A hand balancing a huge stack of prescriptions and paper for tests leading up to a diagnosis.

Cushing's Diagnosis: Juggling Multiple Chronic Illnesses with RA

Last updated: May 2022

I guess I've been writing a series of articles lately on my story and experiences with getting diagnosed with some endocrine disorder. The possibilities have varied widely: from Cushing's to adrenal insufficiency to hypothyroidism to other more niche disorders.

But, I finally have the beginnings of a confirmation of what I've been experiencing.

Symptoms consistent with Cushing's disease

A few weeks ago in June, I had my first endocrinology appointment where I spent over an hour with the doctor telling my story and painting together this narrative of what has been happening to me over the past year and a half: purple stretch marks all over my body, stressed out all the time, gaining so much weight, fat deposits in random places on my body, and more.

Lab tests needed for a clinical diagnosis

The doctor's appointment was extremely validating. She confirmed my symptoms were consistent with a Cushing's diagnosis, but I would have to do a bunch of lab tests in order to have a clinical diagnosis. These tests included:

  • A 24-hour urine sample collection to test to measure coritsol levels
  • 4 saliva tests for cortisol
  • Bloodwork for ACTH (adrenocorticotrophic hormone)
  • A dexamethasone test (which is supposed to suppress cortisol levels), and others.

On the right track to getting better

I completed all the tests my endocrinologist ordered last weekend and am currently waiting for the results.

It was exhausting to have to complete these tests because there were so many rules. And, if you didn't follow them to a "t", you could get incorrect results, something I don't need right now when I'm trying to get an official diagnosis.

Getting an official diagnosis would absolve and validate everything that I've been through and would allow me to get on the right track to healing and getting better.

If a Cushing's diagnosis is confirmed

What are the next steps (assuming that I get a positive/confirmation diagnosis)?

MRI and CT scans

My endocrinologist said that I would have to get an MRI and CT scan: one of my brain to see if there is a pituitary tumor and one of my kidneys to see if there is an adrenal tumor.

Then, after analyzing the results of the imaging, they'll have to determine which surgery I will need to get rid of the tumor since the tumor is clearly manifesting symptoms.

Anxiety and worry about what's next

Clearly, this is a very busy time in my life, and it all feels overwhelming when there's the possibility of surgery hanging over your head.

Sometimes with RA, it feels like things never let up (in regards to your health), like there is always something right around the corner waiting to be diagnosed, something waiting to snatch and drain every bit of limited energy and life that you have left in your body.

Had I taken my body for granted?

That's the best way I can describe this: having RA - which dampened my immune system and probably made me more susceptible to having something like Cushing's — has really made me realize how intricate the body can be. How multiplicitous the body can be. How damaged the body can be. And how much I used to take my body for granted.

Sometimes I think I mourn the life I used to have before being diagnosed with RA, and this current diagnosis further compounds those feelings.

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