The story of Serge
Hi,
I am a 37-year-old man from northern Ontario Canada. I have been diagnosed with ACTH dependent Cushing Disease secondary to a pituitary adenoma. I have went through Transsphenoidal Surgery in resection of such adenoma and currently in remission of Cushing. Leading towards this diagnosis and surgery was not the walk in the park years in the making and missed diagnosis, leading into years of suffering. My story started a few years ago.
I am a father of 3 children and living with my beautiful wife. I have always been a large man throughout my life struggling in that department all my life really. This (at the time) was believed to be the cause of my unexplained hypertension back in 2005, which resulted in the start of medical therapy at the time (metoprolol) at age 22. Moving on to several years later the hypertension got more intense and medical therapy became less responsive leading to more various types of medications with more and more side effects. Throughout the years, I’ve had random visits to the hospital due to episodes of headaches, chest pain etc… No one really understood and was frequently brushed off as being overweight etc… These trips also found a bicuspid aortic heart valve. The real start of the apparent saga was summer 2018 at that without realizing I was losing sleep more and more, walking 12 Km a day, going to the gym, swimming etc you name it I was not losing weight. I ended up by receiving a call from my family physician, which indicated blood in urine, and needed further testing. This started the motions of blood tests. As the summer progressed I found myself sleeping less and less (1-2 hours a night) while awake I would think of the day’s work, issues etc…
Only to wake up (or get out of the bed) not refreshed. Combine this with new work stressors I was heading for a burnout. I was starting to feel brain fog, dizziness every day, each day these periods of dizziness became more and more intense. I had booked vacations and stayed home in hopes to start sleeping again and restoring myself. This relief never came, vacations would just fly by. At the end of the summer we went out to camp I was to stay in the tent with my young son, that night felt like fire in me burning through my veins, I thought, “this is it I cannot continue this like it my night” I went back to work only to go see my doctor which could not explain anything and was official labeled burnout and put off sick. This was a first for me, never thought that I was going to go through something like this ever. While off weeks went by with NO relief in sight, I ventured in several medical avenues still nothing. It was believed sleep apnea which tests revealed that yes I was suffering and was put on CPAP. With not real results. I ended up booking a walking clinic in Toronto that is 10 hours or 750 Km away. They ran several test on with nothing definitive. However, what was revealed was a low Testosterone test (really low) I was a advised to follow up with my family doctor, which he did pursue. Serveral tests later, months we ran to the conclusion of unexplained low T. I was to start hormone replacement however felt too ill to do it. At that time now December, I went back to work. I said to myself let’s muscle through this must be in my head. I was seeing as well counselors and following their advice. I stayed in this state no sleeping at this, Dizzy, fatigued, brain fog for several months. Even ventured in the wrong way “alcohol wise” to finally attain sleep, although not restful. This proved to be worse in it’s own way.
Several months went by, my wife now pregnant with our third child, I went to the Dr again (Summer 2019) and said “I don’t feel good, I sucked it up for months, stayed working, seen counselors I proved to myself that I can function however something IS WRONG” This prompted tests after tests when finally revealed a low LH (Luteinizing hormone) which originates from the pituitary gland in my head. I was refered to and endocrinologist for further investigations. In the fall 2019 I was sent for an MRI, this revealed a 4 mm Pituitary Micro adenoma. However due to it’s size of it was not believed to be of any issues. Blood tests did not reveal any outstanding numbers, LH was low intermittently, testosterone was constantly Low, Cortisol was always high 400 average mmol (however always tested in the morning). I did go through a low dose overnight dexamethasone suppression test however results were not available at the time of the appointment. This came at a time near the end of the pregnancy so it was put on hold. Jan 2020 my wife gives birth, a beautiful healthy baby girl. However 10 days after the birth she suffered a massive heart attack in front of me while breastfeeding. We spent 1 and a half month in hospital (750 KM from home) where she was diagnosed with SCAD (Spontaneous coronary artery dissection) which required a double bypass to safe her life!
Now faced with this new challenge of taking care of her plus going through this yet to be diagnosed Cushings I put myself on hold. My blood pressure grew even more and more intense and out of control. While in the hospital I had a remote appointment with my endocrinologist and realizing that I did not suppress on the Dex test he ordered more tests including urine, tests, high and low does 2 day Dexamethasone tests. I did get these tests completed to show that I did not suppress the low dose and infact my Cortisol Urine shot up to 1355mmol. This confirmed in his mind that the tumor was in fact ACTH producing and was referred a Neuro Surgeon for further investigation. Upon a 24hour saliva test it showed that my cortisol was not in fact extremely high however it was always constant meaning that instead of going up in the morning and down at night it would just remain at 400 mmol low enough no not trigger any flags as it was always tested in the morning within the labs range for AM. We are now in april and Covid hit. This delayed everything I did not hear form the clinic for months until I called various times to get the message that they were not seeing anybody as this was not considered essential ??? I could barely function day-to-day taking over 150 pills a week. Finally the government gave the green light resume surgeries and the surgeon called stating that I will be going through surgery however with no timeline due to COVID…. Fall 2020 I did get a surgery date however it got cancelled twice due to triage and covid, I did travel over 3000 km in total back and forth trip to be sent back home.
I did get a hold of my MP which finally led to a date of Dec 2020 when I finally got my surgery. My cortisol crashed right after surgery indicating success I was put on hydrocortisone until my gland restarts (Present day). The pathology did reveal a ACTH hormone stained tumor which is the rarest of it’s kind. My blood presuure is now under control with less than 1/3 of BP meds. Looking forward to seeing what lies ahead! Thanks to an amazing Pituitary team I have regained my life! Still going through the remission however, I have a good outlook on it. I will have several MRI’s in the future however my blood work indicates no detectible cortisol currently (that’s 24hours after the last hydrocortisone)