for 20 percent of all brain tumors. Though these tumors are almost always benign, they aren’t friendly. They can cause the pituitary gland to produce excessive or insufficient amounts of hormones, leading to a vast array of unpleasant symptoms, including severe and chronic headaches, infertility, sexual dysfunction, fatigue, weight gain, depression, apathy, sleep disorders, memory loss, and in some cases, loss of vision. Pituitary disorders also are the cause of Cushing’s syndrome, which results in obesity, “moonlike” features of the face, excess body hair and thin brittle bones.

Pituitary surgeries are discussed prior to and after each operation.

Because the symptoms of pituitary disorders are so varied, it can take years to arrive at a correct diagnosis,” Laws said. “Patients often think that their health problems are attributed to just getting older.”

It takes a brain scan in the form of magnetic resonance imaging to confirm the presence of a pituitary tumor. Sometimes the tumor is three times the size of the gland itself, putting pressure on the brain and optic nerve, resulting in headaches and vision loss. Small tumors often can be treated with hormones and drugs. Radiation may shrink the tumor or inhibit its growth. If the tumor continues to grow, and symptoms worsen, surgery may be necessary.

Laws discovered early, at the beginning of his medical training at Johns Hopkins University, that he was interested in neurosurgery. His fascination with the brain has continued throughout his 40-year career as a surgeon and brain tumor researcher.
“How beautiful the brain is,” he said recently. “I’m amazed with what happens with the human brain, and I love dealing with it in an intimate fashion.” He describes the brain as “one of the greatest of God’s creations.”

But he’s happy to fix that creation when something goes wrong.

“We can restore vision,” he said of pituitary surgery. “We can restore fertility and reverse body changes. This is enormously satisfying.”

These tumors are identified using magnetic resonance imaging.

One of the first patients Laws treated with the through-the-nose surgical method was a 21-year-old man named Harvey Gartner. The surgery was performed in 1969 at The Johns Hopkins Hospital where Laws was a neurosurgery resident. Gartner had been growing rapidly since he was 6 months old. His bones were elongated, and he suffered from arthritis and other ailments.

“Those were tough years,” Gartner said of his youth.

The operation took 12 hours to complete, and all of the pituitary gland was removed, as was standard at the time. Gartner, now 56, is on lifetime hormone replacement therapy, but his health is generally good.

“I would have died,” if not for the surgery, he said.

Gartner is now a computer programmer and businessman in Jacksonville, Fla. He has remained in contact with Laws, and the pediatrician who cared for him throughout his life, Dr. Robert Blizzard, a U.Va. professor emeritus of pediatric endocrinology. At the time of Gartner’s surgery, Hopkins was the top pituitary center in the United States. That title has long since shifted to U.Va. as a result of Laws, Blizzard and others coming here to establish their interdisciplinary center.

Today, surgeons rarely need to remove the entire pituitary gland. Instead, when surgery is necessary, they remove only the tumor attached to the gland. The entire procedure, including prepping the patient for surgery and the post-operative period, can be accomplished in a couple of hours. The patient is able to return home in two or three days and can resume normal activities in two to four weeks.

Within a few days after surgery, the patient’s severe headaches will have diminished. Vision will be restored within a day in cases where the tumor had pressed against the optic nerve. Body changes, such as weight loss and normalization of facial features, will occur in about six months. Throughout the patient’s life, teams of endocrinologists and other specialists will measure the patient’s hormone levels and develop and refine treatment plans. Laws said some patients might not even need hormone replacement therapy.

“I don’t think anybody does this work better than we do at U.Va.,” Laws said recently between surgeries. “We’re improving our techniques and reducing the recurrence of tumors after surgery.”

At this moment he is called back into the operating room. Another patient is prepped and waiting.