Getting Diagnosed

After the initial tests came back abnormal, it was clear to my doctor that I needed to see an endocrinologist. The wait for the endocrinologist was a bit frustrating. I phoned the office and they told me they weren’t even making phone calls to new potential patients for three months. I felt like I was SO close to getting answers but now I was so far away again. Another round of tests had come back though and I went back to the first locum I’d seen. I told her about the wait for the endocrinologist and she suggested I call the office again. Turns out she called as well and called other clinics and got me rushed into to see another endocrinologist within 2 weeks. She phoned me at home to be sure I’d been contacted by the office. I was truly touched by this doctor’s care and concern for me.

As soon as I got to the endocrinologist she took one look at me and my tests and diagnosed me as a classic case of Cushing’s. I brought her photos of myself from the past 2-3 years to show the progression of symptoms and she was totally blown away. She explained it a bit further to me, although I knew a lot already from my research. She was convinced my case was caused by a growth on my pituitary gland and explained the next set of tests for me. I was sent for an MRI with the hopes the tumour would be clear and we could go forward with surgery to remove it. I was a little worried because I had to fly to England right at this time to see my Nana who had fallen terminally ill with cancer. My doctor told me it would be fine to leave the country because I had probably been living with this for years so a few weeks wouldn’t matter. Luckily I was put on the urgent list for an MRI and got in right before I left. The MRI came back clear so I had to go for a CT scan of my lungs to rule out any lesions there. This returned clear also but they found a small lesion on my adrenal gland. I went back for a second CT (the power went out at the hospital right before I went in which didn’t help calm me!!) which came back relateively unchanged. My endocrinologist was not too concerned about this, nor was the radiologist, and was still convinced the problem was in my pituitary gland and sent an urgent request in to have an inferior petrosal venus sinus sampling done. I am scheduled to go have an MRI to reevaluate the lesion to be sure it is benign though.

The IPVSS was a scary one!! You are awake (although they did give me a little cocktail to calm my nerves) and they feed a catheter through a vein in your groin to your brain. It hurt a bit going in but I honestly didn’t feel much as the catheter traveled up to my brain. When it got to my neck though I started hearing crunching and squelching noises which was freaky. The whole thing took about an hour and a half and seemed intense – so many people in the room just for me? Anyway I spent the day in the hospital under the great care of a friend and then returned home to wait for results. Turns out you can’t be left alone for 24 hours after one of these procedures so it was a good thing I have great friends here in Calgary who took great care of me since my family lives so far away. They were willing to take the day off work to spend with me to make sure I was ok since I live alone. I feel so lucky to have such great people in my life - couldn't have made it through this without them.

The IPVSS was well worth it and we found out that it is indeed my pituitary that is the culprit. As soon as my doctor found out she sent an urgent referral to a neurosurgeon and I saw him within a few weeks. I was scheduled for an endoscopic transnasal transphenoidal removal of a pituitary adenoma in June. Going in for it I was still a bit unclear about it all and feeling apprehensive about it but it is nice to have a diagnosis and some hope that this might all go away. Time will tell.