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MIranda (Miranda34), Steroid-Induced Cushing’s

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steroids

 

Hi,
I have only recently been diagnosed with Cushing’s syndrome,and it is due to the mediciine i take for asthma.ilast year i kept collapsing in the street and iwas suffering from low blood-pressure and hypoglycemia.

 

I live in france where this illness is practically unheard of. I am on two different medications to treat my illness but have gained a lot of weight,have a ‘camel’s hump’,edema on my legs and feet as well as having a ‘moon-shaped face”. I am British-American and would love to hear other people’s stories of living with this disease.

 

I am exhausted all the time,depressed,can’t concentrate on anything…i have trouble leaving the house because i get dizzy and people stare at me and judge me because i am obese.

 

I came to this website to hear other people’s stories and to feel less alone because Cushing’s syndrome is a nightmare.

Take care!

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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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Sharon, Undiagnosed Bio

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A Golden Oldie

Hello. My name is Sharon. Im 42 years old from Saskatchewan, Canada. I’ve been lurking on this site for about 3 weeks now, and finally decided to add my story. I appologize now if  I get carried away, but here goes.

As a youngster, I was always a healthy kid, seldom sick. Always active, very athletic. Sports were my life. But I did always have very heavy periods, and painful ones, right from day 1. Doctor said it was Mother Nature, and was told to live with it.

Got married, had 2 children. In between the 2, I had to have my gallbladder removed, unfortunatly it was an unsuccessful surjury. I still get attacks till this day. A hernia operation, 3 months later, a hysterectomy. (due to endemetriosis) a year later, the removal of one of my ovaries. I must admit I never felt right after the hysterectomy, but chalked it up to being in early menopause.

Then a year ago, my husband had to rush me to the ER. My heart was palpatating so fast I could feel it in my ears. A second visit to the ER for more of the same. The Doctor on that visit seemed annoyed, and said, get your thyroid checked. I thought, why not. I’d been suffering from freezing cold hands and feet anyways. Tests came back normal, and after a holter test, they told me my heart had an electrical problem. I was put on pills to regulate it.

At this time, the weight gain started to elevate. Being thin my whole life, I was startled by this. I’ve always eaten healthy. We are not an eat out type of family, I prefer to cook at home. But I decided to become more strict with what I ate. I always walked for excercise, now I added a half hour of core workouts and a half hour of abdominal workouts, 6 days a week. Plus my daughter, who was a health coach at Herbal Majic, put me on a plan.(minus the herbs, just the menu) Weight loss after 2 months was zero. She said, Mom, this plan works, why is it not working for you? Good question.

Im also into alternative methods to maintaining health as well. I purchased a chi machine and far infrared hothouse. While it has helped with my constipation issues and seems to have kept the gallbladder attacks away, it had done nothing to help aid in weight loss. (my friends and family however, have all lost weight in it)

Then more puzzling symptoms appeared. Always covered in bruises, major hair loss. Feeling very tired. And it showed in my face, because I have countless people who tell me I look tired. Yellow eyes from time to time. (could be from the gallbladder issues) This went on for a year . And in that year, I gained 25 lbs, 5 of that was literally overnight. .

Then 2 months ago, my heart medication stopped working. The palpitations are back, as well as a very low heart rate at times. And a shift from freezing cold hands and feet, to not being able to tolerate being hot. Noticed facial hair, my normally straight hair if full of waves and curls. Wake up drenched in sweat (chalked that up to menopause too) While I have maintained my weight at 142 lbs (115-120 lbs is my norm) my belly continues to grow. If it wasn’t for the hysterectomy, I’d swear I was 6 months pregnant. Then I developed a burning pain in my right shoulder. The pain is always there, makes it hard to use my arm at times. Some days its severe, at times during the day, the pain is tolerable. I thought maybe I dislocated something excercising. After a bath I decided to have a look in the mirror, and discovered a hump on my back I never knew I had. I think the hump and shoulder pain are related. I lay on a far infrared heating pad for the pain and it helps. Pain medication does nothing for it.

But not only is my belly growing larger, I noticed my face and neck growing larger as well. And my once smooth skin has turned rough, and red. Acne breakouts that leave scars and even a couple of skin tags on my face. This is all new to me. After careful examination of my neck, I realized I had a few lumps on the right side, and a fatty pad under my right collarbone. And when I press on that fatty pad, I feel the pain in my shoulder. Im exhausted most days now, from the pain, and not sleeping through the night for the past 2 months. I get up 2 to 3 times a night to pee. The other day I noticed that my pee had a really foul odor.(sorry for the TMI)  But it never burns.

Well, the final straw was a rash that appeared on my back. Even though I had a Doctors appointment in a week, I decided to go to the ER as the rash had me freaked out. I made the mistake of telling the nurse I thought I might have cushings. (had been reading the patient bios. It all seemed to add up) She smirked, and took me to another room. The Doctor came in and in a condecending tone, asked me,”what does google have to say about cushings” I should have told him that I leaned more from actual patients who had been diagnosed than I did from google. But we ran through my symptoms. He assured me he thought I didn’t have it. It was probably all menopause. He asked to see my drivers license and told me he thought I looked no different. I asked him if he could feel the lumps in my neck, he said no. (at this point I knew I was wasting my time)

He asked if I had used a heating pad, I lied and told him No.(Because he ticked me off) That may have been my saving grace. He called in another Doctor to have a look at this rash and neither one could figure it out, so he ordered alot of blood work. (odd though, i’d been using this same heating pad for years, and never developed a rash until now) They took blood sugar (a little high) urine, shoulder x ray. I was told to follow up with my Doctor. A week later my Doctor informs me that my blood sugar  in the ER that day was very high. And a large amount of sugar in my urine. He never said a word to me about my urine that day. She told me that one of the blood tests that came back showed abnormal for lupus.

Although she feels I am neither diabetic, or have lupus, it lets her know that there is something definatly not right. But the affirmation I got was from my Doctor who took one look at me and told me I did in fact look different. She could see the lumps without actually touching them. I guess Im not crazy after all.

She set me up with a specialist who told me flat out that he did not think I have cushings, because he sees the worst of the worst. I then showed him a picture of what I normally look like, and took a pause. Well, he’s looking into plenty of things, he has included cushings after all. And assured me if the tests come back normal, we will retest, and retest. Im also scheduled to have a thyoid ultasound in April. I feel like there is now hope that we might find an answer to all of this.

I went from being a shy person, to someone who is outspoken. I felt I needed to be, because I wasn’t being heard. Im angry at being dismissed over the years, and to the Doctor in the ER, i know i must have bruised his ego by telling him what I felt was wrong with me. Although I have alot of things wrong with me, there was nothing wrong with my hearing that day, when I over heard the Doctor and Nurse making fun of me.

I feel for each and everyone of you who’s stories I have read the past 3 weeks, who have had to endure way worse hardships than myself. I read how often you are mistreated by Doctors, and the horrible situations that you have gone through.

It breaks my heart. But each of those stories have given me the courage to fight for myself and for that, I can’t thank you enough, for being so open in sharing your lives with us.

God Bless You All!

Update May 18, 2012

Since my last post, there has been some developements, I’ve had a thyroid ultrasound and cat scan on my neck. They discovered 3 thyroid nodules the size of a pea. My Internist says that it does not explain my symptoms. An incidental finding was arthritis and disc degeneration in my neck. I am also newly diagnosed as active hypoglycemic.

Another 8 lb weight gain in 2 weeks. During those 2 weeks I lost my appetite and got the flu twice in 1 week. I barely ate enough to stay alive in those 2 weeks and still gained weight. My Internist told me he is at a loss. The swelling in my neck is now on my left side as well, and a chunk of thigh muscle in my left leg has all but disappeared. I ended up spending Mother’s Day in the ER. I woke up that morning with a burning pain in my chest and was so dizzy I couldn’t walk a straight line. Stayed dizzy for the next 5 hours. The heart checked out fine. The ER Doctor listened to my history and wished me luck, he had no idea either. I have had 3 Doctors tell me that if it is cushings, “do you know how hard that is to diagnose?” Meaning it’s to hard for them to figure it out, so they won’t bother. My Internist who tested me for cushings took a blood test, and told me that the 24 hour urine test, is old school. We don’t test for it that way anymore. Just a blood test. Of course mine came back normal. All my tests seem to be coming back normal, however I decided to document my findings as NO ONE believes me, except my Primary Doctor. But she knows nothing about cushings, she just sees the physical changes in me. I video taped the yellowing of my eyes, took pictures of my expanding belly, the hump on my back, the loss of muscle in my leg. And these strange muscle twitches that are happening throughout my body. The only thing my Doctor can do for me is to refer me to an Endo, which she is now doing.

My husband grows increasingly frustrated, and has told me that, you’ll be dead before they find out what’s wrong with you. I feel the same way. Knowing my Birth Mother died when she was 49 years old from a massive heart attack, but had the same physical symptoms as me, is scary. I am almost too tired to fight anymore but my Husband and kids keep me going. It’s been a battle, and I am far from winning yet. Will keep you posted.

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Lisa (sagrae), Undiagnosed Bio

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Im a mother of 4 use to work full time till I got to sick and very tired.  Not sure what I have been to alot of drs. My tish flucuates my t4 is always in low range of normal, my cortisol tends to be very low in am and through the day. Ive done saliva test blood tests and urine tests. Im either boarderline or below and its been almost 2 years, 2 surgeries and alot of stress and financial hardship to my family. I had sleep apnea surgery first, then my ovaries removed (that proved the pcos i knew i had). Ive now been told I have reactive hypoglycemia. Been put on many different anti depressants to control my moods, since I never know from one minute to the next how I will be.

saliva test   reference range

1.6               7.0-10.0

1.9               3.0-6.0

.9                  2.0-4.0

.9                  <1.5

serum cortisol tested 1 month later

.6                 4.0-22.0

free testo

3                  2-45

 

t4 tested 1 year ago

5.0               4.7-13.3

t4 tested 2 weeks ago

1.11            0.8-1.8

tsh tested 3months ago

1.94            .40-4.50

tsh tested 1 year ago

4.14             .35-4.94

my acth test

20                6-50

lh test

58                10-54.7  keep in mind ive had a total hysterectomy 6 months ago

 

Im wondering how a dr can figure out what is wrong with me if everything flucuates all the time, and im wondering what is wrong with me? please anybody out there please shed some light on what this could be . Theres days i really feel out of my mind. Current medications started 3 months ago lithium 900 welbutrin 150 estradial 1mg provera 5mg

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