Answering 10 questions about my experience with Cushing’s disease

Cushing’s disease can often feel isolating. When I received my diagnosis in 2020, I couldn’t find any communities online. As I went through my diagnosis, surgery, and recurrence, I almost always felt alone. Because of this pattern, I’ve worked consistently to chat with people, help them reach a diagnosis, and try to create positive Cushing’s disease communities.

Since I’ve been sharing my story on TikTok and YouTube for a long time, I’ve had a lot of people reach out to me with questions. I thought that sharing some of the most common ones might be helpful for those new to the disease.

Following are the 10 most common questions I’ve gotten about Cushing’s:

1. What are high symptoms?

High cortisol symptoms of Cushing’s disease are anxiety, acne, hair loss, muscle pain, insomnia, bruising, and larger buffalo humps. Other symptoms of Cushing’s disease could be depression, fatigue, body aches, nausea, and even puking.

2. What is the difference in symptoms for PCOS and Cushing’s?

This question is the hardest to answer because illnesses show different symptoms in different people. For me, Cushing’s disease came on much more suddenly, while my polycystic ovary syndrome (PCOS) was more gradual. Cushing’s wiped out my periods; PCOS just affected them. Cushing’s disease caused incredibly rapid weight gain; PCOS just made weight harder to lose. Overall, the progression of Cushing’s disease, for me, was more rapid and more extreme than with PCOS.

3. What happens to your periods when you have Cushing’s?

My periods disappeared entirely. The day after my first pituitary surgery, my periods came back. Two weeks after medication treatment for my second tumor, my periods came back. I want to note that some women experience only irregularities in their cycle, or sometimes their period isn’t affected at all. For me, though, both times it was the first sign something was wrong.

4. What are the treatment options for Cushing’s disease?

You can treat yourself medically, surgically, or through radiation.

5. How do you know what the source of your Cushing’s is?

If it’s a pituitary cause, you’ll have normal to high adrenocorticotropic hormone (ACTH). If it’s an adrenal source, you usually have low cortisol.

6. What is your recommended testing schedule?

When I was testing, I tried a lot of different methods. What worked best for me was doing consistent midnight saliva tests (twice a week for a month), four 24-hour urine tests (once a week for a month), and monthly bloodwork. For cyclical patients such as myself, more testing is always better! It took me three months of testing to gather all my high results.

7. How do you advocate for yourself?

Once I figured out something was wrong, I wouldn’t allow myself to give up. It can be so hard to have to fight so consistently and face misdiagnosis or potentially even medical gaslighting. If I were you, I’d cite sources, take before-and-after pictures, and see multiple doctors, as I did before finding the right one. There’s no right way to advocate for yourself. Just keep fighting!

8. I don’t have all the symptoms, but I still think I have this. Is that possible?

Of course it is. Not everybody is the same, and it’s possible for you to have Cushing’s disease without having every symptom. If you think that you have it, meet with an endocrinologist and ask for cortisol testing.

9. I don’t have Cushing’s disease, but I do have overlapping symptoms. What else can it be?

I was tested for late-onset congenital adrenal hyperplasia (CAH), PCOS, Hashimoto’s disease, adrenal cancer, and ovarian cancer.

10. Why do you need mobility aids with Cushing’s disease?

Cushing’s disease has affected my bones and muscles pretty severely. I use mobility aids when I feel the pain of walking is otherwise too much. I also have extreme visual issues (including night blindness, floaters, blurriness, and lights that don’t exist appearing in my path), and my wheelchair is really helpful in navigating with that.

Cushing’s disease can make you feel alone. Don’t forget that so many people out there may be experiencing the same symptoms you are. Don’t hesitate to reach out and ask questions of those who can help.

I hope this little question-and-answer column has given you some clarity about Cushing’s.

What other questions do you have about Cushing’s disease? Please comment below! You can also follow my journey on TikTok and YouTube.

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.