SYMPTOMS

Length: 03:13

Why Don’t I Feel Good? What the C@H?!

[Narrator VO]

Why don’t I feel good? What the CAH?

[Adult VO 1 - male, 25-40]

Sometimes I just feel off and can’t really explain it.

[Youth VO - female, 11-17]

Yeah…or I feel exhausted at the wrong time.

[Adult VO 2 - female, 25-40]

It’s the acne for me. I thought I outgrew this!

[Narrator VO]

People with CAH, and those who care for them, may know the signs and symptoms. But what’s happening inside the body can be less clear.

Let’s take a closer look.

[Narrator VO]

Two of the key hormones affected by CAH are:

cortisol, which helps regulate stress responses and metabolism...

and androgens, which regulate growth and reproduction.

A third key hormone, aldosterone, also can be affected—but for now, let's focus on cortisol and androgens.

[Narrator VO]

For people with CAH, organs in your body called the adrenal glands don’t produce enough cortisol.

So, a cortisol deficiency occurs—in other words, there’s not enough of it being made.

In response, the brain keeps sending signals to produce more.

However, the same system that makes cortisol makes androgens as well. So it keeps signaling to produce cortisol, but androgens get made, which results in excess androgens.

This causes a range of CAH signs and symptoms. Some can be difficult to detect without lab tests, but others are more visible, such as acne and early puberty.

So, people with CAH need to be treated for both cortisol deficiency and androgen overproduction.

[Narrator VO]

That’s where steroids come in. Steroids are taken every day to replace cortisol. But sometimes a person’s regular steroid dose is not enough. When the body is stressed it needs more cortisol.

[Adult VO 1 - male, 25-40]

That explains why I need an extra dose sometimes, like when I have a cold.

[Narrator VO]

Exactly.

It’s also important to know that steroids have another purpose, too. When used at higher doses, they can help reduce androgen overproduction.

But even with high doses of steroids, androgens may often still be too high in people with CAH. Plus, high doses of steroids can come with increased risks of weight gain, diabetes, high blood pressure, and other side effects that can affect people with CAH starting in childhood. Bone density loss can also affect people with CAH as early as their 20s and 30s.

[Adult VO 2 - female, 25-40]

Is there something I can do to better manage my androgen levels?

[Narrator VO]

Understanding your lab results is key. Your endocrinologist will typically monitor the androgen markers androstenedione, or A4, and 17-hydroxyprogesterone, or 17-OHP.

You'll especially want to consult with your doctor and ask about your labs if you're noticing signs of androgen excess, like acne or increased hair growth.

As your symptoms and side effects change throughout your life, so may your treatment priorities. Your doctor might adjust your steroid dose over time to balance the risk of side effects with the symptoms of excess androgens.

[Adult VO 2 - female, 25-40]

Now that you mention it, my doctor has said she considers both what I’m experiencing and what my labs say.

[Narrator VO]

So at your next appointment, be sure to tell your doctor about how you’ve been feeling since your last visit, and if your goals for your treatment have changed at all. It could make a big difference in how you and your doctor manage CAH.