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Pam M (mapgirl23), Undiagnosed Bio

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I am the mother of an 18 year old daughter who I suspect has Cushing’s. Kristy was diagnosed with Tourette’s Syndrome when she was in the 5th grade. She suffers from mild to severe motor tics.

Fast forward to the end of her Freshman year and high school when she started to develop depression, anxiety and unexplained episodes of vomiting along with rash covering her entire body which the doctors just said was eczema She also developed stretch marks all over her breast, abdomen and thighs. I asked the dermatologist and she said she was just growing. She was the same size she had been for the last 2 years and was actually losing weight. I took her to a neurologist who diagnosed her with Cyclic vomiting syndrome. By May of the following year she was seeing a therapist and then went to see a psychiatrist who put her on Prozac. Her rash immediately cleared up. I asked the doctor about cortisol I figured her body must be producing to much and he said yes it was causing a stress rash.

Her mood improved temporarily and everything was blamed on the Tourette Syndrome. She started gain weight and by her Senior year she had gained 60 pounds and she barely ate. Her face became moon shaped and the majority of her weight was carried in the abdomen area. Her anxiety continued to get worse along with severe fatigue. We saw more doctors who just told her to lose weight and go to therapy to learn to live with her symptoms because there is nothing they could do for her. In June we found a new psychiatrist at U of M who increased her dosage of Prozac to the max dosage. She still has know improvement and she even attended anxiety classes to try to learn to cope.

She is now suffering from severe brain fog , has difficulty speaking and gets confused easily. In November she started having vomiting episodes and a rash again so that brought me back to thinking about her cortisol levels. I started searching the internet once again and stumbled upon Cushings once again. The light bulb went off! I ran downstairs and checked the back of her neck and there was a Buffalo Hump that wasn’t there in June. That is when I knew we may have found the answer.

We saw a new family doctor in December and she took us seriously and ordered Prolactin, testosterone, Thyroid, 24 Hour free urine cortisol and a Cortisol blood test. The Prolactin and Urine Cortisol came back elevated. The blood Cortisol 8am test cam back at the highest end of normal. We met with her psychiatrist and he agrees that it may be Cushings. We will see him on Feb. 1 and he is going to review her labs with a endocrinologist. We have an appointment with an endocrinologist on March 2 and are waiting to get into another endocrinologist at the University of Michigan. Praying for an answer!

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Jane (Jane), Undiagnosed Bio

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undiagnosed3

 

Hi. I am retired RN in Oklahoma.

I have undifferentiated connective tissue disease, chronic kidney disease and peripheral nerve disease in arms and legs.

I had an autoimmune disease in 1972 called Guillian Barre that left me with residual neuropathy.

Recently my PCP noticed I had hyperpigmentation and thought it might be Cushing’s. My ACTH was in the upper 70s, serum cortisol normal. My weight has been out of control for years.

I did 24 hour urine with normal result. My PCP ordered MRI and showed suspicion for 6 mm adenoma left side of pituitary. Saw endo who ordered 1 mg Dex test. To see neurosurgeon in Dec.

Have also had some severe headaches and intermittent nasea and vomiting (both unusual for me). Also unreasonable emotional outbursts totally out of character for me. If I have Cushings it must be cyclic or subclinical. I haven’t done my Dex test yet because I just don’t know if I should do it when I feel really bad or really good. I’ve felt like my life has been a roller coaster of highs and lows for over a year now.

My endo said if my Dex test is positive she would need to send me to Mayo because she has never dealt with this and there is no one in Oklahoma she can send me to. I have read many bios on this site. It’s crazy how long it takes for people to get diagnosed. Literature says timely diagnosis is so important in relationship to good outcomes. I don’t have the Cushings striae. I do have really bad swelling and pain, fatigue. I’ve been on a daily diuretic for almost 30 years. If I miss it my face and hands swell up and one eye gets red and tears. I feel like my problems began after I had my last child 30 years ago.

Sending good thoughts to all of you out there and what you have and are currently going through. There are lots of heroes here, and even if my problems turn out to be something else, this website has been a life savior. Thanks so much for being there.

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Kelsey G (kelcann44), Undiagnosed Bio

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Hi there! I am a 24 year old female from New Zealand. I am curently awaiting my last test to prove 100% if I have cyclical cushing syndrome or not.

I went from crazy happy boucing sport ,dance and hunting crazy tom boy to at age 12 have 8months solid of tonsitis once i got them out i never recoverd propley and turns out i had galandular fever which effected me really badly they belive it is where my chronic fatuige comes from and other things.

From 2008 to may 2011 i was living your normal teenage dream making up for being so sick in highschool i could makeup for that and build some.special groups of friends amd plan partys and holidays….untill may 2011, I was standing behind the counter at work and there was a niggle at my side going down my legs and that soon turned into full blown cramping that had me colapse amd feeling like i was being kicked woth boots. They rushed me to hospital and with pain medication it became a very sharp.niggly pain and with pain came vommiting ( i am not also diagnosed woth cyclical vommoiting syndrome
After a week they xrayed my side and said i was very constipated but they tried and tried to clear it amd they couldmt…..this episode lasted 8 weeks and i tend to have them every 6months of so ranging from 8weeks to 16weeks eventually i have been picked up by an endicrine professor who has done some tests with abnormal results the last one being they 30day salivitoryswab test

I next have the urinary test but i canot have that untill im out of pain and having bowel motions ( this had been week 5) just wondering if anyone else has had bowel troubles with theirs. The endicrine man is shocked that i have been missed for soo long when i have 99% of side effects ( i mever knew i just thought i was gettimg fatter and my chubby cheeks had decided to fatten my whole face and my old size 16 pants and 16 top. Has now turned into 16pants and size 24 top!

I wish i had a answer because the life i am living is killing me i am a hollow shell of the person i was i have no life dreams or ambitions its one day at a time or getting sick again will ruin it (and i beyond love traveling ended up in ireland hospitala and laid up 2weeks bedrest for sinus infection and pnemona and a close to bursting drum…i camt plan holidays now as i cant save the money my bugets blow away when im out of work for 16weeks !

Luckily my mum.andndad are there for me but i see how me being so ill is breaking their hearts and puting them under so much stress along with my brothers.and my neices and nephews . My big boy 4 year old nephew breaks down everytime he sees me in hospital and the needles in the hand must.hurt me and that the hospitals turned aunty telsey into a quiet ghost who dosnt love me and play with me….smashes my heart into a million peices hearing that but it is true and when im good im.rediculous i party like a rockstar and bugger the health because im done with living the shadow ghost of.me!! 💖

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Andrea P, Steroid-Induced Cushing’s

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What can you do when the cure might be worse than the disease?

“Have you thought of losing some weight? This would most likely take care of the many complaints you have.” The all too eager yet condescending young intern continued despite my blank stare, “Have you had a sleep study done?”

How many times had I been in this situation? Change the doctor, but keep me there, in the crazy patient’s chair. “Well, the patient has five children, a long history of miscarriages, a fairly recent history of a traumatic abdominal hysterectomy… couple these with the recent death of her father to cancer and basically all normal testing… clearly she’s a depressed, middle aged woman hitting the Ben and Jerry’s a little too much and addicted to Lifetime movies.” Or something like that.

What’s worse than the tiny intern with a huge ego, was the troll under the bridge. I still had to face my PCP who listened to me a little less than a mother who’s heard “Mommy, mommy!” for the hundredth time in an hour, from her 3 year old.

For the better part of two years, I’d seen her for so many things. Each time I’d ask her why my bones were breaking so easily. I told her I was shrinking, to which she replied “It’s impossible to shrink an inch and a half in a year.” Then laughter. I’d ask her why the nausea & vomiting, low oxygen, and migraines were there… all of this was ignored and off to another specialist I’d go (for a similar experience), with more Prednisone in hand. When she didn’t see hardcore proof (i.e. a lab tests or a specialist’s report confirming the symptoms in front of her) the things simply did not exist, despite glaring symptoms.

Another specialist I’d seen did care and did see the disturbing, rapid transformation and accumulation of symptoms, so he sent me to my PCP for testing. I later found out that this specialist feared all along what I had. He had been warning me that Prednisone was dangerous and he hated it. I didn’t. I loved it. It was the only thing that relieved my severe neuropathy pain, the nausea, vomiting and migraines. Without it, I was in the E.R. at least once a week.

I suppose I could cut the PCP some slack and say that every doctor, when they themselves are the young intern, dream about the day when they can show off their seniority and knowledge (let’s not forget power) in front of another young intern. I could say this, but I won’t. Not when I know there are the most wise, sympathetic, world renowned and respected doctors, who’ve been practicing medicine longer than most interns have graced this earth, yet they treat the interns (and patients) as equals. They remain humble.

No, this PCP had no excuse for demeaning me for twenty minutes in front of this man. Alas! She did finally do her job and gave me an exam. It took her less than thirty seconds to blurt out “OMG Andrea! You have Cushing’s Syndrome!” All of the cool was gone. She fumbled with her papers, stuttered, murmured to herself… She was a mess.

andrea-fShe left the room for ten minutes and returned more composed and more… herself. “Andrea, I’m sure you’ve read about Cushing’s Syndrome on the internet.” This sentence was delivered with the same tone and sarcasm as a Disney villain about to pounce on an unsuspecting bunny (or other furry creature… did I mention the “fur” I had sprouted?). She continued, “You have every symptom of Cushing’s Syndrome. The buffalo hump is huge and classic.” She went on about my symptoms. All of which I’d been begging her to look at before this appointment.

By the end of the appointment, she had decided that she’d need to talk to my then rheumatologist; I’d need all sorts of testing, and foremost, “You HAVE to get off of that Prednisone Andrea!” Certainly she knew I wasn’t convinced that her prescriptions of Prednisone were somehow my fault, however the wee intern might have sucked that one up. Perhaps he believed it was my rheumatologist that prescribed all of it; he did do his part as well. They were both in it together.

I left the office miffed and confused. “Well,” I thought, “Let’s go home and see what this Cushing’s is, on the Internet. Probably some sort of psychosomatic disease where you think yourself into the side effects of Prednisone.”

At the point where I began my Internet search, I had changed from an active, really attractive (I can toot my horn, ’cause it ain’t so now) about to be 40 year-old, homeschooling mom of five beautiful children. I was in bed for 3 weeks prior to my PCP appointment. I found out later that my family thought that this was it, I was dying. Indeed, I was close to death and it’s a miracle that I didn’t die.

I had gained 40 lbs. for which easily 10 of it rested on the top of my back. The Buffalo Hump. The rest was hanging out in strange pockets of fat all over my middle and face. I was disoriented and in cold sweats all of the time. Everything hurt.

On the evening of that fateful Friday after my PCP appointment, I joined a Cushing’s support group online. It took me three weeks to compose my introduction post because I had not the energy, nor the wherewithal to finish it. In the meantime however, I found out enough about Steroid Induced Cushing’s Syndrome to know that I was in big trouble.

Every bad side effect one can get from steroid use, I am getting or have. What’s worse is, my adrenal glands have atrophied. They won’t wake up and naturally produce cortisol that our bodies vitally need. Every organ and gland in our body relies on the production of cortisol. When you have Cushing’s, you’re in a real pickle Fred.

With me, I’m continually in either Cushing’s mode or Addison’s mode. Two opposite diseases. You’d be surprised at how many people in the medical field do not understand this. Most disturbing is how many endocrinologists don’t understand it. My body is used to high levels of cortisol so when I try to wean off and my body gets stressed, sick, injured, needs surgery, etc., I go into adrenal insufficiency with the chance of adrenal crisis.

Ahh, adrenal crisis! My nemesis! Is it? Isn’t it? Hospital? Just a Prednisone Boost? These are questions I ask myself daily. I was very near dying during those few weeks before I saw my PCP, because my body was literally shutting down. Again, I’m still amazed that I didn’t die.

Right. I realized for me, a person with autoimmune disease, with all sorts of crazy symptoms, weaning down to a healthy level of cortisol was going to take another miracle. Those message boards? Every time I went to send a personal message to a member that I could relate to in experience, they were dead. Dead. Young women, neglected by so many doctors who thought that they too, were fat and depressed.

Monday came and I called my PCP as scheduled. When she answered the phone she acted as if she didn’t know why I was calling. Before a minute was up, I realized she was getting as far away from admitting I had Cushing’s Syndrome as she could. Both she and my rheumatologist had been prescribing me prednisone without any solid diagnosis (at that point). Basically the Prednisone was completely unwarranted. She told me to wean off of the Prednisone and “Um okay?” then let the silence hang there. I was speechless (and as you’re well aware of at this point, is pretty darn near an oxymoron).

I took it upon myself to see an endocrinologist, who I owe my life to. He ordered a bone density test, a bunch of labs, told me to get a medical alert bracelet ASAP and a whole lot more. He was shocked that none of this had been done.

The bone density test showed that my PCP was half right, I didn’t lose an inch and half off of my stature in less than a year, I had lost two and a half inches. I began a strong osteoporosis medication. A little later, I was put on 5 liters of oxygen at night and as needed during the day, a bi-pap machine and I learned more about cortisol stress doses and began searching for new doctors.

For the next year and a half, I would see a total of 3 more rheumatologists, 5 neurologists and 2 new PCP’s. I was admitted to the hospital too many times to count. I saw 5 more specialists, wasted tons of money, precious time and was demeaned further than I could have ever imagined coming from people who are supposed to “Do no harm.” at one of those big name clinics. Same thing: fat and CrAzY. At the end of it all, I had given up hope. I was on more Prednisone than when I had first seen my endocrinologist.

My teeth had begun rotting because of the calcium loss and my Sjogren’s Syndrome did not help matters there. I had 6 extractions in 3 months and was never able to get back down to the 10 mg. of Prednisone I had begun with. Stress, illness and then having to let the beautiful eyes of our children watch it all…too much.

I saw my endocrinologist for a checkup and he yelled at me. I yelled at him. We both yelled together and then he picked up the phone in front of me and called a few specialists (the most-awesome-est specialists the world has to offer) and made me appointments with them. These doctors graciously took me on as their patient and began working as a team with my endocrinologist to get me off of this Prednisone.

Well, it’s been 8 months since that loud, intense “time of fellowship” with my endocrinologist. Despite the fact that my teeth have deteriorated to the point where I will have them all extracted on Jan. 2, 2014 (Happy New Year!)… and I found out I have both thyroiditis and hyperparathyroidism and well, a bunch of other … stuff. I’m due to wean down to 9 mg. of Prednisone on Thanksgiving day! I’ve lost a little weight. There’s so much to be thankful for!

I have lost much, but what I’ve gained in return, I would never, ever give up. My faith and that of my family’s, has grown in ways that would never have happened had I not gotten this dreadful disease. I found many things. I have found that my husband really means it when he says that I’m beautiful. My children mean it… I have what many have deemed, “The Ugly Disease” yet I feel more beautiful than I ever have. I feel more blessed than I ever have. Most importantly, I remembered and again found my hope, through faith.

Faith is the essence of things hoped for, the evidence of things unseen. When those of us with serious and chronic illness, have no faith in a Hope, we are dead persons walking. Had my endocrinologist not been divinely appointed to verbally kick my butt, there’s no doubt in my mind that I would not be here trying to type this story of mine.

I can’t write nor say a thing without a moral. So the moral of my story is this: know who and what your hope is in. Know what the unseen things are and have fat faith. Take your illness and use it. Use your life! It’s beautiful!

Article reposted with consent of the author from Have Faith: Cushing’s Syndrome

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Valencia, Undiagnosed Bio

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A Golden Oldie

Hello.  I was led to this site while searching for information.  I am surprised to find out that so many people have similar stories to my own.

Last summer I went to the ER because of unexplained vomiting.  They said that my liver values were off, and I needed a CT scan.  So I went to my internist and after the scan he called to tell me that they found a tumor on my left adrenal gland.  He told me to stop taking Metformin, and at the time I was taking 850 mg 3 times daily.  I am severely diabetic, have hypertension and am taking 5 blood pressure meds.  I have had a lifetime of weight issues, missed periods for years at a time, have had hair loss on my head, but I shave my chin and mustache every day since I was a teen, and I am constantly tired.  I also am obese, but eat usually once a day now, since my abdomen is so large.  My legs and arms are smaller than the rest of my body, and this has happened over the last 10 years. I have a buffalo hump, and have since I was a teenager.

The last 2 endocrinologists I went to just yelled at me for not eating properly and not monitoring my glucose levels.  One told me that she was glad my daughter is married because I am going to die.  She never checked me for anything.  The crazy part was after the internist called me and said that I would have to have surgery to remove the adenoma, he changed his mind.  All of a sudden, he said I needed to be followed by an endocrinologist, after he knew the two that I had been seeing.  He referred me to a new endo, who immediately said she didn’t think I had Cushing’s syndrome, but she ordered some tests.  I didn’t take them because she was in the process of leaving the practice.  I see a cardiologist who insists that adrenal adenomas are common, and usually don’t require any attention.  UMMM, I am on 14 different medications for diabetes, hypertension, depression, and arthritis in my back.  I think the evidence is present, but the doctors don’t seem to want to deal with my situation.

So, I changed doctors.  I go to a new endocrinologist on 9/2, and I pray this one will listen.  My health is failing, and my quality of life has sufferred because of all of these problems.

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Linda, Pituitary Bio

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I Am 52 yrs. old . My sympmtoms began when I was 40 yrs. old. I was at at a yearly physical.  I was extremeley athletic. I used to ren 70 miles a week. when I was 17 to 19… dopamine I believe kept me well.

One year prior to my  symptoms ..I was 39. I was very fatiquiged..my children were suffwering. They were 6  and 9.  They are now 17 and 20.  I feel I stopped raising them at this age.  If any of you have seen the Sting  the movie with Paul Newman obbserve that he  dunked his head in ice.  I was at Lincoln city , Oregon when I attemted this. procedure. I say procedure and I didn’t even know a tumor was forming on my pituairy gland. Who kneew? Not me. It didn’t even occur to me that a growth was growing in my brain!!

I went from 135lb to 265lb. in 3 months. I was so frightented!!!!!!!!!! My doctor told me to go to an encronologist…very important DOCTOR!!! Most doctors do not have the slighist idea what Cuhing’s is ..Dogs ,horses, and PEOPLE get it. Some doctors are either dumb or totally ignorant. The    E. doctor said it looked like I had Cushing’s syndrome. I then made him fall off his chair in laughfter! My family and I recently put a family dog down with Cushing’s disease. I wanted to know if it was contagious?? No, he said wiping his eyes from laughing. He appologigized when I started crying.. I wanted to know how I got it. My dogs was in the adrenal glands. Fatal. We said goog-bye to BUDDY>> My doctor said he hoped I did not have the same dianosis.

After thousands of dollars later..Thank goodness we had great West insuanarce..Get it if you can. Covered everything 100 percent. Discovered a benign tumor on my left pituiary gland. They removed it through my nose . I also had my 9th sinus surgury. It was also from my left nostril. I got fake diabetes. It went away when I left the hospital. The weight started dropping with the help of a nutrisionist. I was taking hydrocortisone. pills.  I lost 65 lbs. A few years later my head started  hurtimg worse.

After One day of test at a major University OHSU I was diagnosed again with the same tumor . but 3x’s bigger . Surgery through my mouth.  Weight came back and some. I asked what my options were? #00lbs, heart attack and death. They told me to remove my adrenal glands. I did. I now have diabetes ,I take 200mg. because my thyroid is so large. Guiess what?? My immunec system is nill.

I wanted to be healthy I loved bananas… get what I got ?? I got the e-coli scare with the spinacach in the bag. E.R. 3 weeks . Everyone in yellow smocks..  No visitors! June 2007… I lost 40 lbs. I was going out to lunch with my husband saw double.  Uncontrollable votimiting… E.R. Encronologist. or family doctor. After driving 90 miles an hour 45 minutes away we arrived. I was talking all the way through it . No pulse ..I said am I dead? My doctor said Shut up. No heartbeat. I said am I dead yet? She said shut up agin. I wass vvvvvvvvv teching. I said where are the cameras for HOUSE the t.v. show. I sell novelty neck ties my huband Allen just so happenned to be wearing a Bug’s Bunny tie…I guess you know what i said ..What’s up doc??

The Paramedic behind me was 2x’s larger than my husband He said I was going to the hospital. They put me in the ambulance. Allen asked my husband if he wanted to come . He said he would follow. When they closed the door Allen said if you feel anytjhing  hit my knee. 10 seconds later I hit his knee as hard as I could. I felt an elephant!! If you want me to tell you what death is ask me. I died for 5 seconds. plus I was clinically dead at the doctor’s office. My potassium level was7 normal is 4.2 to 5. If anyone has seen Austin Powers drinking poop quadruaple it    I attempted to drink it.  Started vomiting it. A Doctor was walking by…USE ANOTHER ORAFACE!!!! The butt. I was drowning. Needless to say , my children were screwed up again.. I called the oldest Brandon ,the youngest Nathan and a very nice gentleman if i wasn’t married I would marry him…SHAROn 14, MEGAN 11 and ALLEN!! I now take fludocrt and hydrocortisone @ 4:00 P.M.  everydyt. If I miss two consecutive days I will die.

I am also Bi polar I feel their is a correlation with Cushing’s disease. I take Depacote etc. 12 more pills plus hydrocortosone in the morning too! I Have 2 books at home Manic Depressive Disorder. By Fredrick Goodwin and Jay Jamison. Worth reading. Stated Cushing:s disease is derived and assossiated with bipolar. I believe I have been bi polar from birth.  Only episodes  I had as a child…TRAUMA!!!!! I now have addison’s disease too! What else could go wrong?

By the way, I have a theory  bipolar is assosiated chromosome 13.  I also think cancer is a virus. Hit or miss. Cushing’s is fatal i not treated properly. Adrenalectomies are the worst . Take Vicatin .I threw it at my husband I did not want to get addicted to it like House. I used ice 24/7. I won’t go into the detatails it was bad. If you do get one , move I used a swifter, and a cane. No wheel chair or death for me!! I’m a fighter!!

 

Thank you for allowing me me to tell my story. I want to write a book about my experiences. I hope there is a publisher out there so I can get my Life story across!!

 

Sincerely,,

 

Linda

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