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Debbie (flawdnotclawd), Steroid-Induced Bio

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I am a 55 yr. old female recently diagnosed with Cushing’s.

Previous diagnoses included: diabetes, HTN, asthma, Chronic Fatigue, Fibromyalgia, high triglyc/choles., IBS. Still in process of testing to determine cause. Had multiple steroid epidurals in past few years. Have had symptoms for over a year.

Doctors misdiagnosed Cushing’s as Chronic Fatigue, Fibromyalgia, anxiety, depression, hypochondria. So fed up with arrogant judgmental doctors.

Have a great endo now who diagnosed Cushings and doesn’t treat me like I’m nuts.

Candy (cjbritton), Undiagnosed Bio

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In seeing an endocrinologist about normalizing my thyroid levels (Hashimoto’s), he became suspicious of Cushing’s.

I was diagnosed with PCOS in 2006 with a suspected onset of 13-14. We’ve done one blood test that came back further pointing to Cushing’s along with the signs & symptoms (i.e. buffalo hump, moon face, sweating, ruddy complexion, etc…). I will be seeing another endocrinologist in the near future (current one is closing his practice & moving to the Middle East) to confirm a diagnosis of Cushing’s.

If I do have Cushing’s it has to be endogenous, as I do not take any steroid mediations that are known to cause exogenous Cushing’s. I take Nasonex periodically, but not any more than I absolutely have to & I’m told that is too small a dose to be a problem.

Wish me luck in getting answers.

Judi L (judi), Undiagnosed Bio

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I have been seeing the endo for the last couple of weeks.  Lots of blood tests, saliva test, 24 hour urine test.  Thyroid scan, with nodules, thyroid biopsy benign, small goiter,and diagnosed with hashimoto.

Currently type 2 diabetic fairly controlled with Victoza, but very insulin resistance.  First blood tests showed high cortisol, high ACTH, second series of blood tests showed normal to high cortisol and still high ACTH.  Doctor said possible cushings.  Have had extreme fatigue, beard on chin.  Muscle and bone pain consistently.  Wake up with headache and extreme fatigue.Bone scan diagnosed with osteopenia.  Appt. with endo tomorrow to get results of 24 hr. urine test.  Salavia test said was normal.

Have problems with sleep, sleep all day off and on, or have days when I cannot go to sleep at all.  She said that I had the hump, muffin top, and belly fat, lean arms and legs.  Eyes are puffy all the time now.  Have problems losing weight even though I eat healthy all the time, and have excluded gluten, sugar, and going to go diary free.  Eat lots of vegetables and fruit as well as a little protein.  Have not had a mri or cat scan yet.  Probably will be next on the list.  Will post after my doctor’s appt. tomorrow and update my bio.

I have a lot of symptoms of cushings and she mentioned this with my second doctors visit after the first series of blood test, but wanted to do other tests to make sure.

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

Laura C (Laura), Pituitary Bio

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In the early part of 2007 I was feeling very tired, was gaining weight even though I was eating 800 – 1000 calories a day and exercising 1 hour per day.  I would go to my doctor and she would dismiss me inferring that I was just an overweight, middle aged woman looking for a quick fix to loose weight and control my diabetes.  This went on for several months with me seeing her every 3 or 4 weeks with the same complaint.

Finally in mid 2007 I said enough was enough and demanded that she order some blood tests.   Well, she ordered  the 24 hour urine collection test for cortisol and lo and behold, my cortisol levels were off the chart.  I was immediately referred to my endo and after ruling out many other things with MRIs, CAT scans and full body scans with radioactive injections,

I was referred to my neuro surgeon and he saved my life.  The beginning of December of 2007, I had surgery to remove 1/2 of my pitutary gland that had micro (benign) tumors.  12 hours after surgery, my cortisol levels wer down to the high “normal” range.

Today, 5 years later, I have no cortisol issues at all and now my endo says I have a “history of Cushings disease”.

Peggy (concerned for spouse), Pituitary and Adrenal Bio

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I’m married to my best friend who’s health has steadily declined for around 15 years.  High Blood Pressure, Diabetes, weigt gain, mood change are part of the decline.

He had a pituitary tumor removed in May 2012 after a diagnosis of Cushings.  We know that he still has an adrenal tumor that the endocrinologist thinks was fed by the pituitary tumor.

My husband, my best friend, thinks they have ruined him forever.  He feels worse than ever before.  The doctors say it may take up to a year, that this has been coming on for a long time.  His blood pressure is now controlled and he has gone from 12 blood pressure pills a day down to 2 1/2 pills per day.  Other that that, he has a poor quality of life with no energy, no happiness.

I wish I knew more and could help and support him better.  I am the fixer in our life, our family, our business that we have worked in together for 10 years and I’m so sad for him.

Mary (TheGoat), Pituitary Bio

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I had 3 transphenoidal surgeries 1 month apart in 2003. I had a csf leak and when it was repaired the pituitary had become necrotic and I lost the whole gland.

They said that did not cure the cushings so I had a BLA in 2004.

I have had nothing but health problems since then. Diabetes, fatty liver disease, frequent adrenal insufficiency, severe anemia despite no periods,  vitamin d deficiency, and other strange things.

They are now working me up for the neuroendocrine carcinoid tumor in the stomach or small bowel. It has been quite a road and I am not sure if I would do this all again if I could.

Meriam, Pituitary Bio

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Hi, my name is Meriam from California, a 51 years old female. I was diagnosed with Cushing’s last August 2013.

I had all the typical symptoms (weight gain, edema, purple marks, bruising, aches all over the body, hair loss, depression, anxiety, uncontrolled diabetes, high blood pressure, high cholesterol, poor concentration, sleep apnea, etc.) I thought all of these problems was partly caused by my weight  gain (230 lbs.).  I underwent a gastric by-pass but still didn’t  lose weight that much.

Eventually. my body seems to shut down and had been and out of the ER. I suffered congestive heart failure, blood clot, blurred/double vision, colon inflamation, body pains and aches, myopathy but the hardest part was, I lost my ability to walk.

It was a rough year for me; been hospitalized for almost a year. Finally, after 6 months of suffering, my Endocrinologist was able to diagnosed me of having Cushings.

My pituitary gland was removed and was given the necessary treatments. As my cortisol level went down, most of my symptoms disappeared except for bouts of body aches and depression.

I am currently doing physical therapy to be able to walk on my own again. I lost weight and on the way to recovery.

My greatest fear is for the Cushing’s to come back and I do not want to undergo the same ordeal again.

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Shon (Shon), Undiagnosed Bio

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golden-oldie

 

Two months before my 31st birthday, I was diagnosed with diabetes. I was really shocked considering no other family member (maternal or paternal) had this disease.

Well, as the months followed, so did other diseases such as high blood pressure, high cholesterol, etc. Each diagnosis brought more shock because I felt great and could keep up with any 20 year old out there. Within the next two years I had gain 70 pounds and looked like an apple with popsicle sticks for legs. I also seemed to have more symptoms which seemed to be dismissed by the doctors because it was also a symptom of one of my other diseases.

In the past 8 1/2 years, I’ve had 3 doctors, 3 endocrinologists, a hemotologist, a nuerologist, and 2 cardiologists that just keep attaching my symptoms to one of the labels that has already been given to me. Now, at the age of 40, I feel like I have the body of an 80 y/o. I can hardly walk because of the clots in my legs (have 2 stints), can’t stand for long and bending just kills my back because of the crack in my L5 S1 vertebrae, and among other things, can’t seem to do anything because of the extreme fatigue I have. I have no doubt that I have diabetes, high blood pressure, high cholesterol, clotting problems with my arteries, and everything else they want to label me with, but it seems to me that after only 8 1/2 years, my health shouldn’t have gone down hill so fast. I also take 16 pills a day because each doctor wants to give me a medication for each symptom.

For a few years, I’ve been searching the internet for an answer. I would spend hours and seem to hit a brick wall each time. Still, I wasn’t going to give up. No one gets so sick that quickly from any of the diseases I’ve been diagnosed with. Just the other day, I was watching Mystery Diagnosis . I don’t even remember what it was about, but it did prompt me to start my internet search again. I did something different this time. I didn’t research all of my “diseases”. I simply typed in the search field: “Do any diseases mimic diabetes”. Guess what popped up all over my screen. Yep, Cushing’s Disease. I went to article after article and website after website. I was amazed to find that many of my symptoms were linked to Cushing’s Disease. I couldn’t believe what I was reading. My “diseases” could actually be a symptom of a bigger disease which would explain a lot to me. Now I have another endo which I’ve made an appointment with (a month away, yuk) and I’m going to ask to be tested specifically for Cushing’s Disease.

Below I’ll list my symptoms.

Round “Moon” Face, Fat Lump on Back of Neck, Low Potassium, High Cholesterol, High Blood Pressure, High Blood Sugar, Glucose Intolerance, Insulin Resistant, Muscle Weakness, Fatigue, Anxiety, Irritability, Depression, Decreased Fertility, Decreased Libido, Acne-like Rash, Backaches, Excess Facial or Chin Hair, Slow Healing Cuts or Scratches, Large Abdomen, Insomnia, Irregular Periods, Edema, Scalp Hair Loss, Excess Sweating, Memory Problems, Dizziness, Low Growth Hormone.

I also have a chronically high platelet and white blood cell count. The Hematologist couldn’t even figure it out (Yes, cancer has been ruled out with a bone marrow biopsy). I’m not sure if that has anything to do with Cushing’s or not, but unfortunately I have that as well.

Sometimes we tend to forget that many doctors only spend 7-10 minutes a visit speaking with us and forget about us about 7-10 minutes after leaving the room, and they certainly don’t lay awake at night thinking of us. It is much easier for them to treat a symptom that has already been issued a label rather than find a bigger cause for it, so we sometimes have to take matters into our own hands and help ourselves.

I’m thankful to have found this sight. If I find out that I do not have Cushing’s, I will continue my search, but it is nice to know that I will find an answer someday.

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Voices from the Past: Michele M (Michele), Adrenal Bio

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In December, 2018 I had my right adrenal gland and a pheochromocytoma removed.

Pathologist and endocrinologist diagnosed me with Cushings Disease.

I’ve also been Diabetic for 30 year.

Michele added her Helpful Doctor, Toni Murphy, to the Cushing’s MemberMap

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