Overlooked & Ignored: Why Women Don’t Get a Thyroid Diagnosis

Thyroid disease affects an estimated 30 million Americans, and nearly 90% are women. The most recent stats say that one in eight women can expect to develop hypothyroidism in her lifetime. This means that if there are 100 of us at a party, a conference, in a classroom, working in an office, at the grocery store, statistically more than 10 of us might be struggling with a condition that can:

• Lead to gain weight, sometimes a substantial amount of 30 or more pounds even over a few months, regardless of what we eat or how much we exercise
• Affect our cognitive function, including memory and focus
• Cause depression, anxiety, or poor sleep
• Affect our hormones, including causing heavy periods, lack of periods, fertility problems, ability to produce enough breastmilk for our babies, and our healthy transition into menopause, to name just a few
• Cause elevated cholesterol which in turn leads to being prescribed a statin medication, which itself may increase an otherwise healthy woman’s risk of developing diabetes
• Leave us feeling so fatigued that, for some women, it affects everything in their life: their ability to work and earn a living, their ability to mother, and their ability to maintain a sex life.

Not only are 1 in 8 women potentially affected, but so are teens and young girls – and at alarmingly increasing rates. I have several girls in my own medical practice whose Hashimoto’s began between the ages of 5 to 8 years old, diagnosed on the basis of stigmatizing weight gain, fatigue, and poor school performance because they just couldn’t focus.

Having Hashimoto’s, the autoimmune type of hypothyroidism, also increases your risk of autoimmune disease. Autoimmune disease is one of the top 10 leading causes of death in women in the US. Hypothyroidism is often undiagnosed and, when diagnosed, is often under treated. Both lack of treatment and inadequate treatment result in unnecessary suffering and disability for millions of individuals, most of whom are women. Women are five to eight times as likely as men to be hypothyroid

This stuff is no joke for us, ladies.

“Just Stress…” is Not an Answer

It’s not just because hypothyroidism affects primarily women, and so many of us, that it’s a feminist issue. It’s a feminist issue because an exorbitant number of women suffer with this condition for years before getting a proper diagnosis or treatment, are dismissed and made to feel that it’s in their heads, told that it should be less of a problem than they’re making it out to be, or that their symptoms would be in their control if they just changed their lifestyle (or attitude).

Women may be told that their symptoms are anything but organic and biological; instead they have been told:

• “It’s ‘just stress;’ so get some extra rest, try therapy, exercise a bit more, maybe try meditation.”
• “These are symptoms of depression; here’s a prescription for an SSRI.”
• To “just eat less and exercise more.”
• To “control the fork going to your mouth if you want to lose that weight.”
• “You’re just overwhelmed because you’re a new mom – that’s normal and to be expected.”
• “We don’t know why you’re having fertility problems, but there are treatments for that.”
• “You’re fine. I can’t find anything wrong with you.”
• “Where did you get your medical degree, Google University?” Or, “Where did you read this, on Goop?” (More on organizations like Goop, and general perceptions of the “Women’s Wellness Movement” in a future article.)

These are all real quotes from patients of mine, said to them by a doctor they consulted for help with their symptoms.

Because the symptoms of Hashimoto’s, non-autoimmune hypothyroidism, and other autoimmune conditions contain mental health symptoms, and symptoms that are considered ‘somatic’ by the medical community – meaning physical manifestations of emotional or psychiatric issues – women presenting with these symptoms are too often summarily dismissed, their symptoms discounted. Research indicates that “physicians are more likely to interpret men’s symptoms as biological and women’s symptoms as psychosocial – that is, that women’s symptoms are a result of a mental, rather than physical, illness.”

Years of Struggling

Over the past year alone, I’ve received hundreds if not thousands of emails, Facebook comments, and personal notes from women who were dismissed for years, felt unheard, struggled with shame over their fatigue, memory problems, or weight, who went down long roads of treatment for other conditions whose symptoms were caused by hypothyroidism, including:

• Years of antidepressants or fertility treatments
• Putting their babies on formula when they really wanted to breastfeed but, thanks to hypothyroidism which is treatable, weren’t making enough milk
• Struggling with postpartum depression as a result of undiagnosed postpartum thyroiditis, a condition that affects 10% of new moms in the first year after birth (and that is a conservative estimate)
• Of the women who struggled with postpartum depression, many put off having a second child for as long as 6 years (or more) because they were so afraid to go through postpartum depression again. And their fears have merit: postpartum thyroid problems are likely in as many as 47% of women who experienced them previously.

Undiagnosed or improperly treated thyroid disease is not just a matter of inconvenience or short-term suffering for women – though “short-term” is relative; it can take up to 5 years to get a proper diagnosis. Untreated hypothyroidism has serious risks. In women in their 60s, it can increase the risk of heart disease and dementia. Yes, that’s right. In younger women, the quality of life costs are incalculable: mistreated depression, the personal impact on relationships, fertility problems, or the tremendous suffering of being overweight that some women experience in a culture that prizes thinness. The health risks for young women are no less real: high cholesterol and heart disease can result from hypothyroidism. 

Dismissed, Overlooked, Ignored: Paternalism in Action

But there’s more to the story that makes it, like so many women’s medical issues, a feminist issue, and when I say a feminist issue, I mean a condition, situation, or problem uniquely facing women and caused, perpetuated, or reinforced by cultural values, stereotypes, and attitudes that are harmful to women.

• It is the dismissal by the medical system of women’s voices, needs, and very real symptoms that makes thyroid problems a feminist issue.
• The paternalistic medical model that persists today leads women to be dismissed, overlooked, ignored, condescended to, and left to suffer with the internalized concern that “maybe this is just my imagination after all” – that makes thyroid problems a feminist issue.
• It’s an authoritarian, hierarchical, “power-over” medical model that leads women to be afraid to speak up in the office lest they be labeled ‘difficult,’ ‘complaining,’ or receive the eye roll that ‘those patients’ get, that makes thyroid problems a feminist issue. Studies have shown that in order to be taken seriously as patients by the medical profession we downplay our symptoms and the impact these are having on our lives.
• It’s a system in which women’s concerns and self-reporting of symptoms are often not taken seriously by medical professionals because women are viewed as “overly emotional and likely to exaggerate their symptoms.”
• It’s a system that only recognizes objectively measurable medical conditions, dismissing the subjective experience of women patients. This is particularly relevant with hypothyroidism, a condition in which the currently accepted upper normal range for TSH, the main lab used to detect hypothyroidism, is contested as too high, leading to under diagnosis of hypothyroidism, and where the use of TSH alone rather than a more complete thyroid panel, may also prevent appropriate diagnosis. This is discussed at greater length here and in my book The Adrenal Thyroid Revolution.

A History of Bias

Modern western medicine was built on a historical foundation of beliefs, attitudes, and philosophies that were inherently sexist and even misogynist. Women were seen as the lesser sex, our mental stability fragile and hinging on the proper location of the uterus in the body. (Hysteria, originally attributed to women, was so named because it was believed to occur as a result of the uterus wandering around the body. Hysterikos is the Greek word for uterus.) At the end of the 19th century, “unexplained conditions in women were often seen as attempts to gain power or attention.”  Women often went without treatment if physicians deemed them either “overly feminine or overly aggressive and opinionated.”

Even well into the 1970s, only 7% of medical doctors were women. One of the reasons given for lack of our acceptance into the professional was that we couldn’t be relied on for 5-7 days of the month – mentally, emotionally, or physically – because of our hormones. While there are certainly more women in medicine today, gender bias persists and negatively affects both women doctors and the health outcomes of women patients.

Oppressive practices have been systemically ingrained in medicine by historically-based beliefs and social constructs about women. We were – and continue to be  – treated as subordinate, powerless, and emotional. We are expected to be passive, dependent, agreeable, and accepting of whatever we’re told.

Difficult Women

Women who speak up, stand out, or who demand appropriate care are labeled difficult. This term may even make its way as a descriptor into a patient’s medical chart. I was called difficult in my first pregnancy in 1984 for refusing an unnecessary prenatal ultrasound. I was called difficult as a medical resident for speaking up for myself. (I was actually derogatorily referred to as a “Jewish woman” in my 3^rd year of residency training, implying that I speak, talk back to authority, assert myself, and am therefore difficult.) And I’ve heard far too many doctors refer to women patients, usually those with chronic health conditions such as chronic fatigue, fibromyalgia, or ‘alleged’ thyroid problems, as difficult. PIA (pain in the ass) is an acronym so commonly used by doctors in hospitals, clinics, and private offices as to have jokingly made its way into many medical acronym lists circulated in medical and residency training. Women who express a confusing array of symptoms that aren’t validated by test results, or summed up into the tidy package of a medical condition, are considered hypochondriacs.

It’s a system known for ineffective doctor-patient relationships and gender bias that leads to statistically significant amounts of misdiagnosis, delayed or inappropriate medical treatment, and women seeking help anywhere they can find it – including from “Dr. Google” – when meaningful help is nowhere to be found in the doctor’s office.

It’s a feminist issue because it affects at least 1 in 8 women. That’s a f#©! ton of women suffering with a condition that remains marginalized in medical care and for which the only treatment is a lifelong prescription for thyroid hormone. Even after diagnosis or treatment, many women never receive appropriate follow-up, leaving them symptomatic on the wrong medication – or possibly on the right medication but at the wrong dose for her personally. This problem affects women across all ages, socioeconomic settings, and races, but is exacerbated by the latter two factors.

A Low Priority

Despite the significant numbers of women experiencing autoimmune disease, there has been no prioritization of autoimmune disease on public health or medical agendas – and this makes it a feminist issue because most autoimmune disease sufferers, not just Hashimoto’s sufferers, are women. If there’s been any prioritization, it’s been that of targeting pharmaceutical ads for autoimmune disease to women during prime-time television. Just watch TV for an evening and you’ll see ads for Humira and numerous other medications with serious adverse effects. There has been no significant investigation into how the doctor-patient relationship affects women with Hashimoto’s or other autoimmune diseases, and very little research into the root causes of escalating levels of thyroid and autoimmune disease in individual women or collectively as a reflection of something going on in our personal and global ecosystems.

Yet it is well-established through extensive research from the world of toxicology, that women are uniquely vulnerable to environmental toxins, including damage to our thyroid as a result of exposure to pesticides, herbicides, phthalates, heavy metals, and more. Studies from Alesio Fasano, MD and others  that food triggers, particularly gluten, as well as artificial sweeteners, can cause Hashimoto’s, and research into the microbiome, has revealed a connection between microbiome disruption, intestinal hyperpermeability, and Hashimoto’s.

We’ve Come a Long Way Baby, Let’s Go Further, Together!

While a recent Time magazine cover brilliantly lauded women who speak up as the Time Woman of the Year 2017, and while women are claiming more voice around sexual trauma with the #metoo hashtag and by speaking out, things are not only not getting better for women in many aspects intrinsic to our well-being, they’re getting worse.

Things are getting worse for women in healthcare, too. For example, in 2017, the US was one of only two countries in the world whose maternal mortality rate in childbirth was going up, not down. The top 5 surgeries performed in the US are done on women and include hysterectomies and cesareans – and at least 50% of each of these has been shown to be unnecessary, preventable with other non-surgical approaches (which, research shows, women are not appropriately informed about or offered), and which increase women’s risks of infection and death. And women already in a the hospital are much more likely to die of a heart attack than men. We rank near the bottom for access to healthcare internationally amongst ‘first world' countries, and even some developing nations.

Margaret Mead is attributed with these important words: Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.

Women with thyroid disease are not a small group –  there 30 million strong in the US alone. We have to believe we can change the world – even when we’re tired. And those of us who are not struggling with the debilitating fatigue of hypothyroidism need to advocate for our sisters any way we can.

As women we need to stand up and use our voices to change how medicine is practiced. Yes, we need to be difficult women when we are being dismissed, overlooked, unheard, even if it means not being ‘a good girl.’ We deserve to be heard and treated fairly. We deserve to be treated as the best expert of our own body.  Because each woman is the best expert in her own body. This is a core principle of health feminism. And we deserve the best and safest testing and treatment, offered in a collaborative model.

Yes, YOU are the expert on your own body. It’s your doctor’s job to honor that, to listen and to give you the trust, support, information, and access to resources you need to help you live your best life. That’s what the whole medical profession should be about. Until it is, we’ll have to brave being labeled as ‘difficult women’ and demand the change. We can be difficult together.