Want to connect with other Cushing's disease Patients

Posted by gretchenmpls @gretchenmpls, Sep 14, 2023

I was diagnosed with Cushing's in 2020. I had a pituitary adenoma. Surgery was successful, however the post-op treatment was not. Education for patients as to what to expect after surgery and how to handle steroid tapering is not terribly well distributed. I since joined the Cushing's Support and Research Foundation and live in Minneapolis. Since Mayo is so close to me, I'd love to connect with more Cushing's patients and see if there is interest that would prompt Mayo to host a Patient Education Day for Cushing's Disease. Any takers out there? You don't even have to be in Minnesota, just would love to have people connect with Cushing's Support and Research Foundation to support other patients going through the tough journey that we have.

Interested in more discussions like this? Go to the Diabetes & Endocrine System Support Group.

I had blood work done and my cortisol levels are high. I am waiting to see an endocrinologist. Has anyone else been diagnosed with this or adrenal issues? I’ve been a long hauler since Nov 2020 I had an MRI of the brain that showed partial empty sella syndrome but I was told not to worry about it. I’m going to ask the endocrinologist to do another MRI and check for a pituitary tumor.

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@colleenyoung

@gretchenmpls, my first recommendation is that you mark your calendar to attend CareThatFits (https://carethatfits.org/) at Mayo Clinic next year - September? 2024

Read more about patient and physician participation at the annual conference here: https://carethatfits.org/conferences/

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Hello Colleen @colleenyoung ,
I checked the Care That Fits calendar and it looks like there isn't any information posted yet for September. Is your recommendation to attend that conference to see how something could work for a patient day for Cushing's in the future? Or what is is that feel is most important for attending? Thank you for your guidance.

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@longhaulerjess

I had blood work done and my cortisol levels are high. I am waiting to see an endocrinologist. Has anyone else been diagnosed with this or adrenal issues? I’ve been a long hauler since Nov 2020 I had an MRI of the brain that showed partial empty sella syndrome but I was told not to worry about it. I’m going to ask the endocrinologist to do another MRI and check for a pituitary tumor.

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@longhaulerjess, I moved your post looking for members who have Cushing's discussion to this existing discussion:
- Want to connect with other Cushing's disease Patients
https://connect.mayoclinic.org/discussion/cushings-patient-education-day/

I did this so you can connect with @gretchenmpls @cheryl1 @jmb73 @astaingegerdm @dmedina71 and others.

How are you doing? Did you have a consult with an endocrinologist?

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@colleenyoung

@longhaulerjess, I moved your post looking for members who have Cushing's discussion to this existing discussion:
- Want to connect with other Cushing's disease Patients
https://connect.mayoclinic.org/discussion/cushings-patient-education-day/

I did this so you can connect with @gretchenmpls @cheryl1 @jmb73 @astaingegerdm @dmedina71 and others.

How are you doing? Did you have a consult with an endocrinologist?

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Thank you! Not yet my appointment is on July 24. So many physicians are booked.

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I have Cushings Disease for the fourth time. I’ve had 4 pituitary tumors. 3 failed surgeries. I Just started on Isturisa medication and will start radiation in a week.

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