Two Days Before My Birthday I Was diagnosed with Cushing’s Disease…
One thing about me is that I’m going to do all the research I can to figure out what is wrong with MY body or keep pushing till I get the answers. I have always been a huge advocate for health, no matter if it’s spiritual, mental, physical, or emotional, I take it seriously.
February
It all started at the beginning of this year while getting a facial I noticed I had excessive hair growth on my face after my esthetician performed derma-planning and she confirmed I have hormonal acne. Along with my menstrual cycle changing, excessive weight gain even though I was working out consistently, getting 7 hours of sleep but always feeling fatigue, and my hair changing, I started to be concerned and knew something had to be off with my hormones. I used to be a college athlete so I know how MY body should react after 3 months of high-intense working out, eating healthy, and I also earned a bachelor’s in Kinesiology so I know a little bit about the body. I started to look up my symptoms and noticed they pointed to PCOS so immediately set up an appointment with a doctor. After getting my lab results back, the doctor confirm I didn’t have PCOS but had elevated levels of prolactin, LDL, low vitamin D and my other hormones were good. She recommended a multi-vitmin, to stay away from potatos, and asked if I was pregnant since my prolatin levels were elevated. First of all, no I’m not pregnant and potatos… I love potatos but I already know that is not causing my issues. Even though that’s all my lab results showed, I still needed to figure out what was going on with my menstrual cycle and why I continued to gain weight.
March
Next, I went to the gynecologist. This was by far one of the worst doctor's appointment I have ever experienced. First off, my appointment was at 3 PM… she came in past 4 PM. Second, when I asked her how she was doing she replied “well it’s one of me and a lot of you!”…. As you can see, this appointment is already off to a bad start. When I informed her that my menstrual cycle was lighter than usual, basically to the point it is almost gone and that it went from being 5 days to 2 days she replied “ you know, some people wouldn’t mind their periods becoming lighter”. EXCUSE ME?!!.. I’m telling this doctor that there is an unusal change in MY body and that is what she tells me. At this point I have already decided that I will not be going back to her and will find another doctor. Plus she was rushing in the appointment, especially when performing my pap smear causing me to spot which never happens in my appointments becuase my past dotors took their time and she was quick to tell me that she would not be the one to inform me about my lab results because she will be on vacation for two weeks….GOOD BYE MA’AM. It was more to this appontment but I’m not about to get into it when they gave me my covid vaccine. That is for another day.
April
I set up an appointment with another gynecologist's office and the nurse practitioner I was paired with was amazing. As soon as she came into the room she wanted to read everything from my patient form before asking any questions. Once she noticed the date of my last period was March 19th and it was April 26th she immediately was concerned and started asking questions. I infomred her of my last appointment and presented her my previous lab results. She stated that they tested my hormones wrong, they were supposed to test it on the 3rd day of my period. She ordered lab results and progestrone to start my period. She respected that I didn’t want birth control to be a resolution to my issues but if it had to be an option after getting my lab results she wasn't going to put me on a strong one.
Once my lab results came in, someone else called to tell me my results and informed me that she had left the practice. I was so sad to hear that she left😭, I need to figure out where she is now lol. But anyways, my lab results came back, vitamin D was good, LDL and prolactin were still elevated but this time my creatinine levels were elevated. The nurse suggested to have a primary doctor check my kidneys.
June
At this point, I am tired of one giving 5 vitals of blood for the 3rd time this year, going to doctors, and paying medical bills. While in my primary doctor’s appointment, I told him all my symptoms (which have increased from the start of the year) and that I continue to gain weight even though I work out consistently and don’t eat bad AT ALL (okay, I might eat some sweets and fried food here and there but I mostly cook at home and it’s healthy). Anywayyys, after telling him my symptoms, for a minute I thought he was listening to me. He mentioned recommending me to an endocrinologist or a neurologist since I shake and my symptoms match thyroid issues. He ordered lab results but once I got them back he had his nurse inform me that my kidneys were good, LDL was still elevated so workout for 30 minutes and don’t eat fried foods or red meat… at this point, I’m pissed because I told this doctor that I burn 2000+ calories a day, I don’t eat badly and the reason I was seeing him was because of all of my symptoms that didn’t make sense. He didn’t recommend an endocrinologist but he did recommend a neurologist but when they called in July the next available appointment would be February 2nd, 2023…I still booked it even though I knew I would have an answer to what was going on with my body wayyyy before then.
August
Now don’t think I gave up there, since I didn’t have PCOS I figured my thyroid needed to be checked since my symptoms started to match hypothyroidism and it runs in my family. Thanks to one of my good friends, she recommended me to her endocrinologist. I contacted Arizona Endocrinology Center in June but the earliest appointment they had was August 9th. I walked into my appointment with my lab results printed on card stock paper (it was all I had at the time 😂). After my doctor went through my previous lab results she wanted to order more labs to check my hormones along with an MRI to check my pituitary gland.
September
On September 1st my endocrinologist informed me that there is a 7mm tumor on my pituitary gland which was causing my symptoms. Now what’s next…you guessed it. More lab results!!! My endocrinologist ordered more blood work, a 24-hour urine test, and a 3-day saliva test. Now my next appointment wasn’t until October 6th but I kept calling to see if there were any cancellations and lucky enough there was one. I got my appointment moved up to September 16th (yaaaaay)!
This appointment started a little different, my endocrinologist started asking more questions about my symptoms. We always wear mask in the office but this time she asked to pull it down to see my face. Next, she wanted to see my stomach to see if I had purple/pink stretch marks but they were on my sides along with wanting to know when I started noticing the weight gain.
On September 16th, two days before my birthday I was diagnosed with Cushing’s Disease. I have never heard of this disease but I was so relieved to finally have an answer after dealing with this allll year. My endocrinologist mentioned my vitals along with bloodwork were unusual because one of the tests where I had to take a steroid at 11 PM and get bloodwork at 8 AM didn’t respond the way it was supposed to but my 24-hour urine test confirmed it. The normal range of cortisol is 4.0 - 50.0 mcg/24 H but my 24-hour urine lab results came back as 518.2 H. She stated it was good I kept pushing because I caught it just in time. She next informed me that the mass needed to get removed and recommended me to a neurosurgeon. I immediately got my records faxed over to get an appointment set up ASAP.
On September 28th I had my appointment with Dr. Andrew Little, Chief, Skull Base Surgery Neurosurgeon at Barrow Neurological Institute, and discovered a little more about my tumor. My little friend is wrapped around my ophthalmic artery (yikes). The doctor mentioned since it’s wrapped he will need assistance from an ENT (ears, nose, & throat doctor) and they will try their best to get all of it but if not I will have to be on medication or do radiation. Also, that I’ll be in the hospital for 2 days and will probably have to take 3 weeks off from work.
October
So now I’m just waiting to see when they will be available for the surgery. When I called October 5th, a week after my neurosurgeon appointment for an update they were stating either November or December.
So today, October 11th, I gave the neurosurgeon office a call and I finally have a date set for surgery. November 21st I will be getting my little friend removed!
Well, got an update for you all! Gave the neurosurgeon a call again October 24th and they notified me that my surgery has been moved up to November 15th.
November
It’s November so let the countdown begin! Today, November 1st I had an appointment with my endocrinologist and it went well. Next, I’ll have an appointment with the ENT then before you know it the 15th will be here.
On November 9th, I had an ENT appointment with Dr. Griffin Santarelli at Barrow Neurological Institute. Since they will be performing endoscopic cranial surgery, he inserted a camera up my nose to see what he will be working with before surgery. I discovered that I have a deviated septum on the left side which is very common. Since my septum deviates, Dr. Santarelli will have to repair it to make the flow easier for Dr. Little to remove the tumor.
Next, he explained the recovery process and how I’ll have to use a sinus rinse two times a day to help with the healing process. He provided a sinus rinse bottle, suggested to start practicing before the surgery so it won’t be a surprise when using it, and a helpful video to demonstrate how to use the sinus rinse.
To be honest with you all, before this appointment I felt like I was in the unknown but after I felt a little more prepared for the surgery. As soon as I got home I looked up the video he suggested and boyyyyy I tell ya! It was a surprise lol. So happy I started practicing before the surgery because I do not like water up my nose.
Not only did I meet with my ENT that day but I also received a call from a nurse that’s the coordinator of the Cushing Disease support group. She made me feel even more comfortable and prepared for surgery because she informed me more about the support group and a video that explains what to expect before and after surgery (If you know me, I have to know every little detail before I do something so this set it over the bar).
Next is the pre-op appointment! Monday, November 14th was the 1st time at the hospital. It started at 8:15 AM with bloodwork, EKG, and instructions about what I needed to do the night before surgery. After the pre-op, I walked over to get an MRI. Everything came back normal so we were good to go for surgery the next day!
I arrived at the hospital at 9:15 AM on November 15th for check-in at 9:30 AM. Once I got to the room and prepared for surgery, the surgical team started to arrive to answer any questions I had before surgery. I didn’t have any questions...well, I had one, and that was how were they going to get this ring off my finger that I couldn’t get off the night before. I was trying to get it off for 30 minutes. I tried EVERYTHING!!
The surgery lasted about 3 hours. Oh, I mentioned earlier that my tumor was wrapped around my ophthalmic artery and they had to be very careful but I didn’t mention that if the artery was touched the wrong way it could cause a stroke or death 😅. Well, guess what, they got ALLL of the tumor so no radiation 🙌🏾!! They also got the ring off without breaking it! After surgery, I woke up very alert which surprised everyone and moved to the ICU to monitor my cortisol levels to make sure since the tumor was removed my levels will decrease.
The reference range is 3.0 ug/dl - 23.0 ug/dl, and for me to be able to go home my levels needed to be at 3.0 ug/dl. My first lab around 4 PM was at 34.7 ug/dl (High) and it started to decrease throughout the night. 10:15 PM it was 26.0 ug/dl (High), at 3:25 AM it was 7.1 ug/dl, at 8:06 AM it was 3.2 ug/dl and at 12:17 PM it dropped to 2.6 ug/dl (Low). The next day I was able to go home around 6 PM!
Man, it’s been a journey and I am so thankful God blessed me here in Arizona to be under the care of Dr. Little, Dr. Santarelli, the resident Nick, the anesthesiologist, and the nurses (Stacey, Alma, and Jen) at Barrow Neurological Institute!
Thank you to my family, friends, sisters (AKA and non-AKA), mentors, and Lululemon family for alllll of the support this year 💚!! I appreciate you all so much!
Now that my little friend is removed and my cortisol levels are back to normal, it’s time to be patient and recover! Check out my next blog Recovery Mode to read about the my recovery and when I started to notice symptoms after discovering the tumor!
