In this article, women/girls and men/boys will refer to cisgender women and men.  

My pump program is practically useless during “that time of the month.” Temporary settings don’t work well. My basal rates, carb ratios, and correction factors change daily for eight days. With premenstrual syndrome (PMS), my basal rates increase from 110% to 120% and 150 of normal.  

Once my period begins, without warning, my insulin needs to drop to 85% of normal for a couple of days. The timing differs for each cycle, never mind what happens with exercise. (And please, don’t look at my time in range for those 10-12 days. It’s not my fault; I’m really trying.)  

In search of more tools, I recently decided to investigate the latest on women and T1D. Here’s what I found. 

 

Women with T1D  

Many clinical trials over the years have shown that managing weight, glucose, and blood pressure can help reduce microvascular complications in people living with diabetes. With decades of improvements in care, lifespan has increased overall in those living with T1D, even as the rate of T1D is increasing in the U.S. This is all good news. 

Yet, research suggests that women with T1D may not be reaping all the benefits of these improvements in care when compared to men. Unlike other autoimmune conditions, T1D is diagnosed similarly in the sexes (10.2% of women vs.10.8% of men aged 20-79 years), which begs the question: Are there gender inequalities in the delivery of diabetes care? 

Let’s take a closer look. 

 

Differences found in the data 

On the surface, the likelihood of T1D health-related complications is similar between women and men.   

When digging deeper, however, one study identified the female gender as a T1D risk factor, among others, for heart failure. Another found that women who developed T1D before age 10 lost an average of 17.7 years of life, while men lost 14.2 years. 

A meta-analysis of studies between 1966 and 2014 estimated: Women living with T1D versus men have a 40% higher risk of all-cause mortality. Moreover, twice the risk of vascular events, fatal and non-fatal. 

Research suggests differences occur even though women have higher rates of intensive insulin therapy, similar A1Cs, and standards of care as men.  

Certainly, life expectancy can vary widely depending on other health conditions, risk factors, and lifestyle habits. A 2021 T1D study found a “substantial variation” in life expectancy within the sexes themselves. 

 

Sex as a variable in T1D health 

Large T1D registries and studies were created in the 1980s. One, at the Children’s Hospital in Pittsburgh, PA, developed into the Epidemiology of Diabetes Complications (EDC) study.  

That data is still useful today to Rachel G. Miller, PhD of the University of Pittsburgh School of Public Health. According to Miller, “Sex as a variable in T1D complications and outcomes is not well researched” and is a focus of her career. Adding, even fewer studies exist on complication differences by race and ethnicity.  

Dr. Miller highlights that women experience cardiovascular disease (CVD) protection in the general population, but that is “essentially erased in the T1D population.” That means CVD, in those without diabetes, tends to be lower in women than in men. But when we compare women and men living with T1D, that lower CVD rate in women is almost non-existent. 

Miller’s research supports “more aggressive risk factor management in T1D, especially among women.” With findings suggesting a young woman’s relative risk of CVD (with long-standing T1D) is greater than a man’s, monitoring and treating risk factors is of utmost importance. These include blood pressure, lipids, and underlying causes of inflammation. 

Furthermore, “Women may benefit from different targets and earlier interventions versus men.” What Miller advocates is reflective of the Precision Medicine in Diabetes Initiative launched by the American Diabetes Association. “Precision medicine proposes custom delivery of health care…identifying the right treatment, for each patient, at the right time.” 

 

What about hormones? 

Miller’s daughter lives with T1D, and her firsthand experience is that: “The impact of the menstrual cycle is vastly underappreciated.”  

She suggests female hormones themselves may not be the direct cause of sex differences. Rather, we should also consider the impact of hormonal fluctuations on T1D management during a woman’s lifetime: puberty, menstruation, pregnancy, and menopause. 

 

The Tidepool Period Project 

While researchers continue to investigate why sex is a variable in T1D outcomes, in 2021, Tidepool launched the Tidepool Period Project (TPP).  

The TPP is in a data-gathering stage and still recruiting. Three overlapping data types are necessary: CGM, insulin use, and menstrual cycle start dates. These data sets are rare. 

Because hormones cyclically fluctuate, and menstruation can last decades, it can bring an added challenge to managing T1D. In speaking with Maya Friedman and Saira Khan-Gallo, MPH, the TPP’s long-term goal is to reduce women’s burden and effort managing T1D. 

 

The Ups and Downs of Menstrual Cycles 

Friedman is the founder and lead designer of the TPP. She came to Tidepool from the FemTech sector to address women’s health issues that are typically ignored by the general population.  

Friedman found little existing guidance for T1D management during the menstrual cycle. 

Khan-Gallo, Tidepool’s Access & Equity Lead, explained: “I know first-hand the struggles of trying to manage this condition without having the right tools.” You see, Khan-Gallo lives with T1D herself and was labeled “non-compliant” for many years.  

Then she met her future husband and, over the years, made side-by-side T1D comparisons. Despite having the same pump, technology, and similar education and lifestyles, Khan-Gallo found “Diabetes management is so much easier on him with less effort. I realized ‘it wasn’t me.’” 

The TPP is personal for Khan-Gallo: She and her husband also have two daughters living with T1D. “Women are often told that our experiences aren’t valid and we aren’t working hard enough to manage our diabetes. But the systems currently serving women living with T1D are non-compliant with our needs — not the women themselves.” 

Friedman added, “TPP’s goal is to create a solution for women that bridges the gaps in clinical care, technology, education, and resources.” 

 

Care strategies 

Consider talking to your healthcare provider about your T1D therapies, health targets, and impacts of puberty, menstruation, and menopause. Your diabetes care team is there for support and to provide a full understanding about: 

  • Risk factors, targets, and testing (i.e., blood pressure, cholesterol, and glucose levels)  
  • Recommendations for increasing your time in range 
  • Offerings and support from a Certified Diabetes Care and Education Specialist (CDCES)
  • Lifestyle changes and medications to help manage risk factors and reach health targets
  • Period trackers to help monitor associated CGM and insulin use changes  

 

In short 

Research suggests women and girls living with T1D may have unmet healthcare needs impacting overall diabetes health and the lifespan. And many of us have difficulty managing T1D during each cycle and throughout pregnancy and menopause.  

While research and technology catch up, we can speak up when our T1D management is causing distress. Voicing our experience can help us get the customized care, medicine, and solutions we deserve. 

 

This article was written for informational purposes only. The author is not a healthcare professional and does not give medical advice. Always discuss your treatment, management, and symptoms with healthcare professionals.