One man’s battle with little-known disease

Imagine going to the hospital because you feel unwell, but doctors cannot find anything wrong with you.

That is what happened to Allan Mutwiri Maimbu for close to one year, until he was finally diagnosed with thyroid disease.

Normally, your thyroid gland produces the hormones necessary to maintain healthy bodily functions. Your body uses energy too quickly when the thyroid produces excessive amounts of the thyroid hormone. This is called hyperthyroidism, the opposite of which is hypothyroidism.

Thyroid disease is a condition that affects many people; unfortunately, patients and some health care providers do not even recognise it.

According to research, up to 60 per cent of people with thyroid disease are unaware they have it, which can cause frustration over unceasing symptoms and unsuccessful treatments for misdiagnosed conditions.

According to experts, the disease can lead to life-altering medical conditions, as Mr Mutwiri reveals.

“My battle with hyperthyroidism started in 2020, even though I was diagnosed in December 2021. I started by getting fatigued even on the days that I did not work,” he says.

Mr Mutwiri would also sleep for longer than the recommended eight hours, and even then, he would wake up very tired. Additionally, he started having regular heart palpitations.

“My heartbeat felt very uncomfortable during those moments. I would feel it pounding in my chest, neck or throat. It was racing,as though I had been running.”

However, what worried Mr Mutwiri the most was the weight loss; within two weeks, he had lost two kilogrammes even though he ate about seven meals daily.

At the same time, his eyes started bulging out, and he lost his hair and memory. But doctors could not find anything wrong with him.

“The doctors would sometimes try treating infections or malaria, but I was still losing weight and getting sicker. It was very frustrating and it took a toll on me mentally,” he says.

Relationships

The sickness also affected his relationships, both at home and work. He would talk to his wife and forget what they had planned to do, and she would think he was just ignoring her.

Because of mood swings, he would lock himself up in his bedroom to avoid his children.

“I had very bad mood swings; one minute, I was okay, laughing, and the next minute I would snap at my family members. The next minute I would be feeling guilty about how I spoke to them, and because of that, I ended up locking myself in the room most of the time.”

At work, colleagues thought he was lazy because he would get tired after minor tasks. How people reacted would get to his head, affecting his mental well-being.

Mr Mutwiri got to a point where he gave up on living.

“I called my wife and told her where she would find everything – logbooks, title deeds, passwords to everything – because I knew I was dying.”

His wife encouraged him to see a doctor one more time, but he could not hear of it.

“My wife got worried and called our parents and immediately I started getting calls from everyone in the family. To make them relax I promised to go to the hospital one last time.”

He went to see a doctor, and told him he would not leave the hospital until they found out what was wrong with him.

After several tests, they decided to do a thyroid test, and doctors found out he had Graves’ disease, an immune system disorder that results in the overproduction of thyroid hormones (hyperthyroidism).

“I did not know what hyperthyroidism was but I had mixed reactions. First, I was happy because I knew what the problem was. I was tired of being asked every time what I was ailing from because I also didn’t have the answer.”

His happy moment was short-lived though, because he knew he would die soon from the disease.

“When they mentioned Graves’ disease, I knew my days were numbered and soon I would be dead, but the clinical officer at the hospital explained to me what I was suffering from even though they had little information about it,” he says.

Mr Mutwiri started his medication immediately.

For 16 months, he took 30 tablets every day until the medicine stopped working. His doctors recommended that he undergoes surgery to remove 95 per cent of his thyroid gland.

The surgery was done in July this year and was successful; however, he lost his voice for a couple of weeks. Also, because most of the thyroid was removed, Mr Mutwiri stopped being hyper to hypo.

To control his thyroid, Mr Mutwiri is taking medicines that he might have to take for the rest of his life.

Tests

“My doctors are currently performing several tests to see if I can manage without medication, but there is also a possibility that I will take medicines to substitute the 95 per cent of the thyroid gland that was removed during the surgery.

“The thyroid gland is located in the front of your neck and makes the hormones that control how your body uses energy,” says Dr Rosslyn Ngugi, a consultant endocrinologist. The thyroid is a small, butterfly-shaped gland in the neck she says.

Your thyroid plays a crucial role in your body by producing and managing thyroid hormones, which regulate metabolism –process through which your body converts the food you eat into energy. Your body uses this energy to maintain the proper operation of many systems.

The thyroid gland is important for numerous bodily processes aside from metabolism, such as controlling your heart rate and maintaining body temperature.

According to Dr Ngugi, the thyroid controls your metabolism with a few specific hormones – T4 (thyroxine, which contains four iodine atoms) and T3 (triiodothyronine, which contains three iodide atoms). These two hormones instruct the body's cells on how much energy to use.

The thyroid, when functioning properly, maintains the right level of hormones to keep your metabolism operating optimally. It produces replacement hormones as needed.

Due to certain conditions, including autoimmune disease, a damaged thyroid, iodine intake, and diabetes, the thyroid may either become over-active (hyperthyroidism) or slow down (hypothyroidism).

She explains that dysfunction occurs when the thyroid produces too much or too little thyroid hormone. Both can stop important organs from working well, which can cause a wide range of symptoms.

Here’s all you need to know about hyperthyroidism

Hyperthyroidism symptoms

• Unintentional weight loss
• Fatigue
• Anxiety or nervousness
• Rapid heartbeat
• Hand tremors
• Excessive sweating
• Iinsomnia)
• Sudden paralysis, among many other symptoms.

For hypothyroidism, a patient will experience symptoms such as weight gain, increased sensitivity to cold, muscle weakness, fatigue, slowed heart rate, depression and hair loss.

There is also a thyroid storm, a life-threatening health condition associated with untreated or undertreated hyperthyroidism. During a thyroid storm, an individual’s heart rate, blood pressure, and body temperature can soar to dangerously high levels. Without prompt, aggressive treatment, a thyroid storm is often fatal.

According to Dr Rosslyn Ngugi, after treating the thyroid storm, the patient gets better in one to three days. An endocrinologist (a doctor who treats the glands) should examine the patient once the crisis has passed to decide whether any more treatment is required.

“Thyroid storms need not be a persistent issue. Usually, treatment and medicine can stop them from recurring,” she said.

Who Is at risk?

Although both men and women are affected, it is up to 10 times more common in women.

There is no official data on hyperthyroidism in Kenya. However, one is more likely to develop thyroid disease if there is a family history of it.

One can also develop hyperthyroidism if he or she has pernicious anaemia (a vitamin B12 deficiency), type 1 diabetes, has an iodine-rich diet, takes iodine-containing medications, was recently pregnant, is older than 60 years, has had thyroid surgery, or has a thyroid issue like goitre.

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. Graves’ disease causes more than 85 per cent of all cases of hyperthyroidism, whereas Hashimoto thyroiditis is the most frequent cause of hypothyroidism.

How is hyperthyroidism diagnosed?

Dr Ngugi says it is important to catch hyperthyroidism early so that the patient and their doctor can devise a treatment plan before it causes damage that cannot be fixed.

In order to determine whether your thyroid is swollen, lumpy, or painful, your doctor may gently touch your neck.

Your eyes can also be examined for Graves’ eye disease symptoms, such as bulging, oedema and redness.

Additionally, the medical professional may listen to your heart using a stethoscope to check for an erratic or rapid heartbeat.

In order to check for tremors, you could be asked to extend your hands. A doctor may also feel your skin to see whether it’s warm and moist and check for changes in your fingernails.

A blood sample may be requested by your doctor to check for elevated thyroid hormone levels.

“Only when I have a high index of suspicion will I screen a patient because of the cost of the screening. But the group that should always be screened is pregnant women because the unborn baby is at risk as the thyroid hormone is responsible for brain maturation,” Dr Ngugi says.

Autoimmune thyroid dysfunctions remain a common cause of both hyperthyroidism and hypothyroidism in pregnant women.

Some 1 per cent of infants born to mothers with active Graves’ disease or a history of the condition develop neonatal Graves’ disease. Infants who experience severe effects may need hospitalisation and intensive care support. The most severe form of neonatal hyperthyroidism can be fatal.

The effects of Graves’ disease on the newborn are typically transient in less severe cases and under good control. However, even in the best-case scenario, the effects could be long lasting.

Autoimmune thyroid disease symptoms usually improve during pregnancy. It is believed that the altered immunological status during pregnancy is what causes improvement in thyroid autoimmune disorders.

For hypothyroidism in pregnant women, John Hopkins Medicine mentions that the foetus relies on the mother for thyroid hormones, which are important in normal brain development and growth.

Dr Ngugi says early research revealed that children born to pregnant women with hypothyroidism had lower IQs and poorer psychomotor (mental and motor) development. However, these women can give birth to healthy, unaffected kids if the condition is adequately managed.

“Early detection and treatment of maternal hypothyroidism during pregnancy may lessen any negative consequences it has on the developing foetus. Thyroid function tests should be done often throughout pregnancy for women who were taking thyroid hormones before falling pregnant because it is highly likely that the thyroid hormone dosage will need to be increased,” she says.

Treatment

According to Dr Ngugi, treatment for the hyperthyroidism depends on the severity and underlying cause of the patient’s symptoms, age, whether they are pregnant, and other individualised health factors.

Treatment options include radioactive iodine and surgery to remove the thyroid gland. However, you can only start treatment after your thyroid hormone has been brought under control.

“Radioactive iodine damages the cells that make thyroid hormones. It is recommended for those who are particularly vulnerable to antithyroid medication and surgery. It’s widely considered safe and effective, although you have to observe certain precautions,” Dr Ngugi says.

During surgery, the doctors can either remove part of the gland or all of it. Surgery can be an effective and permanent treatment.

“A potential downside of surgery is that there is a small risk of injury to structures near the thyroid gland, including the nerve to the voice box,” says Dr Ngugi. Hypocalcaemia (low calcium in the blood) and airway obstruction are possible problems, but they happen in less than 5 per cent of cases.

If the thyroid is removed with surgery or destroyed with radioactive iodine, one must take thyroid hormone replacement pills for the rest of their life.

Beta-blockers may be prescribed to treat symptoms such as fast heart rate, tremors, sweating, and anxiety until the hyperthyroidism is controlled.

Cost of treatment

Thyroid antibody tests cost about Sh10,000, while the thyroid function test is about Sh4,000 plus the drugs. On average, a patient will spend about Sh25,000 on the first visit.

For every visit, a patient has to do a thyroid function test, costing between Sh4,500 and Sh7,000.

Depending on the hospital, a patient will have to part with Sh3,000 to Sh6,000 as consultation fees to see a specialist doctor.

Surgery costs between Sh60,000 and Sh100,000 in public hospitals and between Sh250,000 and Sh500,000 in private hospitals.

Treatment is not available in regular hospitals; one has to go to a referral hospital. And the National Hospital Insurance Fund does not cover the treatment of this disorder.

“We are trying to lobby for the reduction of the costs of testing and drugs so that patients do not struggle for many years with a condition that can be managed,” Dr Ngugi says.