Kathy was diagnosed with a pituitary tumor in 1991.
At the time the only symptom she was aware of was a severe headache. She had a transsphenoidal resection followed by radiation therapy for 23 days. They said they could not remove all of the tumor. She is now on Signifor and Cabergoline.
High schoolvl senior, I was finally diagnosed with Cushing’s Disease. Extreme leg pain, rapid heart rate and overall sick feeling drove this 17 year old nuts. Huge moonface, buffalo hump and torn skin on torso, stomach, thighs and arms did not help.
By the Grace of God, a brilliant pediatric endocrinologist found me and sent me to UCSF for transphenodal surgery. There, other genius pediatric physicians gawked at my monster appearance. The famous Dr. Charles Wilson went into action.
Six years later, my tumor grew back with a vengeance. My cortisol levels reached 3000 as a ferocious candida infection spread all over my body.
My second operation was followed with radiation treatments. I lost my baby shortly thereafter. Years later, childless and fatigued, I was informed that the radiation therapy caused the remainder of my pituitary gland to disintegrate.
I now have secondary Addison’s disease and nearly died one month ago from an acute adrenal crisis. I am lucky to be alive…..swollen and all.
Hi there, my name is Britt. I am 20. I am going in for testing with the UCSF clinic in one month!
I am scared and excited because I have had Cushing’s symptoms for 4 years now and NEED to find out what is wrong with me. I actually found this webpage looking for answers AND I had an idea after reading an article about doing a survey on Cushing’s and Blood Type. It’s self-reported of course but I’d appreciate it if anyone would take it, whether or not you’ve been diagnosed!
Kathy was diagnosed with a pituitary tumor in 1991.
At the time the only symptom she was aware of was a severe headache. She had a transsphenoidal resection followed by radiation therapy for 23 days. They said they could not remove all of the tumor. She is now on Signifor and Cabergoline.
My name is Kathy Casey. I am a 63 year old retired school nurse. I am married with two wonderful sons and a grandson. My husband and I live in the mountain town of Mt. Shasta in northern California. I have always been athletic.
In 1995, I was diagnosed with a pituitary tumor. At the time the only symptom I was aware of was a severe headache. I had a transphenoidal resection by Dr. Wilson at UCSF Medical Center followed by radiation therapy for 23 days. At the time they said they could not remove all of the tumor.
In 2008/2009. I exhibited symptoms of Cushing’s and my cortisol level was outrageous, and I had to be hospitalized initially for a potassium level of 2. I returned to UCSF and Dr. Anwar Sandeep operated . By removing part of the tumor. My Cushing symptoms resolved. However, he said that the tumor was not encapsulated and was invading the cavernous sinus and stella turcica so it was still not possible to remove it all.
I was OK until December 2013 when I began exhibiting the symptoms of Cushings. One of my 24 hr. urines was 14,000. I had to be hospitalized for a potassium level of 1.9. Dr. Heaney said he has never seen a cortisol level that high. This time I decided to go to the UCLA Pituitary Tumor and Endocrinology Program where they were more oriented to follow-up and treating this disorder. Dr. Bergsneider decided that surgery was not an option. He and Dr. Heaney decided radiation was not an option. So now I am being followed by Dr. Heaney to see if medication can help.
I am now on Cabergoline 0.5 mg three tabs twice a week and Signifor 0.9 mg subcutaneosly twice a day. I think they are alleviating some of the symptoms. However, the Signifor caused my blood sugar to rise, and I had to go on Metformin which is causing nausea to a point where I have a hard time eating.
Anyway, this whole situation is depressing and overwhelming. I am tryng to stay positive, but I wonder how it will turn out. I am fortunate to have a supportive and helpful husband.
I am interested in communicating with people who may be going through a similar experience and learning more about this rare condition.
Kathy will be interviewed May 7, 2014 in BlogTalkRadio
My name is Kathy Casey. I am a 63 year old retired school nurse. I am married with two wonderful sons and a grandson. My husband and I live in the mountain town of Mt. Shasta in northern California. I have always been athletic.
In 1995, I was diagnosed with a pituitary tumor. At the time the only symptom I was aware of was a severe headache. I had a transphenoidal resection by Dr. Wilson at UCSF Medical Center followed by radiation therapy for 23 days. At the time they said they could not remove all of the tumor.
In 2008/2009. I exhibited symptoms of Cushing’s and my cortisol level was outrageous, and I had to be hospitalized initially for a potassium level of 2. I returned to UCSF and Dr. Anwar Sandeep operated . By removing part of the tumor. My Cushing symptoms resolved. However, he said that the tumor was not encapsulated and was invading the cavernous sinus and stella turcica so it was still not possible to remove it all.
I was OK until December 2013 when I began exhibiting the symptoms of Cushings. One of my 24 hr. urines was 14,000. I had to be hospitalized for a potassium level of 1.9. Dr. Heaney said he has never seen a cortisol level that high. This time I decided to go to the UCLA Pituitary Tumor and Endocrinology Program where they were more oriented to follow-up and treating this disorder. Dr. Bergsneider decided that surgery was not an option. He and Dr. Heaney decided radiation was not an option. So now I am being followed by Dr. Heaney to see if medication can help.
I am now on Cabergoline 0.5 mg three tabs twice a week and Signifor 0.9 mg subcutaneosly twice a day. I think they are alleviating some of the symptoms. However, the Signifor caused my blood sugar to rise, and I had to go on Metformin which is causing nausea to a point where I have a hard time eating.
Anyway, this whole situation is depressing and overwhelming. I am tryng to stay positive, but I wonder how it will turn out. I am fortunate to have a supportive and helpful husband.
I am interested in communicating with people who may be going through a similar experience and learning more about this rare condition.
August 31st, 2010, I had a macroadenomas pituitary removed transsphenoidally by Sandeep Kunwar, MD at UCSF.
I displayed all the typical symptoms for years, but was not “officially” diagnosed until I developed pathological bone fractures. Even all the fractures were not recognized until a full body scan showed the multitude of fractures. I feel, with time, I do feel much better. My body will, of course, never be the same.
The most disturbing aspect for me at this point is memory loss and the inability to form words. I know words exist for what I’m trying to say… but I can’t remember what they are. And my short term memory is a constant problem.
I would love to know if anyone else is having these same issues. And anything else post surgery. It is so hard to stuggle with these memory issues with any social situation !!
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