The happiest day of my life should have been the day I got married or the birth of my son. But for me, it was June 12, … Read More
Most of my Cushing’s journey has circled around important milestones in my life. I guess that’s what happens when you start to get sick during your transition into college. This was the time I was supposed to be learning, growing, becoming independent and finding myself. In a way, I suppose all of these things were still a part of my college experience, however, I also had to balance regular doctor’s visits and 24-hour urine samplings all while starting a new life in a new city on a college campus that was 6 hours away from home.
I was sick for about 3 years prior to being diagnosed with Cushing’s disease in winter of 2008. Finding out that I had a microadenoma on my pituitary gland was a pretty scary thing to process as a 19 year old. The first matter of concern for me was timing. I didn’t want anything to hold me back from graduating with my newfound friends and regularly wondered how Cushing’s would further impact this phase of my life. Thankfully, I was able to have a pituitary surgery the summer in between my sophomore and junior year of college on May 20, 2009 and maintain my schooling schedule, even if it was more than a full year after diagnosis.
I made it almost 5 years in remission, what doctor’s view as a sign of a true “cure”. I had found a full-time job with benefits and a serious boyfriend; I was excited for what the future would hold. But if we were to have a future together, I realized I had to tell him that my Cushing’s tumor was back. I knew I would need his support during this difficult time. He walked beside me through all the testing and scans. Together, we tackled my second pituitary surgery July 3, 2013 after dating for only 6 months.
Thankfully my little tumor friend did not scare this man away. He decided to ask me to be his forever in May 2015. Unfortunately, it wasn’t too long after the engagement that it was confirmed yet again that my Cushing’s disease was returning for a third time. I was in my final year of graduate school, planning a wedding, and now, planning another pituitary surgery around these important milestones. I was able to plan to have my surgery over my Christmas break, November 25, 2015.
My recovery in addition to wedding planning and finishing a full-time graduate program was not, by any means, an easy journey. It is by God’s grace that I got through that time, and it is by His grace that I continue to wake up each morning and battle the long-lasting effects of this disease, both mentally and physically.
I believe that milestones not only call us to celebrate, but also call us to reflect on how far we have come. I reflect on 18 year old, undiagnosed Alyssa. At that time, I was scared and I experienced a lot of self-hatred and a lot of self-inflicted guilt for symptoms that I hadn’t yet been able to identify as symptoms. My greatest milestone of all was on September 18, 2016; it was a celebration of love and marriage. I was in a place where I was marrying a man who could confidently say he would be with me “in sickness and in health.” A place where I could acknowledge and accept that this disease will most likely continue to be a part of me for the rest my life, but it does not mean it will define me or ever keep me from truly living.
- Blood Tests
- 24 Hour Urine Tests
- Salivary Cortisol Tests
- Low-Dose Dexamethasone Suppression Testing
- MRI Scans of the Pituitary Region
- CT Scans of the Adrenals
- Corticotropin-Releasing Hormone Stimulation Test
- Minimally invasive surgical removal of the pituitary adenomas (transsphenoidal surgery) is the most widely used therapeutic approach.
- In the event that the tumor cannot be removed, radiation therapy is another option. However, treatment can take up to several weeks and is more effective in children than in adults
- Stereotactic radiosurgery is another viable option, delivering a precise high-dose burst of radiation to the tumor. However, the effects can be delayed for months or years.
- Minimally invasive surgery to remove an offending adrenal tumor.
- In the event of medication-caused Cushing’s Syndrome, lowering dosages of external glucocorticoids can stop Cushing’s.
- Bilateral Adrenalectomy to remove both adrenal glands, thus stopping production of Cortisol.
- Medication, such as ketoconazole and pasireotide can be used to lower cortisol levels. However, they frequently can cause unwanted side-effects, such as increasing blood sugar.
Hello, and welcome back to this short series on Cushing’s Disease. Today, we are going to talk about the Signs and Symptoms of Cushing’s, as well as the difference between Cushing’s Disease and Cushing’s Syndrome.
Signs and Symptoms
Cushing’s Syndrome and Disease are both caused by excess cortisol in the bloodstream. One of the reasons Cushing’s is so hard to diagnose is because the symptoms are relatively non-specific. Listed below are some of the more common symptoms.
This is one of the most common symptoms of Cushing’s. Most people with this disease will rapidly gain excess weight, especially around the stomach, chest, and face . Interestingly, there is little to no weight gain around the arms and the legs. Excess weight is linked to cardiovascular diseases.
As written above, many people gain weight around the face, leading to a rounded or “moon-like” face. It is also common for Cushing’s patients to have very red cheeks.
High Blood Sugar and Glucose Intolerance
Both of these symptoms, if left untreated, can lead to Type II Diabetes.
High Blood Pressure
Increases risk of Heart Disease and Stroke
Muscle and Bone Weakness
Untreated Cushing’s can result in atrophied muscles and bone fractures.
Additional symptoms include mental fogginess, anxiety, and depression.
Cushing’s Disease? Cushing’s Syndrome?
There are three main causes of Cushing’s. If excess cortisol is caused by either external steroid use (for allergies, asthma, etc.) or a cortisol-producing adrenal Tumor, then the disorder is known as Cushing’s Syndrome. If excess cortisol is produced by an ACTH-producing pituitary tumor, then the disorder is known as Cushing’s Disease. There are multiple ways to diagnose and treat Cushing’s Syndrome and Cushing’s Disease, but we will cover that next time.