Living with thyroid disease: Patients open up

The thyroid is a tiny gland in the neck whose overproduction or underproduction of hormones can cause many problems.

Over the years, there has been an increase in the number of Kenyans with thyroid diseases including hyperthyroidism, Graves’ disease, Hashimoto’s syndrome and thyroid cancer.

Experts believe many people with thyroid diseases do not know they have them, yet those who have had a proper diagnosis and treatment lead an improved quality of life. BDLife spoke to four women who had thyroid diseases about misdiagnosis, living with the little-known disease, and stigma.

Beth Meyner, 40s, hypothyroidism

Beth Myner was first misdiagnosed with a bunch of diseases. She had severe symptoms, she says, from irritability, rapid weight loss then gaining it fast, to inability to sleep.

“I would snap fast like a nuclear bomb. My neck was enlarged. I had tremors, which were the weirdest of the symptoms. My hands and left leg could shake. My body was unable to regulate temperature, so at one moment I would desire to stand in a freezer because I was hot, the next minute I feel so cold.

"Then I had a blurry vision so I was given spectacles to ‘fix’ the problem. I’d black out, feel dizzy, have constipation and bloating, and miss menses. My voice became hoarse and during cold seasons, I’d lose it. My eyes were so deep into the sockets and had very dark circles under the eye.

"Then there were the depressive moods where you sink so low and lose memory. I remember forgetting where our matatu stage was. I’d walk into a supermarket and forget what I’d gone to buy,” she says.

For over one year, she was in and out of hospital being wrongly treated for bronchitis, pneumonia and typhoid. She did tens of blood, stool and heart function tests but the doctor could not pinpoint the problem.

“I was finally referred to this endocrinologist who requested just one blood test, a thyroid profile,” she says.  After being diagnosed with hypothyroidism, in 2009 she did iodine therapy at Kenyatta National Hospital.

"In this treatment, a patient swallows a pill containing radioactive iodine. The radioactive material causes parts of the thyroid organ to die off. Thereafter, she was given hormone-replacement tablets, which she takes daily. The symptoms subsided.

“This is a hellish disease. You have to find another person living with it to know you’re alone. It is also expensive to treat. You do a blood test every month or three months and buy daily medicines,” she says.

Jacque Gachoka, 35, hypothyroidism

Jacque Gachoka, a mother-of-two, realised there was something wrong with her body when she gained 10 kilos in three months.

“I have tried everything; gym, diets, 36-hour fast…Sometimes I think if I had money I’d do surgery if it will help me lose weight,” she says.

She had just gotten her baby when she plunged into low moods.

“I’d be angry with everyone for no reason. I had anxiety and unexplained fatigue. I gaining weight, like ballooning,” she says.

At first, while staying in UAE, she was diagnosed with post-partum hypothyroidism, which the doctor said could have been triggered by pregnancy and would clear in three months.

But it did not. That was seven years ago. Now on daily tablets to manage the hypothyroidism, she says the biggest challenge is that society does not understand the disease.

“You become toxic but it is an involuntary action. People judge you unfairly because the symptoms seem like normal day-to-day struggles. You get sudden fatigue, so people wonder why yet you don’t look sick. Someone at a party once joked that I had a big stomach yet I wasn’t pregnant.

"I stopped the partying and educated them on thyroid diseases. I also got an online letter written by a woman with hypothyroidism and sent it to my family to help them understand me better,” Jacque says.

Thyroid disease is not a disease that you leave to your doctor to solely manage, she adds. It requires you to research how to cope with bursts of fatigue or low moods.

“When I was told I had a thyroid disease, I didn’t know what a thyroid gland was. Now I have researched on living a near-normal life. I take supplements such as selenium, fish oil, and Vitamin D, eat flax and chia seeds, and avoid a high intake of gluten. When I don’t take selenium, my anxiety levels go up. I used to get depression and lock myself in the room. Now I journal. It has helped,” she says.

She also does gardening. “My balcony has over 20 plants, lots of succulents. A flourishing plant excites me,” she says, adding “I’ve also discovered one thing I call ‘a random act of kindness.’ Helping people makes me happy. Like yesterday, I sent my friends flowers.”

What other symptom is she struggling with right now?

“Sensitivity to heat,” she says.

Sarah Katulle, 43, grave’s disease

Eleven years ago, Sarah Katulle was told she had Grave’s disease which affects the thyroid gland.

“It was just a few months after giving birth to my daughter, {now 10 years}. Finding proper treatment was very challenging because I didn’t know anything about the thyroid gland or thyroid disease,” she says.

Her symptoms ranged from pale and dry skin, sweating and shaking, racing heart {palpitations}, rapid weight loss, to bloating.

After the diagnosis, she was given anti-thyroid medications and then did a partial surgical removal of the butterfly-like thyroid gland.

Post-treatment, the disease threw her another curveball. She added weight, started feeling sluggish and sad.

To cope with the little-known disease, she researches. She also takes supplements that have helped her deal with the symptoms.

“Now I am okay,” she says.

A thyroid disease advocate, Sarah says what most patients struggle with is a proper treatment plan.

“Lack of awareness has contributed to a lot of misunderstanding about this disease,” she says.

There are also inadequate thyroid specialists.

“Patients are left with no choice but to deal with general physicians who often misdiagnose, misadvise and mismanage patients. Because treatment is inaccessible and unaffordable some patients have to come to Nairobi to see a specialist,” she says.

Rebecca Kaumba, 34, hypothyroidism

Rebecca Kaumba, who was diagnosed with hypothyroidism three years ago, says the biggest headache was getting a doctor with knowledge of thyroid disease. There is also societal stigma.

“I used to faint, forget things, have brain fog, just slowness in thinking, lose concentration, get extreme fatigue, muscle pain and anxiety attacks,” she says.

“I’d struggle to stay alert in a meeting or class for over 30 minutes.”

The doctors prescribed painkillers for the muscle ache after blood tests showed no infection.

Kenya has few endocrinologists and thyroid diseases share symptoms with many other illnesses, hence misdiagnosis is common.

Did getting the proper diagnosis after one year give her relief?

“It was relief and fear. Relief because finally, I could start treating the disease. Fear because I realised that it was a chronic disease. That I would take medications for life,” she says.

Post-treatment also comes with its challenges.

“The symptoms do not go away. The medicines make me feel like a zombie,” she says.