My Journey

It’s hard to say when my exact “journey” began with what we now know is Cushing’s Disease.  Both my Mom and my doctor believe I’ve had this for years, when I started having period problems, migraines and unexplained weight gain in high school.

I can safely say that I started really noticing/documenting this last round of health issues in the spring of 2007.  I can remember my first doctor’s visit regarding the onset of this in spring 2006, but the majority of my health issues really began a year later.  I’d always suffered from migraines, but only around my menstrual periods.  I took birth control to help with that, and it also helped regulate my periods for the majority of my adolescent and young adult life.  In Spring 2007, however, I started experiencing cluster migraines that were debilitating, blinding and just absolutely horrible.  I don’t usually have a primary care physician because I’m, for the most part, a really healthy girl.  But I started seeing a doctor to pinpoint the cause of the migraine headaches.  I had a CT scan which came back negative for any problems.  I tried different abortive medications to treat the migraines when I had them (Imitrex) and also preventive medications (Topamax) but nothing helped.  I’m not a big fan of popping pills and insisted that I find the cause of the migraines, rather than just masking them with an expensive, non-generic daily pill.  I cut back on caffeine, avoided certain trigger foods, changed the lighting in my house and in my office, had my eyes checked and even experimented with different birth control options, since estrogen can be a huge trigger for migraines in women.  Those lifestyle changes helped a little, but I was still having them.

The second (and biggest) indicator that something was seriously wrong was the extreme amount of weight gain.  I packed on 40+ pounds in less than eight months for absolutely no reason at all.  I’ve always been a health nut and getting me to eat fruits and veggies has never been a problem.  I also don’t abhor exercise.  I stay pretty active for the most part, so it wasn’t food addiction or laziness that was causing the weight gain.  I’ve always been a thick girl, but obesity was never a problem.   It was never easy for me to lose a lot of weight, but it was possible.  I’d go through “bouts” of weight gain and had been doing that since high school.  The first time I noticed it was between the summer before my senior year of high school up to graduation.  I packed on about 60 pounds.  We all blamed it on the stress surrounding my parents’ divorce at that time.  I lost some of it, but not all of it, in college.  My junior year of college I once again ballooned up for really no reason.  Still eating healthy, still working out.  I tried some different weight loss programs and lost a little bit, but again, not all.  My weight went back down to “thick” girl status rather than “fat” girl status until this last year, when once again, I packed on a hefty amount of weight.  I once again started trying to combat the weight gain, but it seemed no matter what I did, I only seemed to gain weight.  I tried Weight Watchers and gained 17 pounds!   Talk about frustrating.   I researched different diets and causes for abdominal weight gain, which is where I noticed most of the weight was accumulating.  Insulin resistance was my first self-diagnosis, so I tried the South Beach Diet with decent success.  I was able to lose a total of 15 pounds before my body stalled completely, which appeared to be the norm every time I tried to lose weight.

Period problems were also very indicative of some other problem.  My primary care physician never seemed too concerned.  His answer was for me to “Eat less and exercise more.”  Why, thank you, kind sir!  He never once tested me for hyperthyroidism (even though my brother had thyroid cancer and my mother had her thyroid removed) or diabetes (even though it runs rampant on both sides of my family).  My OB/GYN was much more proactive, though, and worked with me as much as possible.  We tried different birth control pills, but even the lowest-dose estrogen seemed to trigger migraines.  Since I wasn’t in a relationship, we tried the cold-turkey no-birth control method and my migraines went away for a month.  But then the non-stop menstrual periods began.  From June through August, I had my period every single day.  He tested my ovaries and tested for polycystic ovarian syndrome (PCOS).  He determined I did not have PCOS, but in order to stop the bleeding, we decided to use the IUD Mirena.  He highly suggested I see an endocrinologist, though, because something was obviously not right.

I had several other seemingly unrelated health issues during this two-year period, too.  For one, I had an ankle problem that my orthopedic doctor couldn’t figure out.  I really wanted to train for the 1/2 marathon, but found that I could only make it 2 miles before my ankle completely gave out on me.  I figured it was an ankle sprain or hairline fracture, but it wasn’t.  My doctor was at a loss, gave me a cortisone shot, put me in a boot and treated me for tendonitis, even though he couldn’t figure out the exact problem.

I also went through severe bouts of depression and I’m usually a pretty positive gal.  And when I say severe bouts of depression, I mean it.  It was horrible.  Crying spells, mood swings, lethargy, suicidal thoughts, mean thoughts about myself.  One minute I was high, the next minute I was low as I could go.  I’m normally a very social person, but I found myself hiding out in my apartment with my cat, unwilling to go anywhere or do anything.  I blamed it on other issues (bad relationships ending, bad living situations) and sought help, but it was still a nagging problem.

So was fatigue.  I was (and still am) tired ALL of the time.  It doesn’t matter how much sleep I get, I’m always tired.  I need naps constantly and it’s all I can do to make it through my entire day at work sometimes.  I found myself falling asleep at the drop of a hat and most of the time just feeling like a train had hit me.  It was very bizarre, especially considering I’m a “sleep Nazi” and always make sure to get the recommended 8 hours of sleep.

Perhaps the grossest (and most annoying) issue was hair growth.  It came out of nowhere.  Chin hairs, cheek hairs, sideburns.  It was like I was growing a beard.  My eyebrows became bushier and I began growing a mustache.  I even found nipple hairs – talk about disgusting.  I’m a chronic tweezer/plucker, so you can only imagine how much fun it is tweezing several times a day trying to get the hair growth under control.  No amount of waxing or plucking makes it go away.  It just seems to get worse.  Let’s not even talk about hairy arms!

Other things I noticed were stretch marks all over my body (especially on my stomach, sides and upper arms).  I developed them on my breasts.  I started accumulating fat on my back, which disgusted me…and I noticed I had this “knot” (what we now know is a symptom called a “buffalo hump”) in between my shoulder blades.  When I would get massages, I’d ask them to work on the knot, but there wasn’t a knot, even though I felt constant tension.  The “knot” has became worse over several months, getting bigger and bigger.  I felt deformed and absolutely ugly.  Acne became a severe problem again like it was for me in high school, and I noticed that small things like bug bites took weeks to heal.  I bruised easily, too.  If I gave blood, for example, the bruise would take at least two weeks to go away.  Bug bites take even longer to heal.  And I scar, too, leaving dark spots where those wounds once were.  My blood pressure steadily began increasing, even though I’ve always had perfect blood pressure.  My face became fatter and fatter.  I noticed in pictures from Spring 2007 to more recent pictures a huge difference in my overall body shape and facial shape.

I knew something was up – but I had to convince a doctor of it first.

I had to endure more tests from my quack of a primary care physician in order to see an endocrinologist. He did more “bloodwork” and then determined that I was normal and everything was fine.  I told him that I absolutely was not fine and wanted to see an endocrinologist immediately.  My mother and brother had both started seeing a younger endocrinologist at the Vanderbilt Eskind Diabetes Clinic in Nashville and spoke highly of her.  In fact, my Mom mentioned some of my problems to this woman, Dr. Kathryn Dahir, and she suggested that I make an appointment to see her.  So I did.

My first appointment with her was on September 18th.  She initially diagnosed me with PCOS, even though my OB/GYN had ruled it out, saying that I had the classic symptoms and we needed to treat it from a clinical standpoint.  She put me on Metformin, but wanted to still perform bloodwork and check everything else out to be sure she didn’t miss anything.  That’s the first time she thew out Cushing’s Syndrome, saying it was pretty rare and chances are I didn’t have it, but she didn’t want to miss it, either.  She rattled off several other things she was going to screen as well.  I did bloodwork that day, a glucose intolerance test the next day, and a 24-hour urine collection that weekend.

By the following Wednesday, she was calling me at work with the results.  My thyroid was fine and I didn’t have diabetes, so that was extremely good news as I was really concerned about both of those.  My urine collection, however, was the reason she was calling.  They use that to test for cortisol, and in “normal” tests, the range is 10-20 mcg/liter, with 50 being the range when they start to get concerned.  My cortisol level was 75.6, for a total sample of 208.  So nearly quadruple what it should have been.  She told me over the phone that meant I had Cushing’s Syndrome, and now we had to figure out why.  One of my best friends, Carolyn, had diagnosed me with Cushing’s via WebMD several months before, in an effort to lighten the mood when I was having a pity party/meltdown on her sofa.  And now I really did have it.  Unbelievable.

I researched it left and right and was amazed to realize that all these seemingly unrelated symptoms could all be tied to one culprit.  It was relieving but really overwhelming.  The following weeks were a blur of bloodwork and other tests to determine what the root cause of my Cushing’s Syndrome was.  I did a CRH stimulation test, which was ultimately the wrong test.  I didn’t need any more cortisol – hello!  They tested my ACTH levels, did another 24-hour urine collection and a dexamethasone suppression test.  All of my tests kept coming back with high cortisol levels.  The low-dose dexamethasone suppression test was the last test I did.  My adrenal glands didn’t suppress the cortisol, which pinpointed a pituitary problem…in other words, Cushing’s Disease.

An MRI performed on October 27th, 2008, confirmed that there was indeed a problem with my pituitary gland.  It couldn’t show a clear picture of my pituitary gland, but did show several abnormalities.  Sometimes even one or two bad cells can throw your body into absolute distress.  Dr. Dahir referred me to another endocrinologist on staff at the Vanderbilt Pituitary Clinic, Dr. Vipul Lakhani.

I met with Dr. Lakhani on November 5th at Vanderbilt and was really impressed.  We discussed my medical history in detail and he reviewed all of the tests that Dr. Dahir had run and confirmed my Cushing’s Disease diagnosis. He showed me my MRI and all the possible problem areas, and explained the IPSS procedure and why that was necessary.  He was very nice and his bedside manner was great.  He was also very honest and discussed all of the realities of this disease with me openly and honestly.  There is no cure for this.  I can only hope for remission.  I’ll be on replacement hormones for a year and a half if all goes extremely well, but after discussing the chances of success, the realist in me knows that I’ll probably be on them for the rest of my life.  To quote Dr. Lakhani, “We’re in this for life, my friend – I hope you like me!”

Vanderbilt called me on the way back from the appointment with Dr. Lakhani and already had the IPSS procedure scheduled for November 17th.  It’s a pretty invasive procedure and I was fairly nervous about it, but willing to do whatever it takes.  The test determines with 100% certainty the existence of pituitary disease.  If, worst case scenario, my pituitary checked out fine, this test would them know it’s a tumor elsewhere in my body (malignant) and it’s a whole ‘nother ballgame.

The IPSS procedure at Vandy went fine, except that they discovered I don’t have a jugular vein on my right side.  So they couldn’t get an adequate blood sample from my right side.  Had they been able to, they would have been able to determine which side of my pituitary gland is the problem.  But alas, I’m an anatomical wonder, and my lovely inherited veins prevented them from being able to do that.  In any case, they still confirmed it is my pituitary gland giving me all of this grief, so now I’m on my way to surgery.

I met with Dr. George Allen the day before Thanksgiving and was booked for surgery on December 16th, 2008.  They had to delay the surgery a week, so my actual surgery happened on December 23, 2008.  So, from my first meeting with Dr. Dahir to the day of my surgery was exactly three months.  Talk about quick!  I am SO very thankful and blessed.

Dr. Allen explained the major complications, which are scary on their face, but I’m wasn’t too worried.  He’s performed 1900 surgeries over the life of his career and approximately 500 have been related to the type of tumor I had.  I was (and still am) in expert hands.  He approached the tumor conservatively.  Because of my age and gender, he didn’t want to do anything radical and permanently disable my pituitary function if he could help it.  He explained that I will probably be infertile after this operation and that is the most major consequence for women with this surgery.  Especially those of us in our childbearing years.  I do want to be a mom, perhaps more than anything else, but even that reality was still not enough to make me rethink surgery.  I’d rather be healthy…and cross the baby bridge when I get there one day.

I battled steroid withdrawal for the first few months post-surgery, and that was my biggest complication from the surgery.  Many of my symptoms were similar to those of Addison’s Disease, but my adrenal glands were functioning. It’s just that my pituitary gland was not functioning properly enough to stimulate them to produce cortisol.  I developed many rare complications after my surgery and I literally had to take it one day at a time.

The scariest complication related to my steroid withdrawal was the development of a pseudotumor.  Over the course of a few days, I started noticing visual disturbances. I found it hard to park in a parking garage, unable to gauge how much distance I had between other cars so I wouldn’t hit them. My eyes seemed to cross all of the time, and my computer screen was blurry.  On a shopping trip with my then-roommate, I ran into displays at stores, and smacked into the end-caps at a department store.  I’d thought I’d given myself enough distance to clear them, but I had not.  Finally, after watching a movie and seeing multiple Harry Potters on the screen when there was only one, my roommate encouraged me to go get my eyes checked.  Something was wrong.

It turned out that my optical nerve was swollen, but why my ophthalmologist couldn’t be certain.  When I mentioned I’d had brain surgery a few weeks ago, she panicked a bit, because it could have been a complication.  After talking with my doctors, they didn’t seem overly concerned so she sent me home to rest.  I woke up, though, to frantic phone calls from my doctors.  I guess upon further review, they realized that this could be a serious complication and wanted me to come to the emergency room immediately.   It could be bleeding on the brain (no bueno!) or another tumor on my brain that they had missed while concentrating on my pituitary tumor.  They just didn’t know.  Needless to say I was terrified.  After running through a gamult of tests, though, they determined that I’d developed a pseudotumor in my brain and that the increased spinal fluid on my brain was putting pressure on my optical nerve and causing the vision problems.  They gave me a spinal tap (and yes, I quoted lines from Spinal Tap while my neurosurgeon performed the procedure) and all was well.

Apparently that’s a rare (drum roll, please) complication of pituitary surgery, but of course it happened to me.  After that I began to mend, because my steroid dosage was finally right.   I felt good for a couple more months until it all came crashing down again.  I was out with my roommate at a bar and having a great time when my stomach started hurting.  At first it felt like gas, or maybe like I had to go to the bathroom, but that didn’t seem to relieve the pain.  My roommate noticed that I didn’t look right, so she suggested that we go home.  By the time we pulled into the house ten minutes later, I was vomiting uncontrollably and in dreadful pain.  My entire body hurt.  I couldn’t lay on my back or my stomach.  A heating pad didn’t work, and I continued to vomit uncontrollably.   I didn’t know what was going on.  I called the on-call endocrinologist, who suggested I go to the E.R. if I felt like something was wrong, and after Googling adrenal crisises, I was sure that was what was wrong.  I’d heard that they could happen, and that they were sudden and horrible things.

My mother came and took me to the hospital, and though I told them I was having an adrenal crisis and needed a stress dose of hydrocortisone, they still made me wait in the waiting room for hours.  I laid on the emergency room floor and vomited into a Wal-mart bag.  Anyone who knows me knows I wouldn’t be the type to lay on a dirty emergency room floor to vomit, so I must have been in severe pain and completely out of sorts.  Others waiting in the ER with me offered to let me go first because I was much sicker than they.   Finally, the E.R. staff put me on a gurney in a hallway, but not in a room.  My  mother was livid.  We kept telling them that I needed a stress dose to no avail.  No one would listen.  Finally, after my mother rattled everyone’s cages and threatened legal intervention if I died from this (which was a very real possibility at this point), I received treatment.   I told the E.R. doctor that I had Cushing’s Disease, was having an adrenal crisis, and  needed a stress dose.  He finally confirmed that with my endrocrinologist, who was appalled that they had made me wait to get that.  I could have died.

As soon as they gave it to me, I felt better.  My body unseized, and a wave of calm washed over me.  And then pain…excruciating pain.  Because my body had been so stressed, it had thrown three kidney stones.  Great.  I had an unsuccessful surgery to remove them, since my kidneys are both too small to pass them and too small for surgical instruments to retrieve them.  So I had to walk around with a stint for a month so my kidneys would stretch enough for yet another surgery.  Kidney stones are horrid, horrible creatures and I wouldn’t wish them on my worst enemy.

Finally, though, I began to get a little better.  At two years post-op, I’d only lost 20 pounds, but the acne was gone, and the extra hair growth started.   The “moon face” went away, and the stretch marks lightened.  The buffalo hump never completely went away, but it did shrink a little. So I experienced SOME relief.  But it was temporary.

I never felt “normal” even after my first pituitary surgery.  Something inside of me kept saying it wasn’t gone.  Earl wasn’t completely dead.  And slowly but surely I started presenting with clinical symptoms of Cushing’s again.  Headaches, hair growth, weight going up, blood pressure going up, and the crazy, horrible mood disturbances.  I started the testing process again, and I’d get inconclusive results.  Sometimes it’d be abnormal, but then a follow-up test would be normal.  It was way too emotional for me to handle, because I just wanted this to be over.

So I started searching, and my search led me to Swedish Pituitary in Seattle.  Many Cushies have experienced success with their program, so I reached out to them.  I emailed the doctor, who scheduled a phone interview and talked candidly with me about my experience with Cushing’s, and my life since pituitary surgery.  After five minutes, he felt pretty certain that I was in the middle of a recurrence, maybe even simply just not cured the first time, and wanted to see me in clinic.  My best friend and I flew out to Seattle and went through Camp Cushie (I say she went through it with me because she did, even if she didn’t actually do the testing), which is an intensive five-day workup of blood cortisol levels, urine cortisol levels, adrenal function, ACTH levels, etc.  It’s exhausting, but more often than not, it catches your body behaving badly. And in this case, it worked for me.  I got several high blood cortisol levels, several high ACTH levels, and I did not suppress cortisol on the high dose dexamethasone test.  Simply put, I still had Cushing’s, just like I’d known all along.

I scheduled surgery and had my second pituitary surgery in Seattle on August 29th, 2011.  Where my first surgery had been very conservative (meaning they didn’t touch my pituitary gland at all), the second surgery was very aggressive. The neurosurgeon took out 80% of my gland, and scraped around the area around my pituitary gland, hoping to get any hyperplasia or bad cells that were causing Cushing’s.   Whatever he did worked, because two hours post surgery I crashed, meaning that my cortisol levels dropped to what would normally be detrimental levels.  They have to do to that – make your body crash off of the high steroid it’s so used to having, and then they start giving you synthetic steroid.  It’s a very controlled, regimented process.

Crashing really does suck, though.  You feel like you’re dying.  And now that I’m dependent on synthetic steroid since my body no longer makes it naturally, it’s a very fine dance.  It is a very hard recovery, and your body has to relearn everything without the existence of your pituitary gland, but unfortunately Cushing’s calls for radical measures to be taken in order to be healed.  I still do not have any pituitary function, and I take replacement steroid, thyroid, growth hormone, estrogen and progesterone.  I will also start taking replacement testosterone to correct my nonexistent sex drive.

I consider myself VERY lucky for several reasons.  One, I found two great endocrinologists that listened to me and attacked this with a tenacity that is unfortunately not employed by several other doctors.  So many other Cushing’s sufferers have not been nearly as lucky as me.  Second, Vanderbilt Pituitary is the third largest center in the nation for these types of disorders, and it’s in my backyard.  I don’t have to travel thousands of miles to find a specialist – they’re right here in my hometown.  I did end up going to Seattle for Dr. Ludlam, but even then it was well worth the time and the cost.  My family and friends are here in Nashville, so my support network is strong.  And while I’m not sure how long I’ve had this, I feel pretty certain that we caught this in at least a somewhat early stage. I have youth on my side – at least that’s what the doctors keep saying.

It’s hard not to worry, and where I was was once steadfast that that God had control of this entire situation, I can now honestly say I’m weary.   I know this entire experience will be used somehow to help others – and maybe it already has – but I won’t lie.  I’m frustrated.  I tell myself that if my experience can help out one other person, it’s totally worth it to me.  Because it is.  I just have to remind myself of that in my “down” moments.  Some of us have to suffer in order for others to benefit.  I try to remain positive but lately I’ve had more negative moments than positive.  I’m only human.

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40 thoughts on “My Journey

  1. Thank you for sharing your story!! I am being tested for Cushing’s, or will be next week when I see my endocrinologist.

    I, too, have been experiencing similar problems for a couple of years, but doctors basically just kept telling me to “eat less and exercise more” though that has never been my problem (until recently…I am so extremely tired now that I haven’t worked out in over a month). For me, everything started with migraines which I still get on occassion. Then I gained about 30 lbs in 2 months, and slowly kept adding on the weight, despite leading an active lifestyle. NExt, I develped skin problems – eczema, and oddly, I kept getting ringworm infections…which I have since learned is an opportunistic infection that can plague people with cushing’s. Then I started sweating a lot and almost all the time. I get hot flashes like I’m in menopause (I’m 29!). I started feeling depressed and very, very tired recently but I’ve been battling insomnia for the past few months. I absolutely can’t fall asleep past 4am, and then I only sleep for a couple of hours at a time. I wake up to drink (I’m always thirsty), to pee (I pee a lot), or because I’m so sweaty. It’s a terrible, insufferable cycle. I, too, have developed a buffalo hump on the back of my neck.

    My PCP ran some more bloodwork to check my cholesterol levels (they have been moderately high for months, though I am vegan…I don’t eat cholesterol!!) and decided to also check my cortisol levels. They came back a little high, which is when she started talking about Cushing’s and referred me to an endocrinologist.

    As much as I don’t want to be sick…I am. If it’s not Cushing’s, it’s SOMETHING, and I want relief from my symptoms. I can’t contunue living life in this state. I am miserable! 🙂

    1. Hi Linda,
      I know this is a really old post, I just wondered how you are getting on?
      I am 29 and thought I was going through early menopause due to the hot sweats etc. I got signed off from work with anxiety and depression. That was 14 months ago. In June of this year I was diagnosed with Cushing’s Syndrome. In September I had my right adrenal gland removed as it had a tumor growing on it which was causing the over production of cortisol. (I lost 20lbs in 8 weeks following surgery without even exercising). I am returning to work very gradually starting next month.

      I am still struggling with sleep and absolutely cannot sleep past 4am. Did you ever resolve this?
      How are you doing now? Did you ever get a diagnosis?

      Kind Regards

      Jane

      1. I hope you’re health continues to improve. Where did you have your surgery? How long did it take for Cushing’s symptoms disappear? I’m very interested in your case, as it’s very similar to my 18yo granddaughters.

    2. Was it Cushings? I have the same symptoms, especially the hot flashes and night sweats. I can’t seem to control my body temperature at all. I get so thirsty in the middle of the night and from the time I lay down to get up I sometimes consume 32oz water. I “sleep” absolutely awful and average about 5 hours of interrupted sleep between sweating spells and bathroom trips. Whatever I have (which I’m almost certain is Cushings) leaves me constantly fatigued as is and then no sleep on top is salt in the wound.

  2. I feel like were are twins. Everything you wrote about minus the kidney stones happened to me. I was diagnosed May 2009 and had the transphenoidal surgery June 2009. I have lost 65 pounds and continue to struggle with the belly fat and arm fat; it’s the last to go. I had a cortisol of 524 at checkin and at checkout it was 1.8. I also went into adrenal crisis and like you no one listened to me before being diagnosed with Cushing’s Disease or during my Adrenal Crisis. As a patient and as a nurse this journey taught me two things. Advocate for yourself and Listen to the Patients!!! Good luck to you. Sincerely, Fellow Cushie.

  3. Thanks for sharing. I’m in the middle of trying to find out if this is what’s causing all of my problems. I know I have hashimoto too, but not a treatable level

    1. Me too. I know I have cushings syndrome even though my blood tests came back negative . I don’t look anything like I used to look. I can’t look in mirrors I get too upset . I feel vile and people look at me all the time . I don’t think I can be cured . I think it all started about 10 years ago . I’ve got bigger and bigger. I’m trying to live a bit of a life .

  4. Thanks so much allowing us to join you on your journey!!! I was diagnosed with Cushings in August2011…had pituitary surgery Nov28 at National Institute of Health in MD. Its a wild journey, this disease, one that tests limits…whispered a prayer for you tonight for strength, some fun, and peace…
    Hang in there, sister!

  5. Thank-you for writing this blog; I have been diagnosed with Cushing’s almost ten years after first developing signs of it during high school. I’ve been recommended to have transphenoidal surgery, but have been unable to get on any insurance plan that will cover it. Meanwhile, my body is getting weaker, and I am getting more frustrated. Your perseverance is inspiring. Best wishes.

    1. Susan – anxiety can be related to Cushing’s. It is common to many ailments though so if you believe you have Cushing’s, you may need to go to a doctor armed with more evidence. With my experience, doctors were more than willing to treat each symptom individually but didn’t look for the cause. Be careful to not get dismissed with only anxiety if you believe it is linked to something worse, like Cushing’s. I have a prescription now for an anxiety pill when I get too overwhelmed/upset, especially now that my adrenal glands do not work post-surgery. Pay close attention to your body ALWAYS.

    2. Hi, I have panic disorder and anxiety for 5 years before I got a formal diagnosis. I’m in hospital now awaiting surgery and reading about cushings

  6. Hi there! I am being tested for Cushings and have been with this issue for almost 4 years already. As I was reading your story I read that the surgery causes women to become infertile. Why is that? Through all of my research this is the first time I have read this and now I’m stressed out about it. I’d like to hear more information because I feel a bit alone during this time. You can email me at Hayley7363@gmail.com. Any of you on this thread can. Thanks. 🙂

    1. Hey, Hayley. The infertility issue happens usually after the second surgery, when the pitutary is removed. Pituitary damage of any sort can cause what’s left of the pituitary to stop working, so the hormones necessary for ovulation and eventually, pregnancy, are not secreted by the pituitary. Your ovaries may be fine, but without expensive FSH injections, they will not ovulate so that you can become pregnant. It is possible to get pregnant, but it’s not easy.

  7. Wow thanks for sharing your story. My gyn thinks I have PCOS but nothing we do seems to be working to alleviate my symptoms. So I am going to see if my primary care doctor will help me do some tests and get me a referral to an endocronolgist. I have been reading up on Cushing and while I am unsure if that is what I have or not. Reading you story I was able to identify several similiarties. I hope your are doing well and I wish you the best of luck. Thank you again for sharing your story. Knowledge is empowerment.

  8. Hi,
    Thank you for sharing your story. I’ve just been diagnosed with Cushings Disease, 5 days ago. I’m waiting for the hospital to call to do the MRI and whatever comes next. My cortisol was 10 times the upper limit. I have had the symptoms for a long time, and many misdiagnoses. I’ve actually got thin, down to 44 kg, and couldn’t gain weight. Some of the sites do say that weight loss is a symptom, as well as weight gain. Have the horrible nights, the peeing, the thirst, the sweats, extreme fatigue, migraines, lost my muscles in my legs and arms, can’t concentrate, have depression, anxiety, spots, hair loss, blurred vision. I didn’t get the red face or hump, I don’t know why. But for a thin person, my face does feel puffy in my cheeks, to me. I’ve only grown extra hair on the back of my neck. I’ve had this feeling all year that I was dying. I didn’t tell anyone before this week though. They thought I was perimenopausal, early, but it wasn’t. Paid a specialist to find that out :-p Then they said to go on a diet to gain weight, protein mainly. Cushings means your body doesn’t absorb protein, so naturally I lost weight on that. I stopped after 2 weeks.
    I’m a fair bit scared after reading the other stories, I didn’t realise it could be permanent, or damage things permanently. But I’m afraid I’ve had it for a long time, which might mean it’s more likely to have long term impact. The frustrating thing is, in October, I rang my specialist and asked if it was my pituitary. He sent a letter to my GP doc, to have cortisol tested. They never mentioned it nor did it. And I’d known! I looked up my symptoms, and it came up. It’s cold comfort to be proved right, especially after 7 months more of pain and misery. But I am going to express my disapproval about it to the GPs. I’ve been having symptoms since 2009, and have had barrages of blood tests, as the doctors were worried that I got so thin. So many thyroid tests it’s stupid. Always normal. Never cortisol, until last month.
    I live alone, and am single, and hardly see any people. It’s been awful being so unwell, alone. My cats have kept me going. Yeah, I’m one of those. I’m scared about the surgery, because I fractured my neck in a car crash 13 years ago, and am already disabled, it was partial, so I can walk, but not much the last 3 years. My doctor has forbade me from exercise anyway, due to the risk factors, as I’m so weak now. My chronic pain and neck condition have made life very solitary, so it’s kind of like “now, this too!?”. So I guess I’ll have to find the strength somewhere and be my own best advocate, and make sure I’ve got everything prepared. The medicalert thing, documentation, etc. I have to get better, as there’s no-one to look after my babies (my cats). I’m worried about how expert the endocrinologist down here is, it’s not a big place. I live in Tasmania, Aus.

    1. Hi, Tess!

      Thanks for reaching out! I know this is so overwhelming and scary, but at least you have been diagnosed and know the “why” for why you’ve felt so awful for so many years. And while the medic alert bracelet and surgery do seem daunting, I’m here to tell you that you can have a life after surgery. Is it a huge adjustment? Yes. Do you still have bad days? Yes. But if you fight through it, get up and walk every day – even if its just to the postbox, or to the sofa, move. Don’t let the disease win. Own it. Attitude is everything. I very quickly adopted my own attitude that Cushing’s was not going to win and it still hasn’t. It’s gave it’s best shots that’s for sure but I still come out on top eventually. Finding a community of people that know and understand you is key. If you are on Facebook, try the Cushings Zebra Room and Cushing’s Connection. There’s also Cushing’s Help forums online and there’s always this blog. Feel free to email me with any questions you have or if you just need to vent. I’m here for you. cushieworld at gmail dot com.

      Hang in there!!!

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  10. Omg!! While reading your story I’ve found myself setting here in tears! I too have I’m thinking now Cushings from the results I got a few weeks ago from my MRI showing a microadenoma on the left side of my pituitary gland. May 17, 2010 I have birth to my 2nd baby girl via csection. I experienced horrible postpartum depression along with no breast milk produced as well. My regular family dr diagnosed me with Sheehans Syndrome then. About 2yrs later I had a laparoscopic hysterectomy and two weeks postop I had an artery rupture causing me to nearly hemorrhage to death. Luckily with God and the doctors I’m still here with a stint type coil that fixed the artery and got 4pts of blood back. Not sure when or where throughout all this my cortisol issues came into play but now 9hrs without any hydrocortisone my levels are at a critical low. I’ve gained 20+lbs in a yr and still gaining every day. I feel as if I’m blowing up like a balloon little by little. It’s so discouraging and I find myself in tears along with no energy very often due to it all! Thank you so much for sharing your story! Please continue to update!

  11. Amazing story , and strong person . My sis have the same diseases like you , she had the first surgery which was sussesful but after a year symptoms start showing up , she almost visit doctors on daily basis but they always say there is nothing with her and tell not to stress herself , this sounds crazy but she is still suffering and we don’t have any idea how to do ! Tnks for your experience

  12. Hello Everyone!

    I have recently been accepted as a patient at the Cleveland Clinic in Ohio. This is a minor step for me in my cushings diagnosis. My primary care physician and I hd discussed the possibilities but had not had any blood work or tests down for it, so the local endos did not take me as a patient. Not being accepted as a patient by local endocrinologist was absolutely heartbreaking for me for many reasons, I have gain 60 pound in 8 months… Losing my muscular 115 pound 5’6 track star body has basically ruined my life. I didn’t realize how important my abs were to me until I lost them (and could not regain them). My breasts has stretch marks all over them. I am constantly depressed, anxious, and irritable. My parents and I do not get along so 4 months ago I officially moved in with my fiancé. (Oh yeah, I’m only 17!!) My fiancé and I decided to get engaged because he has a very rare form of cancer (CTCL) and is the youngest in the nation with this form of lymphoma. As if my stress levels weren’t high enough lol!! So far I am not doing good. Being overweight, having acne, stress marks, and now eczema has alter what I think of myself. I stay up all night and think about just quitting life. I have so much to live for though: I got a free ride to Med School! This syndrome has changed me and I am afraid I will never be back to who I used to be. I am praying for some answers later this week, but I have been disappointed too much by the docs lately.

    Really need an answer on the infertility piece of Cushings… Will I be able to recover? I know one gal in my small town who has this disease and cannot have children. The doctors told me I would be fertile once the issues are resolved, but I am getting two different stories! If anyone can share their answers or story with me feel free to email me at ghetzel@ymail.com. I am willing to be a free councilor or pen pal. Just need someone who can relate 😦

  13. My 4yr old daughter was given a second “accidental” injection of steroids by a hospital she was transfered to after suffering some type of allergic breathing attack. She was sent home on prednisone for a week.

    6 months later, my daughter was obese. It didn’t matter how active she was or how healthy she ate, she kept gaining weight, Buffalo hump, round face, thin arms and legs with weight gain in stomach. The steroids did something terrible to her body, but every doctor I took her to said that she was not on them long enough for them to do anything to her.

    Doctors thought I was letting her be lazy, or drink pop and eat too much fast food (both were rare in our house). I insisted for 2 years that something was wrong before her doctor would agree to send her to a endocrinologist. I begged for the Cushing’s test. It came back in normal range.

    I gave up on it for a few years, after trying many different natural ways… Yeast free diet, glutin free diet (did work a little, but she gained the 6lbs she lost back after 2 days of eating glutin again) until last year when I found out my daughter (now 14yrs old) was not eating/eating very little food in desperation to loose weight and fit in with other girls. She was very upset because she still gained a couple pounds practically starving herself for 2 weeks. I was very concerned about her developing an eating disorder and insisted that was not healthy. I also noticed that she now has dark purple stretch marks on her stomach, thighes, and shoulder. I remembered that her endocrinologist said she didn’t have Cushing’s because she didn’t have stretch marks, but now she does.

    She is tired when waking up, and comments that she still feels tired on days she gets to sleep in. She has experienced depression due to her weight, and does experience mood swings… Sour, irritated, angry often. She was always a sweet girl, and I know some of this is typical teen behavior.

    I am having her tested again. Have you ever ran across anything that had similar symptoms to Cushings? In case her cortisol comes back ok, I need other places to look. This has been.so stressful and I have spent countless sleepless nights researching on this over the years. Just want an answer so I can help her! Thanks for sharing your journey! Jen

    1. I feel you havebto really advocate for you daughter with these doctor’s to listen to your valid concerns with all of her symptoms now her actual signs that can be seen. Thats not even correct, to fully rule out Cushing’s Syndrome/disease with only ONE test anyway. Doctors must preform multiple test to get a diagnosis of the illness. I hope this helps and your daughter geys better and recieves the care she needs

    2. I hope you get this message. Have them check for PSEUDO CUSHINGS EPISODES. It’s a separate disease that mimics CUSHINGS from what I’ve read. There are separate tests for this.

      Hopefully you’ve already found answers for your little girl but wanted to pair just in case.

      Myself I am now suspecting CUSHINGS after several years of trying to get my thyroid to show as hypo (because of the symptoms) but the blood work never agreed. After reading this and the list of symptoms I’m 99% certain I have CUSHINGS. I literally sweat ALL the time unless there’s a fan in my face. I’m either HOT or freezing never just comfortable. But when I’m hot my skin is cool to the touch and clammy. For me this symptom is worse than the weight gain (I’ve alway been a size 9 but have progressively been going up for the last 4 years no matter what I do).
      I feel like I’m sick all the time because of the sweating – very similar to sweats and chills of the flu. And my own family is fed up. “You’re sick AGAIN? What is it NOW? You’re a hypochondriac! You’re too young to feel like that, when I was your age I could this and that and that!”

      That’s what I get all the time. But what THEY don’t get is HOW AWFUL I feel! I’ve felt this way (the sweating) for a DECADE with NO DIAGNOSIS! Hopefully, now that I’m getting a hump on my back, I’ve gained 70 lbs for no apparent reason, I have acne worse than my teenage years (I’m 39), I can’t even get out of bed (I force myself to work then come home straight to bed- it’s the ONLY time I’m comfortable in bed with the fan in my face) and I HURT all over. I have panic attacks worried about chest pains and pains in my arm and shoulder (but I also have nerve damage from an injury but tell that to a panicking mind lol)

      There’s so many more symptoms that CUSHINGS is the ONLY thing that makes sense. My boyfriend (thank go for him) has watched this whole body changing process. But he also says things like “exhausted from doing nothing all day hon?” Well actually…..

    3. I know your post is over a year old, but I thought I would share something I came across recently in research that I have done to help my wife. Medical researchers have been publishing articles in the journals that there is damage done to the endocrine system when adolescents and young adults are dealing with anorexia nervosa. Amongst the issues that can arise, one end result can be elevated cortisol levels. If you want to see one of the articles, look for the July 2014 issue of the Lancet: Diabetes & Encrinology. The leading author is Dr Misra at Massachusetts General in Boston.

  14. Rachel, I can not thank you enough for writing this! I was rushed to the ER two weeks ago. Prior I was being tested for cushings, finally, but very slowly. In the hospital they continued the tests and did nothing to help.the severe symptoms of cushings. Thankfully, it wasn’t like what you experianced, my goodness what a strong woman to you are. The cush symptoms that came out for me the most were the anxiety, high blood pressure and heavy breathing. They thought I was just a person that had anxiety and a bad heart plus I weigh like 260. Other days 240 other days 280…you know the drill anyway as I lay there in the er sect I n of the hospital where they make you wait until you get a room (3 days) in this state….I read your story and while the entire piece of literature is emotional, informative and beautiful. ..the sentence that resonates in my ear and my brain is to be your own advocate. After I read this I started speaking up in the hospital a little more. It still took a week for them.to.finally.take the mri to find the tumor on my.pituitary gland that I gettino removed on Tuesday. It is routine….but I never wojld.ever want to leave this life without words of unspoken thanks. So thank you, for your bravery and wisdom and courage to write this ….really I don’t want to write adjectives thst describe you I want to hug you. 😉

  15. I had my surgery to remove my pituitary tumor 5 days ago. About to endure what I have read as the most difficult phase of cushings disease: recovery. I started a blog myself and have going reading other stories extremely helpful. Thank you for sharing your story.

  16. Just stumbled upon this as I wait to get results of the dexamet…sone back. I’ve got every symptom and all of the comments and your story make me feel like I’m not alone or crazy! If it’s not cushings I don’t know what to think…never thought I’d hope for a diagnosis but what a relief it would be to have some hope!

  17. Rachel. Your story sounds like mine. I am a Cushing’s survivor too. I went through hell and back, and it took several years to get diagnosed. I was told that Cushing’s Disease was too rare for me to have and that I “read too much.” Failed pit surgery with severe complications at Emory, followed by six weeks of fractionated stereotactic radiation. Because of other chronic illnesses I still have, I struggled with Addisonian crises which seem to happen @ twice per year. I’m glad you shared your story and also that you’re working with Mary O. The site she started in the very early 2000s was all the support I had – online info about Cushing’s back then was about the disease in dogs and horses. Keep the faith and keep up educating people.

    Best Regards, Melinda Shannon Freels, Atlanta, GA

  18. Hey Rachel,

    I’m not sure when you wrote this bio, but it seems like a while ago… In any case, I just want you to know that you HAVE been a help to so many others. I know exactly what you’re feeling, that hopelessness, that unknown, and the fear that things won’t look up…and for what? Why do some of us seem to get dealt all the bad hands? I don’t think that’s true. I know you have touched peope; you have certainly touched me! This WAS all for a reason. Again, I don’t know if you’ve discovered that wide path this experience left for you or not, but if not, it is for sure going to come around.

    I am willing with my last shred of hope that things look up for me too. You’re not alone! I haven’t been diagnosed yet and am literally completing my first 24-hour urine test today. That’s step number one out of many many more steps to come. But as a friend likes to remind me, we can either expend energy making ourselves feel worse, or better–they take the same amount of energy. So I’m really trying to literally take each step at a time. Even if every day feels like I’m summiting a different mountain than yesterday, the only thing I can do is enjoy the climb!

    I’ll read more of your stuff so I actually know how you are doing presently, but in any case, I just want you to know how happy I am you wrote this and shared your story with the public. I’m actually from Seattle and you have helped me feel at ease with my choice in going to Swedish.

    Thank you,

    Nicole

  19. I can empathize re: Cushing’s Disease. After my fainting while driving caused a fender bender to my car in ’13, an investigative MRI revealed a macroadenoma on a squashed pituitary. 2 years, a nearly-fatal suicide attempt and a 70lb weight gain later, I had it removed through my sinus cavity. Psyche, weight and hormones have since returned to normal. So normal, that my blood pressure is consistently 20-25 pts below what it had been for decades and continuing to drop. Frequent headaches during the same time period all gone.

    It’s impossible for me to be objective regarding effects on my personality throughout this journey. But it would be obtuse to think with all the physical recovery, that my personality hasn’t been effected for the better as well now that the cortisol has abated. I can’t help (but hate) wondering how my life may have turned out differently if I hadn’t been afflicted with Cushing’s all that time; would I have landed a dream job or Ms. Right, 2 things that have eluded me? Meh-far more importantly I’m thankful to be alive and healthy.

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