In 2010, when symptoms began, I experienced pain in the kidney area and lower back when exercising. Since my dad and sister had been diagnosed with polycystic kidney disease, I got my kidneys checked, but the results were negative.
In 2012, while running on the treadmill, I experienced leg pain. The pain got substantially worse over the next few days as I could barely walk. I went to an orthopedic doctor who diagnosed a torn tendon. I had to wear a cast for 6 weeks, but I was able to run again, and in fact competed in a race in April 2013. After the race, I got my blood sugar and blood pressure tested for free. My blood sugar came back over 165. I was shocked! I didn’t eat anything before the race and thought maybe that was why. I ate a granola bar and came back 15 minutes later and it was still off the charts. I went to the doctor the following week and was instructed to monitor my glucose and eat before I run. This seems to be the point at which I noticed I was not completely normal.In May 2014, I was diagnosed with anxiety and depression. I still had pain in my back and on the right side of my stomach which made me think something was still wrong with my kidneys and sciatic nerve. I began getting tingling in my legs and face. I was stressed and short-tempered all the time and I didn’t know why. I was told it sounded like anxiety attacks, which I am sure they were.
I also started having trouble with my tongue. After eating anything my tongue would burn. I noticed that I had white, longer looking taste buds. I thought it was something I was eating so I tried cutting out foods, which had no effect. Nothing was helping; could it be anxiety, my imagination or is something really wrong with me? I googled burning tongue and lots of things came up; geographic tongue, burning mouth syndrome, and thrush. In July 2014, I saw a doctor, was diagnosed with thrush and treated with medication for 2 weeks. The medication seemed to help, but the burning was still there. A month later, I asked the doctor if he thought the thrush had resolved. He said, “No, it looks like you still have it.” I mentioned to him that I also had peach fuzz on my face, lots of dark hair on my belly, and dark pigmented spots on my face. He thought my body was definitely out of whack because of the thrush and ordered hormone tests. This is when they found high cortisol levels. The doctor referred me to an endocrinologist.
The endocrinology appointment was scheduled for November 3, 2014, three months later. I put myself on the cancellation list and got in rather quickly. At the endocrinologist visit on September 30, the doctor walked in and said, “Wow, you are not what I was expecting to see.” He started talking about Cushing’s and the symptoms of Cushing’s syndrome. I am 5’3, 110 pounds, an avid runner, and I eat pretty well. I have very thin arms with bulky muscles. My veins are very visible, and I have very dry, red hands. The red hands started 2–3 years ago and I was told it was Reynaud’s disease. The red hands really bother me; they look very old for my age and it is embarrassing. The doctor ordered an ACTH test and two 24-hour urine tests because my blood cortisol results were very concerning. Both tests confirmed Cushing’s. My ACTH levels indicated that it most likely was a pituitary tumor. I had an MRI a week later, which showed a 6.5–7 mm tumor on my pituitary gland. I was then referred to a neurosurgeon. I was able to meet with the neurosurgeon a week later at the monthly pituitary clinic at the University of Utah. The neurosurgeon ordered two nighttime saliva tests, a week a part, and the results were two to three times normal. I was scheduled for transsphenoidal pituitary surgery on December 9, which scared me to death.
Before surgery, I started noticing weakness in my muscles, and my body ached sometimes. The hair on my head had been falling out for many months, but I thought it was from nursing and a bad hair coloring! I kept finding more symptoms, which I had not previously noticed. My face was getting rounder. I was cold all the time and believed I was losing feeling in my fingers. It was very hard to distinguish between hot and cold. My memory was horrible. I got acne under my chin and on the sides of my face. I was obsessive about everything. I was very antisocial, thinking that everyone was judging me or looking at my face, hair, and hands. I felt so bad for my girls and husband. However, I believe my obsession with my tongue and peach fuzz saved my life. I tried to be positive for the steps forward.I e-mailed a friend I met through the Cushing’s Support and Research Foundation (CSRF). I read her positive pituitary surgery story and had to talk to her. One of her suggestions was to gather all of my “guardian angels” for surgery, meaning my family. I had never looked at my family this way, and this gave me a new outlook. Some of my guardian angels drove 2–3 hours from my hometown to support me. I cannot thank them enough. My surgery was scheduled for 10:30 am on December 9, 2014 at the University of Utah Hospital about an hour and a half from home. This was the scariest day of my life and I kept telling myself to be strong, be positive, be cured!
After surgery, I had pain in my left ear, teeth and discomfort in my head for which I took Tylenol. My cortisol reading going into surgery was 35. The first day and days following surgery my cortisol dropped to 18, 7, and 1.1, which was the best news ever. I was then started on 20 mg of hydrocortisone in the morning and 10 mg in the evening. I was also told not to sneeze, blow my nose, or suck from a straw. Trying not to sneeze… impossible!!
When released from the hospital, my husband and three girls took great care of me. I love them so very much and can’t thank them enough.!! My body felt achy in different areas throughout the day, and I couldn’t taste anything in the hospital but the chocolate chip cookie I had for lunch one day. Yummy! Bring on the chocolate!! It was the only thing I could taste for over a month.
Headaches on the left side of my head and pain in my left ear continued for about a month. Even before surgery I had problems with my left ear probably from getting tubes in my ears as a child. When I bent over, I could feel and hear the blood flowing to my head, kind of like when you get up too fast. After surgery this was very bad but has gotten significantly better. I have also noticed that after I shower my skin is very itchy. The hair growth on my face and body has slowed. My hands were not red in the hospital, but they are red again now. They are still very dry and very cold all the time. I think I do have Raynaud’s disease. I believe the pigment spots on my face, which I was told was Melasma from pregnancy, have gotten better too. As for my tongue, it still feels weird, especially when I eat sugary things, but it is defiantly getting better.
At the follow up appointment with the neurosurgeon and endocrinologist a month after surgery, I was told my surgery was very routine. The tumor was benign and came right out, like a ball. The cells of the tumor were 15% atypical, which is 5% higher than desired. I was told this suggests a greater possibility of recurrence compared to someone who has a typical value. I will need a MRI with contrast in 6 months to examine my sinuses and pituitary healing. I was also told I can now blow my nose, run again, use a straw, lift 20 pounds, and go swimming. I am still scared to go running, but eventually I will. I started walking a mile a day on the treadmill and am gradually increasing the distance. My hydrocortisone was also reduced to 15 mg in the morning and 5 mg in the evening. I also take omeprazole for heartburn. My cortisol and ACTH are still low, so I guess it will just take more time
I am so thankful to be on the road to recovery and cannot thank everyone enough who helped me throughout all of this. I love each and every one of them dearly. The road ahead looks great and exciting. Thank you! I live in Tremonton, Utah. It is a very small town. Meeting friends who would like to chat and support each other would be fabulous. Please contact me.
Newsletter: Spring, 2015