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Cushing’s Disease and how a brain tumour made me fat. | Skeptical Artist

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The author of this blog post is a member of the Cushing’s Help Message Boards.

…I’d been feeling a little off colour and had put on a bit of weight so went to the doctor at the beginning of last year (2012). In September 2011 I’d been running and blacked out. Through the rest of the year even though I was careful about what I ate, was swimming 80 lengths of the pool everyday and running pretty regularly I was still gaining weight. It’s weird that I found it hard to climb the stairs at work because my thighs felt so weak but could still swim a couple of km. I found it difficult to sleep and bruised pretty easily.

It was a bit of a shock to be told I might have a very rare brain tumour releasing the hormone cortisol that affects 10 in a Million people. Things went downhill and Cushing’s Disease really started breaking apart my body. My muscles wasted and I carried on putting on fat. Joints skin and feet were all affected. I’ve heard Cushing’s Disease called the ugly disease so yep not great…

Read more at Cushing’s Disease and how a brain tumour made me fat. | Skeptical Artist.

Lajla, Adrenal Bio

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Hi!

My name is Lajla, born 1967, in Umeå, Sweden. In August 2012 I was diagnosed with Cushings Syndrome (adrenal). My health status by this time was terrible, with almost every part of My body affected – i.e. Heart, lungs, kidneys, brain, skelet, muscles, skin and a heavy weight. The very first time, I believe, I had symptoms fr.o.m. Cushings were in 2004, with adrenal pain and kidneys that reacted in a strange way. Tests results gave no clue. After that I’ve seen a doctor for several times, with new symptoms every time. The doctor didn’t believe me.

Summer 2012 I was in a very bad shape, with anxiety, fractures, insufficiens in both lungs and circulatory. I went to see another doctor, and that saved My life! In september 2012 My left adrenal gland (and the adenoma) was taken away. The result is called “very successfull”. Many of My problems are gone (or at least nearly). The weight is now normal, after the loss of about 92 lb. I still suffer from pain due to the many previus fractures and from the atrofia of the muscles. I also have adrenal insufficiens and fatigue. I can now do some easier work (that not needs muscles). For the first time since the ectomia I’ll have a real vacation! In about a week I’ll visit New York, something that I never thought would be possible!

Feel free to correct My english!

This site is the best for me to get information about Cushings. In Sweden there is none!

Thank you! 🙂

Lajla L

Woman who couldn’t lose weight diagnosed with a hidden adrenal tumor

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  • Naomi Benton, 34, baffled doctors for more than a decade
  • She continued to pile on the pounds despite following an 800 calorie-a-day diet and undergoing gastric bypass surgery in 2008
  • Tests finally revealed an orange-sized tumour on her adrenal gland
  • After having it removed she now only weighs 14st, but has 4st of excess skin

By ANNA HODGEKISS

A woman who weighed 32 stone has told how her excessive weight was due to a hidden tumour.

Naomi Benton baffled doctors for over a decade as she continued to pile on the pounds despite following an 800 calorie-a-day diet and undergoing gastric bypass surgery.

The 34-year-old from Haddington, East Lothian, pleaded with doctors for help after she ballooned from a healthy 10 stone at age 20 to more than 32 stone.

Naomi Benton baffled doctors for over a decade as she continued to pile on the pounds despite following an 800 calorie-a-day diet and undergoing gastric bypass surgeryNaomi Benton baffled doctors for over a decade as she continued to pile on the pounds despite following an 800 calorie-a-day diet and undergoing gastric bypass surgery

The mother-of-two failed to drop any weight after her bypass surgery in 2008 and medical staff assumed her huge frame was due to secret snacking.

But when she was hospitalised after a bad fall the following year and her weight continued to balloon, she underwent tests which revealed the hidden deadly mass.

Further blood tests showed she was suffering from Cushing’s syndrome – a collection of symptoms that develop in the body due to high levels of a hormone called cortisol.

The tumour, which had developed on her adrenal gland located on top of the kidneys, had grown to the size of an orange and Ms Benton underwent an eight-hour emergency operation.

Ms Benton, who now weighs 14 stone, needs plastic surgery to remove four stone of excess skin.

She said: ‘I was always fit and healthy but when I hit 20 I started to dramatically put on weight.

The 34-year-old from Haddington, East Lothian, pleaded with doctors for help after she ballooned from a healthy 10 stone (pictured) at age 20 to over 32 stone
The 34-year-old from Haddington, East Lothian, pleaded with doctors for help after she ballooned from a healthy 10 stone (pictured) at age 20 to over 32 stone

When she was hospitalised after a bad fall and her weight continued to balloon, she underwent tests which revealed a tumour on her adrenal gland. She is pictured in hospital after having the tumour removedWhen she was hospitalised after a bad fall and her weight continued to balloon, she underwent tests which revealed a tumour on her adrenal gland. She is pictured in hospital after having the tumour removed

‘Just after my first pregnancy I managed to put on over five stone despite not changing my diet and just couldn’t drop the weight.

‘I went to the doctors numerous times about the dramatic gain but no-one believed that my weight wasn’t just down to a very unhealthy diet.

‘It was so frustrating, no-one was listening to me when I told them I wasn’t stuffing my face.

‘I was sent to see a dietitian who helped monitor my 800-calorie-a-day diet. Every day I was weak and tired, but still hadn’t lost any weight.

Naomi Benton
Naomi Benton

Ms Benton lost weight quickly after her tumour was removed and now weighs 14 stone. She needs plastic surgery to remove four stone of excess skin (left). She is pictured (right) before her weight loss

‘Even my friends and family were convinced I was eating in secret and complete strangers would tell me I needed to go on a diet.

‘Finally I signed up for a gastric bypass but after the op still didn’t lose anywhere near the kind of weight that was expected.

‘The breakthrough came after I was laid up in hospital for eight months after breaking both arms and legs in a nasty fall.

‘A junior doctor stopped by and asked if he could take run some new tests which finally showed what was wrong.

Ms Benton said: 'Now I'm just glad the tumour was discovered, as I'd hate to think what would have happened if it had gone on for longer'Ms Benton said: ‘Now I’m just glad the tumour was discovered, as I’d hate to think what would have happened if it had gone on for longer’

‘The tests revealed I had Cushing’s syndrome and a large tumour on my right side.’

Just weeks after having emergency surgery, the weight began to fall off her.

Ms Benton said: ‘Now I’m just glad it was discovered, as I’d hate to think what would have happened if it had gone on for longer.’

She has now shrunk down to a dress size 16 and but hopes to reach a size 12 and weigh 10 stone.

She added: ‘I’m a work in progress and I’m taking it in baby steps. I can’t wait to look and feel like my old self again.’

WHAT IS CUSHING’S SYNDROME?

Cushing’s syndrome is a collection of symptoms that develop due to very high levels of a hormone called cortisol.

The symptoms include weight gain, thinning skin, stretch marks and decreased interested in sex.

The condition often develops as a side effect of treatments for inflammation and autoimmune conditions.

It can also develop as a result of a tumour inside one of the body’s glands.

The main treatment is to stop taking the medication that is causing it or to remove the tumour.

If these options are not available, medication can be used to counter the effects of high cortisol levels.

If left untreated, it can cause high blood pressure which can lead to heart attacks and strokes.

It affects about one in 50,000 people.

Source: NHS Choices

From: http://www.dailymail.co.uk/health/article-2510680/32st-woman-lose-weight-diagnosed-hidden-TUMOUR.html

Rashelle, Pituitary Bio

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From 10/11/2010:

My name is Rashelle and here is my success story.

I grew up as a tall, skinny, athletic and active girl. I was one of those girls you envied who could eat what I wanted, when I wanted without having to worry about gaining weight. In fact most my high school life I maintained a steady weight of 118 pounds.

That all changed in the blink of eye during my senior year of high school. At 18 yrs old my once long and skinny face, turned round and moon-like. My stomach, once flat as a board, now looked like the belly of a pregnant woman. I once stood tall but found it difficult to keep my shoulders back with the “buffalo hump” now protruding behind my neck. My nice long legs now were now covered in stretch marks and I started getting unwanted hair in places where hair should not grow on a girl. I stopped getting my period, felt tired all the time and started to get really bad migraines. I suffered insomnia and depression.

I knew there was something wrong but didn’t know what. The worse part was the embarrassment of gaining so much weight, over 50 pounds in a matter of 4 months.  I would run into old classmate and I could tell by the look on their faces what they were thinking. Some would do double takes, not even recognizing me at first glance. Once I ran in to my high school crush, whom I hadn’t seen in years, and he was so confused by my appearance and swollen face that he asked if I had just gotten my wisdom teeth out? I wanted to crawl under a rock and hide.

After being testd for all sorts of thing,  my family doctor (whom I’m sure thought I was a hypochondriac by now) referred me to an Endocrinologist in 1999. Finally I would be getting some answers!

Much to my disappointment the specialist found nothing wrong with me except claiming that I had a bad case of Polycystic Ovary Syndrome (PCOS). Regretfully this was a wrong diagnosis that caused me to live with Cushing’s disease 4 years longer than I could have. I was prescribed some medication to help with my facial hair on my chin and upper lip. But that was the least of my worries, the hair was hardly noticeable, it was my weight that I was concerned about. From then on I  became an exercising dieting queen. I was going to Curves and working out at the YMCA and I tried every diet imaginable from Weight Watchers to Jenny Craig, Atkins to Body for Life. But no matter what I did nothing seemed to work. I was so frustrated! My last resort was to lay out the money to see Dr Lefebvre, a weight maintenance control specialist. After a few months of treatment, being told to eat 500 calories a day, and losing a minimal amount of weight, I was questioned about how much was I really eating as to inadvertedly accuse me of being a closet eater.

In the year 2000 I went backpacking through Europe for 2 months. Despite the headaches, fatigue and extra weight I had to carry around I was determined to have a good time. The trip was challenging, after 2 months of walking everywhere with a heavy backpack on my back I still had not lost any weight. During this time I was also earning a Degree in Journalism and working lots of hours. Trying to balance school, work and a social life was a difficult because I was exhausted all the time and had zero energy.

Fast Forward to November 2002, age 23; my mom had been with me through this whole rollercoaster ride and was just as frustrated as I was. One night she was searching the internet for what could possibly be wrong with me when she came across this website on Crushing’s Disease. She called me over and we were amazed to find that I had almost every single symptom listed! So the next day I asked my doctor for if I could get a second opinion from a different Endocrinologist.

This time my new specialist said it was unlikely I had Cushing’s yet sent my to get a 24 hr urine test, something the previous Endo had neglected to do. She said it was the “golden test” that would confirm if I did indeed have it. I remember when the test results came in and I got the news. My cortisol level was unequivocally elevated at 1061.3 nmol/day indicating that I most certainly had Cushing’s disease. I was so scared, yet even more so I was relieved that I had finally been diagnosed. The next step was an MRI to determine whether or not I had a tumor on my pituitary gland or on my adrenal gland. As it turned out the tumor lesion was on my pituitary and measured 0.9 x 0.9 x 1.6 cm in height. It was explained to me that pituitary tumors have a 65% cure rate, but there is a lack of cure with pituitary surgery when the tumor is over 1 cm. So my cure rate goes was only 35%. Even so I was anxious to proceed with the surgery despite these statistics.

On Feb 7, 2003 I had the surgery and was discharged from the hospital 5 days later. The road to recovery was a long one but I had high hopes when I notice that my headaches had disappeared and I got my period again for the first time in 4 years. However, I still appeared quite “cushingoid.” Doctors believed that I had been cured but could not tell for sure as it was hard to distinguish scar tissue from the tumor on the MRI. They warned me that results (losing the weight) could take a while so I went on with my life waiting and watching patiently for any changes.

Later that year on October 2003 I was rushed to that hospital for what appeared to be a really horrific migraine. But it was a lot different then any other headache I had ever had. The pain was so intense and almost intolerable I wanted someone to take a gun a shoot me! I spent 36 hours in Emergency being treated for what the emergency doctors diagnosed as “just a bad migraine.” Finally obtaining a CAT scan showed that it wasn’t a migraine after all, my tumor was still there and had hemorrhaged and bled into my optic nerve. I had right sixth nerve palsy with decreased visual acuity in my right eye. I spent 3 weeks in the hospital and could not see properly out of my one eye for over 5 months. Luckily my vision eventually came back 100%. My specialist and surgeon decided that the hemorrhaging had been a blessing in disguise as it could mean that the tumor could be all gone after the episode but it would be too soon to tell.

Then, March 2004 I awoke in the back of the ambulance to be told that I had had a grand mal seizure. Doctors found this to be a mystery since I had no history of seizures or epilepsy. Tests concluded that the crushing’s was still present and I had another MRI which showed residual tumor still extending into the cavernous sinus which is not approachable surgically. The tumor was now only a dangerous 4 mm from my optic nerve.  So the next option was to be referred to a Radiation Oncologist to discuss the option of radiation.

On Oct 20, 2004 I had stereotactic radio surgery. The following week I felt great until the effects of the radiationg suddenly hit me. The radiation took a toll on me and I could not even find the energy to get myself out of bed. It was by far the sickest I have ever been in my whole entire life. Eventually, after being bed ridden for several months I regained my strength and things got back to normal. I still had not lost any weight and showed most of the signs of crushing’s. It is believed that by doing the radiation, it impacted my pituitary function causing it to lose partial functioning. As a result my adrenal glands started to over react to compensate which was not helping my Crushing’s at all.

So, the next step was for surgeons to perform a bilateral adrenalectomy. In June 2006 what was suppose to be a simple, not so risky surgery turned out the opposite. The procedure should have only consisted of 4 very small incisions done laparoscopy. However, during my surgery they discovered that my liver was too large and had to do a complete incision across my whole stomach in order to proceed. Post surgery my blood pressure was so high I was monitored and not let out of the post opt room for 14 hours. On a side note while going through my medical records I discovered that after they had stitched me up a I had to have an X-ray while still under the anesthetia . Apparently the operation room was missing a pair of scissors and they were thought to have been left inside me! Luckily they were found elsewhere.  My recovery was a long and painful but I kept hoping and praying that this would be the cure, especially after my long history of unsuccessful attempts. First the pituitary surgery, the tumor hemorrhaging, the grand mal seizure, radiation, and then the bilateral adrenalectomy. I couldn’t imagine what I was going to do if this did not work as I knew I was running out of options. My fear of never finding a cure led me to seek further answers.

In January 2007 at the age of 26 and a few months post op my parents took me to the Mayo Clinic in Arizona. With all my medical records in hand we met with top of the line doctors and discussed my condition and prior attempts to get cure my crushing’s. The doctors said it was unfortunate and just plain bad luck that I had encountered so many problems on my quest for the cure. As far as the specialist was concerned everything that could be done, had been done. Six months after I got my adrenal glands out I finally noticed that I had started losing weight. At this point I had given up on exercise and eating healthy so found it to be a small miracle. Day by day and month by month the pounds started melting away. I was losing weight as fast as I had put it on and the best part was I wasn’t even putting in any effort to do so. Before I knew it I was down to a healthy 130 pounds and back to myself.

At the age of 27, I had been cured of Crushing’s! I  to had overcome this horrible disease that It had overtaken my life and I\could  begin working on getting my life back. By this point I found it difficult to find a job in the journalism field due to the fact that I had a huge gap in my resume. Having graduated so long ago and not having had any experience made it impossible to even get an interview. Looking back at all I had been through I expected to be happy I had been cured but instead I strangely became depressed.

Once an dedicated Christion, I was now mad at God for making me miss out on so much. I felt like by now I should have been married, had kids, owned a home, been established in my career etc. But I wasn’t. I had lost out on so much precious time. I started to hate the job I once loved, sleep a lot, and do things that were out of character for me. I got involved in a relationship with a married man whom I had met on a plane and that didn’t even live in my city. It had been so long that any one of the opposite sex had even paid attention to me that I thrived on the attention. I latched on and became obsessed and needy (totally not me). I just could not find happiness and had delusions of what my life could be like with this secret love affair. On a whim I decided I was going to move to the same city  as him. So  I packed up all my belongings, ordered a moving truck, gave notice to the place I was renting, got a transfer at my job, and found a new place to live.

Three days before I was suppose to leave I overdosed on some pills. I dont remember the incident, not even taking the pills, just the part of having to drink that disquisting tar stuff. I was admitted to the Psych ward and held against my will. I spent 3 weeks as an inpatient and attended therapy sessions daily. I was diagnosed with bi-polar disorder and it was explained to me by my psychiatrist that I had been grieving from a sense of loss. Only the loss was not a person, it was a loss of time. While battling cushings I was always concentrating on getting better that I didnt even have time to focus on my life goals. But now that I was better I had time to realize all the I missed out on. After being released as an inpatient I became a mandatory outpatient. For one month I had to attend daily classes at the hospital. The sessions focused on being in the present and included things like art classes, sailing, yoga and medititation as well as daily therapy sessions. I learned all sort of coping mechanisms so now when I am depressed  instead of sleeping to escape the pain, I draw color, write  or make a collage. In the end what could have ended in tragedy, opened my eyes and helped me a great deal. I still battle with depression and at times fall into a deep black hole but I always manage to pull myself out of it.

I honestly believe that since losing my adrenal glands I have become a different person. My emotions are intensified, I get stressed and sick easily and am quick to anger. It has definitely taken some time to get use to. Istill have to see the doctor regularly to monitor my meds and will be on medication for the rest of my life. I have hypoglycemia and Addison’s disease which so far only affects my skin pigmentation and gives me a year round tan. All of that is nothing compared to what I was dealing with when I had cushing’s. Having the disease strangely somehow has made me a better person. I am not quick to judge a book by its cover and really truly care for people. In fact, after all the time i spent in the hospital I am now back in school to become a nurse.

So remember that what ever you are facing, whether you have been diagnosed or are trying to get diagnosed, never give up. Stay strong, keep praying and believing.

Update 11/4/2013

In fact, after having completed my Degree in journalism I am now going back to school to become a nurse. After my experience I want nothing more than to help people who are sick. Just remember that what ever you’re facing, whether you have been diagnosed or are trying to get diagnosed, never give up. Stay strong, keep praying and believe you will be cured.

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Magdalena, Food-Dependent Cushing’s Bio

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Magdalena is from Windsor, Ontario (Originally Poland). She has Food-Dependent / GIP-Dependent Cushing’s Syndrome. This means that genetically, she has cells on her adrenals that are only supposed to be in her intestines. They respond to a polypeptide hormone (GIP) that is produced in response to food. So when she eats, the hormone triggers her adrenal glands and they produce cortisol. It is an ectopic response that is ACTH-independent.

A Golden Oldie last updated 01/22/2008.

~~~

Hi, I am 22 years old now, at diagnsis. I have a rare form of cushing’s syndrome called food-dependant cushing’s syndrome. Sometimes it is referred to as gip-dependant cushing’s syndrome. This means that genetically, I have cells on my adrenals that are only supposed to be in my intestines. They respond to a polypeptide hormone (GIP) that is produced in response to food. So I eat, the hormone triggers my adrenal glands and they produce cortisol. It is an ectopic response that is acth-independant.

I am writing this bio because it was very hard to find this disease, and it was like nothing else, even normal cushing’s fit rather loosely.

I began having problems at age 12, but the disease did not “blow up” till I was 19. When i was 12, I started having stomach pains. First, the doctors said it was apendicitis, then my period, then lactose intolerance. This was on and off, and I kept eliminating foods that I thought i might be allergic too.

When I was 15, the problem intensified. I lost my period and my stomach aches grew worse; I noticed that my stomach was quite swollen after a normal meal, and everyone elses was not. I assumed that it was my fault and I should eat healthier.

Unfortunately, the stomache aches grew worse till my stomach swelled even below my breastbone and I could barely breathe. I started eating very little and very thought out proportions of food, often feeling that I was doing this to myself and then feeling that this couldn’t be normal.

At 17, I started getting really annoyed that my face was so swollen all the time and my skin so bad; I thought i was just ugly. I was quite thin at 5’5″ and 105lbs, but with a very swollen face and stomache. This was getting out of control, the pain was worse, and I was getting thinner. My yelled at me in class because I wasn’t jumping high enough and I told her it hurt cuz of my stomach, she told me I was too thin and that I probably had an eating disorder.

I was in so much pain, I would have gone to a doctor for a monkey growing out of my head. I went to the eating disorder doctor, I told her my stomach hurt. She told me I had an eating disorder (no kidding.) I was put into a group where they would feed me. Over the next two years, I was put on many antidepressants, fed weight gainers, but the pain grew worse and I grew thinner.

Eventually, they put me in the hospital where the problem grew much worse. I couldn’t even lay down because the food would come back up to my throat and I started having a problem with constipation. Nausea became a problem; thank God I only threw up once in my life, when I was five and I had the flu. I have never had a high temperature since, or thrown up since. This should have been a sign that something was wrong with my immune system, but no one listened. For some reason, my cholesterol was very high and I had a fatty liver. Needless to say, there was no improvement and I signed myself out after 6 weeks.

I knew there was something wrong. I was 19 and the pain was worse. I left my eating disorder doctor with the same complaint that I had come with. So she said that I had IBS. I knew that couldn’t be it, because it never went away, it only got worse, and it had nothing to do with stress or the type of food I ate. To the day of my diagnosis, I thought IBS was a bullshit diagnosis- we don’t know what’s wrong yet…

At 19 something odd happened, i started gaining weight very fast and my ankles and knees started hurting. I was pushing through the pain to eat because life was hard, but I started gaining weight too fast. I went off to a musical theatre conservatory in Feb 04 and disaster struck. I blew up like a balloon, my face looked awful and my stomach would hurt to the point I would become paralyzed. It hurt to breath and I could barely walk upright sometimes. I came home and we went through the diagnosises; pancreatitis, ibs, psychosis, eating disorder, lupus, diabetes, thyroid and celiac disease.

It looked like celiac disease so I eliminated bread, but little changed. It was winter and I could barely shower and comb my hair because I had so little energy. The weight would come on so fast that my skin hurt to touch, and my eyes were swollen shut. I also thought i was psycho, but a little voice said I couldn’t be.

The next october the same cycle occurred, really quick weight gain, fatigue, sweats, and blurry vision. Independant university study was hard, but I got through it. That May and everything started going down, I could exercise again. However, the fatigue, nausea, stomach pain and occasional flareups were a rollercoaster. I know now that these are signs of adrenal insufficiency because my acth was still suppressed. The flareups made me feel crazy, that i was doing this to myself by eating.

The third time this cycle happened was much more painful. It was sept. 06 and I was going to university again. The bachelor of design was tough and I had to focus so much on staying healthy. Going to the gym everyday to sweat so that my swelling would go down. Watching what I ate, doing an IBS diet. I realized I couldn’t digest fruit or vegetables. I kept going to endocrinologist because I had no period and my dhea was high (which worried my gynecologist), but they all said it was nothing. My stomach aches occurred after eating, and even drinking water. The doctor at my school told me that I should know how to stop eating and drinking (He was a really fat, sweaty guy too). I had constipation for 10 days straight and laxatives barely worked. I had such swollen lymph nodes that I tasted raw blood in my throat and could barely swallow. Needless to say, I came home.

I ended up in the hospital at Christmas. The ER doctor and gastroenterologist both said there must be a endo problem because I had been constipated for 10 days, colonoscopy laxatives weren;t working, and my intestines and bladder was so full they couldn’t see on the Ct scan.

I finally went to an endocrinologist in Toronto, Dr. Rosario Briones-Urbina. I suggested Cushing’s, she said I was too skinny. Though I had just gone from 110lbs to 130lbs in two weeks. She agreed to test me in Jan. The test came out 550 out of a max of 250. She waited three months to do the dexamethasone and it was too late, it was march and my cortisol had gone to 90 (the min. was 60). She said she had never seen such a quick cycle.

I wanted to show her just how fast the cycle was; I took a UFC one day that came out 90, the next day I had a party, ate just like everyone else, but got a paralyzing stomach ache and sweats. I did a UFC the next day and it came out 350 (max 250). She was shocked. She said my symptoms fit an extremely rare form called food-dependant cushing’s. Unfortunately, the testing is not standard and I am waiting for it. After it is done, I will have a bilateral adrenalectomy.

If you got this far in my story, thank you for baring with me. I haven’t found a story like mine and wanted to share it, cuz I spent so much time looking. Over two years, I saw 24 specialists. I don;t know how I got through it, I must of been quite a witch with a B. However, I kept pushing. I studied at home independantly to keep me going and have now been accepted to medical school.

The most important advice i have to give is this:

    1. GO TO A TEACHING/RESEARCH HOSPITAL!!!
    2. If you have kids, think twice before eating disorder treatment. I went into the program with pain and a method of coping. I came out with an eating disorder psyche, bad experiences, and a truckload of pills that were making me crazy.
    3. IF YOU THINK YOU HAVE FOOD DEPENDANT CUSHINGS, HERE IS HOW I COPE;
      • the cortisol goes up with too much of any protein, fat or carbs. I eat small turkey/cheese sandwiches at every meal (enough to be full, but well balanced).
      • I use stevia instead of sugar because its natural (health food isle.)
      • alcohol really hurts now, so only a little wine occassionally.
      • lots of yogurts.
      • every couple days a mixture of senna laxative and stool softener (not too often)
    4. Remember the squeekiest wheel gets the grease.

Joseph (joeysauce), Pituitary Bio

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Hello everyone. My name is Joe. I’m a 23, soon to be 24 year old male who is (hopefully) in remission from ACTH-dependent Cushing’s disease and two transsphenoidal surgeries.

I’d like to say my journey all started back in November of last year. Though, the past year has been a stressful, anxiety filled year for me with a roller coaster of it’s own. I was working full-time as a web designer at a web firm down the block from me for a little over a year, but was just getting so sick of the grind. I was also dating a younger girl for about 2 years up at this point, who had just left for college last August. Thinking that I was finally going to have a little more time to myself to make and save money and just freedom in general, I was proven very wrong. As soon as she left, the separation anxiety hit me like a TON OF BRICKS. I could hardly sleep, go to work, or even function. I knew the first thing I needed to do was free myself of the miserable grind of work and get back to freelance work. I told my job I was leaving and actually had an opportunity to do some other work with my uncle across the country decorating malls for the upcoming holidays as soon as my two weeks approached. It was a nice break and a good way for me to get away and experience some new things, like my girlfriend was doing. When my girlfriend first went away, I started taking Valerian Root to help me sleep and have been taking St. John’s Wart for about a year and a half to keep the anxiety as it’s lowest. I decided that when I get home from this trip, now that I’ll have a MUCH more free life, that I’d like to cut out all these vitamins that I’ve been taking for years to help with my skin, health and anxiety. Like Fish Oil, Vitamin A, E, C, Multivitamins, Probiotics, etc. I wanted to come home and have an awesome natural routine of exercising, working, and juicing. It sounded perfect. Make money, get fit, stay healthy and feel good. As the end of the trip approached, I was pretty much finished with all the vitamins. We traveled for about a month and a half and was home just in time for Thanksgiving. My girlfriend was home then as well, so it was good to see each other again finally. We were in touch as much as we could be when we were both away and decided to keep things going.

Here’s where things started to change. One of the FIRST things my mom said to me when I got home was “Wow, your face looks puffy and swollen.” I actually agreed and said it’s probably this stuff that I decided to stop taking called “hyaluronic acid”. It’s supposed to make your skin more supple and moisturize from the inside out. I figured that’s why my face was looking that way. I JUST started using it too. As the weeks went on, I noticed that there was a prominent redness in my cheeks as well. My cheeks were usually red like this, and I always thought I had Rosacea, but noticed that they were now red the whole day long, and I could almost see where the redness kind of cuts off. I didn’t pay much attention to these signs, but still was a little concerned.

As the holiday’s approached, I didn’t really get a chance to start working out or running or anything that I planned to do now that I was working home. I was gaining a little bit of weight in my face and my tummy, but just blamed it on being lazy. My girlfriend noticed and would tell me that I’m getting chubby and looking different. It was getting pretty annoying at this point hearing everyone saying that I’m puffy and chubby looking. I then started to work out a little and was running as much as I could outside, even though the winter was approaching and it was getting harder and harder to run. I really wasn’t seeing much progress and even started to diet pretty hard with veggies. The crazy part is that I’ve ALWAYS been such a thing HEALTHY person. Always juicing veggies, always drinking water, always taking vitamins, very athletic, etc. It was crazy that I couldn’t get rid of this belly weight or get my face to slim back down.

This is when the weirdest thing happened…The stretch marks. I began to freak out. I saw these ugly purple lines on my inner thighs and was really confused. I thought…”How can someone my size get marks like this…am I exercising too much?” This was around February, and my girlfriend came home on another break and I remember one morning her mother made a comment and said “Wow, your face is so puffy and red, maybe you’re allergic to something, you look so different” This is when I finally decided that I needed to see a doctor. I decided to see an allergist to figure out why my face is so red and bloated looking. We did all kinds of allergy tests just to find out that I’m allergic to most environmental allergens. In between visits, I was doing my research. I started to Google things like “stretch marks inner thighs” and eventually came across the word “Cortisol”. Then Googling Cortisol, I eventually came across “Cushings”. I started to read the symptoms and began to notice that the majority of them were exactly what I had. The “moon face”, the “striae”, the “central obesity”. Then I realized how bad my sleep was over the passed few months. I thought it was just me being anxious about work, because I would wake up VERY early in the morning and wouldn’t be able to fall back asleep, so I would just get up and make breakfast and hop on the computer. Then I remembered the headaches I’ve been getting, or how tired during the afternoon I’d be. I was starting to make sense.

So one of the visits with allergist, I figured I’d mention the research I was doing. I asked the doctor if he was familiar with the disease. He said he definitely is. I showed him how different I looked a few months ago, and showed him my stretch marks. He was pretty shocked to see, but said it could just be from just eating bad and not exercising enough. I asked him if he could get me a blood test to check my Cortisol anyway. He said absolutely and sent me to a lab a few blocks away. I was very much expecting to see high cortisol levels. Like a fool, I went right after my appt with him, so the blood was taken around 12PM. I didn’t realize then that cortisol should be drawn around 8AM, but anyway…

The next time I came in to see him, he gave me the results. He said “You wanted to know if your Cortisol was low, right?” I said “No, I wanted to know if it is high.” He said “Oh…well, yes, they are a bit high.” He did mention that the RX said for me to have them taken in the morning and was kind of mad that the nurse didn’t notice that and say to come back in the morning. He said they could be high because of the time of the day and maybe the stress because of what I thought was going on. I knew now that I had to take these results to an endo.

This is when I started to mention things to my parents. They knew I was seeing the allergist and I have already talked to them about the cortisol and cushings, but I didn’t really get in depth. Once I had this blood taken, I knew I had to let them know what I think is really going on. I explained that the disease is caused by a tumor in the brain, or in your adrenal glands and they thought I was talking crazy. I was looking for local endos and found one not too far from me. When me and my mother first met with him, I knew instantly I wasn’t going to like him. It seemed I had to introduce myself before he even said anything. When I explained what I thought was going on, having Cushing’s and all, he said “You don’t look suspicious of Cushings at all.” He mentioned that the disease is VERY rare and that he has only diagnosed it about two times in his career. He looked my stomach, the back of my neck and said that when people have moon face, you usually see fatty deposits by the side of their eyes. As much as I didn’t want to hear I have Cushings, I wanted a solid answer to what is going on. He didn’t even ask to see the stretch marks when I mentioned them. He said, “Yes your cortisol is high, so we will do further testing.” I took home the urine test and also had a few blood tests done. Very anxious at this point, a few days passed and we came to see him again. Just as I thought, very high cortisol levels. He seemed very shocked and pretty much stated that Yes, I do have Cushings. He then wrote up multiple RXs for me to have done. An MRI, a CT scan, a chest scan. I was beginning to get pretty nervous. He explained how the disease is very complicated to diagnose and to find where the excess cortisol is coming from exactly. I was becoming very knowledgeable at this point and knew it wasn’t going to be an easy process.

Things started to get a little ‘different’ around the house and with my relationships. I’m actually a triplet and 1 of 3 children. My brother and I are very close, but not so much with my sister. My brother knew what was going on, but didn’t really know much about the disease. I would tell him and explain to him, but not really sure if he was even listening much. My dad was starting to get involved with things and becoming supportive of the changes. I was getting depressed with how I look and felt, and thankful my girlfriend was still away, even though I could’ve used her support…I just didn’t want her to see me like this. Things started to become pretty stale with her and my health was becoming more of a priority. I told her what was going on, but she hardly understood. So I started with the CT scan.

The doctor suspected the tumor to be found my in adrenal glands. Unfortunately, there was nothing to be found. The doctor then took some more blood work and realized that we should be looking in the pitutary. I then had an MRI done. At this time I receiving help from the whole family. My aunts and uncles were doing some research too, looking for better doctors. We live on Long Island, New York…so Manhattan is just a small trip away. It’s said that the best doctors around here are located in NYC. My mom found an endo by the name of Eliza Geer at Mount Sinai Hospital in Manhattan. We were lucky enough to get a appt rather quickly. We were still waiting on the results of the MRI at this point and recieved them the day of the appointment.

We took them to Dr. Geer. Now this Dr. is no ordinary endo. She actually is VERY familiar with the disease and runs a research study on Cushing’s on “Body Composition and Metabolism” in Cushings patients. Immediately, we knew were at the right place. She took a look at all the blood work and could most definitely tell that what is going on is definitely Cushings. She was very impressed with me that I was able to basically diagnose myself, and asked me if I was studying in the medical field, hah. She knew that there was no need for more testing, but now just to figure out the source. We gave her the CD with the MRI results but she had trouble getting the images to show up on her computer. She asked that if we could wait a bit longer, that we could meet the neurosurgeon that she works with, Dr. Kalmon Post, and we would look at the imaging together in his office. Feeling pretty good about the new doctor, we waited a bit in the lobby until they could both see me again. During the wait, I dozed off, but woke up to my mother and aunt talking to a lady in the lobby. She was with her son. After some conversation with her, they found out that he also had Cushings, and has been going through it for several years. He is 20, so a few years younger than me. My aunt asked if it was okay to exchange emails, so me and him have actually been in touch since our surgeries.

Anyway, it was finally time to meet both doctors. Feeling very nervous and anxious, we sat with them and he explained a little more about the disease, and the complications of the surgery, etc. He made a joke about my rosy cheeks and it actually made me feel a bit comfortable with him. He also said how the reversal of the symptoms almost seem magical. I was beginning to feel really good about him as well. He said that he does pituitary surgeries multiple times a week. He then opened the CD and we all looked at the images together. He explained that when there is a distinct tumor found, you will see it quite easily and explained how it would make the gland look in the scan. Unfortunately…we couldn’t find anything. He explained that at this point it could so small that it may never show up on the scan, so he never wants to go into the gland and begin any sort of surgery without being 100% positive that this is the source of the problem. He then explained that there is procedure that completely confirms where the source is…”Inferior petrosal sinus sampling” It sounded pretty strange to me, but I knew it had to be done. As soon as we left his office, we made an appt with Dr. Patel to have the IPSS done ASAP.

A week later we were back for the procedure. What a strange procedure…but all went well. The results came back telling Dr. Post that it’s time for surgery. I think it was another week or so later that we made the appt for my first surgery on May 6th 2013. Both anxious and excited, I was more that ready to get this done and over with. My surgery was late in the day, so I wasn’t in recovery until I think about 6pm and then in my hospital bed until about 8pm. I remember my endo coming to see how I was feeling, as well as my surgeon. Knowing that I was supposed to be feeling flu-like symptoms, I was honest and said that I felt okay. My parents spent the next few hours with me until they had to leave. Unfortunatly, I was not feeling any sort of crash, but just very uncomfortable from the darn nasal-tampon in my nose. The next day the blood results came back from after the surgery and my cortisol levels were still very high. Disappointing news, but pretty much expected. I think they were 77. Though, the doctors mentioned that a second surgery is common and that the levels may be high because of the time of the day. We still kept our fingers crossed that they would still be dropping over the next day. They did come down ALOT the next day, but not in a normal range. I was sent home on the Hydrocortisone, incase that they would continue to drop, though I wasn’t very optimistic at this point. The pathology report did come back that whatever he did remove was all tumor, so that was good to hear.

Still feeling the Cushing-like symptoms over the next few days, I took my week later blood work again just to find out that the cortisol levels went back up. My endo said that I am going to need another surgery. I remember my surgeon explaining how he wants to be as gentle as possible when messing around with my pituitary, to make sure no damage is done to it. So I understood that maybe there is some tumor cells left behind and this time he will get the job done. We were lucky enough to schedule the second surgery only about a week or so later, with a very early appointment (May 20th).

Right before the surgery, the surgeon came to me and my mother and mentioned “Hyperplasia”. He said it’s very rare, but there is a chance that my gland is what’s producing the excess ACTH and not a tumor. He said is going to try his best to determine that and continue to remove any abnormalities he see, as aggressively as he thinks he needs to be. A few hours later, waking up in recovery I felt crazy anxious. I couldn’t stand the oxygen mask so I removed that after a few minutes. I could not wait to be in my bed. Unfortunately, again, I was not feeling the crash. Disappointed again, we were giving it time and hoping again that there were just a delay in the levels dropping. The next two days passed, and my levels were still a bit high. I saw both my surgeon and endo before leaving the hospital, and we spoke about other treatments at this point, but obviously we were going to wait on the near future cortisol results before moving forward with anything else. Me and my family were pretty devastated at this point, but my parents were still being optimistic. Not able to understand how this “amazing” doctor was having a hard time curing me and why it has to be so complicated for me was beyond everyone at this point. Sent home with HC again, everyone was praying for a drop in the cortisol levels. My doctor had me get my blood taken that following Friday with STAT on it. I spent most of that day with anxiety attacks and tears, over the fact that I just didn’t know if I was cured or not. I was feeling pretty dizzy and sick to stomach…but didn’t really noticed that UNTIL…

I received a call later that day from my endo. She first asked me how I was feeling. I told her very anxious and pretty dizzy. She responded with “Good! Because your results came back and your cortisol is at 12.” My parents both jumped up (I was laying in their bed between them…yes, I felt that awful about everything going on) in shock and awe. I was shocked to hear good news for once. She said to continue the HC and that we will be doing follow up bloodwork in about a week. The next blood test approached, with prayers that it would be even lower or at least hopefully in a normal range. This time the levels were a LITTLE raised, to 18…so my doctor felt that at this time we can begin to taper the medication since my levels are indeed high, yet still in a normal range. At this point, we believed that I am in remission and on my way to recovery.

A week later, we went for the two week follow up with both the surgeon and endo. We were able to meet with both of them at the same time. Both doctors said that I am starting to look less cushing-oid, which was relieving to hear. My endo explained that because of the surgery, my Thyroid and Testosterone levels are also a bit low, and that I’d have to go on replacement until both levels are normalized. I figured that this follow up would only be to talk and go over a few things, with not any real results or new good news, but I was okay with that. Though, we did have an interesting conversation with the surgeon.

Dr. Post, the surgeon wanted to explain what was going on with this pathology report. He is known to be one of the top neurosurgeons in the country and has done thousands of pituitary surgeries. He said that I seem to be a very perplexed case of Cushings. From what he can see when he performed the surgery is that the abnormalities do NOT look like tumor cells, but that the pathologist insists that what they look like to them ARE tumor cells. Because of the confusion, he is having my pathology report results sent out to other surgeons and pathologist for further questioning. At this point, he feels that the abnormalities that he removed are indeed abnormal pituitary cells, or Hyperplasia, like he explained to me and my mother before performing the second surgery. From how it sounded to me and my parents, that treatment for Hyperplasia is pretty much the same and that if all of the abnormalities have been removed, then I should be cured. He did also say that during the second surgery, he removed a lot more abnormal cells than he did the first time. Knowing that I perplexed one of the best surgeons in the country, we all felt a bit confused and a little down about things. We spent the rest of the day in Manhattan and headed home trying to keep our chins up.

Well, today I think has been about 2 weeks from the follow up, and almost a month from surgery. I’d like to say that I am seeing changes with my face, but it’s really hard to tell, though everyone around me is saying that I look fantastic. I can’t seem to get rid of the awful bloat belly, though. I have been going to the gym with my cousin for a week or so now, since my body has been feeling ALOT Bbtter than it has the passed couple months.

Last week my endo was away for the week, and being that I have been feeling better, she decided to give me the week off from blood work, which was relieving. I finally received my Thyroid RX yesterday and began it today and will be getting the Testosterone tomorrow. I got a call from my endo today and she is having me get blood work for my cortisol this Thursday. I am praying everything is normal and that I can continue to ween off the HC even more. I’d also like to mention that I going to see a laser dermatologist tomorrow for a consultation to see what can be done about the hideous stretch marks that my legs are covered in.

So it seems at this point I still am not 100% positive that I am in remission and this Thursday’s results should give us a pretty definite idea. I think this just about covers everything you guys need to know about me and my journey and battle with Cushings. I’m sure there’s so much I left out, though I am sorry it’s such a long introduction. I do feel my story is quite unique, being that I basically diagnosed myself and caught the symptoms so quickly. Please, if anyone has any questions or anything they’d like to discuss, PLEASE feel free to post back. It looks me DAYS to finish this and about 6 drafts that I started over a month ago when I was going to introduce myself to you guys before my surgeries…just was never able to bring myself to finish.

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Genevieve (JenNYC), Undiagnosed Bio

1 Comment

to-do-diagnosis

 

I have many Cushings symptoms. I developed severe, often incapacitating IBS nearly 12 years ago and believed I had Crohn’s or Celiac Disease. All tests came back negative.

Around 5 years ago my symptoms got worse, and my normally thin to average weight shot up, despite normal diet and exercise. I became depressed, anxious, and had painful joints and flu-like symptoms. I also had irregular periods and skin problems (dry skin/eczema, acne, frequent brusing and skin infections and bug bites that never healed). My blood pressure at times was high and other times normal, my face would flush, and I had kidney infections and kidney stones.  My hair started to thin. The worst part was the weight gain- all in the face and stomach area; although my arms and legs were thin by stomach was bloated and very heavy.

I was told by several doctors to excerise and diet and have– nothing works. I had blood tests done and they found low ferritin, very low iron/Vitamin B/Vitamin D, alternating high and low blood pressure & thyroid. I was diagnosed with anxiety or fibromyaligia, depending what doctor I went to. I was told I did not have IBS, although I have diarrhea almsot daily.

I also have low muscle tone, poor energy, insomnia, chronic fatigue during the day, and wake up in night sweats.

The one test that was finally ordered for high cortisol (24 hour urine test) came back ‘normal’ range– so either it was a fluke or I really am crazy.

I don’t know what to do. Doctors, family and friends, tell me “just diet and exercise”–thinking weight gain is just a willpower issue– but what about all these other symptoms? I feel like I have flu every da y and miserable. My joints ache severly and although I have been working out, calorie counting, and doing Weight Watchers, and (alternately raw vegan and liquid diets) for months I don’t lose any weight and look 7 months pregnant.

I need advice.

Kristina, Undiagnosed Bio

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Hello everyone, My name is Kristina and i am 21 years old.I am so happy that i found this site because there are so little information about Cushing’s, especially real people stories. If not internet or tv i still wouldn’t know what is happening with me for a quite long time.

Hm i don’t know where to start, as a kid i always was very thin, and everything started changing when i was 11 or 12 years old i started to gain more and more weight, and after few years was diagnosed with hypothyroidism, i took medicine and lost my weight , but when i was 15 everything started changing again but much worse, i was always hyperactive, happy, enthusiastic, always got best grades and ect… i was always depressed, always asleep, feeling dizzy, everyday felt exhaustion, i even started missing schoool , didn’t even went where because i didn’t had energy to get up from bed and get dressed, and also with +66lbs i really didn’t wanted to show my face anywhere. And everyday everything get worse and worse, because of all this lack of energy and motivation i quit law studies, and then other studies, i don;t have energy to do simple house chores, my muscles always hurts, my head everyday hurts, i can’t sleep, i still get on weight every week almost, i have 800 kcal diet, and do some exercises, and weight still puts on… my hair is so ugly, my skin is very dry i got eczema that my skin doctor can’t cure, i broke my kneecap with very light impact i have many many other problems, and when i saw this on house md and mystery diagnosis i started my reseach on internet and library, i took very hard road that my endro would write prescriptions for all blood tests and MRT and now i am waiting for results and am very be anxious and have still many many questions.

I know that all cases are different but maybe someone could share, if after treatment or surgery, how hard is to loose weight, and not feel tired all the time? what to expect?

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