For those of us caught up in the world of Cushing’s shenanigans, April is a month to blog about awareness. A seemingly rare disease, but perhaps it’s just not diagnosed as much as it ought to be, Cushing’s Disease can be fatal if it goes untreated. It sometimes takes years to get a correct diagnosis, as many medical professionals brush it off as the patient being obese with high blood pressure on their own accord.
What might seem like shocking information, Cushing’s Disease has a mind of its own. It doesn’t care how active you are, it doesn’t care what your diet looks like. It doesn’t care what you do for a living, nor does it care what sex you are. It doesn’t care about much about any or all of your personal life, and it’s just random how folks get cursed with this horrible disease.
**FUN FACT: I had never even heard of Cushing’s Disease, until it was on the table as a potential diagnosis**
As a survivor of Cushing’s Disease, I can tell you that it’s not a fun entity to have lived with. It messed up my life for several years, and I’m talking about every single ounce of my being. Broken down, Cushing’s is caused by an excess production and exposure of the hormone cortisol in one’s body, which is responsible for life itself. Cortisol is produced in the adrenal glands, which sit atop your kidneys, and I call them your kidney party hats, as they kind of look like little hats on top of a big bean-shaped organ.
I had an ACTH-secreting pituitary tumor that caused my excess cortisol, or hypercortisolism if you’d like to get technical. The tumor was called an adenoma, and I had a macroadenoma, meaning it was larger than your average pituitary tumor. ACTH stands for adrenocorticotopic hormone (what a mouthful!), and it is produced on the pituitary gland in the brain. It signals your adrenal glands to produce and release cortisol. Other folks who’ve had Cushing’s have a tumor on an adrenal gland, or in rare circumstances, on their lungs. Sometimes, the tumor is undetectable, and to find out where the excess ACTH is coming from, those people have to have a procedure known as an IPSS (inferior petrosal sinus sampling), wherein a catheter is snaked from one’s groin up to the brain to determine which side of the pituitary is producing the excess ACTH.
The diagnostic workup to conclude that one does in fact have Cushing’s Disease isn’t as simple as a blood test. Cortisol is found in the blood, saliva, and urine of everyone, and testing covers all of those bases. Cortisol ebbs and flows in peaks and valleys during the day and night, so there’s a specific time to measure the specimen in each bodily fluid. Blood is best measured at 8am, whereas urine is a 24-hour collection (in a bright orange 3 liter sized jug), and saliva is measured at midnight over the course of 3 nights. You can also do a dexamethasone suppression test, which consists of taking a pill then getting blood drawn the morning after. If ACTH and cortisol levels are high, that is indicative of a pituitary tumor. If ACTH levels are low and cortisol is high, that is indicative of an adrenal mass.
If you’re not excited yet, just wait, there’s more! A potential Cushing’s patient also needs an MRI of their pituitary, or a CT scan of their adrenals or chest. It’s not as simple as urinating on a stick, just once or twice to get a confirmatory diagnosis. All these tests combined can take quite awhile. Oh, and you have to see a specialist doctor who is an Endocrinologist, since this disease tampers heavily with your endocrine system.
Symptoms of Cushing’s include:
- Obesity (with rapid, uncontrollable weight gain)
- Pay special attention to the fatty deposits in one’s face (moon face) and on the back between the shoulders (buffalo hump), and also on the abdomen.
- High Blood Pressure
- Purple Striae (stretch marks) across abdomen, breasts, thighs, and arms
- Diabetes or Insulin Resistance
- High Cholesterol and Triglycerides
- Irregular or Lost Period in women
- Depression, Anxiety, Irritability
- Muscle Weakness
- Thinning of Skin and Propensity to bruising
- Slow Healing on Insect Bites/Cuts/Wounds
- Hair loss
- Increased Facial Hair in Women
- Bone Density Loss
- Cognitive Impairment
*Not everyone who presents with Cushing’s Disease will have all of these symptoms, but some people will.
I should also mention that there is Cushing’s Syndrome, which is identical to Cushing’s Disease, just without a tumor present.
This post is to be continued, and as they say in the Cushing’s Community (and that of other rare diseases), “When you hear hoofbeats, think Zebras.”…You know your body better than anyone else, and I’ll explain this saying, along with other fun things in my next post!….but in the meantime, if you see something, say something, when it comes to your own body.