My name is Melissa and I am 54 years old and live in the Boise, Idaho area. I am 11 months post op adrenalectomy due to a functional tumor that caused my Cushing’s syndrome. I have a 20-year career in the military followed by work as an Occupational Therapist. I was adopted by a loving family, so entered my Cushing’s journey with no medical history. Thankfully I have a wonderful supportive husband. I was also recently diagnosed with a pituitary tumor (prolactinoma) causing increased prolactin and growth hormone. My pituitary tumor is being treated with a medicine called Cabergoline.
In the past 30 years I have had every female hormone problem I could imagine. Fibrocystic breasts, benign breast lumps, ovarian cysts with one ovary removed, uterine fibroids, severe endometriosis, polyps, hysterectomy, frequent urinary tract infections, and surgeries needed to remove adhering scar tissue on numerous organs and a twisted colon from them.
In the last 10 years I started developing chronic fatigue, frequent infections in the form of shingles on my arms and legs only, severe hot flashes and night sweats (menopausal), hypothyroidism, losing my hair, high blood pressure, high cholesterol, hepatic hemangiomas (non-cancerous liver masses), pre-diabetes A1C number 5.8, and peripheral neuropathy in my toes. I was put on estrogen, thyroid, and blood pressure (diuretic form) medicine. I gained about 20-25 pounds, but I wouldn’t say I had the moon face or excessive weight gain like some.
In 2018, I had my first ER visit. My blood pressure elevated to 174/108, and I was having a visual disturbance in my left eye seeing color patterns like a sideways rainbow. They did a retinal ultrasound and EKG, which were normal. I was referred to an ophthalmologist who said I had a migraine with a visual aura without the headache. He actually showed me the picture I had seen in my eye. He said it was probably related to high blood pressure and from all my hormone imbalances. In the same year I had the shingles 4x, started getting more urinary tract infections, poor sleep, and unbearable hot flashes/ night sweats. I had just finished Cipro for a UTI when I started developing extreme symptoms such as headaches, vertigo (dizziness), panic attacks, excessive fear, loud heartbeat in my head, racing thoughts, inability to calm myself, crying, no sleep, no eating, difficult getting water down, nausea, blurred vision, worsening numb toes and feet, tingling down arms and legs, and chest pain.
In January 2019, I ended up at the ER and urgent care twice in one weekend. My diagnoses were generalized anxiety disorder, non-specific chest pain, low potassium, and vertigo. I was given anti-anxiety meds, taken off the diuretic blood pressure medicine (supposedly causing loss of potassium), and referred to a cardiologist. I was in panic mode every day. I had a hard time in enclosed spaces, offices, buildings, and at church. Fear of future, and an overwhelming dread that I just couldn’t explain. I couldn’t concentrate and was pacing a lot. Blood pressure would elevate throughout day causing my heart rate to get louder. I felt panicked and anxious around people and did not feel normal. I hadn’t been able to eat much and during this time lost 25 pounds before diagnosis. Go figure? I kept saying something is wrong with me.
A little note about me concerning the anxiety – this was not me and never had been me. I am 20 years retired military and worked on jet airplanes, flew in Air Force jets/ helicopters, jumped out of planes skydiving, retrained as an EMT in the emergency room, traveled all over Europe, and river rafted many Class 4 rivers. Now I am diagnosed with a sudden anxiety disorder with no apparent reason. NO!
The cardiologist had me wear a halter monitor taped to my chest for two weeks, and I had a stress test/echocardiogram. I passed with excellent results. My Primary Care doctor on the other hand said I was too low on my estrogen and my menopause was worsening. She increased my estrogen, adjusted my thyroid medicine, changed my blood pressure medicine, and gave me anti-anxiety medicine with a recommendation to see a psychiatrist for counseling.
I was able to get a same-day cancellation with a psychiatrist and counselor who increased my anxiety medicine. The counselor taught me breathing techniques, but it was a battle keeping the anxiety and racing thoughts in check. I would look at her like this was a monumental task. I didn’t know if I could do it. She would tell me I have to get this under control, or it would get worse. I’m that military girl who follows directions, but at the same time crying out to the Lord with such desperation assuming I now had an anxiety disorder. My meds were barely helping, and I was fighting to not take more than recommended. I couldn’t sleep and I honestly wished I would not wake up when I did sleep. I know that it’s not Gods plan for me or anyone, but I now understand what a struggle this is for some in the mental health network. I just had to endure the 4-6 weeks until the medicines kicked in I guess.
At one point I literally wanted to be admitted for psychiatric treatment. I had the back of my car packed with my wonderful scripture quilt, meds, bible, worship music and therapeutic coloring books ready to be admitted. I couldn’t take it anymore, but my husband talked me out of it and helped calm me down. My brother helped a few nights to calm me being a substance abuse counselor, for which I will be forever grateful. I had my Lord Jesus, family, tons of prayers, and church support. I was an open book and I didn’t care.
I prayed and sought the Lord which prompted me to make an appointment with an endocrinologist while this was all happening, and without my family practitioner knowing. I was to wait over a month. My symptoms continued to increase, and I was still in panic mode. I was struggling to follow up with doctors, and to go out in the public for family and church events. I would take long walks praying trying to keep my anxiety and fears at bay, hoping I wouldn’t lose my husband and sanity. My poor husband didn’t know what to do for me. I remember thinking how could he put up with this and what if he leaves me. I probably wouldn’t blame him. I would too, but Lord willing he was there for me.
God was watching over me and guiding me, and again I was prompted to call every day for a cancellation to the endocrinologist. The first day I called they had one rare cancellation that very afternoon. She was so wonderful – I did lots of blood tests and 24 hour urine tests, which started to reveal pituitary and/or adrenal malfunctions. My doctor even called me over the weekend to tell me I had failed the overnight dexamethasone test miserably, and referred me for a CT scan. The results were two left adrenal gland nodules. One of the nodules became functional causing excess cortisol. I was in continuous fight or flight mode. You are so right when you feel overjoyed to the point of crying to get a diagnosis that there was something going on, and you aren’t just a crazed human being.
I was referred for surgery. I remember my surgeon telling me that some people get psychotic symptoms with this diagnosis. I said yes that was me. Unfortunately I had to wait a month for surgery, but the day finally came in April 2019. They removed my adrenal gland and the benign tumors. I was put on hydrocortisone meds until my other adrenal kicks back in. It has been a rollercoaster. I have been tapering down on my steroids for the last 11 months. I still get similar symptoms, especially crying and emotional instability. Of course I get the sore joints and muscles with difficulty waking up and moving in the morning. Mostly hip, lower back, and knee pain. I still need meds for sleep and the hot flashes/night sweats. My cortisol and ACTH are still very low. Also, I cannot get my thyroid regulated.
Unfortunately, we also discovered I have a pituitary tumor. My prolactin and growth hormone levels had been elevated. MRI revealed a 6mm microadenoma (prolactinoma). Thankfully Cabergoline is a medicine that can reduce its size and lower these hormones. I am hoping this was my missing link that was affecting my continued mental issues.
On a positive note my blood pressure has been normal without medication. I am not pre-diabetic anymore. My A1C went from 5.8 to 5.4. I haven’t had shingles or a UTI for over a year, and I’m not wearing glasses anymore. My cholesterol is still slightly high, but my endocrinologist wants me to wait before taking statins.
One special surprise this diagnosis brought about was that it prompted me to search for my biological parents and medical history, since I was adopted. I now have new relationships with my birth father and two new half-sisters that I am enjoying getting to know. God is good.
God amazes me with how our complex bodies work, and how our hormones are connected to every system. You just have to have the right balance to function. Cushing’s and hormone imbalances are real, unexplainable at times, more common then we think, and very hard to go through. But yes you can get through. It requires patience and endurance, and a diagnosis. I also have a huge empathy now for people who struggle with unbalanced mental and hormonal health. I was so scared at times that my only hope was in my Lord and Savior Jesus who was my refuge and who held me together. I am still a work in progress and am hoping and praying I will come out of this with few scars, but I am preparing for God’s will either way.
Please email me if you need support or encouragement. I would also love to speak with others who understand what I have gone through – there are little support services or others to talk to in person where I live. Email- [email protected]. Thank you for listening and God Bless.
2019 Year In Review
