Meghan Markle's Tips for Pregnant Women With Chronic Illness
Pregnant with a thyroid condition? Or diabetes? Not advocating for yourself during those nine months can have devastating consequences. And your doctor can often make the problem worse. Here’s everything you need to know.by Erin L. Boyle Health Writer
Thanks to the speed of social media, it’s practically old news that Meghan Markle, the Duchess of Sussex, is breaking royal tradition to give birth her way this spring. That includes using her own female health care team and a doula, and possibly delivering at home instead of in the Lindo Wing at St. Mary’s Hospital in London. In the past, two male gynecologists have delivered British royal babies at the hospital, a custom followed by, among others, Princess Diana and Kate Middleton, Duchess of Cambridge.
From the media reports and rumors swirling around, it also sounds like Markle is seriously considering having a midwife-led delivery — which science shows can be a smart move: According to a study published in PLOS One in 2018, greater integration of midwives during delivery led to significantly lower rates of cesarean sections (also called C-sections), preterm births, low birth weight, and neonatal deaths.
“For several days, I was terrified I would lose my baby — again.” — Erin Boyle, Hashimoto’s thyroiditis and hypothyroidism patient advocate
When I see Meghan Markle handling her pregnancy on her own terms, I take inspiration — particularly as a woman with Hashimoto’s thyroiditis and hypothyroidism who has to regularly advocate for her own health… and particularly when pregnant. And the response Markle’s gotten from some in the media — one British outlet criticized her as a birth “brat” — reminds me of what can happen to those of us with chronic illness who work to advocate for our own health choices: We can be written off as “doctor knows best.”
When to Talk to Your Doctor
In 2010, before I was diagnosed with hypothyroidism, I’d had a first trimester miscarriage that I couldn’t explain. I likely had untreated hypothyroidism at the time — and, according to Thyroid Awareness, a blog from the American Association of Clinical Endocrinologists and the American College of Endocrinology, a woman who has untreated hypothyroidism is at “greatest risk for a miscarriage during [the] first trimester.” (A 2014 study found that approximately 63% of pregnant women on thyroid drugs had thyroid stimulating hormone (TSH) levels above the recommended 2.5mU/L — and also had a higher risk of miscarriage. More on this study later.) Not to mention that 8-12% of all pregnancy losses are the result of endocrine factors (like thyroid issues), per a 2012 literature review published in the Indian Journal of Endocrinology and Metabolism.
And it’s not just thyroid problems that need monitoring during pregnancy. Women who have chronic illnesses such as diabetes, multiple sclerosis, Crohn’s disease, ulcerative colitis, and lupus should meet with their OB-GYN before becoming pregnant to discuss their illness and pregnancy, says Andrea Eisenberg, M.D., an OB-GYN in the Detroit metro area. It’s important to know the pregnancy prognosis for your condition as well as to figure out whether meds would need to be altered or changed.
“The earlier this is done, the better, so if medications need adjusting prior to pregnancy to avoid exposure to the fetus, there is time to do so and see if there are any issues,” Dr. Eisenberg says. An example, she says, is if a patient has a seizure disorder. They’ll need time to switch to a medication that is safe in pregnancy while maintaining their health.
Advocating for Your Own Care
From diligent research — including speaking to my integrated care physician — about hypothyroidism and potential pregnancy complications before my second pregnancy in 2017, I knew that miscarriage wasn’t my only concern. Jon Russell, M.D., an endocrine surgeon at Johns Hopkins in Baltimore, says that the American Thyroid Association (ATA) is an excellent resource for women to learn more about thyroid and pregnancy. One of its key statements is that “for the first 10-12 weeks of pregnancy, the baby is completely dependent on the mother for the production of thyroid hormone.” It isn’t until the end of the first trimester that the baby’s thyroid starts making its own thyroid hormone.
“Clearly, untreated hypothyroidism is bad for both the mom and the baby and can lead to long-term cognitive defects in the child,” says Dr. Russell. “Their brain doesn't develop properly. It's very important that mothers be [regularly] tested and babies be tested, moms hopefully prior to conception, if the mom has a history of hypothyroidism.”
Still, my biggest fear remained: miscarriage. Even with controlled thyroid levels on hormone replacement medication, you’re still at risk for a miscarriage in the first trimester with hypothyroidism because two pregnancy-related hormones (human chorionic gonadotropin, known as hCG, and estrogen) cause thyroid hormone levels to increase. The hCG hormone, made by the placenta, is similar to TSH, stimulating the thyroid to produce more hormone. So — if you're already on thyroid medication, which works by adding thyroid hormones to your body (called "replacement therapy"), you likely have too much TSH in your system in your first trimester of pregnancy. What happens then? Researchers of the 2014 study on pregnant women on thyroid meds at risk of miscarriage mentioned earlier, published in The Journal of Clinical Endocrinology and Metabolism, discovered that approximately 63% of pregnant women on thyroid drugs had TSH levels above the recommended 2.5mU/L during their first trimester. These women had a higher risk of miscarriage during pregnancy than women whose TSH values were below 2.5mU/L, according to the study.
And yet when I called my OB-GYN after learning I was pregnant at about 4 and a half weeks, despite briefing them on my medical history and asking to be seen immediately to confirm my pregnancy in the office and discuss next steps, I was told that I could just wait until the first ultrasound, at 8 weeks, to be seen by the doctor for the “pregnancy-confirming” appointment. With no further discussion.
For several days, I was terrified I would lose my baby — again.
Then I thought: Wait. I can advocate for my own care. I can contact my specialist and explain the situation. I don’t have to sit here, scared, and wait for an appointment with my OB-GYN that might be too late.
So I called my endocrinologist and asked to be seen right away, even though I knew the doctor was typically booked weeks in advance. He got me in quickly, and yes: He had to adjust my thyroid medication to achieve the optimal range to maintain my pregnancy.
Advocating for my health in that moment was one of the best decisions of my life. I gave birth to my healthy son two years ago.
Not All Doctors Know All
My OB-GYN experience is not uncommon, says Mary Shomon, co-author of The New York Times best-selling book “Your Healthy Pregnancy with Thyroid Disease: A Guide to Fertility, Pregnancy, and Postpartum Wellness.” Shomon, who has hypothyroidism, has been a thyroid patient advocacy education coach for 20 years, providing more than 500 women with evidence-based information to take to their doctors. Many were pregnant.
She’s worked with women whose OBs didn’t know about the all-important need to confirm pregnancy early and have their thyroid levels tested ASAP or about pregnancy-specific TSH guidelines for each trimester. Shomon cites a study from 2007 in the journal Thyroid, which uncovered a “suboptimal level of knowledge” about thyroid disease and pregnancy in OB-GYNs, internists, family physicians, and even endocrinologists themselves.
Study authors developed a 16-item questionnaire on issues related to thyroid disease and pregnancy, and of those questions, 63% responded correctly. Authors recommended a comprehensive physician education program be used in the future for doctors who encounter pregnant patients with thyroid issues.
Which means: For those patients with doctors in the other 37th percentile, advocating for themselves would be essential to achieve the best results. With Shomon’s clients, some pregnant hypothyroid women without adequate thyroid medication dosage in their first trimester experienced miscarriages.
“Some, however, went to appointments armed for battle, advocated for themselves, changed or added doctors when necessary, and were able to go on to have a healthy pregnancy by getting appropriate care,” she says.
But it isn’t always easy.
What Are the Risks?
Many women — all kinds of women, not just the married-to-a-prince-level-famous ones — have created pregnancy and birth plans that were dismissed for one reason or another. But ignoring the plan of a pregnant woman with a chronic illness presents its own set of often more intense challenges.
Having a chronic illness and being pregnant generally puts you, as the mom, at risk for more complications, both prenatally and during childbirth, than healthy women, according to a 2014 study published in the journal BioMed Central. Every 10th woman with at least one chronic disease gave birth to a premature infant, compared with 1 in 13 women in the healthy control group. And the women with chronic illness also had more C-sections than the healthy women. C-sections come with their own set of concerns: Per a 2018 systematic review and meta-analysis published in PLOS Medicine, the worst (and most common) outcomes associated with having a C-section included pelvic floor dysfunction for mom and asthma for babies. Subsequent pregnancy risks included placenta previa, uterine rupture, and stillbirth.
How complex the pregnancy complications with chronic illness will be depend on a woman’s illness type and how well that illness is controlled, says Dr. Eisenberg.
With chronic hypertension, women have a higher risk of superimposed preeclampsia later in pregnancy.
With diabetes, if it’s not well-controlled prior to pregnancy, there is an increased risk of miscarriage and fetal anomalies in the first trimester.
“So it is best if women have their illness in optimum control before considering pregnancy to minimize complications,” she says.
There’s another type of risk, too: In a word, stress, per a 2014 study published in the Journal of Obstetric, Gynecologic, & Neonatal Nursing, which found that as some study participants progressed in their pregnancies, the effects of their chronic conditions began to impact their outcomes. “Each participant tried to manage her physical symptoms but often had no control over what was happening,” said study authors Lynda A. Tyer-Viola, Ph.D., a certified registered nurse, and Ruth Palan Lopez, Ph.D.
Women with chronic illness also focused less on the baby and their future lives and more about how their conditions would affect their pregnancies. Because of this, Dr. Tyer-Viola and Dr. Palan Lopez believe that pregnant women with chronic illness may “benefit from interventions aimed at helping them balance the blessings and burdens associated with the symptoms of pregnancy.” Perinatal nurses were vital in the care of their study participants to reduce perinatal stress, as well as “celebrating pregnancy milestones and encouraging positive thinking.”
When Your Doc Dismisses Your Questions
Knowing the issues unique to your chronic illness and pregnancy is helpful, but what if your ideas run counter to your health care professional’s? A study published in the BMJ in 2013 — titled “What happens when patients know more than their doctors?” — revealed that educating diabetic patients about their chronic condition caused issues with their health care providers, including in the use of their medicine and diabetes-related supplies. “When these professionals did not understand what their patients were trying to do and were uncomfortable trusting their expertise, there could be serious consequences for these patients' ability to continue effective self-management,” the researchers said in the study.
Don’t get us wrong: It’s absolutely true that we need to follow our doctor’s care — they have the medical degrees, after all. We need doctors. But we also need to value and honor what our bodies are telling us through a patient-centered care model.
Ginger Vieira, co-author of the book "Pregnancy With Type 1 Diabetes" (the only guide for women with type 1 diabetes during pregnancy), has first-hand experience of what can happen when doctors don’t trust patients. Vieira, who herself has type 1 diabetes, was induced for three full days during her first pregnancy because her body wasn’t responding to the induction drug, Pitocin. Labor and delivery staff wouldn’t give her insulin unless she was eating — and hospital protocol said she couldn’t eat while on the induction drug — or if her blood sugar was over 140 mg/d, which was also hospital protocol but not a safe range for her (or her baby). So she had to sneak insulin injections in the hospital bathroom to maintain her blood sugar in the ideal range of 80 to 130 mg/dL.
Vieira wasn’t wrong in worrying about what could happen to her baby if her own blood sugar was high — having a high blood sugar level that is poorly controlled throughout pregnancy can put babies at risk for severe neonatal hypoglycemia, per a study published in the Indian Journal of Endocrinology Metabolism in 2013.
In the delivery room, Vieira argued with the nurses and doctors, telling them she knew her body and the insulin it needed, but they didn’t listen. “They treated me like I didn’t know what I was doing,” she says.
One main issue, she believes, was that her OB-GYN doctors were not specialists in type 1 diabetes. In her experience, OB-GYNs sometimes approach type 1 diabetes and gestational diabetes, which they might have more experience with, as the same condition. But they are not.
The nurses and doctors did stop arguing with her when the insulin they gave her postpartum did not protect her blood sugar level from the amount of carbs in her hospital dinner, which sent her level skyrocketing.
Vieira’s frustration with her OB-GYN care team is a common experience for pregnant women with diabetes: In a 2018 study published in Diabetes Spectrum, patients who’d been pregnant with type 1 diabetes described a “lack of support and empathetic engagement from their health care team, which affected their clinical management.” Specifically, they felt guilty and worried about their glucose levels and having difficult interactions with their doctors.
The study author’s recommendations? Patient-centered programs that provide clinical and psychosocial support for women with diabetes who want to get pregnant, so they are fully supported throughout their pregnancies.
So What's a Mom-to-be to Do?
During your very first appointment with your OB-GYN, it’s critical to establish a pregnancy plan so you know when you need additional tests, monitoring, and care for your particular chronic illness, says Dr. Eisenberg. “For this appointment, the more information the patient can bring, the better — meaning records from other physicians, lab work, etc.,” she says.
In my second pregnancy, I did this very thing. After my endocrinologist started early monitoring of my thyroid levels in the first trimester, I brought together lab work and notes from various specialists who did not use the same electronic medical system as my OB-GYN, to ensure everyone saw the same reports.
Also key? Viewing the doctor/patient relationship as a team effort, says Johns Hopkins’s Dr. Russell. Doctors need to respect that many patients are quite informed about their specific conditions; patients, in turn, need to respect that doctors have training and understanding of the complexity of medical research.
Yes, doctors can sometimes feel threatened by patients with a great deal of knowledge as the BMJ study learned. But effective communication — including listening and sharing — is crucial in all doctor/patient interactions, both for the best outcome and to prevent a combative relationship.
Shomon tells her pregnant thyroid clients to focus on facts and data, and less on emotion, when communicating with their pregnancy physicians about their chronic conditions. Certain serious issues can be seen as normal for a typical mom-to-be or new mother, she says, so you need to be specific about why they’re concerning for you.
“I recommend quantifying as much as possible,” Shomon says. “‘I'm losing 500 hairs a day,’ or ‘I'm sleeping 11 hours a night and I'm still exhausted’ or ‘I'm eating 1,800 calories a day, walking 2 miles a day, and still gaining 3 pounds a week,’ or ‘When I pump, I'm only getting 1 ounce of milk every 5 hours,’ rather than complaining in more emotional terms. This helps doctors hear your concerns more clearly.”
Finally, remember this: You want health care pros that suit your needs — so just because your friend without a chronic illness loved so-and-so obstetrician, that doesn’t mean that person will work for you. “Depending on what the chronic illness is, it may be beneficial for the woman to have a consult with a maternal-fetal medicine (MFM) specialist,” says Dr. Eisenberg. “Many times I will work in conjunction with an MFM in managing a patient with a complex health history. If I have a patient with diabetes on insulin, the MFM will take over the insulin management, which can be complicated.”
For her second pregnancy, Vieira left her non-specialist OB-GYN and chose an MFM practice — which led to a much smoother pregnancy and better childbirth experience. The MFM physicians trusted her to alert them when she sensed a problem, and she trusted them to act on her concerns. The doctors even wrote a note in her hospital postpartum care chart that empowered her health advocacy: “Ginger decides her own insulin.” (“So every nurse had to ask me about my insulin before giving it to me,” Vieira says.)
In retrospect, I wish I’d also seen an MFM specialist so I’d have had more nuanced thyroid care from my birth team, but I’m glad I realized I could reach out to my endocrinologist and ask for the tests I needed in time to protect — and keep — my pregnancy.
Advocating for your health, just like Meghan Markle is doing with her pregnancy and birth planning, is one of the most effective ways to receive the best care, says Dr. Russell. He wants his patients to be as educated as they can about their chronic illnesses — and to share their health information among doctors.
“I think the general idea of advocating for your health is a great idea, which seems to be what the Duchess is doing,” he says.
And when someone prominent does such a thing, it opens up new conversations and brings attention to an important issue. So thank you, Meghan Markle, for advocating for your health. The end result — for our health and well-being, and our babies’, too — will be better for it.