I am a 47 year old woman diagnosed with Cushings Disease June 2014. I have always been one of those girls who was curvy, but was a yo-yo in the weight department.
About 1o years ago I was diagnosed with PCOS. I had extra facial hair, extra weight, irregular periods, infertility problems. Boy did I feel good about knowing what was wrong with me!
Then a couple of years after that I had a stress fracture in my right foot. I seemed to take forever to heal, but finally did. I had several uneventful years. I did have pain in my pelvic area for quite sometime before deciding something had to be done. Four years ago, after visiting my gyno, it was decided that I should have a hysterectomy due to fibroids. That is when the fun really started for me.
I really didn’t noticed, but sometime after that my skin became really oily, I had acne (for the first time in my life), and the weight had come on. My hair became quite wavy. And the stress factures started.
First my left foot, the 2nd metatarsal, then the 3rd metatarsal. All in all I have had four different instances of stress fractures in my feet, and one on my ankle. What got everyone’s attention though, was when my hip broke.
I had been seeing a chiropractor for back problems I figured were due to wearing a boot for my fractures on and off for years. My back did not seem to be getting any better. As a matter of fact my hip area seemed to hurt worse. Then, early the morning of January 8, 2014, I was trying to make my way to the bathroom, when I heard this awful noise, felt an even worse pain and down I went. Later the doctors figured I had had a stress fracture that had started to heal in the femoral neck of my hip, but broke.
All of my doctors were scratching their heads. But that was about all. My PCP ran some blood and urine tests, but really did not find anything out. I FINALLY asked every one of my doctors, since they did not know what was wrong, where did they suggest I turn. Each one said and endocrinologist. Of course my next question was “What is an endocrinologist?”.
That was in February 2014. I was referred to Dr. Ferries, one of the few endos in Wyoming. It took a while to hear from her, but when I did, I was disappointed to hear that the soonest I could get in to see her was in June.
In the meantime, I had refractured my ankle. April 1, 2014 I had the ankle repaired. April 7, 2014 I passed my first kidney stone. I let Dr. Ferris know about it. Shortly after that my appointment got moved to May.
My appointment with Dr. Ferries last about 2 hours. After asking all the questions, listening to my story and an exam, she told us she thought it may be Cushings, but needed to do several tests. She let us know that it was something that would take some time.
I did the urine tests, the blood tests, and an MRI. My cortisol levels were way out of the norm. The MRI showed a 6mm microadenoma on my pituitary. I was ecstatic! After deciding to have my little friend removed in Denver, Co, Dr. Ferries sent my referral to Dr. Lillehei at University Colorado Hospital.
I took a few days, but they called to make an appointment. July 31, 2014 was my appointment with the brain surgeon. I was so happy to be on my way to feeling better! I had to tell my story again to Dr. Lillehei, the brain surgeon. He did not see the tumor, so he wanted me to see his endocrinologist. Then I had to tell my story yet again to Dr. Wierman. She told me she was not impressed by my previous tests and MRI. She would like me to do them all again. She told us they had their protocols, and when they did not follow them, they usually got bit. I was disappointed, but understood.
Those results of those tests were inconclusive. My cortisol was not nearly as high. So the next step was IPSS. The petrosal was scheduled for August 18, 2014. The results of the that test were quite definitive. There was an ACTH secreting tumor on the right side of my pituitary. Hooray!! My surgery was scheduled for September 5, 2014.
The surgery went off without a hitch. Colin, Dr. Lillehei’s PA, then informed me that the surgery was the easiest part. He said I would pretty much feel like sh@%. He was right. I am feeling better and better. My skin is not a grease pit any more. I am loosing weight. My appetite sucks and sweets make me even more nauseated. I can manage to make it to aquacise several times a week, though. I am looking forward to the days when I have energy!
I was diagnosed with Cushings Disease in September of 2015.
I used to be skinny. I was 160 lbs dripping wet. I had a thin face and exercised regularly. In fact, up until 2 years ago, I was doing CrossFit every morning at 5AM, and was pretty good at it!
I guess about 5-6 years ago, I started putting on weight. It started with what I thought was just a beer belly. I was dating a great girl and we went out a lot to eat and drink. I figured I was just getting fat and happy. Fast forward (got married to her) and we started to live our lives together. One day (2012) I was going in for a routine physical and was going over some things with my PCP. He suggested we do a finger prick to check my Glucose levels. The sample showed a 567. He was astonished, and immediately admitted me to the hospital. I ended up taking 5 IV bags as I was severely dehydrated. My PCP then schedule me in for the next day so that he could tell me I had Type 2 Diabetes (runs in family). They started me on drugs and insulin injections. So there I was, being treated for Diabetes (the Sugars as they call them) and High Blood Pressure (HBP).
This went on for a while and my wife and I decided to moved to Florida. In the mean time my undiagnosed Cushings was starting to rear it’s ugly head. Big belly, stretch marks, limb atrophy, fatigue, major depression, reduced libido, moon-pie face, thin skin and bruising easily. The depression caused a lot of issues with my marriage and we ended up getting a divorce. I moved back to Baltimore for support from my family.
I worked at my uncles shop for about a year, then was offered a new job with a great company and I jumped at the chance. By this time, the atrophy in my legs had started to really take effect. The job ended up being too physical for me and I had to resign after 1 one month.
I decided to see a new PCP as I was not happy with my previous one. Within the first 20 minutes of our initial consult, she recognized the Cushings symptoms and quickly referred me to the Endo Department (Dr. Taylor) at Mercy Medical. She had me do a bunch of blood work and urine tests. The cortisol numbers were off the charts.
She then referred me to Dr. Salvatori at John’s Hopkins Hospital (JHH). I was very lucky as she got me in there quickly. After speaking with him, he thought I had a Pituitary adenoma based on the crazy ACTH levels. We did and MRI, and an IPSS. The IPSS showed it was secreting from the right side mostly. The left had some high numbers, but nothing like the other side. In the MRI, they could not see the tumor.
Dr. Salvatori suggested on more thing before resorting to surgery. I am to have a “wet MRI” in January., 2016 This should give a much clearer scan. He also started me on Ketoconozale.
This is all happening very fast (diagnosed Sept 2015), and I am looking forward to the upcoming treatments.
Life was good! In fact, life was great! I was married to the love of my life. We had a beautiful little girl. My husband and I had both earned our graduate degrees. I earned my Doctorate in Clinical Psychology and was growing my clinical practice. I loved my work!
In October, 2006, my life was turned upside down when I gained 30 pounds in 30 days! I knew this was not normal at all. I sought answers but my doctor kept insisting that I wasn’t eating the right foods, that I wasn’t exercising hard enough, and finally that it was genetic. However, I was always a thin person, I ate pretty healthy foods, and I was pretty active. Red flags became even greater when my physician put me on prescription weight loss drugs and I STILL gained another 30 pounds. I knew my body and I knew something was wrong but I had no one to validate what was going on.
In January, 2010, to my surprise, I learned that I was miraculously pregnant with our second daughter. I was so sick during that pregnancy and, again, my doctors couldn’t figure out why. My OBGYN was very supportive, yet so concerned. Her solution was to put me on bed rest. I became so ill that she told me that “my only job was to sit still and wait to have a baby”. I did give birth to a healthy baby girl four weeks early. Little did I know, then, how much of a miracle she was.
During the latter part of my pregnancy, while flipping through channels on television, I came across a Cushing’s episode on the health TV show, “Mystery Diagnosis”.
I knew right away that this diagnosis fit everything I had been experiencing: years of weird and unexplained symptoms, gaining 150 pounds for no reason, an onset of diabetes, high blood pressure, and an overall sense of doom.
You see, my friends and family witnessed me go from a vibrant young Clinical Psychologist in practice, to someone whose health deteriorated due to the symptoms of Cushing’s, as I tried for many years to get answers from professionals. As I continued to eat a healthy, 1000 calorie per day diet, engage in exercise with multiple personal trainers, and follow through with referrals to consult with dietitians; I continued to gain weight at a rate of 5 pounds per week and experience rapidly declining health. Finally, after watching that Cushing’s episode of Mystery Diagnosis, I found my answer! Ultimately, I sought the expertise of and treatment from a team of experts at the Seattle Pituitary Center in Seattle, WA. I had brain surgery in Seattle on November 16th, 2011. I want to tell you how I found the people who helped save my life…
On June 9, 2011, I went to my first MAGIC conference. I had never heard of them but someone on one of the online support groups told me about it. At that time, I was working but was very, very sick. We suspected at that time that I had been sick for years! My local endocrinologist was far from a Cushing’s expert. After watching the Cushing’s episode of Mystery Diagnosis, I told the same endocrinologist who had misdiagnosed me for years that I had found my answer. He swore that there was “literally no possible way that I had Cushing’s Disease!” He stated that my “hump wasn’t big enough”, “my stretch marks were not purple enough” and that “Cushing’s patients do not have children!” I told him that I was NOT leaving his office until he started testing me. He finally caved in. To his surprise, I was getting abnormal labs back.
At that time, there was evidence of a pit tumor but it wasn’t showing up on an MRI. So, I had my IPSS scheduled. An IPSS stands for Inferior Petrosal Sinus Sampling. It is done because 60 % of Cushing’s based pituitary tumors are so small that they do not show up on an MRI. Non Cushing’s experts do not know this so they often blow patients off, even after the labs show a high level of ACTH in the brain through blood work. An overproduction of the hormone ACTH from the pituitary communicates to the adrenal glands to overproduce cortisol. Well, the IPSS procedure is where they put catheters up through your groin through your body up into your head to draw samples to basically see which side of your pituitary the extra hormone is coming from, thus indicating where the tumor is. U of C is the only place in IL that does it.
So, back to the MAGIC convention; my husband and I went to this conference looking for answers. We were so confused and scared! Everyone, and I mean everyone, welcomed us with opened arms like we were family! There were brilliant presenters there, including an endocrinologist named Dr. William Ludlam. At that time, he was the director at the Seattle Pituitary Center in Seattle, WA. He is a true Cushing’s expert. Since then, he left in January, 2012 to have a significant impact toward the contribution of research of those impacted by Cushing’s Syndrome. His position was taken over by another brilliant endocrinologist, Dr. Frances Broyles.
I was scheduled to get an IPSS at U of C on June 28th, 2011 to locate the tumor. Two days after the IPSS, I began having spontaneous blackouts and ended up in the hospital for 6 days. The docs out here had no clue what was happening and I was having between 4-7 blackouts a day! My life was in danger and they were not helping me! We don’t know why, but the IPSS triggered something! But, no one wanted to be accountable so they told me the passing out, which I was not doing before, was all in my head being triggered by psychological issues. They did run many tests. But, they were all the wrong tests. I say all the time; it’s like going into Subway and ordering a turkey sandwich and giving them money and getting a tuna sandwich. You would be mad! What if they told you, “We gave you a sandwich!” Even if they were to give you a dozen sandwiches; if it wasn’t turkey, it wouldn’t be the right one. This is how I feel about these tests that they ran and said were all “normal”. The doctors kept telling us that they ran all of these tests so they could cover themselves. Yet, they were not looking at the right things, even though, I (the patient) kept telling them that this was an endocrine issue and had something to do with my tumor! Well, guess how good God is?!!!!
You see, Dr. Ludlam had given me his business card at the conference, which took place two weeks prior to the IPSS. I put it away for a while. But, something kept telling me to pull the card out and contact him. I am crying just thinking about it, Lord!
So, prior to my IPSS, I wrote Dr. Ludlam an e mail asking him some questions. At that time, he told me to send him ALL of my records including labs. I sent him 80 pages of records that day. He called me back stating that he concurred with all of the evidence that I definitely have Cushing’s Disease from a pituitary source. He asked me what I planned to do and I told him that I was having the IPSS procedure done in a few days at the University of Chicago. He told me once I got my results to contact him.
Fast forward, I ended up in the hospital with these blackouts after my IPSS. The doctors, including MY local endocrinologist told me there was no medical evidence for my blackouts. In fact, he told the entire treatment team that he even doubted if I even had a tumor! However, this is the same man who referred me for the IPSS in the first place! I was literally dying and no one was helping me! We reached out to Dr. Ludlam in Seattle and told him of the situation. He told me he knew exactly what was going on. For some reason, there was a change in my brain tumor activity that happened after my IPSS. No one, to this day, has been able to answer the question as to whether the IPSS caused the change in tumor activity. The tumor, for some reason, began shutting itself on and off. When it would shut off, my cortisol would drop and would put me in a state of adrenal insufficiency, causing these blackouts!
Dr. Ludlam said as soon as we were discharged, we needed to fly out to Seattle so that he could help me! The hospital discharged me in worse condition then when I came in. I had a blackout an hour after discharge! But get this…The DAY the hospital sent me home saying that I did not have a pit tumor, my IPSS results were waiting for me! EVIDENCE OF TUMOR ON THE LEFT SIDE OF MY PITUITARY GLAND!!!
Two days later, Craig and I were on a plane to Seattle. I had never in my life been to Seattle, nor did I ever think I would go. We saw the man that God used to save my life, Dr. William Ludlam, the same man who we had met at the MAGIC conference for the first time one month prior! He put me on a combo of medications that would pull me out of crisis. Within one month, my blackouts had almost completely stopped! Unfortunately, we knew this was a temporary fix! He was treating me to carry me over to surgery. You see, his neurosurgeon, Dr. Marc Mayberg was just as amazing. He is one of the top neurosurgeons in the US! Statistically, he has one of the highest success rates!
The problem was that our insurance refused to pay for surgery with an expert outside of IL, stating that I could have surgery anywhere in IL! Most people don’t know that pituitary surgeries are very complicated and need the expertise of a “high volume center” which is where they do at least 50 of these surgeries per year. Dr. Mayberg has performed over 5,000 of these surgeries! By this time, we had learned that we need to fight for the best care! It was what would give me the best chance at life! We thought I would have to wait until January when our insurance would change, to see if I could get the surgery I so desperately needed! I was holding on by a thread!
We began appealing our insurance. At the time the MAGIC foundation had an insurance specialist who was allowed to help us fight our insurance. Her name is Melissa Callahan and she took it upon herself to fight for us as our patient advocate. It was a long and hard battle! But…we finally WON!!!! On November 16th, 2011, Dr. Marc Mayberg found that hidden tumor on the left side of my pituitary gland! He removed the tumor along with 50% of my pituitary gland.
Recovery was a difficult process. They say that it takes about one full year to recover after pituitary surgery for Cushing’s. I was grateful to be in remission, nonetheless. However, about one year after my brain surgery, the Cushing’s symptoms returned. After seven more months of testing that confirmed a recurrence of the Cushing’s, I was cleared for a more aggressive surgery. This time, I had both of my adrenal glands removed as a last resort. By then, we had learned that I had hyperplasia, which is an explosion of tumor cells in my pituitary. It only takes one active cell to cause Cushing’s. Therefore, I could have potentially had several more brain surgeries and the disease would have kept coming back over and over.
As a last resort, my adrenal glands were removed so that no matter how much these cells try to cause my adrenals to produce excessive amounts of cortisol; the glands are not there to receive the message. As a result, I am Adrenally Insufficient for life, which means that my body cannot produce the life sustaining hormone, cortisol, at all. I had my Bilateral Adrenalectomy by world renowned BLA surgeon, Dr. Manfred Chiang, in Wisconsin on August 21st, 2013. I traded Cushing’s Disease for Addison’s Disease, one of the hardest decisions I have ever had to make in my life. However, I knew that I would die with Cushing’s. Recovery from my last surgery was difficult and involved weaning down to a maintenance dose of steroid to replace my cortisol. Now, on a maintenance dose; I still have to take extra cortisol during times of physical or emotional stress to prevent my body from going into shock.
I promised a long time ago that I would pay it forward…give back because so much has been given to me. This is why I have committed my life to supporting the Cushing’s community. I post videos on YouTube as a way of increasing awareness. My channel can be found at http://www.YouTube.com/drnkarenthames
Karen has made 2 videos about her experiences with Cushing’s:
and
Doc Karen will be our guest in an interview on BlogTalk Radio Friday December 2 at 11:00 AM eastern. The Call-In number for questions or comments is (323) 642-1665 .
The archived interview will be available through iTunes Podcasts (Cushie Chats) or BlogTalkRadio. While you’re waiting, there are currently 90 other past interviews to listen to!
Diagnosed April 1997 with Cushings. They figured it was about 9 years in coming to a head. Started with the weight gain then disc problems (surgery), problems with my teeth breaking, acne, facial hair all the good stuff. Kept changing my hair color as something just wasn’t right but eventually realized it was my skin color darkening.
Took a trip to NYC in Feb of 1987 and swelled up and turned yellow during the trip. Went to the Dr when I got back and they tested me for Hepititas (sp?) and AIDS. Dr asked me if I had been using steroids. Changed Dr’s due to a change in my health insurance.
I talked to her for about 10 minutes about all my symptoms and she said “You have Cushings”. She sent me to an endo at Portland Diabetes Clinic. He got me in to see Dr Cook up at OHSU (Oregon Health Science Univ) and he scheduled the Petrus Sinus Sampling. From that they determined it was an Eptopic tumor.
They started doing Catscans and MRI’s until they found a small lung tumor. I finally had surgery in Sept 1987. The months leading up to that surgery were pretty scary. I ended up being pretty heavily medicated by the psychiatrist I started seeing. I think for me the mental and emotional symptoms were as bad or worse then the physical symptoms.
I’d like to say that’s where this ended but…alas. I started experiencing the same symptoms again and went to the Dr again in April of 2005 and was again diagnosed with Cushings. I am back with Dr Cook and am awaiting the results of the second Petrus Sinus Sampling.
Update October 26, 2006
2nd Sinus Sampling again was negative so again have an Eptopic tumor. After about 4 months gave up looking and decided on a BLA. Since my surgery in Sept 2005 until today Oct 2006 I have lost 60 pounds and my Cushing look is starting to fade. I take my medication without fail and have stayed with my new healthy lifestyle. Still looking for my eptopic tumor, it hasn’t decided to be found yet.
To all those not yet diagnosed or “cured”, Hang in there. If you aren’t happy with your doctor, find a different one. Also, don’t wait for someone else to tell you about your disease. Research!! Hope my next update will be for my tumor removal.
Petrosal sampling confirms Cushing’s in left lobe of pituitary March 2000
Transphenoidal surgery June 2000 (not successful)
From July 2000 – September 2001 on 200 – 400 mg of ketoconazole
Lost weight from July 2000 – November 2000
Began significantly gaining weight again in March of this year (2001)
Currently reshowing all signs of Cushing’s (for a while the buffalo hump and purple striae all but vanished – oh well – they’re back, as is the mid-riff bulge – urgh!)
Still hiking, biking, swimming, and cavorting and refusing to let this whole thing get me down (yeah, right – who am I kidding)
Endocrinologist currently encouraging me to consider stereotactic radiosurgery as I have made it clear I have no desire to allow anyone to remove my adrenal glands (not that I am any more interested in having my pituitary irradiated when it’s a hit or miss deal).
Hi everyone! I’m 41 yrs old, I live in Mississippi with my hubby & our precious 14 yr old daughter.
I have suffered with so many health problems since I was around 16 yrs old.
I was just diagnosed with Cushing’s in Sept. 2013, I found out it was from a pituitary tumor in Nov. 2013. I had an IPSS in April 2014 and surgery to removed pit tumor June 13, 2014.
I just wanted you good folks to know that my dear Martha and partner for 11 years passed away this evening. I’m not sure why I am posting this now, just one thing to check off my to do list and hoping that getting this in writing will help me.
Dr. F had wanted to give Martha an IPSS, but she had a problem with an EKG two weeks ago so the doctor would not release her for surgery. She went for a cardio strees test last week and was to get her results tomorrow. She was feeling “ok” but when I arrived home this evening, I found her in the bathroom. I tried to give her CPR but I really knew it was too late.
She was such a good woman, loved her horror movies and we loved to watch them together. She cared deeply for other people and would go out of her way to tell a stranger hello and learn their name. She was even known to give little old ladies that she didn’t know a ride home if they would let her.
I’m going to miss her so much. This was so unexpected, but deep in my heart – expected. Please, love your loved one like it’s your or their last breath. Push your doctors and advocate for yourselves.
Although Martha never used this forum, she told me she was grateful that all of you were here to answer our questions and accepted us with open arms.
In lieu of flowers that may be coming, I would like people to donate to this forum in memory of Martha. Do you know who to contact or who donations should be sent to via mail?
Hi, my name is Crystal and I’m new. I’m a 35 yr.old mother of a 5 yr. old with more energy in her little pinky than I have in an entire day and I’m married to an amazing man, who makes living with this possible.
I was finally diagnosed with Cushing’s Disease (excreting pituitary tumor). In April 2017. I had the typical doctor who didn’t believe me so I took it into my own hands and figured out what I thought was going on….Cushings without a doubt in my mind.
So I went to a naturopath and asked her to order me a 24 hr. urine test and when she got it she said I need to go to an endo asap. I had already made appointments with two, one being at OHSU in Oregon with one of the best pit. teams in the US. I only live 2 hrs. away and am sooo lucky for that. I know many people have to travel much further to get the best healthcare for this.
Anyways, the endo I saw in Portland looked at me and immediately and said I had a very cushoid appearance and that we needed to do about 6 tests in the next two weeks. I did the tests, then had to do an MRI, which showed a 5×4 tumor in my pituitary gland, next was an IPSS to make sure it was 100% pituitary and not ectopic coming from somewhere else in my body. Once this was all confirmed I was scheduled for surgery in June.
As my surgery date approached, my symptoms got significantly worse and I finally called my endo to tell them. The nurse told me I had to deal with it until surgery and that there was nothing tI could do about my symptoms. Within 5 minutes of hanging up the assistant to the neurosurgeon called and told me surgery was being moved to the following week which was four days away. I had the transsphenoidal surgery about 6 weeks ago and my cortisol dropped to 0.6 in less than 24 hours after surgery. The neurosurgeon said I was technically in remission and although I’m happy, it seems to good to be true after the last couple years I’ve had. I came to this site looking for information on recovery. I know everyone is different and I was warned a little bit about it, but I’m pretty miserable and very curious how others recoveries are going.
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