Testing... Testing...

It's been a few years since I went through my journey of testing for Cushing's Syndrome. I remember the anticipation, fear, worry, horror, and just the jumble of emotions I was feeling at the time. I went through a number of doctors before I finally found someone who cared. A doctor who actually practiced medicine and wanted to find out what was wrong with me and help me get better. My primary care doctor figured out what was wrong with me the minute he walked in the room and saw me. We just had to jump through all the hoops and do all the testing. He ran blood tests, called within a couple of days and I was referred to an endocrinologist. My initial blood work showed a tumor of some sort in my body.

I was referred to the endo and we started testing.  I had previously been diagnosed with PCOS and pre-diabetes many years before the doctors suspected I had Cushing's Syndrome. I was put on Metformin at the time to help control these issues. I was still taking it.  When I was in the process of testing for Cushing's many of my tests were coming out in the low to normal range, especially my cortisol readings. I refused to let my endo delay me further in getting some kind of diagnosis. I had cried myself to sleep too many times. I was gaining weight at an alarming rate. I couldn't give up once I had finally found something that made sense. Something that I could get fixed. Something that would let me have a light at the end of my tunnel.  I ask my endo if it were possible that the medications I was on could be affecting my lab results.  He said there was a possibility. We discussed this at length and agreed to take me off all my medicines so my body would have a "normal" or "clean" result. I was supposed to be off all meds for a month but it took less than two weeks to have my blood sugar shoot up 600+. I was hospitalized to stabilize my blood sugar and my other tests were re-ordered. This time they came out pretty much by the book for Cushing's. My cortisol tested very high. So I finally had my answer. I still had to take the dex suppression test. I failed it. I was finally diagnosed with Cushing's.  Now, to figure out if it was a pituitary or adrenal tumor.  The blood test I had taken at my primary care doctors office had indicated an adrenal tumor. So, I was sent for an MRI of my abdomen.  I made sure to tell the technician that they were checking for a tumor on my adrenal glands.  I had already told my endo that they were going to find a tumor on my right adrenal gland. I even told him that I could pinpoint for him exactly where the tumor and adrenal gland were located at that time.  I had been having excruciating pain in my right side that would wake me up from a deep sleep.  It had started out happening maybe once or twice a month.  It was now to the point I could barely sleep.  I woke up numerous times a night in agonizing pain.  I even tried to sleep sitting up to see if that would help.  Trying to relieve as much pressure as possible from my back. 

Finally, the MRI results were in.  My endo called me personally, on a Saturday that he was NOT on call. He was supposed to be off. But, he knew I was anxiously awaiting my results, so he called me to say they were in. He knew I had access to my online records. He advised me to sit down, read over the test results, do the research he knew I would be doing, and then he scheduled an appointment with me for the following week so we could go over the test results in person. He said if I had any questions before that to feel free to call and ask him.  I went home immediately and read my results. Right side adrenal gland tumor. They could not tell if it were cancerous or not. They did recommend surgical intervention to remove the adrenal gland and tumor.  Finally, after all this time, I had a light. It wasn't real bright, but it was there.  I still had a lot to figure out and a lot to go through, but at least I knew which direction I was headed.

I tell this story just to let you know if you are in the testing stages of anything medical, don't get discouraged or give up.  You know your body better than anyone else does.  Discuss with your doctor any possibility that medication you may be taking could affect your test results. Try to look at all angles to figure out what your problem might be.  Good Luck and Good Health to all. I hope you find the answers you are looking for.