Cushing's Info

I am a 41 year old white female. I have been struggling since 2007 with various odd things happening to my body.  It started when I had a menstrual 'accident' at work.  I should have been done with my cycle, but suddenly I started flowing very heavy like someone turned on a faucet.  I went to the OB/GYN and ended up having my uterus removed, but kept the ovaries.  I ended up having a very bad pain in my lower right pelvic area and my OB/GYN then said I had endometriosis and needed my ovaries removed.  Before I could have that surgery, I pulled a hernia and had to have that operated on.  Two months after that surgery, I had my ovaries removed.  By this time, I gained 30lbs and I attributed it to not being able to be active like I used to.  I was a very active person, kickboxing, aerobics, running, weights, swimming, you name it, I did it and ENJOYED it.  I figured that all the laying around after the surgical procedures and now the fact that I was in surgical menopause, well, when I started feeling better I was sure that weight would drop off when I started to exercise. Once I started getting around better, I started going back to the gym and back into my fitness/eating pattern.  I kept gaining weight, I gained 20lbs. I was also having hot flashes/flushes, night sweats, nightmares, insomnia, anxiety, mood swings and then I started craving chocolate, sweets, anything with a lot of sugar.  Which was odd because I've never been one to like much chocolate or sweets.  I was tired during the day, but started to wake up when it was time to go to bed.  I drag home from work so tired, and think "Good, I'll be able to sleep tonight" and then I would start feeling like I was waking up in my mind, inside my body, but I was so exhausted.  My cholesterol shot up, so did my bp, the doctor told me I better lose some weight and eat better or I'd have to take medication.  I told her I was trying to lose weight but I had this horrible desire to eat, I was even waking up in the middle of the night to eat! And exercise wiped me out.  It used to make me feel better, but now it was becoming a routine of exercise, then have to have three days to recover before I had the energy to exercise again. In March of 2009 I was diagnosed with Hashimoto's Disease and Hypothyroid.  The endocrinologist I went to first, he was horrible.  Treated me like I was a lazy slob and that is why I was fat.  He told me to eat better, exercise more and drink more water.  When I asked him if there could be something else wrong with me, he snapped at me and told me I needed to change my lifestyle and lose weight.  He was actually looking down on me, it was humiliating.  I went back to my family doctor who referred me to another endo and this endo was at least very kind and sweet and didn't make me feel like a lazy slob.  But she too noticed I was gaining weight quickly and didn't believe that I was exercising, dieting, and trying to lose weight. I started having blurred vision, so bad sometimes that I knew it wasn't safe for me to drive.  I went to the eye doctor and he said my eye vision was actually improved and they couldn't see anything wrong.  I ended up in the hospital one day because my tongue, jaw, and left arm went numb.  My family doctor thought I might be having a stroke.  They did a CT scan, chest xray, EKG and took some blood.  They had me give a urine sample but nobody ever tested it.  And even though I told them I had a hysterectomy at their hospital two years prior, they still did a pregnancy test.  The doctor came over and told me nothing was wrong that they could see and to go get tested for MS.  MS??

I made the appointment for the MS testing in the car on the way back to work. But I was not happy about it and not convinced that this is what was wrong with me.  The biggest problem I am having is with the mental disorder, memory problems, thought problems, thoughts of just wanting to be dead, dark things, horrible thoughts.  It is like someone else controls my thoughts.  Paranoia, hallucinations, sadness.  I asked several menopausal women if they ever had those kinds of thoughts, and they all looked at me like I was making it up.  Aside from the sadness and mild depression, they didn't seem to have the paranoia, hallucinations and extreme thoughts that I was having.  After reading up on the symptoms of MS, and the fact that I would have to have a spinal tap....I decided to call my endo and find out if the things happening to me might be because of the synthroid or the hypothyroid or maybe the Hashi's was attacking me again.  She called me back, which I thought was very cool, looked at my blood work from the hospital and said my calcium was very high.  She wanted me to get that tested and told me to drink lots of water.  I didn't know you are supposed to test after fasting, and went in the middle of the day and got tested.  The results came back 'normal' so she ruled out hyperparathyroidism and reduced my synthroid dose from 100 to 75.

I was still having these raging thoughts and now I was going on almost 2 years of feeling constantly on edge and wound up tight as a piano wire.  I have been putting my long-suffering boyfriend through hell with my suspicions, paranoia and fears.  He had been telling me all along that he loves me but even he noticed that I was having these wild mood swings.  I went on a diet and lost some weight, but it actually became physically impossible to have to think about what I was eating, plan it, document it, it was all so hard, so difficult.  My house work started slipping and it took everything I had to keep a clean house.  I was getting to work late, hating my job that I'd always enjoyed, and became easily agitated.  Every simple plan that didn't work out, I took personally and as a sign of rejection or people not liking me.  I thought many times about driving into a wall and just dying so I can get some peace.

After a couple weeks, I started feeling better, the chest pains were going away, the headaches were dying down, vision problems were resolving, I was starting to feel 'sane' a little.  These were acutally very small improvements but even a little improvement felt like a bunch.  And then hell started all over again.  I cancelled my appointment to get tested for MS and called the University of Michigan and scheduled an appointment at their Endo clinic.  SOMETHING is wrong with me, and I know it has to have something to do with this Hypothyroidism, maybe I need different medication?  Maybe I don't even have it?

I am so worn down after seeing so many doctors and being hospitalized so often.  I have put my boyfriend, friends, and family through living hell with my mood swings and my inability to control my emotions.  I told the new Endo that "SOMETHING ISN'T RIGHT"....I spent an hour with her, crying, begging, generally being psychotic trying to explain how bad I feel and how if I lose weight, I regain twice the amount two weeks later.  My weight is in my stomach, and my daughter remarked how HUGE my breasts have become.  I also have pink marks along my stomach and breasts, I was also having a lot of swelling in my legs but that has calmed down some but I think the water is in my stomach now.

The new Endo ordered a 24-hour urine to test for free cortisol and creatine.  In addition, I had bloodwork for basic metabolic profile, magnesium, phosphate, vitamin d, parathyroid hormone, testosterone, delta 4 androstenedione, 17 OH Progesterone, DHEAS, TSH and Free T4. She didn't say much to me, but she listened and she wrote down just about everything I was saying, and I was talking a mile a minute.  She did a palp of my throat and did find that my thyroid is swollen so I also had an ultrasound of my neck for my thryoid.  I have an appointment for the week before Thanksgiving to get the results of all the tests.  The only thing she said was she was curious about my cortisol levels and that those can determine if depression is a factor.  I also told her I have to get my face waxed twice a month and that I've developed chin and jaw hair that is quite noticeable, as well as my upper lip hair has become darker and courser.  I told her "Something is wrong, I don't know what, but it isn't depression."  I've had depression and it has never taken me to these depths.  If the blood/urine tests come back ok...then I may have myself committed to a mental institution because whatever ailment I have, has really done a number on my body.

Here are my symptoms over the past couple of years:

Extreme weight gain (have gained 55 lbs since my last surgery in 2008 - have gained a total of 83 pounds since my first surgery in 2007)
Weight gain rebound after successful dieting
Inability to exercise
Fatigue
Muscle cramps - sometimes strong, sometimes mild
Excessive facial hair
Belly pain
Weight gain mostly in abdomen, breasts, neck, face  (I don't have a buffalo hump, but do have fatty tissue in clavical area)
Eating in the middle of the night
Eating like no tomorrow
Eating to make myself calm down, feel better, stop the raging feeling inside me
Craving for sweets, simple carbs
Insomnia
Bowel changes (loose or constipated)
Extreme mood swings, mental changes sometimes even in the space of a few minutes my mood will shift
Kidney pain that comes and goes
Pain by my belly button
Loss of muscle strength in thigh muscles, and at the knee's
Pain upon standing
Paranoia
Hallucinations
Vision problems
Foot pain
Back pain
Hand cramps
Pain in right arm elbow on the top - happened when using very light weights
Feeling tense and keyed up all the time
Have to take sleeping medications in order to get to sleep, sometimes have to take another pill in the middle of the night to go back to sleep after only a few hours
Heartburn - daily, can be very powerful
Numb jaw
Numb tongue
Numb left side
Pelvic pain
Incresed urination and thirst
Bladder infections
Loss of bladder control (one time)
Dry vagina
Low libido
Sore throat
Takes a long time for cuts/burns to heal and they scar and leave raised skin instead of just making new skin
Severe brusing even after getting a butterfly needle for a blood test - bruises last two weeks and hurt
High urine calcium (high enough for doctors to push on my kidneys and ask "does that hurt?")
High blood calcium
Headaches that wake me up and take a couple hours to go away
Heart palpitations
Sweating excessively
Tremors in the hands
Eye muscle twitching
Pain in teeth - gums feeling like they are swollen/tight even though they aren't
Teeth feeling like they are off center somehow
Gum bleeding
Sinus headaches
Bone in forehead painful to touch, feels bruised sometimes
Stabbing pain in center of the head
Fear
Anxiety
Suicidal thoughts
Bursting into tears for no reason
Jumbled thoughts, inability to sort things out in my head
Hopelessness
Inability to exercise
Air hunger sometimes
Feeling trapped inside a body that isn't mine
Wanting to push people away because I don't know how they can even love what I am becoming/have become - want to push them away before they give up on me
Wanting people to pay attention to only me, feeling like I am the only one trapped in hell on earth, needing help, feeling helpless, wanting the world to stop and focus on me so I can finally feel better!


Things I've been told are wrong with me:
Obesity - lose weight and everything will feel better!
Diabetes - Blood sugars test in the 80's
Kidney stones - I do believe I have had a couple but they didn't hurt when they passed
Depression
MS
Manic/Depressive
TIA
Anxiety - stress (doesn't everyone?)
Not exercising enough
Not eating properly
Abusive relationship (due to bruising)

Medications I have been given are xanax, wellbutrin xl, and of course I am taking my synthroid.  I stopped taking the xanax but do use 3 - 4 OTC sleeping pills on an average night.  Have to take them as soon as I get home from work to find relief from the constant, pressing, anxiety.

I do not know if I have Cushing's but I know that whatever I do have, is endocrine related.  I am a woman who has enjoyed sports and exercise and being healthy and wants to go back to my old life.  It is like there is an invisible wall keeping me from having what I can see, but can't seem to touch.  I cannot describe to people how I feel as though slowly I am being destroyed from the inside, that something is killing me, raging through my body and it feels like my mind is held captive.

I know I am taking a big risk putting this story out there and don't even have a diagnoses of Cushing's.  I will update later with the results of all the tests.  I would LOVE to hear from anyone who has had my symptoms who was either diagnosed with Cushing's or maybe thought it was but it turned out it wasn't, and then what it was.  Something is wrong with me, I just need to know.  And it is true you have to be your own advocate because doctors will treat these symptoms but might not look further.  And if your symptoms all get treated with a pill and quiet down, you and your doctor may think that was all it was.  But if you have that nagging feeling that something just isn't right, don't be afraid to seek a second, third, fourth opinion.  Thank you.