June 7, 2026
MaryO
Acromegaly, Adrenal Surgery, Cyclic, Golden Oldies, Pituitary, Pituitary Surgery
17- Ketosteroids, 17-Hydroxysteroids, Acromegaly, Atkins diet, bilateral adrenalectomy, BLA, Blood pressure, blood sugar, bone pain, cortisol, cushing, Cushing Disease, Cushing Syndrome, cyclical Cushing's, Dr. Theodore Friedman, exercise, exhaustion, GERD, hair, Health, heat intolerance, hypertension, Magnetic resonance imaging, MRI, pituitary, Pituitary gland, pituitary surgery, rash, salivary, spastic colon, UFC, Weight gain
This bio was originally posted 1/26/2008
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My Cushing’s and Acromegaly Odyssey
During the summer of 1999 I was a trim and fit 130 pound woman. I was very athletic and worked out all the time. At that time I had also been taking Tae Kwon Do. I was able to eat anything that I wanted and not gain weight. I wore size 8 pants.
Fast forward to May of 2000. I developed increasing stomach and bowel problems. I had a spastic colon and serious GERD. Along with that came a poof in my belly. Although I was still wearing the same size my stomach started to look “pregnant”. I was referred to a gastroenterologist who began treating my myriad of health issues. He really couldn’t find a reason for all of it but said he could treat it. For awhile I managed okay on the drugs and diet that I was treated with. Everything went in cycles.
During the summer of 2001 my naturally light blonde hair began to change color. It got black and mousy looking at the roots. At the same time it started thinning, the texture was horrible and no longer shiny and baby soft. I developed heat intolerance. I was uncomfortable in 80 degree weather. I also developed strange rashes and red dots on my skin. Later that fall my neck and face started to turn beet red. It stayed that way.
I could no longer fit in my wedding rings and my shoe size went from a size 7 ½ to and 8 1/2. Doctors didn’t find this impressive. My neck went from 13 inches around to 16. I gained 12 pounds in 1 week alone. I started getting real fat in my stomach and armpits, and I could no longer wear normal bras. I also started getting a lot of fat on my upper back. I grew hair in places that women should not grow hair. My face was huge with strange acne outbreaks. I also got acne in weird spots.
At the time I had put on about 20 pounds all in my stomach. When I would try other clothing it wouldn’t work because the next size bigger fit in the waist but the butt and legs were huge. I gave up on real pants and started to wear stretch clothes all the time. At this time I could no longer exercise to my peak performance. I was tired all the time and never felt well and I looked like I was 6 months pregnant. I thought that I was getting old.
January of 2002 my bowel and stomach troubles peaked. I was in and out of the hospital. Although I was following the healthy eating plan and exercising no doctors believed me. My PCP did a TSH test and it came back at 27.48. I was hypothyroid, at that time my estradiol levels were also non-existent. So off I was sent to an Endocrinologist. I was given replacements for both yet nothing improved.
This started an intense year of doctors. I was diagnosed with anything and everything at this point. I was started on the Atkins diet plan. I followed this religiously and walked for up to 2 hours a day and continued to gain weight. By this time I was 165 pounds. Finally realizing that something horrible was wrong with me I started seeking out Endo’s on my own. It led me to one who thought he should do a few 24 UFC’s. One came back high, 2 others came back high normal (33.4 and 33.9 with a range of 2.9-34). They then did serum cortisols which came back below normal. I was frustrated.
It was November by now and I was getting no where fast. At this point I had seen 11 different doctors. The last of which told me that there was no way I was eating healthy and not losing. He even suggested that my fresh sliced berry snack was making me fat. By now I’ developed high blood pressure and high blood sugars. My fasting blood glucose came in at 170.
By this time I was so exhausted and developed such horrid bone pain that I could not even exercise anymore. I remember waking up late one morning and crying. I went downstairs and told my hubby I was sure my back was breaking. It was horrible. I weighed 196 pounds and looked 9 months pregnant with triplets.
I came home and looked the tests up on the internet. I started reading everything that I could find. I knew then that I had Cushing’s. I found the Cushing’s help site. The trouble was that some tests were normal and some were abnormal. Finally in January of 2003 I went to see Dr. Friedman after another patient emailed me. Dr. Friedman tested my 17-Hydroxysteroids and 17- Ketosteroids which came back elevated. He also did some additional salivary cortisols testing. He finally figured out that I not only had Cyclic Cushing’s but also Acromegaly.
After many more tests and some MRI’s my tumors were found. I had pituitary surgery to remove them. I was devastated that I was not cured from the Cushing’s. After much consulting I decided to proceed with a Bilateral Adrenalectomy to cure it once and for all. I am recovering slowly but surely.
I am now 4 months post-op.
Click any thumbnail to view the larger image.
Before Cushing’s [Photographer: Jeanne’s family]
In the kitchen [Photographer: Jeanne’s family]
Jinxie [Photographer: Jeanne’s family]
Jinxie [Photographer: Jeanne’s family]
June 6, 2026
MaryO
Adrenal, Adrenal Surgery, Golden Oldies, Pituitary, Pituitary Surgery, radiation, Treatments
adrenal gland, bilateral adrenalectomy, BLA, cancer, Conditions and Diseases, cushing, Cushing Syndrome, daughter, Endocrine Disorders, gamma knife, Health, knee replacement, mom, networking, Patient Advocate, pituitary, pituitary surgery
Aimee’s story was originally posted 2/7/2008 at http://www.cushings-help.com/aimee.htm. The email address may no longer work.
I am the daughter of a Cushing’s patient who is workning on her BLA and switch. My mom is not always able to be on line, but is very interested in the networking that this site offers. So for right now I am the deligate and the Patient advocate whenever she is in the hospital.
Mom’s (Pat) history is complicated and lots of different turns have taken place. She was diagnosed very late into her case and has often had the worst of what can happen happen. A true trooper through it all but she is starting to really lose the desire to fight and yet more and more is happening. So I am hoping that the networking will help give her the little boost that she needs.
The brief run down: diagnosed Cushing’s, Pituitary surger (no tumor found), gama knife surger, chemical treatment, 4 – 5 years of sitting on the edge and then 4 years building back up to full blown Cushings.
Now she is have BLA in Feb. 08 and we are hoping to move forward. During the time between full blown she had 2 back fusions (1 did not take and will have to be redone) 2 knee replacements, and an assortment of other stuff. So as you can guess he poor body is worn out and ready for a rest.
Email Aimee
May 17, 2026
MaryO
Adrenal, Adrenal Surgery, Pituitary, Pituitary Surgery, radiation, Treatments
adrenal glands, bilateral adrenalectomy, BLA, cushing, Cushing Disease, Cushing Syndrome, gamma knife, Harborview Medical Center, Pituitary gland, radiation, Seattle, Seattle Cancer Care Alliance, University of Washington Medical Center
In November 2009 my PCP diagnosed me with pituitary Cushing’s Disease. His diagnosis was confirmed by an endocrinologist at the University of Washington Medical Center in Seattle, WA in January 2010.
English: Concept of Gamma Knife Stereotactic Radiosurgery (Photo credit: Wikipedia)
In March 2010, I had my first pitutary surgery at UW Medical. My second surgery was in September 2010 at the same hospital. My third surgery was at Harborview Medical Center, also in Seattle in May of 2011. After my husband and I learned the third surgery had also failed I had gamma knife radiation on half my pituitary gland in November of 2011, also at Harborview.
After waiting what seemed like a very long year and a half we decided to have my adrenal glands removed by a surgeon from the Seattle Cancer Care Alliance in May 2012.
I am finally without Cushing’s Disease and looking forward to a “normal” life.
May 10, 2026
MaryO
Adrenal Surgery, Pituitary, Treatments
Adrenalectomy, Adrenocorticotropic hormone, bilateral adrenalectomy, BLA, cortisol, cushing's syndrome, Family, Family medicine, Home, Mayo Clinic, Parenting, recurrence
I have been battling Cushings Disease for many years. I had transphenodial surgery at the Mayo Clini-Rochester in April of 2008.
Recently my numbers were high again and I can feel that my Cushings is back. I just got done with the long testing process and am waiting to confirm a appointment for a bilateral adrenalectomy. If anyone has had a BLA I would appreciate an e mail. I would like to hear it all- the good, bad and the ugly. I would also like to know if this made your quality of life any better and tips and tricks for recovery. I am very scared. This decision is a lifetime change but one I am willing to take becuase of how miserable I feel now.
I have two children and a husband that although are VERY supportive still need their Mom/wife to be an active part of their lives. Thank you!
May 9, 2026
MaryO
Addison's Disease, Adrenal, Adrenal Surgery, Ectopic, Pituitary Surgery, Thyroid, Treatments
Addison's disease, adrenal gland, adrenal glands, adrenals, bilateral adrenalectomy, BLA, Blood test, Buffalo hump, Conditions and Diseases, cortisol, cushing, Cushing Syndrome, DI, diabetes insipidus, fatigue, headache, Health, Ketoconazole, Mass General, migraines, mood swings, muscle weakness, pituitary surgery, surgery, sweating, thyroid, UFC, urine, weight
I was diagnosed with Cushing Syndrome in June 1999. At that time my urine cotisol level was 342.
Prior to being diagnosed I suffered for over 7 years with severe migraine headaches. I also had gained 80 lbs, had a moon face, buffalo hump, mood swings, severe fatigue (could sleep 20 out of 24 hours a day), aweful sweats day and night, weak muscles, thyroid disease.
I had pituitary surgery at Mass General because my state didn’t do that type of surgery. After surgery, my levels were still elevated and I was diagnosed with diabetes insipidus.
When I returned home I underwent more tests ie. blood work, 24 hour urines. This continued for another year and during that time my endo put me on Ketakonazal in an attempt to lower my cotisol level to no avail. The medication just messed up my stomache.
In 2000 I had surgery again this time I had both adrenal glands removed. still no tumor had been found. That’s when the worst news of all came. I was told I had Ectopic Cushings Syndrome and had 5 years to live. The reason for this if you my not know is 50% of ectopic tumors end up being small cell lung cancer.
I was also diagnosed with Addison’s disease because of no more adrenals. Today it has been 13 years since my adrenal surgery and I am still alive and no cancer!
May 6, 2026
MaryO
Adrenal Insufficiency, Adrenal Surgery, Bipolar, Diabetes, Pituitary, Pituitary Surgery, Recurrence, Thyroid, Treatments
Addison's disease, Adrenal, adrenal gland, adrenal glands, Austin Powers, bilateral adrenalectomy, Bipolar, BLA, cushing, cushing's syndrome, Depakote, diabetes, dog, dopamine, double vision, e. coli, Family medicine, fatigue, fludrocort, Health, heart attack, hydrocortisone, OHSU, Paul Newman, potassium, recurrence, thyroid, Vicodin, vomiting, weight
I Am 52 yrs. old . My sympmtoms began when I was 40 yrs. old. I was at at a yearly physical. I was extremeley athletic. I used to ren 70 miles a week. when I was 17 to 19… dopamine I believe kept me well.
One year prior to my symptoms ..I was 39. I was very fatiquiged..my children were suffwering. They were 6 and 9. They are now 17 and 20. I feel I stopped raising them at this age. If any of you have seen the Sting the movie with Paul Newman obbserve that he dunked his head in ice. I was at Lincoln city , Oregon when I attemted this. procedure. I say procedure and I didn’t even know a tumor was forming on my pituairy gland. Who kneew? Not me. It didn’t even occur to me that a growth was growing in my brain!!
I went from 135lb to 265lb. in 3 months. I was so frightented!!!!!!!!!! My doctor told me to go to an encronologist…very important DOCTOR!!! Most doctors do not have the slighist idea what Cuhing’s is ..Dogs ,horses, and PEOPLE get it. Some doctors are either dumb or totally ignorant. The E. doctor said it looked like I had Cushing’s syndrome. I then made him fall off his chair in laughfter! My family and I recently put a family dog down with Cushing’s disease. I wanted to know if it was contagious?? No, he said wiping his eyes from laughing. He appologigized when I started crying.. I wanted to know how I got it. My dogs was in the adrenal glands. Fatal. We said goog-bye to BUDDY>> My doctor said he hoped I did not have the same dianosis.
After thousands of dollars later..Thank goodness we had great West insuanarce..Get it if you can. Covered everything 100 percent. Discovered a benign tumor on my left pituiary gland. They removed it through my nose . I also had my 9th sinus surgury. It was also from my left nostril. I got fake diabetes. It went away when I left the hospital. The weight started dropping with the help of a nutrisionist. I was taking hydrocortisone. pills. I lost 65 lbs. A few years later my head started hurtimg worse.
After One day of test at a major University OHSU I was diagnosed again with the same tumor . but 3x’s bigger . Surgery through my mouth. Weight came back and some. I asked what my options were? #00lbs, heart attack and death. They told me to remove my adrenal glands. I did. I now have diabetes ,I take 200mg. because my thyroid is so large. Guiess what?? My immunec system is nill.
I wanted to be healthy I loved bananas… get what I got ?? I got the e-coli scare with the spinacach in the bag. E.R. 3 weeks . Everyone in yellow smocks.. No visitors! June 2007… I lost 40 lbs. I was going out to lunch with my husband saw double. Uncontrollable votimiting… E.R. Encronologist. or family doctor. After driving 90 miles an hour 45 minutes away we arrived. I was talking all the way through it . No pulse ..I said am I dead? My doctor said Shut up. No heartbeat. I said am I dead yet? She said shut up agin. I wass vvvvvvvvv teching. I said where are the cameras for HOUSE the t.v. show. I sell novelty neck ties my huband Allen just so happenned to be wearing a Bug’s Bunny tie…I guess you know what i said ..What’s up doc??
The Paramedic behind me was 2x’s larger than my husband He said I was going to the hospital. They put me in the ambulance. Allen asked my husband if he wanted to come . He said he would follow. When they closed the door Allen said if you feel anytjhing hit my knee. 10 seconds later I hit his knee as hard as I could. I felt an elephant!! If you want me to tell you what death is ask me. I died for 5 seconds. plus I was clinically dead at the doctor’s office. My potassium level was7 normal is 4.2 to 5. If anyone has seen Austin Powers drinking poop quadruaple it I attempted to drink it. Started vomiting it. A Doctor was walking by…USE ANOTHER ORAFACE!!!! The butt. I was drowning. Needless to say , my children were screwed up again.. I called the oldest Brandon ,the youngest Nathan and a very nice gentleman if i wasn’t married I would marry him…SHAROn 14, MEGAN 11 and ALLEN!! I now take fludocrt and hydrocortisone @ 4:00 P.M. everydyt. If I miss two consecutive days I will die.
I am also Bi polar I feel their is a correlation with Cushing’s disease. I take Depacote etc. 12 more pills plus hydrocortosone in the morning too! I Have 2 books at home Manic Depressive Disorder. By Fredrick Goodwin and Jay Jamison. Worth reading. Stated Cushing:s disease is derived and assossiated with bipolar. I believe I have been bi polar from birth. Only episodes I had as a child…TRAUMA!!!!! I now have addison’s disease too! What else could go wrong?
By the way, I have a theory bipolar is assosiated chromosome 13. I also think cancer is a virus. Hit or miss. Cushing’s is fatal i not treated properly. Adrenalectomies are the worst . Take Vicatin .I threw it at my husband I did not want to get addicted to it like House. I used ice 24/7. I won’t go into the detatails it was bad. If you do get one , move I used a swifter, and a cane. No wheel chair or death for me!! I’m a fighter!!
Thank you for allowing me me to tell my story. I want to write a book about my experiences. I hope there is a publisher out there so I can get my Life story across!!
Sincerely,,
Linda
May 4, 2026
MaryO
Adrenal Insufficiency, Adrenal Surgery, Diabetes, Pituitary, Treatments
Adrenal insufficiency, anemia, bilateral adrenalectomy, BLA, Carcinoid, Conditions and Diseases, CSF leak, cushing's syndrome, diabetes, digestive, fatty liver disease, Health, Magnetic resonance imaging, Pituitary adenoma, transsphenoidal, Vitamin D Deficiency
I had 3 transphenoidal surgeries 1 month apart in 2003. I had a csf leak and when it was repaired the pituitary had become necrotic and I lost the whole gland.
They said that did not cure the cushings so I had a BLA in 2004.
I have had nothing but health problems since then. Diabetes, fatty liver disease, frequent adrenal insufficiency, severe anemia despite no periods, vitamin d deficiency, and other strange things.
They are now working me up for the neuroendocrine carcinoid tumor in the stomach or small bowel. It has been quite a road and I am not sure if I would do this all again if I could.
March 13, 2026
MaryO
Adrenal Surgery, Pituitary, Pituitary Surgery, Recurrence, Treatments
adrenal glands, bilateral adrenalectomy, BLA, pituitary, pituitary surgery, recurrence
Recently had both adrenal glands removed 5/7/20 after 2 failed pituitary surgeries due to Cushings disease.
Cheryl huth 63 yrs old married to David Huth live in Mount Dora florida.
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March 2, 2026
MaryO
Adrenal Surgery, Fibromyalgia, Golden Oldies, Pituitary, Pituitary Surgery, Recurrence, Treatments
appendicitis, arthritis, bilateral adrenalectomy, CSF leak, Dr. Johnny Delashaw, Dr. William H. Ludlam, Fibromyalgia, gallbladder, laparoscopic, OHSU, pituitary, surgery, transphenoidal
I am 38 and had three transphenoidal surgeries for Cushing’s.
I had a CSF leak with the 2nd and when they went in to repair it and look for more tumor my remaining pituitary gland was necrotic and I lost the whole gland.
That did not cure my Cushing’s so I went on to have a laproscopic adrenalectomy followed quickly by galbladder problems and appendicitis. Dr. Ludlan, Deleshaw and Sheppard at OHSU worked with me. I had my pituitary surgeries in 03 and my adrenals and other 2 surgeries in 04.
I have not been able to return to work as a nurse and feel thie surgeries have greatly reduced my quality of life. I would love tro talk with other people.
I have two adopted kids from China as a single mom who are 12 and 13.
I know have problems with fibromyalgia and arthritis.
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February 5, 2026
MaryO
Adrenal Surgery, Golden Oldies, Pituitary, Pituitary Surgery, Recurrence, Treatments
bilateral adrenalectomy, BLA, Dr. Olivi, Dr. Roberto Salvatori, Golden Oldie, Johns Hopkins, pituitary, transsphenoidal
Last Updated December 6, 2008
My diagnosis was Pituitary Cushing’s Disease. Had transphenoidal that did not work and ended up having a bilateral adrenalectomy.
Here is a link to my website that has my story and several pictures. I welcome any questions/comments/conversations!
Update November 7, 2007
I just want to update my bio to say that the address of my website has changed. The address of the new website that I have that contains my story and pics (and some new pics) is now:
http://www.KandisMcCartney.fasthoster.info/index.html
Update December 2008
When I finished writing this story over a year ago, I hoped that I wouldn’t have to do any additions, at least not for awhile. However, after marrying the man of dreams in August 2008, the man who stuck by my side through all of this, I started developing some frequent headaches. Nothing horrible, but growing ever more persistent. I had been slowly growing a deeper and deeper tan, so much so that I couldn’t go out into the sun for more than a few minutes without a high SPF sunblock or my skin would turn REALLY dark. We went to the Dominican Republic for our honeymoon, and people thought I was a native I was so dark by the time we left. I always knew that there was the possibility of me developing Nelson’s Syndrome, but I always hoped it wouldn’t happen. I pretty much knew going into my MRI at the end of September that my tumor had grown, especially after finding out that my ACTH levels had doubled in a matter of months. Sure enough, when the results of my MRI came back, we were finally able to see the little booger that had been evasive up until now. My adenoma was clearly visible at approximately 8mm located on what was left of my pituitary gland. My new endocrinologist (my former doctor went into research for awhile) along with my amazingly talented neurosurgeon, as well as the radiologists agreed that I should give a second transphenoidal surgery a try. They felt that with my age, desire to have children, and current condition, it was the best choice for me. The neurosurgeon felt he would have a good chance for success this time, especially since the tumor was now visible. He said that as long as when they got up in there and there was a clear difference between what was normal tissue and what was tumor, he thought it would be very likely the surgery would work and he would be able to remove the tumor. I had grown to really trust my neurosurgeon and believed that this was indeed the right decision for me.
Everything happened pretty quickly, and I was in the hospital awaiting surgery on the morning of October 15, 2008. There was a delay in the start time, as the previous surgery had taken longer than expected and we didn’t have a room. They finally arranged for another room, and I was wheeled on in to have my surgery. I awoke in the recovery room to find my husband waiting there for me to open my eyes. I knew immediately, I just had this feeling that was different from my first transphenoidal, that everything had been successful. I was thoroughly amazed at how well I could breathe this time around! I wasn’t stuffy at all the way I had been the first time around. I didn’t even have to go to ICU, I went straight to my private room. The neurosurgeons came around the following morning and said that the surgery went remarkably well and I handled it like a champ. They said it didn’t even look like I had had surgery. I told them that it really didn’t feel like I had. They said that because I already had this done before, they used the same pathway, through my nose, and it wasn’t near as intense since the hole was already there. Since I had the same two surgeons both times, they knew already how they had done the first one, so they were familiar with my nose and head. I was up and walking around and everyone – doctors, surgeons, nurses, physical therapists were amazed. Everyone could see that I was ready to go home. I was released early that evening after only a little over 24 hours since my surgery.
The recovery at home was very easy, I was only off work for a few days, just to gain my strength back and make sure everything was indeed okay. My post-op bloodwork showed a significant drop in ACTH levels indicating that the surgery was indeed successful. My post-op MRI looked great as well, no signs of tumor. Of course, we can’t be 100% sure that the tumor is completely gone, and that it won’t grow back, but that is what we will hope for. In the meantime, I am so happy, healthy, and grateful to be alive and enjoying life. I will not live each day worrying about what could happen, I’d rather focus on everything good I have right now. …and I’d say, that’s a lot!
I’d like to send my deepest thanks and appreciation to the absolutely wonderful Pituitary Team at Johns Hopkins Hospital. They are some of the most amazingly talented, intelligent, and kind doctors that one could ever wish for. I wouldn’t be sitting here today so healthy and happy without them. I’d like to send special thanks to my endocrinologist, Dr. Salvatori, who always takes such good care of me, and my incredible neurosurgeon, Dr. Olivi, who I trust with my life! You are both my heroes.
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Before Cushing’s [Photographer: Jeanne’s family]
In the kitchen [Photographer: Jeanne’s family]
Jinxie [Photographer: Jeanne’s family]
Jinxie [Photographer: Jeanne’s family]
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