Cushing’s Adventure
A few years ago one of my uncles needed a kidney. I was the correct blood type so I applied to see if I was a match. His clinic said I needed to lose about thirty pounds before they could do any testing. My husband suggested I join a program that had been successful for me in the past, but the weight didn’t budge. I really did not have the energy or the drive to exercise like I normally did; I became so frustrated with how little improvement I was seeing. That summer, I ran into a woman I knew who looked amazing and had the confidence I wanted so badly for myself. She was so kind and shared about a program that was working for her. I joined this program June 2018 because it felt promising to help me achieve my goals. I was over 200 lbs, more than I did during either of my two pregnancies. To me, this program seemed like my only hope. It was expensive but worth it if it would work. I lost 10 pounds in the first two weeks. Overall, I lost 20 pounds but couldn’t lose anymore than that.
I also noticed my hair starting to thin out. I was asking hair stylists and even a friend who did hair replacement what to do about my hair. They really did not have any answers and thought it was puzzling. At this time, I worked at a restaurant and was bartending. For the amount of lifting and running I did, you would have thought I would be thinner. One day, two of my high school classmates came in. They looked exactly the same as they did in high school. I introduced myself and we chatted. I was walking away and I overheard one of them say. “I didn’t even recognize her.” The other one said, “You have to look at just her face but even that has changed.” It was eye opening but I thought I just need to keep on the diet program.
I did stop the program later that summer when my menstrual cycle became irregular in August and September. I did not have a cycle at all October through December. It came back in January 2019 and my last period was March 26, 2019. Things had been stressful in our life. My grandpa passed away the previous Fall and a month later my uncle passed away. In May of 2019, I went to my primary doctor to report my irregular cycle. She noted my blood pressure was starting to elevate. I had just accepted a part time teaching position for the 2019 school year. She said the irregularities might be from the stress of the diet and everything else that has happened. In December 2019, I followed up with a new primary physician, as my previous doctor had moved out of town. She ordered blood work, referred me to gynecology for my now nonexistent cycle, and recommended I come back in 2-4 weeks because my blood pressure was elevated. She thought it was strange because I had no family or gestational history of high blood pressure. It felt as though she may have thought I was not telling the truth about my habits and self-care.
On January 21, 2020, I had an appointment to follow up on the elevated blood pressure with a nurse. I really did not understand how blood pressure worked or how it was read. I was always told my “numbers were perfect”. On this day my blood pressure was 182/116 and I weighed 200 lbs. The nurse was alarmed and tried to help me take deep breaths, meditate, and use aromatherapy to lower my blood pressure. It didn’t go down but rather went up. I told her there was a lot stress in my life – work, a friend dying, unhappy spouse, the pandemic – but that things would get better, I just needed time. I wanted to leave but she said she had to get a doctor in there right away and left the room. The on-call doctor, not my primary, came blasting into the room and said if I did not agree to medication on the spot, she was going to admit me to the hospital. I had to pick up my kids from school in less than a half hour so I agreed to start blood pressure medication. I thought this was a death sentence and I was going to have to be medicated for the rest of my life. I had worked hard to wean off of antidepressants after I had an episode in 2015. My husband had a procedure so I wouldn’t need to be on birth control pills. I was absolutely devastated to have to take medication. I asked if there were alternatives but she said we were beyond that.
I had a follow up the next month. My blood pressure remained high and the medication was adjusted. A few days later my kids had an outdoor group meeting, and I was anxious because we would need to climb uphill, my snow pants were tight, and my leg muscles felt non-existent. I didn’t really tell my husband how I was feeling, instead I made jokes about how my clothes did not fit. I was so large on my upper body but my legs were thin and purple looking. I think I nearly held my breath as I climbed that hill. When we got in the car later I must have looked awful because my husband asked if he needed to call 911. I said I was just stressed out and we should go home.
In March 2020, I met with a gynecologist. She did not do any exams or order any blood work. Only using what information had already been provided, she prescribed progesterone since I did not have a period. There was no explanation as to why I did not have my cycle. I was not in early menopause. My husband was so upset that no one had answers for me and they were only giving me more medications.
For the next year, there was a lot of blood pressure medication adjustments, medical messaging, home monitoring, and lab only visits due to the pandemic.
March 19, 2021 I had a follow up with my doctor after having to increase my blood pressure medication yet again. I reported to my doctor that I was very tired at preschool. I could no longer squat next to a table and stand back up. I had to use my whole body to get up. I used to be able to pick something up off the ground while holding both my kids and stand back up without using my hands. Now I was so tired all the time. My hands and feet would cramp when typing or even just laying in bed. I was given more medication to help. My doctor always said at every appointment that it really bugged her that she didn’t have an answer for me as to why my blood pressure was high. I could tell she trusted that I was doing what I could to make changes in my health but nothing was showing progress. I followed a low-sodium diet and cut out a lot of carbs. She suggested we start looking at my kidneys.
April 1, 2021 I had an ultrasound on my kidneys and everything was reported as normal functioning. While all this was happening I decided I was not enjoying my time as a teacher in the classroom. I was part time but if you know anything about teaching, it never really is part time. I needed a change so in May 2021 I interviewed for another position. It seemed like the right fit and a better schedule for our family although it would be year round. In all honesty, it was probably better for my kids to have a break from me. Things that never bothered me before, set me off. I had noticed my fuse was short and I had little to no patience for anyone. I wasn’t pleasant and I always felt on edge. One day I was having a hard day at home and my sweet neighbor boy came up to me and asked, “Is it tough for you to be a parent? You seem to be having a hard time.” I was so miserable inside. That same neighbor boy came up to me multiple times that summer and asked, “Are you sure you are not having another baby?” Physically, I felt disgusting.
The breaking point for me was when I noticed my shirts were not fitting the same around my neck. One night I was in the bathroom and noticed the hump on my back at the base of my neck. I went into our bedroom and asked my husband, “What the hell is this?” He touched it and couldn’t give me an answer if it was bone or a mass. I said maybe it is that iPhone evolution thing they talk about and I need a chiropractor. I just kind of let it go and figured it was because I was so overweight the fat needed a new place to accumulate. It went well with the purple stretch marks I had on my sides and breasts.
A few days later my husband sent me a text with a link and said, “Check this out. I think this is what you have.” I looked quick then ignored it. I thought to myself he’s not a doctor and neither is Google. A few days later I thought maybe I better look at it just so I could tell him he was wrong. I read through the symptoms and he was spot on. I had every single one. I sent it to my doctor on June 10th with the following message:
“My electrician husband, not a doctor, mind you, was researching the internet for me after I pointed out this fatty mass I have developed between my shoulders. I thought it was poor posture but he thinks I should be tested for Cushing’s Syndrome. He said it has all the symptoms I have experienced in the past year or so. Missed-to-no periods, weight gain in the upper body, purple skin, high blood pressure, hair loss, hump on back, weak legs, etc. Would cortisol levels have been tested in any of my previous blood work? I did not see it in any of my past results but I am not a doctor. Could I be tested for it?”
She responded saying it was appropriate for me to meet with an endocrinologist and gave me a referral. On June 21, 2021 I had that visit. The endo ordered a cortisol test stating its intent was to “rule out Cushing’s”. But in all the years of his career, I was about to be his first patient diagnosed with Cushing’s. I completed the lab work July 16. After receiving the lab results of a dexamethasone suppression test, he checked to make sure I’d actually taken the pill the night before the blood draw because my cortisol level was so high.
The following weekend we went to a fishing resort for a getaway. We took a fishing charter one night. When it came time to step up out of the boat, I instead fell onto the dock. I had no leg muscles to step up. I had to lay on my stomach and push myself up. It was mortifying. I was so glad it was dark as I am sure I looked like a beached whale. When we got back to our cabin my husband checked in with me, and I finally told him that it was as if I had no muscle in my legs anymore. I couldn’t take large steps up and I could barely make it up our basement stairs. He had no idea, I had been hiding it from him because I was so embarrassed and afraid of what he would think. He looked so hurt that I had kept this from him.
When we returned, near the end of July, the endocrinologist had me do a urine collection sample. The results August 1st indicated an adrenal adenoma. A CAT scan of my abdomen was next on August 13, 2021. It was a relief to know that the adenoma on my left adrenal gland was behind all these symptoms. I was a relief to know that I would be able to tell my kids, “Your mommy isn’t always going to be like this.” Once this was found, things moved rather quickly. On September 2 I had a consult with a surgeon. Surgery was scheduled for September 28, 2021. The night before my surgery I cried when I said goodnight to my kids. I knew I had a great surgeon and care team but I was so nervous something might go wrong being I had high blood pressure.
Surgery went great and required one overnight in the hospital to monitor my blood pressure. My recovery has gone fairly well. I was not prepared for how painful my stomach area would be after surgery but I only needed Tylenol for the pain. I started out with 20mg of prednisone replacement and have been weaning off since. In October 2021 I had a follow up appointment with my endocrinologist. He suggested I stop taking the progesterone and cut my prednisone pills in half until I run out.
On November 28th, we thought I should try to come completely off the prednisone as I had been on a low dose for quite some time. We were hopeful my other adrenal gland would have woken up. The next week I was tired and my body hurt, even my knuckles hurt. I had to really talk myself into moving at all. My menstrual cycle returned (and has been regular since). After a week the pain was too much and I asked my endo what to do. My labwork indicated I had no cortisol. I went back on 5mg of prednisone for two months.
By the end of January 2022 I was off of all blood pressure medications. February 15th I lowered my prednisone dose down to 4 mg and will be at that level for two months. I will slowly lower the dose until I see my endocrinologist again in June.
I am feeling pretty good. Mentally and emotionally, I feel so much better, back to my old self. I do have a little brain fog I notice with names and I rely more on lists. I have started losing weight but I know I can do better with exercise. It is hard in the winter because I am worried about falling on the ice since I now have low bone density, likely from Cushing’s syndrome. I also still have body aches and stiffness some days. Through this journey I learned Google just might be your friend. Always ask more questions and keep fighting. Have a team behind you who want answers and won’t give up on you. Some days, I really can’t believe my husband stayed with me. I was not a nice person and I certainly wasn’t the person he married both mentally and physically. I am so grateful he was persistent in helping me find the correct diagnosis and had all intentions to get me back.