Cushing's Info

I'm a 32 year old female.  Like so many other people, I have had some minor medical issues that over time added up to one big mystery: mild anxiety, weight gain, headaches, acid reflux, IBS, insomnia, fatigue, male facial hair, tacchycardia, high cholesterol despite a clean diet, and anytime I exercised - I felt worse.

I went to my family physician because I was confused to why with my restricted diet and working out with a trainer, am I NOT losing any weight and rather I continue to get larger.  Also, I couldn't figure out that when I exercised I felt worse than when I didn't.  I've been active all my life with Ballet, kickboxing, jogging, etc. and now I can barely make it through one class.  She sent me off for some tests, an MRI (for the headaches) and a UFC.  Apparently, my UFC came back twice elevated, and the MRI showed a 2mm tumor on the pituitary.  She said she didn't know what that meant, and she sent my information to an endocrinologist.

On to the endocrinologist....he looked at me and said, "well you don't look like a Cushings patient, but your tests show it to be."  I had NO CLUE what Cushings was.  He explained about the illness and sent me off to get blood work done....I went home a cried...and I mean sobbed..well, test after test my levels were abnormal, and he was curious as to how I could have it even though I look different than before and I've gained weight but I wasn't obese.  He was sure that they caught it early enough to where I didn't look "cushingoid."  Nice, huh?

So, he sent me off for another MRI.  This one came back clean.  He ordered another UFC and two salivary tests....all abnormal.  He believed that I needed to be seen by someone with a distinguished history and experience with Cushings and he does research at a local university hospital.  So, he sent over my records to Dr. Auchus, and I went for my second opinion.  Mind you - throughout this whole time - I don't believe that this is what I have, but I didn't go to medical school.

Dr Auchus looks at my labs and says that while I don't look like a typical Cushings patient, he believes that I have Mild Cushings or Cyclic Cushings, but he wants - guess what - more tests!  So, he sent me for an IPSS.  Yeah - it came back and confirmed that the ACTH was coming from my pituitary and the left side.  Then they sent me for a 3T MRI.  Again, it came back as normal, but the stalk is shown to lean slightly, which is consistent with the IPSS tests.

Okay...well, he wanted one last test...this one is the GOLD STANDARD of tests.....I was thinking, "Why don't you START with that?" This test is the overnight cortisol draw every hour from 11pm to 6 am. Fun, huh?  Levels must be 7.5 or higher.  If they are below 5 two times or more - I do not have Cushings.  Well, my lowest score for the evening was 7.6.   He is convinced, but the surgeon is willing to wait 6 months for more testing.  He's worried that I may not be able to have kids (since I told him I would like to), he would like to see the tumor on the MRI (even though it doesn't always show), and he thinks that I don't look "that bad."  However, he does think that the surgery is a reasonable course of action and he offered his services.  They do a lost of research on Cushing here, and he's worked on a lot every year, but probably not as many as other surgeons.

I have to hope that with me having caught it early and me being younger that it'll work out for the best.  My surgery is scheduled for next week, and I'm scared out of my wits.  I guess I still don't 100% believe that this could happen, and this is what I have.  The Dr's don't know why the MRI's aren't picking up on the tumor, and I guess that's the one thing keeping me from believing.  I have to pray that the surgeon will go in there next week and that tumor will be right there for him to take.  My worst fear is that they won't find a darned thing, but I've got to remain positive, right?

I know that I have a long recovery right in front of me, but with a community like this - it has made all of this bearable.

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