× Cushing's Syndrome is a debilitating endocrine disorder characterized by excessive cortisol levels in the blood which may be the result of a tumor of the pituitary gland, adrenal glands or from tumors or cancer arising elsewhere in the body

Recovery from Cushing's??

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Replied by pnaadmin on topic Recovery from Cushing's??

We are actually familiar with Dr. Kirschner. Dr. Kirschner gave a presentation at a conference that we were at a few years ago. He is very knowledgeable, you are in good hands. 
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2 weeks 4 days ago #10674

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Replied by Spacehog on topic Recovery from Cushing's??

Thanks so much for the info!  I do have an appointment now for a doctor at Ohio State.  I didn't see his name on your list of doctors, but I think he specialized more in Cushing's syndrome than just pituitary stuff.  My endocrinologist said they will not address my low testosterone or ADH until we have a solution to the Cushing's, so I guess seeing a Cushing's expert makes the most sense.  I made some new friends online who also have Cushing's and they say my doctor (Kirschner) is the best at OSU, so that's good.  If you have heard anything about him let me know.  Here's his info:  wexnermedical.osu.edu/find-a-doctor/lawr...irschner-mdphd-19887
2 weeks 4 days ago #10673

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Replied by pnaadmin on topic Recovery from Cushing's??

Hello Spacehog,

I know that getting a diagnosis without all the answers can be scary. So the more you can educate yourself about Cushing's the better you will be. Finding our website and reading up on reliable information is very important. Even more important is finding pituitary specialists to treat you. Not all doctors have enough experience treating people with pituitary disorders so finding a specialist is very important to your future quality of life. Pituitary specialists also will order the proper hormone testing and correct MRI imaging so that they can determine the source of your Cushing's. Pituitary tumors can be difficult to see on an MRI, so the person reading your MRI's also needs to have experience. 

I cannot emphasize enough how important specialists are. To a pituitary specialist you are the kind of patient they see all day. To an inexperienced doctor you are their rare case. In this case you want to be every day, not rare. 

Here is a link to a list of pituitary specialists:

https://pituitary.org/medical-resources/physicians

Here is a link to a list of pituitary centers:

https://pituitary.org/medical-resources/hospitals

Here is a link to our page about Cushing's syndrome.

https://pituitary.org/knowledge-base/disorders/cushing-s-syndrome

This information was written by the experts and it will hopefully answer some of your questions. It is also important to note that everyone's case is different. Try not to let the experience of others worry you. What works for some may not work for others and your case will be individual to you.

I hope this information is helpful. Feel free to contact us if you would like additional information or if you have any other questions.

Take care,

Tammy Mazzella
Pituitary Network Association
(805) 499-9973 
[email protected]
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2 weeks 5 days ago #10671

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Recovery from Cushing's?? was created by Spacehog

Ahoy friends, I am new to this forum, new to pituitary issues and fairly ignorant to it all. I also joined a Cushing's Syndrome forum which kind of scared me. From the looks of it, people with Cushing's Syndrome (which I have) must die from it pretty often. If that is how it goes with me, I guess that's a bummer, but it is what it is. I know that sometimes people have a tumor or cyst removed that can fix the issue. However, I am more curious about folks who do not have any detected tumors but still have Cushing's. The reason for that is because I had an MRI done on my brain and they didn't find any tumors. It is worth mentioning that I was getting the MRI to check on an older brain injury in the front of my brain, so it wasn't targeting the pituitary gland area. However, they did still scan the pituitary gland and said it all looked fairly normal. But there must be something causing an issue because I have very low testosterone (caused by pituitary, not testicles). Also I have low ADH (a.k.a. Vasopressin) because of my pituitary gland. Those 2 in combination with the high cortisol leads me to believe that all 3 issues are connected to my pituitary gland. But if they find no surgical solution, then what should I expect? It seems like those 3 with no surgical solution adds up to a terminal condition. But I'm no doctor, so maybe I am being pessimistic. What do you guys think? Is Cushing's a terminal illness when no surgical options can fix it?
3 weeks 2 days ago #10669

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