Cushing's Disease

First of all I am so sorry you have the Cushings Disease, it is no fun. I just experienced this disease with my mom a year and half ago. My mom is 59 and has always been very healthy. Two years before being diagnosis Cushings, she kept having problems with high blood pressure. She never could find a BP medicine that didn't make her dizzy or tired, therefore she wouldn't take the meds and had to put in the hospital a few times for extremely high BP. Her regular doctor referred her to an Endocrinologist. He did the same test on my mom as you have and my mom's cortisol levels were through the roof too. My mom started having problems with her feet and hands swelling and then it went to her stomach and face. Before she had the surgery, her legs swelled and they got SO bad that I swear I thought they could explode!! The Endocrinologist finally referred my mom to the BEST doctor at UTSW (UT Southwestern) in Dallas, Dr. Michael McPhaul (you can google him and find his phone number as well). He was amazing and I recommend you see if your doctor can refer you to him. He knew more test that needed to be done than the Endocrinologist at Hugley didn't do or know to do. Dr McPhaul did find a small tumor on my mom's left adrenal gland. My mom got so sick that she couldn't care for herself and she had to live with me. The swealling made it hard for her to get around and the high blood pressure kept making her pass out. It was SO hard watching my mom go through this. She had the surgery to remove the left adrenal gland that had the tumor and the next day my mom said she felt SO SO much better. She had to take steriods for awhile to get the other adrenal glad to start working again. The tumor on the left adrenal kept the right one from working. Now it has been about a year now since her surgery. My mom is back to work and pretty much gets around like she use to. The swelling went away and my mom looks like my mom again. She has no problems with blood pressure anymore either. I know you talked about having a baby and obviously my mom is not having anymore children. But it sounds like you do not have cushings as bad as my mom did so I think if you can be seen by Dr McPhaul and get the surgery soon to remove the tumor you should recover very quickly and not have any problems conceiving later. Please let me know if you have any other questions.

Cushings, to the best of my knowledge, is treatable, but not curable. I don't think the condition itself will prevent you from getting pregnant, but the medications you may have to take just might (because it could harm the baby)... that part I'm not entirely sure about.

I know the treatment varies, depending in the cause. Cushings is not inherited, however, if someone else in your family has it, you're more genetically predisposed (meaning, while it's been proven to run in families, they can't tell you the exact link).

Keep talking with your doctors and ask them for more guidance as to where to gather more information. It's not a very common condition, so I think the resources you ARE able to find will be really, really informative and useful.

Good luck trying to conceive!

K.,
Lung carcinoids can sometimes cause this. Do you have any symptoms that would suggest you have lung issues?
I am really sorry you are having to deal with this. Sorry I cannot answer your questions.

I know you didn't ask this, but it might help now or down the road:

There is so much to my answer, but in a nutshell, Drenatrophin PMG from Standard Process can help a TON to regulate the adrenal glands and actually rebuild them, regardless of what the MRI comes up. Cushing's DOES have an impact on the adrenal glands AND the adrenals are an intricate part of the hormone/endocrine cycle.