1 in 4 Women Living with Type 1 Diabetes has PCOS

Polycystic Ovary Syndrome (PCOS) is possibly the most frequent undiagnosed comorbidity found in type 1 diabetes (T1D). PCOS affects 1 in 10 women but it’s roughly 2.5 times higher in the type 1 diabetic population. PCOS is estimated to affect 19-41% of reproductive age women living with T1D.

What is Type 1 Diabetes?

Type 1 diabetes is an autoimmune disease in which insulin-producing beta cells of the pancreas are mistakenly destroyed by the body’s immune system causing a complete deficiency of insulin secretion. A person living with T1D must inject themselves with insulin multiple times a day to stay alive. The absence of insulin will lead to elevated blood sugar, lack of energy supply, and devastating health complications later in life if blood sugars are not managed with appropriate amounts of injectable insulin.

The Link Between PCOS and Type 1 Diabetes

The cause of PCOS in women with T1D is uncertain but it’s believed to be from the intensive insulin treatment required to survive. Since injectable insulin is administered into fat cells and then absorbed into the circulatory system, it can lead to a state where too much insulin is present (hyperinosemia). Studies have shown women on multiple insulin injections or insulin pumps had a significantly higher prevalence of polycystic ovarian morphology (PCOM) and PCOS compared with those under conventional two-dose insulin treatments.

 

Studies suggest insulin acts with Luteinizing Hormone (LH) to stimulate over production of androgens (male hormones) from the ovaries. An excess in androgens is 1 of the 3 criteria needed to diagnose a woman with PCOS. However, only 25% of type 1 diabetic women with PCOS will present with elevated androgens and 12% will not present with any of the typical PCOS traits.

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Research has identified sex hormone-binding globin (SHBG) concentrations of PCOS women are typically reduced, however, in type 1 diabetic women with PCOS the SHBG concentrations are not reduced. Concentration levels found in women with T1D and PCOS present no different than those of non-PCOS women. Because of these findings, PCOS or not, women with T1D are more likely to have an increase in total and free testosterone concentration overall making it harder to identify underlying issues.

Risk factors for PCOS in Type 1 Diabetes

Since many type 1 diabetic women don’t show evidence of hyperandrogenic traits suggests a need for identifying if certain individuals could be at a higher risk of developing PCOS. The conceptual agreement across research suggests the following may predispose a female living with T1D to develop PCOS:

  • Family history of type 2 diabetes
  • Family history of hirsutism (dark, thick hair)
  • Acne
  • Menstrual dysfunction
  • Hyperandrogenemia (elevated androgen levels)
  • PCOM – Polycystic ovarian morphology
  • Diagnosis of T1D before menstrual cycle begins
  • Exposure to large quantities of insulin during puberty
  • Long periods of elevated blood sugar
  • Insulin resistance

Theoretically, if multiple insulin injections can lead to overproduction of testosterone in women with T1D, they’re at a higher risk of developing other common symptoms of PCOS like; polycystic ovaries, irregular or absent periods, excessive hair growth, extra weight gain, insulin resistance, and difficulties losing weight.

 

Polycystic Ovaries

High levels of insulin can stimulate the development of antral follicles, increasing ovarian size and the quantity of follicles, favoring the appearance of polycystic ovarian morphology (PCOM). PCOM is found in 33% of women with T1D and PCOS. The high rate of PCOM in women with T1D could be due to greater androgen levels and insulin resistance.

 

Irregular or Absence of Menstrual Cycle

High levels of androgens can also lead to menstrual irregularity in 24% of women with T1D and PCOS. Menstrual disorders in adolescent girls with T1D has been reported to be as high as 19-54%, whereas 11.3% college aged females with T1D have less than 6-8 menstrual periods per year and 2.6% don’t have periods at all.  The high rate of irregular or absence of period in type 1 diabetic women with PCOS could be due to elevated testosterone levels, elevated LH/FSH ratio, and insulin resistance.

 

Excessive Hair Growth

Hirsutism is a condition in women resulting in excess growth of thick or dark hair on face, chest, belly, inner thighs, buttocks, or back – areas where men typically grow this type of hair. This is because Hirsutism is often caused by an excess in male hormones, primarily testosterone.

 

Roughly 75% of all women with PCOS have hirsutism, whereas only 25% of women with T1D and PCOS present with it, giving reasons to why sign of PCOS may be frequently overseen by clinicians taking care of women with T1D. Research show a significantly higher waist circumference in type 1 diabetic girls with hirsutism in comparison to non-hirsutism girls with T1D. Waist circumference is believed to be from high insulin resistance, hyperinsulinemia, and elevated testosterone levels.

 

Difficulties Losing Weight

As discussed above, injectable insulin can stimulate the production of excessive androgens. High androgen levels in women with T1D can lead to increased insulin resistance, creating an environment where a higher quantity of insulin is needed to regulate blood sugars.

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When insulin levels are continuously elevated, body fat, usually in the abdomen, will be stored. The bigger one’s midsection gets, the more insulin resistant they become, therefore needing more insulin leading to higher androgen production. This is a vicious cycle that can feel nearly impossible to break. However, with the right nutrition and exercise plan, insulin regimens, supplements, and potential hormone replacement therapy, a woman with T1D and PCOS can optimally manage both conditions.

Diagnosing PCOS in Type 1 Diabetes

Using the PCOS Rotterdam Criteria, a type 1 diabetic woman will need 2 of the 3 criteria below to be diagnosed with PCOS:

  • Hyperandrogenism
    1. Physical: excessive acne, hair loss on scalp, or hirsutism
    2. Chemically: elevated serum levels of total testosterone, free testosterone, or DHEA.
  • Oligomenorrhea
    1. Cycle more than 35 days apart but less than 6 months apart
    2. Absence of menstruation for 6-12 months after cyclic pattern has been established.
  • Polycystic Ovaries
    1. Ovary containing 12 or more follicles (or 25 or more follicles using new ultrasound technology) measuring 2-9mm in diameter
    2. Ovary that has a volume of greater than 10mL on ultrasonography.

Bottom Line

In conclusion, even though a woman living with type 1 diabetes may not present with any PCOS traits, their risk of developing and/or already having PCOS is much higher than the general population. If a woman with T1D has gained unexplainable weight, has troubles losing weight, menstrual cycles are irregular, or have had difficulties getting pregnant, she should get screened for PCOS by asking her doctor to run the following tests:

  • Leutinizing hormone (LH)
  • Follicle stimulating hormone (FSH)
  • DHEAS sulfate
  • Total & free testosterone
  • Transvaginal pelvic ultrasound

 

Kelsie Patterson, MS, RDN, LD, CDCES, CPT, LWM has lived with and managed type 1 diabetes for 14 years, including while competing in collegiate sports. She is a Registered Dietitian, Certified Diabetes Care & Educator Specialist, and Certified Personal Trainer. She started, “The Diabetes Dietitian,” to help diabetics gain control of their blood sugars, lose weight, and become the healthiest & happiest version of themselves. Kelsie encourages her clients to strive for their goals, whatever they may be, by implementing individualized strategies for success. Kelsie finds great joy in helping others living with type 1 diabetes live out their BEST lives without chaotic blood sugars getting in their way!

 

References

  1. Escobar-Morreale HF, Roldán-Martín MB. Type 1 Diabetes and Polycystic Ovary Syndrome: Systematic Review and Meta-analysis. Diabetes Care. 2016;39(4):639-648. doi:10.2337/dc15-2577
  2. Bayona A, Martínez-Vaello V, Zamora J, Nattero-Chávez L, Luque-Ramírez M, Escobar-Morreale HF. Prevalence of PCOS and related hyperandrogenic traits in premenopausal women with type 1 diabetes: a systematic review and meta-analysis. Human Reproduction Update. Published online March 3, 2022. doi:10.1093/humupd/dmac011
  3. Roldán B, Escobar-Morreale HF, Barrio R, et al. Identification of the Source of Androgen Excess in Hyperandrogenic Type 1 Diabetic Patients. Diabetes Care. 2001;24(7):1297-1299. doi:10.2337/diacare.24.7.1297
  4. Amato MC, Guarnotta V, Ciresi A, Modica R, Pantò F, Giordano C. No Phenotypic Differences for Polycystic Ovary Syndrome (PCOS) Between Women With and Without Type 1 Diabetes Mellitus. The Journal of Clinical Endocrinology & Metabolism. 2014;99(1):203-211. doi:10.1210/jc.2013-2669
  5. Codner E, Iñíguez G, Villarroel C, et al. Hormonal Profile in Women with Polycystic Ovarian Syndrome with or without Type 1 Diabetes Mellitus. The Journal of Clinical Endocrinology & Metabolism. 2007;92(12):4742-4746.
  6. Samara-Boustani D, Colmenares A, Elie C, et al. High prevalence of hirsutism and menstrual disorders in obese adolescent girls and adolescent girls with type 1 diabetes mellitus despite different hormonal profiles. European Journal of Endocrinology. 2012;166(2):307-316.
  7. Codner E, Soto N, Lopez P, et al. Diagnostic Criteria for Polycystic Ovary Syndrome and Ovarian Morphology in Women with Type 1 Diabetes Mellitus. The Journal of Clinical Endocrinology & Metabolism. 2006;91(6):2250-2256.
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