Unseen, Misunderstood, Untreated: The case for thyroid care reform in Kenya

For Sarah Katulle, motherhood came with an unexpected companion—mystery symptoms that defied explanation.

After the birth of her daughter 13 years ago, Katulle began experiencing intense fatigue, unexplained weight loss, mood swings, brain fog, and heart palpitations so severe they often left her gasping for air.

“I started feeling like I was dying,” she recalls.

Like many new mothers, she turned to her doctors. But instead of answers, she received dismissal.

The symptoms were chalked up to stress, postpartum changes, or anxiety. She was advised to rest more, cut back on starch, and tough it out.

“I did everything they said. Nothing changed.”

It wasn’t until she had a terrifying encounter falling under a matatu while carrying her infant that Katulle found the courage to demand better.

“That day, I told the doctor I wasn’t leaving the hospital until I knew what was wrong,” she says.

A blood test and scan finally revealed the truth: she had Graves’ disease, an autoimmune condition that causes the thyroid gland to overproduce hormones.

It’s one of several thyroid disorders that, while treatable, often go undetected for years, especially in Kenya.

An Unseen Condition with Widespread Impact

The thyroid gland may be small, but its influence on the body is enormous.

Shaped like a butterfly and located in the neck, it regulates metabolism, mood, sleep, fertility, heart rate, and even body temperature.

When it stops working properly, the effects ripple through almost every system in the body.

Thyroid disorders come in different forms:

• Hypothyroidism – where the gland is underactive, slowing down the body’s processes.
• Hyperthyroidism, like in Katulle’s case, becomes overactive.
• Goitre – an enlarged thyroid, which may or may not affect hormone levels.
• Thyroid nodules – lumps that are usually benign but can signal deeper issues.

Graves’ disease, the most common cause of hyperthyroidism, is autoimmune, meaning the body mistakenly attacks its thyroid.

What makes these conditions particularly elusive is the way their symptoms mimic more familiar issues: stress, fatigue, weight changes, or menstrual irregularities.

Many patients, especially women, are misdiagnosed for years or told their complaints are in their heads.

“By the time patients reach me, most have already seen multiple doctors and been treated for everything but the thyroid,” says Dr. Rosslyn Ngugi, an endocrinologist who works with Katulle’s foundation.

“Some have even been on antidepressants or malaria medication before anyone thought to check their hormone levels.”

Costly Tests and Specialist Shortages

A key barrier to timely diagnosis is access, both to tests and to qualified professionals.

A basic TSH (thyroid-stimulating hormone) test can cost between Ksh. 1,500 and Ksh. 3,000, while a full thyroid panel might go up to Ksh. 15,000.

For many Kenyans, especially those relying on public healthcare or living in rural areas, this is simply unaffordable.

Once diagnosed, the struggle continues. Medications like carbimazole, levothyroxine, or beta blockers aren’t always available in government hospitals.

Imported brands can be expensive or out of stock, and only around 40 endocrinologists serve a population of over 50 million.

Katulle’s journey reflects these systemic challenges. Even after her diagnosis, she was sent to the wrong specialist.

It took nearly eight more years before she connected with an endocrinologist who helped stabilize her condition.

“In just two months, he managed what others hadn’t in nearly a decade,” she says.

Turning Personal Pain into Public Action

The turning point came in 2014, when a close friend of Katulle’s died shortly after giving birth.

“She had all the signs of weight loss, fatigue, and anxiety, but was treated for malaria,” she recalls. “By the time they realized it was her thyroid, it was too late.”

Shaken by the loss and frustrated by the silence around thyroid disease, Katulle decided to act. In 2015, she began sharing her story on Facebook.

“I was overwhelmed with questions from people experiencing the same symptoms I had. There was a glaring information gap and no community to lean on. So, I built one.”

By 2017, she had formally registered the Thyroid Disease Awareness Kenya (TDAK) Foundation. Its mission: raise awareness, educate the public, support patients, and advocate for policy change.

Today, TDAK operates in 27 counties. Its WhatsApp support groups connect over 5,000 members, offering a safe space to share experiences, ask questions, and access resources.

The foundation has partnered with hospitals, labs, and endocrinologists to make diagnosis and treatment more affordable.

It also trains community health workers to identify symptoms and refer patients for testing.

“There was no community, no support group, no local information,” Katulle says. “So I created one.”

Living Well With Thyroid Disease

Beyond medication, lifestyle changes play a big role in managing thyroid disorders. Dr. Ngugi notes that mental health is often overlooked but is deeply linked to thyroid health.

“Many patients are misdiagnosed with depression or anxiety before they get a thyroid test,” she says. “But mental health doesn’t just affect the experience of disease—it can also worsen symptoms.”

She recommends simple interventions: journaling, walking, reducing processed foods, and incorporating gut-friendly foods like kombucha. Diet is also crucial.

“For hyperthyroid patients, we advise avoiding excess iodine from seafood and iodized salt,” she says.

“Those with hypothyroidism need to watch out for goitrogens in foods like cabbage, broccoli, and soy, especially when raw.”

While lifestyle adjustments can’t replace medication, they help improve overall well-being—something Katulle now teaches in patient workshops and virtual forums.

A Growing Network of Solutions

In recent years, public-private partnerships have helped ease access to care. One such initiative is ThyroAfrica, a collaboration between Merck, Cerba Lancet, and local medical groups that has made thyroid testing more accessible in underserved areas.

The initiative offers subsidized diagnostics, teleconsultations, and medication delivery.

“You shouldn’t have to live in Nairobi to access care,” Katulle says. “With these partnerships, someone in Bomet or Voi can now get tested and speak to a doctor virtually.”

However, she is quick to note that real progress will only come when the government formally includes thyroid disorders in its non-communicable disease (NCD) strategy.

Currently, conditions like diabetes and hypertension receive far more attention and funding.

“We’re still invisible in the policy space. But that’s changing,” she says.

A Movement Takes Root

As Kenya marks World Thyroid Day on May 25th,2025, Katulle reflects on the transformation she’s helped lead—from being dismissed as an anxious new mother to mobilizing thousands of patients and caregivers.

“You are not alone,” she says. “Your struggle is real. Your healing is valid. We walk with you.”

Through storytelling, grassroots organizing, and strategic partnerships, Kenya’s thyroid community is demanding to be seen—and finally, they are.