by Dana Trentini
On a cold, snowy day in New York City in January 2009, I lay on a medical exam table on what would be one of the worst days of my life. I had miscarried a much-wanted child at 12 weeks and was being prepared for a D&C, a surgical procedure to remove the fetus. A technician had just taken an ultrasound and walked out of the room to reconfirm to the medical staff that my baby had no heartbeat. I sprang off my bed and ran to the image on the screen. I felt my body shake and my fists clench as I stared at the image of my unborn child. From a place deep in my soul came a wail.
What Happened to My Child?
When asked my choice of anesthesia, I asked for general anesthesia because there was no way in the world that I wanted to be awake through this procedure. I didn’t want to remember a single thing about their removing my child from my body. The anesthesiologist assured me that it would all be over soon and asked me to count backward from 10.
10 . . .
When I was pregnant with my first son, Benjamin, in 2006, I had fantasies of being a supermom. I was going to do it all—career, home, and family—and I was going to do it brilliantly.
Then fatigue came crashing over me.
I was diagnosed with hypothyroidism the year following Benjamin’s birth. I was given levothyroxine, the number one drug prescribed by mainstream doctors for hypothyroidism. You’ll discover in this book that while some do great on this treatment, many do not. I was one of those who didn’t.
Despite my thyroid hormone replacement medication, low-thyroid symptoms overtook my life. I was overwhelmed with a crushing fatigue that no amount of sleep could undo. The weight I’d gained during pregnancy stayed on and kept climbing. My hair was falling out in massive clumps and my scalp itched. My breast milk supply was low. The outer third of my eyebrows were missing. The heels of my feet were cracked and the skin on my body was pale, dry, and itchy. My face was pale, dry, and puffy. My eyes were red and inflamed with dark circles. My eyelids twitched. My legs were numb to the touch. Unusually heavy menstrual bleeding, chronic constipation, persistent headaches, itchy eczema, repeat urinary tract infections, low libido, allergies, anxiety, mood swings, insomnia, brain fog, and constant infections plagued me. Kidney stones landed me in the emergency room. A healthy woman prior to pregnancy, I now had blood levels indicating I had elevated cholesterol and blood sugar levels.
I watched other mothers doing it all and tried to keep up, but every day was a struggle. I felt like a failure.
What had happened to me?
. . . 9 . . .
When I was a girl, my father would sing Frank Sinatra’s song “New York, New York.” He would sing it at the top of his lungs and I believed that if I could make it in New York City, I really could make it anywhere. In New York City, one of the greatest cities in the world, I expected the best possible medical care. I trusted my Ivy League medical school–trained, award-winning New York City doctors. I never once thought they might not know everything there was to know about hypothyroidism—especially the dangers of thyroid disease in pregnancy. And I continued to trust them when I became pregnant for the second time in late 2008, following my thyroid drug protocol to the letter.
In my first trimester, I was overcome by a sick, tired, weak feeling. I recall the night I said, “I am worried that something is wrong with the baby.” But when I shared my anxiety with my doctors, they responded that my thyroid levels were safe and that it was normal in early pregnancy to be tired. I’d been pregnant before, and the way I felt now didn’t seem normal to me, but I disregarded my body’s warning.
. . . 8 . . .
Why didn’t I trust my gut instincts?
Why didn’t I put up a better fight with my doctors, and insist that something seemed seriously wrong with me and my baby?
Why did I naively think, “Doctor always knows best”?
I graduated in 1993 with an honors BA in neuroscience from the University of Toronto with high distinction, receiving multiple scholarships and prestigious awards. I worked for several years as a high school science teacher in a specialized school for intellectually gifted students. At Columbia University in 2002, I obtained an MA in organizational psychology and an EdM in counseling psychology. A distinguished Columbia University professor selected me as the team leader for his research team during the course of my studies. I was no stranger to scientific research. So, why hadn’t I used my science background and research skills to learn everything I could about my thyroid disease?
Why didn’t I get a second medical opinion?
You have no idea how many times I’ve asked myself these questions and beat myself up over them. I was once interviewed by a large digital media company for a story it wished to include about me online. I was being interviewed on camera in my home and I’ll never forget it.
The interviewer asked, “If you knew you weren’t feeling well, why didn’t you get a second medical opinion?”
I sat silent, thoughts racing through my head, feelings overwhelming me, then said, “I don’t know why.”
When the interview was over and the camera crew left my apartment, I’ll never forget closing the door and dropping down on the ground and crying. I cried like a baby after that interview. That interviewer had no idea how her simple fifteen-word question crushed me.
I’m not even sure how to answer that question. I’ve asked myself over and over again, going over scenarios of what I should have done but didn’t.
. . . 7 . . .
Thyroid-stimulating hormone (TSH) is a measure taken from a blood sample to test thyroid functioning. High TSH levels above the normal reference range are interpreted as indicating an underactive thyroid, known as hypothyroidism. Low TSH levels below the normal reference range are interpreted as indicating an overactive thyroid, called hyperthyroidism.
The Endocrine Society’s 2007 clinical guidelines “Management of Thyroid Dysfunction During Pregnancy and Postpartum” includes the following recommendations:
- If hypothyroidism has been diagnosed before pregnancy, thyroid hormone replacement medication dosage should be adjusted to reach a TSH level not higher than 2.5 mIU/L prior to pregnancy.
- If overt hypothyroidism is diagnosed during pregnancy, thyroid function tests should be normalized as rapidly as possible to TSH levels of less than 2.5 mIU/L in the first trimester (or 3 mIU/L in the second and third trimester).
Throughout my first trimester, my TSH remained higher than the above recommended 2.5 mIU/L, soaring close to 10.0 mIU/L. My doctors said that everything was fine and that TSH was only a concern in pregnancy above 10.0 mIU/L.
Wait . . . rewind . . . yes you read that correctly.
My doctors did not realize that my TSH close to 10.0 in pregnancy was a danger to me and my baby, because my doctors clearly had never read the guidelines.
And even if they had, while TSH is considered the gold standard in mainstream medicine for the testing of thyroid function, it does not give a complete picture of thyroid health. As you’ll learn in this book, there is much more to thyroid testing than TSH.
. . . 6 . . .
Scientific research reveals unequivocally that undiagnosed, untreated, or improperly treated thyroid disease:
- Increases the risk of infertility
- Increases the risk of miscarriage
- Increases the risk of stillbirth
- Increases the risk of maternal anemia
- Increases the risk of preeclampsia
- Increases the risk of placental abruption
- Increases the risk of premature delivery
- Increases the risk of breech birth
- Increases the risk of postpartum hemorrhage
- Increases the risk of low birth weight
- Increases the risk of neonatal respiratory distress
- Increases the risk of admission to neonatal intensive care
- Increases the risk of impaired fetal cognitive development
- Increases the risk of breastfeeding difficulties
- Increases the risk of postpartum depression
Given this knowledge, it would make sense that women would be routinely screened during pregnancy, right? And it would make sense that physicians providing obstetric care and physicians specializing in endocrinology would be especially careful to know and follow the latest treatment guidelines with their patients who have thyroid problems, and who develop thyroid disease during and after pregnancy?
Unfortunately, that is not the case.
In a study published in Thyroid in 2010, three waves of mail surveys were distributed to 1,601 Wisconsin health-care providers who were members of the American College of Obstetricians and Gynecologists or the American Academy of Family Physicians and who had a history of providing obstetric care. Of the 575 providers who completed the survey, only 11.5 percent (66/575) had actually read the Endocrine Society’s 2007 clinical guidelines.
In another study, a survey was distributed to 260 surgeons attending the 2009 American Association of Endocrine Surgeons’ meeting and 109 surgeons returned the survey. Only 23 percent (26/109) had read the Endocrine Society’s guidelines. Reading the guidelines was associated with a significantly greater likelihood of the doctors informing patients of the TSH guidelines for pregnancy, but the study didn’t indicate how many of the 23 percent who read them didn’t follow the guidelines themselves.
The upshot: an army of uninformed health-care providers is treating women with thyroid disease, and most of these practitioners have little understanding of the complexities or standards of care for pregnant thyroid patients and their babies.
. . . 5 . . .
A survey conducted in 2012 asked American Thyroid Association participating physicians—the majority of them endocrinologists—whether they thought all pregnant women should be screened for thyroid dysfunction. The results were reported at the 83rd Annual Meeting of the American Thyroid Association in 2013: Universal thyroid screening in pregnancy was recommended by 74 percent of the survey respondents. This was not the first time that universal thyroid screening in pregnancy had been recommended; it is likely not the last. Yet despite the fact that abnormal maternal thyroid function can have a detrimental effect on the mother and her fetus, universal screening is still not recommended as a guideline.
In 2014 the Endocrine Society reported that, according to recent World Health Organization (WHO) estimates, thyroid disorders affect 750 million people worldwide, making them even more prevalent than diabetes. Conservative estimates find that at minimum there are 27 million Americans with thyroid disease, but the experts believe that the actual number is closer to 60 million—at least half are undiagnosed.
In 2015, the Endocrine Society reported that for every 1,000 Americans, up to
- 8 have overt hypothyroidism
- 130 have subclinical hypothyroidism
- 5 have overt hyperthyroidism
- 4 have overt hypothyroidism
Thyroid conditions are five to ten times more common in women compared to men.
Given these statistics, there are pregnant women around the world right now who have thyroid disease. At least half of those women don’t even know they have a thyroid problem, and their doctors are not aware they are at risk. Some of these women will experience miscarriage, stillbirth, infertility, maternal anemia, pre-eclampsia, placental abruption, postpartum hemorrhage, premature delivery, breech birth, low birth weight, and births of babies with impaired cognitive development. These mothers will have no idea their thyroid problems were to blame.
In 2012 the Endocrine Society updated its 2007 guidelines for the management of thyroid dysfunction during pregnancy and postpartum. The committee tasked with creating the new guidelines did not reach agreement with regard to thyroid screening recommendations in pregnancy. Some members recommended screening of all pregnant women by the ninth week or at the time of their first prenatal visit. Other members recommended neither for nor against universal thyroid screening in pregnancy. There was unanimous agreement, however, that targeted screening of high-risk women was recommended.
Women planning pregnancy or who are newly pregnant are high risk if they meet one or more of these criteria:
- Are over age 30
- Have a family history of autoimmune thyroid disease or hypothyroidism
- Have a goiter
- Have thyroid antibodies, primarily thyroid peroxidase antibodies
- Present with symptoms or clinical signs suggestive of low thyroid function
- Have been diagnosed with type 1 diabetes mellitus or other autoimmune disorders
- Have a history of infertility
- Have a prior history of miscarriage or preterm delivery
- Have had prior therapeutic head or neck irradiation or prior thyroid surgery
- Currently receive levothyroxine replacement
- Live in a region with presumed iodine deficiency
However, on page 2560 of its guidelines, the Endocrine Society states:
There is unanimous task force agreement that targeted screening of high- risk women is recommended during the prenatal and perinatal periods. With this approach, the committee acknowledges the important data confirming that such case finding will unfortunately miss 30 percent or more of women with overt or subclinical hypothyroidism.
. . . 4 . . .
My miscarriage was the tipping point for me. After that, my hypothyroidism symptoms raged and I hit rock bottom. To tell you the truth, I don’t know how I made it through that dark time in my life. Following my miscarriage, my hypothyroidism symptoms worsened so dramatically that I struggled to stay awake to care for my young son. I knew that something was very wrong. If you’ve ever reached rock bottom with thyroid disease—where you can’t keep your eyes open and function each day—you already know there are no words that will ever come close to describing it.
I am a bookworm. I have been all my life. When I was a little girl, my mother was always telling me to go outside and play, while I hid in my room to read my books. At night when the lights were out, I would read with a flashlight under the covers. So, it figures that, when I reached my lowest point with hypothyroidism and worried I would never get back up, my climb out of that dark hole began with a book.
The day I stumbled upon the book Living Well with Hypothyroidism: What Your Doctor Doesn’t Tell You . . . That You Need to Know by world-renowned thyroid expert and New York Times best-selling author Mary Shomon was a miracle.
This book was my gut-wrenching “Aha!” moment. In reading it I realized that I lost my child all because my doctors did not optimally treat my hypothyroidism. I sobbed for days.
But until you are broken, you have no idea just how strong you really are.
. . . 3 . . .
It is a dream come true that I am joining forces to write this book with the woman that changed my life: Mary Shomon.
For three years after my miscarriage, I had dreams of writing my own book. One day I mentioned this to a friend. When she suggested I create a blog to help build a following for my future book, I asked, “What is a blog?”
This shows you just how little I understood about social media and about writing books.
But, on October 1, 2012, I took a leap of faith and launched my blog,
October is National Miscarriage Awareness month in the United States, and I’d intentionally timed the launch for October in memory of the baby I lost to hypothyroidism and in dedication to my two boys who beat the odds and made it to the world.
Within two years, Hypothyroid Mom had almost 3 million monthly visits from readers in more than two hundred countries around the world. I was voted the winner of two 2014 WEGO Health Activist Awards: Health Activist Hero and Best in Show Twitter. The blog has reached hundreds of thousands. Now, there are so many times that I lay my head down on my desk in gratitude. I am blessed to have connected with readers from around the world.
You may wonder why I created Hypothyroid Mom in the first place and why I am now writing this book with Mary. Here’s the real reason—pure rage.
Mothers and babies are being needlessly harmed from medical lack of awareness about thyroid disease. That is unacceptable.
I lost my child because I failed to be an advocate for myself and my child, and I have to live with that regret for the rest of my life. But I know that I’m not alone.
I know there are women like me, raised to respect authority and not challenge the status quo; women who hate confrontation; who right now are not advocating for themselves with their doctors.
I know there are women like me, who believe the “doctor knows best” and expect doctors to have all the answers.
I know there are women like me all around the world being told by their doctors their symptoms are “all in their head”—and who believe it.
I know there are women like me being handed prescriptions for antidepressants, sleeping pills, and/or anxiety medication when they complain of typical thyroid symptoms.
I know there are women like me being told they are hypochondriacs by family members and friends who just don’t understand what this illness does to us.
I know there are women like me feeling guilty because they don’t have the same energy that others around them do to keep up, to be a supermom.
I know there are women like me hesitant to speak up about their medical concerns for fear of being told they are overreacting.
I know there are women like me who feel that they are all alone. You aren’t alone. You aren’t overreacting. You can feel better.
After years of intense research and an unstoppable quest to find the top thyroid health professionals, I am now in the best health ever. At the age of forty, I got pregnant naturally with my second son, Hudson, and gave birth to him in 2010. Yes, miracle babies are possible for women with thyroid disease.
What is my hope for this book?
. . . 2 . . .
I hope that every woman with thyroid disease, whether they are struggling with hypothyroidism, Hashimoto’s disease, hyperthyroidism, Graves’ disease, thyroiditis, goiter, nodules, or thyroid cancer, will know there is hope to be well.
I hope that every woman suffering with infertility, due to undiagnosed or improperly treated thyroid problems, will have hope that pregnancy is possible and miracle babies do happen for us.
I hope that every woman who has suffered through a miscarriage or still-birth due to undiagnosed or improperly treated thyroid problems will know that she is not alone, and that my heart and passion is with her and our lost children. Our babies are precious, and their short lives inspire us to make change.
I hope that every woman who is currently pregnant and has undiagnosed or improperly treated thyroid problems will learn key action steps to help protect her unborn baby.
I hope that every family with a baby born with cognitive and developmental problems due to undiagnosed or improperly treated maternal thyroid problems will know that my heart is with them and that I hope with all hope that these children have blessed lives.
I hope that every woman who wants to breastfeed her newborn but finds herself unable to nurse or provide enough milk due to undiagnosed or improperly treated thyroid problems will know there is an underlying cause that can be resolved.
I hope that every woman experiencing fatigue, depression, and a host of other physical, mental, and emotional symptoms after childbirth due to undiagnosed or improperly treated thyroid problems will know that her symptoms are not all in her head. They are very real.
I hope that this book will bring about universal thyroid screening in pregnancy around the world.
I hope that, years from now, I will hear from the babies born to mothers with thyroid disease, thanks to this book, and I will smile.
One thought that has repeatedly struck me is how much easier my journey might have been if somehow, magically, some of the things I know now, I could have known when I was first diagnosed with hypothyroidism, or when my body first whispered a warning to me that something was wrong. Instead, I had to learn those things the hard way. I hope that by my sharing my story, my readers who suffer from this disease, and those who suspect they have it, might benefit from my experiences and what I have learned.
If my story saves the life of even one baby, I will have realized my mission.
. . . 1
—Dana Trentini, September 2015
Dear Reader: If what you’ve read in this “Introduction” chapter of Your Healthy Pregnancy with Thyroid Disease resonates with you, or gives you hope that a healthy pregnancy and a healthy, beautiful baby are in your future, please make sure to order your copy now on Amazon.com*.
* Note: Dana Trentini and Mary Shomon are participants in the Amazon Services LLC Associates Program, an affiliate advertising program designed to provide a means for sites to earn advertising fees by advertising and linking to Amazon.com. / Links to books at Amazon.com are provided for your convenience. Note that you may be able to get a specific book at your local library for free, at other online retailers, or your neighborhood bookstore as well.