Fighting for My Cushing’s Diagnosis

Brandy Moody avatar

by Brandy Moody |

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letter to myself | Cushing's Disease News | banner image depicting music notes swirling around rollerskates for Brandy Moody's

You can tell a lot about a person within the first seven seconds of meeting them. I am a Cushing’s disease warrior.

Whew, now that that’s out of the way, allow me to delve deeper into what it means to be a warrior of this disease.

I’ve carried 179 pounds of shame and lived with a lost identity for three years. I’ve battled an impulsive rage that consumed every ounce of sanity I had left. I’ve faced countless nightmares that morphed into hallucinations after awaking nearly every hour of the night.

The onset of symptoms

My name is Brandy, and I was diagnosed with Cushing’s disease in October 2020. Cushing’s disease occurs when the body produces too much of the stress hormone cortisol. Additionally, I had a 5 mm pituitary tumor that secreted adrenocorticotropic hormone, which controls the production of cortisol, sending a friendly reminder to my adrenal glands that I needed more stress!

Jokes aside, this is what caused my Cushing’s disease.

Initially, I thought my metabolism was just catching up to me. I did my best to work out, ate healthy meals, and tried intermittent fasting, but none of it worked.

My symptoms were sneaky, appearing one by one in an orderly fashion. Irregular menstrual cycle? Check! Insomnia? Check!

It felt as though my body was plotting and planning against me: “Let’s make sure she gets incredibly irate when this insignificant thing happens to her!” I truly felt betrayed.

My face began to resemble a moon — so much so that my iPhone facial ID didn’t even recognize me. I gained 60 pounds, had a hump on the back of my neck, and would randomly bruise. I hit rock bottom when I saw a photo of myself. It done snatched my soul right out my body when I saw what I looked like! I knew something wasn’t right.

Testing and tenacity lead to Cushing’s diagnosis

I decided to keep track of all of my symptoms. I wrote down the hours that I woke up, documented how many naps I had to take during work, and tracked my menstrual cycles. Then I did some research. Surely all of my symptoms were connected, I thought. My search came down to two possibilities: polycystic ovary syndrome (PCOS) or Cushing’s disease.

Testing for PCOS didn’t show anything. And my doctor told me that a Cushing’s diagnosis would prompt more red flags in my bloodwork. Luckily, my white blood cell count was mysteriously high, so I was referred to a hematologist. The hematologist suspected inflammation, and recommended I see an endocrinologist.

Thankfully, the endocrinologist listened to my concerns, and my testing began. I spent eight months doing bloodwork and other various procedures, which led to the discovery of a 5 mm pituitary adenoma on my pituitary gland. I had the tumor removed with transsphenoidal surgery in November 2020. I am still in the process of verifying whether the surgery was 100% successful or not.

You can tell a lot about a person within the first seven seconds of meeting them, but it will take a lot longer to really understand them and their struggles. I may have spent eight months testing for Cushing’s, but Cushing’s was also testing me. It tested my patience, my character, my resilience, and so much more.

I am a Cushing’s warrior. Welcome to my new column, “Courageous in Cortisol.”

***

Note: Cushing’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cushing’s Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Cushing’s.

Comments

Karen Pieters avatar

Karen Pieters

I traveled the same path from 2015 until now. Am in remission but have different side effects. Had all your symptoms but had to stomp my foot to get tested. Had surgery twice and gamma knife lastly when surgery was not an option. Do not give up and sorry to tell but the little devil reoccurs many times within 12 months. Stay strong keep fighting and find friends that support you as you are. That was very hard for me to do. Good luck and change doctors if you feel they are not listening to you. Check urine cortisol and am.

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Denise K avatar

Denise K

My daughter has had three doctors tell her that she most likely has Cushing's due to - purple stretch marks, anxiety, extreme weight gain, moon face, hump, etc. However, her cortisol levels are not showing to be high and all her endocrinologist says is to keep testing because she believes it is Cushing's. It is extremely frustrating and scary to see her body and mind change like this.
Is it possible that she has Cushing's without showing high levels of Cortisol? Do you think she should have an MRI on her pituitary gland?
I would appreciate any advice you may have.
Thank you,
Denise

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Karen Pieter Pieters avatar

Karen Pieter Pieters

Yes Yes Yes. I had all the symptoms and took 2 years and many doctors to finally have a MRI to confirm my Cushings. It really is the only way to confirm it. Also my tumor was small and at first they wanted to watch and wait. DO Not do this. Small does not mean better. Mine was very aggressive and causing many bad symptoms. It was so agressive that by the time I had the first surgery it did not work and had to have again a year later and did not work and had no surgical options as had broken out of pitutary and was in venous cavinous. Very bad. Had radiation and am in remission finally. Press your doctors!!!

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Karen Pieters avatar

Karen Pieters

UVA is where i finally got help. They have a special clinic for Cushings and tumors. They were wonderful and saved my life.

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Sandra johnson avatar

Sandra johnson

My tumor was removed in 2003, leaving my pituitary in tack, the last 10 years my buffalo hump continues to grow, my bones are thin and fragile, extreme muscles weakness, I shave my chin every morning and I cant lose weight, I stay around 230pds. My MRI shows that my Pituitary is flattened and underwater or spinal fluid, they say it has not returned. No none seems to know what is going on but my quality of life is greatly affected. Something is off balance, I am seeing a endocrinologist, no answers yet, cushion should be a disability when it gets this advanced.

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