The pituitary gland
I was diagnosed with Cushing’s Disease in September 2012. I started my search for a diagnosis back in March.
So here is how my story goes… in January of 2012, I decided that i was going to change my diet and exercise. I had weight to lose from a previous pregnancy. I began working with a nutrionist and personal trainer. I spent a lot of time working out and logging everything that went into my mouth. I even tracked my water intake. It became very obvious that for a hard as I was working that something was wrong. i was gaining weight instead of losing. I was also feeling very run down. I had also started noticing that I did not have very many patience for much of anything and I felt very uptight about silly stuff. I decided to go have my hormones checked.
At first the doctor told me that I was extremely deficiet on vitamin D and needed to drink a lot more water. He said we need to run more tests. He did a salivary test and some bloodwork to check my corisol levels. On my follow up with him he said that i had very high cortisol levels and wanted to run more test. He then went on vacation for a few weeks. I was unable to get answers from his nurse and then he was so behind when he came back that i could never get an appointment.
I started researching on the interenet about high cortisol levels. Everything that I was reading sounded like me. Weight gain (i had gained 100 lb), exhaustion, stretch marks, blurred vision, high blood pressure, water retention, etc. I found another endocrinologist and made an appointment. I told him all my symptoms and what I felt was wrong with me. He asked me what i wanted him to do. I suggested some of the tests that I had read about because I thought i might have cushings and he said, “ok, let’s get started but, cushings is very rare and I doubt that is what is going on”.
After running blood work, 24 urine test, plus many more test, he told me that I had Cushing’s Syndrome. He indicated that this was very rare and that he had not seen but one case before. He ordered an MRI. The radiologist that read my MRI said that he did not see a tumor. However, he did say that he saw “sinus disease”. Now I have never hear of that so i questioned it. I was told that I would need to go to a ENT doctor for learn more about that.
The endo doc wanted to proceed with the IPSS test. I keep studying on the interenet about the disease and all the testing. I even watched a few pituitary surgeries. I just felt like I need to know everything possible besides, I could not sleep so this was a great way to spend hours. I also kept reading all that I could on this site as well. I met with a local neurosurgeon and he scheduled the IPSS test. I asked him about how we would proceed if my test results showed positive for a pit tumor. I was basically told since no tumor was seen in my MRI that the IPSS test would help them to decided which side of my pit they would take. I was totally not comfortable with just losing part of my master gland. I kept my scheduled test but started to research experts in cushing’s. Then I researched which were covered by my insurance.
In the meantime, I kept the appointment for the IPSS since I didnt want to lose any time. I checked into the hospital and got prepped for my test only to have the doctor come in to tell me that we would not be doing the procedure because the company that made the medications used for testing no longer was making the mediation. Now then, how do you not know this before you prep someone for the procedure?!?! I told the doctor that there were other hospital that were treating cushing patients and were performing this test. I had been reading about them on the boards. He told me that there was not anyone in the US that had the meds. That was when I really knew that I was going to have to leave my state to get treatment.
I called my endo and explained what had happend and asked for a referral to MD Anderson in Houston, TX. I also went online and did a self referral. I just kept following up with them. They have a pituitary tumor board that reviews cases. My case was approved and I had my first appointment in Sept 2011. I spent on day running tests, having an MRI and meeting with the a new endo.
Within 48 hours, he confirmed that I did have cushing’s disease and showed me the tumor on my pituitary. In November 2011, I underwent transphenoidal pit surgery. An 8mm tumor was removed. There was some concern because the tumor was right up against my cavernous sinus cavity. This is where your carotid artery is and the surgeon did not want to get close to this artery.
Unfortunalely, I did not experince a “crash” after surgery. My levels did indicate they were in the normal range so the doctors sent me home with a perscription of hydrocortisone.
English: Cavernous sinus (Photo credit: Wikipedia)
for me. He is going to confer with my endocrinologist and then I will go from there.
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