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Summer J (Summer84), Pituitary Bio

May 6, 2018

MaryO Pituitary, Pituitary Surgery, Treatments , , , , , , Leave a comment

Hello my name is summer

When I turn 30 I started having a lot of health problems by my 31st birthday I had a kidney stone that was the size of a cherry pit. After having multiple lipotripsy used to have that kidney stone removed the doctor insisted that I go and see a primary physician, by that time I haven’t seen a doctor in quite some time I have been treated for severe pain and all they would tell me they could make me comfortable but that they could not do anything for me so I stopped going.

My first doctor’s appointment with my new primary physician she asked me why it had been so long since I’ve seen a doctor and I told her that I was scared she told me that there was nothing to be scared about within three months of my first appointment she told me that she thought I had Cushing’s and that we needed to figure out if it was syndrome or disease.

She sent me to a endocrinologist and the first thing he told me was nobody has Cushing’s don’t worry about it the in endocrionologist apologized one month later and referred me to University of California San Francisco. The endocrinologist department at the University was able to discover that it was Cushing’s Disease after taking blood from my pituitary gland , I was introduced to the neurosurgery department and we scheduled my surgery my tumor was removed 1-24-17 . I was giving steroids and an appointment the following month as I reduced my steroid use I got sicker and sicker and ended up in the hospital unable to make it to my doctor’s appointment.

Unfortunately I was not prescribed anymore steroids. When I was finally well enough to make the journey to my doctors they realize their mistake apologized and changed their policies unfortunately during that year I was very sick in and out of the ICU. Neurosurgeon and my new endocrinologist were very surprised that I was able to survive not having any support. They had mentioned that they believe I had a very high long term exposure and that I had gone into shock multiple times. Its now been a year in a couple months and I’m feeling better , Im still having incredibly fatigued and have horrible insomnia but things are looking up.

PS .if this doesn’t make sense I have a little brain fog sorry…

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sjw (Jane W), Adrenal Bio

May 5, 2018

MaryO Adrenal, Diabetes, Korlym, Other Diagnosis, Treatments , , , , , , , , , , , , , Leave a comment

My name is Jane and I am 76 years old. I was recently diagnosed with Cushing’s Syndrome after years and years and years of suffering symptoms.

My doctor for the past 7 years said that I had pre diabetes, high cholesterol, high blood pressure, chronic kidney disease, fatty liver, asthma, emphysema, obesity, anxiety and depression. She missed that I have actual diabetes and often told me that if I would only eat right a lot of these problems would go away. She missed the leaky heart valve, COPD, and most important, the Cushing’s.

in 1997 another doctor told me that I had a harmless tumor on top of my kidney. He said it was nothing.I shouldn’t worry about it, just forget about it, it was nothing, That was about the time my weight began to go out of control. So for at least 30 years I have not known what was wrong with me.

I spent 2 weeks in the hospital with depression while on a 600 calorie diet and I gained weight. My new endocrinologist said he was scared when he first saw me. But he has promised to take care of me because nobody else has. He has started me on Korlym and I was feeling a lot better at 3 weeks, after losing 17 pounds with no effort. Now though, I have started a new trial. This new drug does not block the progestin so in the long run will be better for me.

We shall see. I can only hope.

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Pam M (mapgirl23), Undiagnosed Bio

May 4, 2018

MaryO Undiagnosed , , , , , , , , , Leave a comment

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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