The relationship between type 2 diabetes and polycystic ovary syndrome (PCOS) is widely recognized. However, it turns out that PCOS is also more common in people with type 1 diabetes. Researchers and doctors aren’t exactly sure why these two conditions are connected, but insulin seems to be an important part of the equation. Here’s what you should know.

What Is Polycystic Ovary Syndrome?

PCOS is a hormonal problem that usually starts at puberty. In PCOS, the ovaries make too much of the hormone androgen. This prevents the regular development and release of eggs, causing problems with ovulation (when eggs are released) and fertility.

To be diagnosed with PCOS, you need to have at least two of the following symptoms:

• Abnormal ovaries — Ovaries may be oversized and dysfunctional, with several follicles and immature eggs.
• High androgen levels — An excess of this hormone can lead to extra body and facial hair, male-patterned baldness, and acne.
• Irregular periods — Having more than 35 days between menstrual cycles or getting less than nine periods a year is a sign of PCOS. Menstrual periods may last much longer than normal.

If an adolescent has not had their first period by age 15, that also may be a sign of PCOS.

Risk Factors for Polycystic Ovary Syndrome

Doctors don’t know specifically what causes PCOS, but a few factors are linked to a higher risk. PCOS is relatively common, affecting 6 percent to 15 percent of premenopausal women, according to the nonprofit Type 1 Diabetes. Certain genes may be partially responsible, especially if PCOS is part of your family history. Being of a higher weight is also a risk, as is having diabetes. High levels of insulin and inflammation increase the production of androgen and may lead to PCOS.

Although the connection between PCOS and type 2 diabetes can be linked back to insulin resistance, type 1 diabetes is different. People with type 1 diabetes don’t make insulin, and they need to take the hormone through injections. Researchers think it’s possible that using insulin medication may contribute to the increased risk of PCOS in people with type 1 diabetes.

About 26 percent of people with PCOS also have type 2 diabetes. PCOS is considered a risk factor for developing prediabetes, type 2 diabetes, and gestational diabetes. However, the frequency of type 1 diabetes and PCOS may be even higher. Some estimates show that 24 percent to 40 percent of people with type 1 diabetes also have PCOS.

What Polycystic Ovary Syndrome Looks Like With Type 1 Diabetes

Researchers have noted a few ways that PCOS appears different in people with type 1 diabetes versus those without type 1 diabetes. For one, people with type 1 diabetes aren’t as likely to have the PCOS symptom of hirsutism (excessive body hair). They also tend to have normal levels of sex hormone-binding globulin (SHBG), compared to low levels seen in other people with PCOS. SHBG is a protein that helps control hormone amounts.

Whether or not someone has type 1 diabetes, PCOS causes higher free testosterone levels (the hormone isn’t bound to proteins) and follicle counts. However, the increase in follicles — sacs in the ovaries that hold immature eggs — may be lower in those with type 1 diabetes. Understanding these differences can help support earlier diagnosis and treatment of PCOS in people with type 1 diabetes.

Treatment for Polycystic Ovary Syndrome

Doctors usually treat PCOS with a combination of lifestyle changes and medication. For some people, weight loss can improve the symptoms and boost fertility. If you already meet with a registered dietitian nutritionist for diabetes, they can also help you develop a meal plan that supports healthy weight loss without increasing your risk of hypoglycemia (low blood glucose — or sugar — levels).

Hormone therapy can help with irregular periods. Combination birth control pills have estrogen and progestin. These pills lower androgen levels, which helps regulate your cycle and reduces PCOS symptoms like acne and body or facial hair. These symptoms may also be treated with acne medications and hair removal procedures.

Sometimes a pill that contains just progestin is recommended for PCOS. Progestin-only pills are taken on a specific schedule. They will help regulate menstrual periods but, unlike combination birth control, won’t prevent pregnancy. However, some versions of progestin-only mini pills and intrauterine devices are effective forms of birth control. Your health care provider can help you understand your options based on what best supports your goals.

Certain treatments help improve the chances of conceiving a child if you have PCOS. An antiestrogen pill called clomiphene (Serophene) can help promote ovulation when taken at the start of the menstrual cycle. Another option is letrozole (Femara), a breast cancer drug that stimulates the ovaries. Fertility drugs called gonadotropins, which are injected, also may be used.

Managing Both Conditions

Having more than one medical condition at the same time (comorbidities) requires a little extra planning and consideration. Fortunately, diabetes care doesn’t have to stop just because you have another diagnosis. It’s a good idea to keep a closer eye on your blood glucose levels when starting any new treatment, such as hormone therapy. You can let your health care provider know about any side effects or changes that might be concerning.

One of the recommended treatments for PCOS is metformin. Metformin can directly affect blood sugar levels by enhancing insulin sensitivity. If you have PCOS and want to get pregnant, metformin can improve ovulation. However, your doctor will need to tailor your treatment plan because you have type 1 diabetes and require insulin therapy.

More research is needed to determine if adjusting insulin levels, carbohydrate intake, or physical activity levels can help manage PCOS and type 1 diabetes. Always keep your doctor in the loop before making big changes, and monitor your sugars carefully.

Talk With Others Who Understand

On myT1Dteam, the social network for people with type 1 diabetes, more than 3,400 members come together to ask questions, give advice, and share their stories with others who understand life with type 1 diabetes.

Have you struggled with infertility, menstruation issues, body hair growth, or other symptoms of PCOS? How do you coordinate diabetes care with other medical treatments? Share your experience below, or start a conversation by posting on your Activities page.