Hashimoto thyroiditis: the little-known disease affecting 1 in 10 people

Hashimoto’s thyroiditis may sound like an exclusive Japanese fashion brand, but in reality, it’s a serious illness.

Like endometriosis and polycystic ovary syndrome, Hashimoto’s thyroiditis often takes years to diagnose.

It’s an autoimmune disease whereby the body’s own immune system attacks the tissue of the thyroid gland, leading to chronic inflammation and, ultimately, the destruction of the gland. If Hashimoto’s is left untreated, the body eventually stops producing vital thyroid hormones. Hormones it can’t do without. Not only do they stimulate the metabolism and extract vitamins from food, they also control almost every important bodily function, from blood pressure to digestion. They also impact psychological health.

Nestled under the voice box, the butterfly-shaped, walnut-sized thyroid gland is positioned around the windpipe. It’s been nicknamed «the accelerator pedal of the body». And we all know that when the gas pedal conks out, the entire engine stalls. This is why the symptoms of Hashimoto’s present in a variety of ways.

How many people have the disease?

It’s estimated that 4-10 per cent of the population will eventually develop Hashimoto’s disease. Writing in his book «Der Hashimoto Guide», Dr Christian Lunow says, «Some studies suggest it’s up to 12 per cent». As Medical Director at the «Zentrum für Schilddrüsenerkrankungen» (the Centre for Thyroid Diseases) in Bornheim and Bonn, Lunow is one of the few experts on Hashimto’s in Germany.

Guidebooks

The Hashimoto Guide - Your path to therapy success

German, 2022, Marcel Dörsing, Christian Lunow

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Guidebooks

The Hashimoto Guide - Your path to therapy success

German, 2022, Marcel Dörsing, Christian Lunow

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On his information portal hashimoto-thyreoiditis.de (in German), he goes as far as to call the disease widespread. Seventy-five per cent of those affected don’t even know they’re suffering from it. In fact, Hashimoto’s thyroiditis is one of the most common autoimmune diseases and the most frequent cause of hypothyroidism (underactive thyroid) in western industrialised nations. Almost 1 in 10 people in Central Europe are affected by it. Reason enough to finally shed some light on the condition.

Fact 1: diagnoses of Hashimoto’s are increasing – more commonly in women

Women are diagnosed markedly more frequently with Hashimoto’s than men – about 7-10 times more, in fact. The condition can develop after they give birth: «In Germany, autoimmune thyroid diseases develop after childbirth in about seven per cent of cases,» writes the «Deutsche Gesellschaft für Endokrinologie» (German Society for Endocrinology) on its website (in German).

Although scientists haven’t reached a definitive conclusion on why this is, they consider hormones a likely connection. It’s also unclear whether the rising number of diagnoses is really a result of more people suffering from Hashimoto’s. It could also be a product of increased awareness of the condition, with more people searching for the corresponding antibodies. However, the rise in Hashimoto’s is in line with a phenomenon the medical world has been observing for some time – autoimmune diseases are generally being diagnosed more frequently.

Fact 2: there are multiple causes

As with most autoimmune diseases, there’s no single cause of Hashimoto’s thyroiditis. Several factors, including genetic predisposition, individual body characteristics and environmental influences play a role. However, researchers haven’t established any definitive cause-and-effect relationships yet. As Christian Lunow writes in his book, at least two factors collide in a fateful way – «bad genes» and «bad luck».

Researchers are discussing whether iodine intake, chemicals, infections with bacteria or viruses (for example hepatitis C), alcohol, smoking, stress or vitamin D deficiency could be risk factors for Hashimoto’s disease.

If a Hashimoto’s thyroiditis patient already has «bad genes» and «bad luck», they may unfortunately have concomitant and secondary diseases (website in German), including Crohn’s disease, diabetes or coeliac disease too.

Fact 3: Hashimoto’s symptoms aren’t always clear-cut

One reason why diagnosing Hashimoto’s thyroiditis often takes a long time is its symptoms. Non-specific and varied, sufferers also get used to them over time. Examples include tiredness, depression, listlessness, joint or neck pain, severe weight gain, feeling cold all the time and palpitations. To make matters worse, the illness often develops very slowly, which can lead to misdiagnoses such as burnout. In older people, symptoms of hypothyroidism are often initially mistaken for the typical signs of ageing.

Fact 4: how the disease is diagnosed – and why TSH levels aren’t everything

Although this diffuse collection of symptoms isn’t enough to confirm a diagnosis, it’s one of several pieces of the Hashimoto’s thyroiditis puzzle. If a patient is suspected to have the condition, their blood is tested for thyroid hormones (TSH, fT3, fT4) and antibodies (TPO-AK). Experts also recommend an ultrasound of the thyroid gland for a definitive diagnosis.

But there’s another thing patients should be aware of when it comes to TSH. Although it’s, as Lunow describes, a «an intuitive indicator», it’s also «susceptible to interference». In other words, it’s «not the incorruptible witness it’s often made out to be.»

As the German Society for Endocrinology puts it, TSH levels can fluctuate as a result of changing seasons, lack of sleep, hormonal changes (puberty, pregnancy or menopause) and infections. They also vary greatly from person to person, as this Danish study shows: «Each individual has a unique thyroid function […] Accordingly, a test result within the laboratory reference limits is not necessarily normal for a person.»

As a result, what’s considered today as a normal range of TSH is problematic. Depending on the individual, the frame of reference may be too narrow – and they may already have latent, untreated hypothyroidism. To sum up, TSH lab results should always be taken in conjunction with other indicators, as well as regular symptom checks.

Fact 5: how Hashimoto’s is treated

There’s no cure for Hashimoto’s thyroiditis. Sufferers need to take medication for the rest of their lives. If the autoimmune-related tissue damage increases, natural hormone production decreases. Consequently, sufferers need hormone replacement therapy. This involves taking the hormones they’re lacking as synthetic T4 in the form of levothyroxine tablets (L-thyroxine). Sometimes, these are given in the form of drops.

Experienced doctors don’t base everything on lab results. Instead, the condition of the patient is the deciding factor. If taking L-thyroxine improves the patient’s symptoms, it’s the right way to go. If not, the dosage has to be readjusted using trial and error, often over weeks or even months. At the same time, the patient needs to be closely monitored, including via blood tests.

Lunow says the aim of the treatment isn’t to achieve an optimal TSH level. This is because there are no objective criteria to suggest what an individual’s optimal TSH level would be. As a result, «the patient’s subjective sense of how they feel is the measure of all things».

With age and changing hormone levels, e.g. due to pregnancy, hormone doses need to be adjusted anyway. The purpose of treatment is always to «at least come close to the individual’s required TSH level.» With this in mind, it’s essential to get support from an experienced medical professional in treating Hashimoto’s disease.

Fact 6: symptoms sometimes continue despite medication

A British study concluded that around 5-10 per cent of Hashimoto’s sufferers continue to experience symptoms (even when their TSH levels are adjusted). In fact, Lunow estimates the percentage to be even higher. Under certain circumstances, instead of only taking L-thyroxine, T3T4 combination therapy may be necessary to better balance the delicate levels of TSH, T4 and T3.

That said, other factors can also influence the disease and, subsequently, treatment. According to Lunow’s Hashimoto Guide, you should imagine the disease as a «house fire». «Just as the materials a house is built with can influence the speed and heat of a spreading fire, the presence – or absence – of other substances can also affect its progression.»

The body has certain thyroid-related «fire retardants» at its disposal, including nutrients such as zinc, selenium and vitamin D. Dr Lunow, however, says these are often lacking in Hashimoto’s sufferers, «The most common deficiencies we see in our patients include vitamin D, selenium deficiency, iron and vitamin B.» As well as having their thyroid hormones checked, people with Hashimoto’s should ensure they’re regularly tested for these nutrients.

Choosing food supplements on your own, however, isn’t a good idea. Taking selenium over long periods of time, for example, increases the risk of developing type 2 diabetes. This considered, using mineral- and vitamin supplements needs to be done in conjunction with medical advice and observation.

There are currently no specific diets known to be effective for Hashimoto’s disease. However, eating a healthy diet, possibly cutting down on carbohydrates in favour of fat and protein, can prove beneficial. Meanwhile, some sufferers experience an improvement in their symptoms when they give up gluten.