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Living with chronic thyroid disease

I was first diagnosed with thyroid disease as a young woman of 21. I had the classic symptoms - sudden weight gain, excessive drowsiness, feelings of anxiety and depression, and feeling cold while living in a place where the average temperature was 35 degrees celsius! I ignored all of these symptoms and told myself it was nothing. It was only when I realized that I hadn’t got my period in three months that I decided to see a gynaecologist. She ran a few tests and called me back to say that my TSH levels were at 12 mIU/L while the normal range was between 0.4 - 4.0 mIU/L - alarmingly high, and immediately put me on a high dose of levothyroxine (a synthetic form of a naturally occurring hormone known as thyroxine produced by the thyroid gland). I have been taking a daily pill ever since.

I am now almost 40 and only recently obtained an actual diagnosis of Hashimoto’s thyroiditis (an autoimmune disorder where the immune system of the body attacks the thyroid gland preventing it from producing thyroxine). Having gone through two pregnancies and breastfeeding, I now realize that managing chronic thyroid disease involves regular calibration and fine-tuning though all of these life stages and the ones to come, especially perimenopause and menopause.

According to the American Thyroid Association, women are 5-8 times more likely to suffer from thyroid disease compared to men. The hormone produced by the gland performs a wide array of functions related to metabolism. These include temperature regulation, protein production, and maintaining the rate at which the body uses fats and carbohydrates. Because of the diversity of its effects on the body, making a diagnosis is often challenging as symptoms can be vague and differ between people. Imbalances in the levels of thyroid hormones produced by this gland can affect physical as well as emotional and mental well-being.

The thyroid gland and the brain communicate expertly to maintain a delicate balance of thyroid hormones.

The body relies on several interconnected organs with different functionalities to ensure the proper functioning of the thyroid gland. The main actors are the hypothalamus (which is a portion of the brain) and the pituitary gland found at the base of the brain. The hypothalamus communicates with the pituitary gland and triggers it to produce the thyroid-stimulating hormone (TSH). The TSH hormone stimulates the thyroid gland to secrete T3 and T4 - the thyroid hormones - that regulate a myriad of different bodily functions. TSH hormone levels are what doctors use to understand and diagnose thyroid conditions. If T3 and T4 levels in the body drop, the pituitary gland releases more TSH - a way of communicating to the thyroid gland to produce more T3 and T4. On the other hand, if the level of T3 and T4 hormones rise, the pituitary gland will secrete less TSH - telling the thyroid gland to stop or slow production of thyroid hormones. This finely-tuned process needs to be at the right balance to maintain optimal levels of thyroid hormones in the body.

Put simply, the more the TSH level in your blood, the less thyroid hormone is available for your body’s needs. Having high levels of TSH usually indicates hypothyroidism - where your body does not make enough thyroid hormone. Low levels of TSH indicate hyperthyroidism - where there is an excess of thyroid hormones in your blood.

Thyroid disease is notoriously difficult to diagnose.

The classic tests used to diagnose thyroid disease are blood tests that measure TSH and free T3 and T4 hormones in the body. However, I have personally heard of several women (and men) who have gotten their TSH levels tested and reported 'normal levels' but still complain of symptoms. In fact, the ‘normal’ range of TSH values has been a widely debated topic in the medical community. A study in 2005 recommended that the upper limit of the normal range of TSH be reduced, which would imply that 20% of the population of the United States would be considered to be suffering from underactive thyroid function. Although this suggestion was not universally adopted, more research points to lowering the upper level of TSH readings. Other research has shown that several factors influence the level of TSH in the blood, including age, ethnicity, gender, iodine intake, and for women, the use of oral contraceptives (notably estrogen which directly influences TSH levels). What this shows, is that the TSH value alone does not confirm a thyroid disorder. Ask your doctor to take account of other factors such as family history, ethnicity, and other hormonal medication you may be taking.

Symptoms of hypothyroid are often mistaken for general lethargy and sometimes depression, leading to misdiagnosis and patients feeling no real difference in their quality of life. On the other hand, symptoms of hyperthyroidism such as palpitations and shortness of breath can often be mistaken for cardiac symptoms, again leading to misdiagnosis.

Specialists now recommend that in order to correctly diagnose thyroid disease, doctors should adopt a more holistic approach rather than rely solely on TSH levels. It is important to understand whether the patient has a family history of thyroid disease, their cholesterol and lipid levels, blood pressure, bone markers, and heart function in addition to TSH levels.

Once thyroid disease has been diagnosed, antibody tests can be done to see if the cause of the disease is an autoimmune disorder such as Hashimoto's disease for hypothyroid and Grave’s disease in the case of hyperthyroid.

Managing Pregnancy and thyroid disease

During my pregnancy, my thyroid levels were regularly checked every month, as thyroid function is pivotal to the unborn baby’s development. However, as soon as I had my child, I no longer had the time or motivation to continue getting my levels checked. Three months postpartum, I was exhausted and found it difficult to sleep, despite being severely sleep-deprived taking care of a newborn. I wasn't able to fall asleep at night or take afternoon naps while the little one napped. I also had palpitations and felt anxious generally. It was at my regular 3-month postpartum check up that the doctor asked for some bloodwork, and realized that my thyroid levels were too high, I was officially in a hyperthyroid (overactive) state from hypothyroid (underactive) state. I was asked to reduce the dosage of my daily medication and I felt back to normal in a matter of 2 weeks. The state of pregnancy was able to somehow ‘correct’ my autoimmune disease to a limited extent. I was still on my daily pill, but the dosage was slightly lower than before. What this made clear was the need to check thyroid levels not only during pregnancy but also after birth for the mother’s continued well being. The same goes for women who are trying to get pregnant. Often, undiagnosed thyroid disease can result in miscarriages and difficulty getting pregnant. It is important to run tests before, during, and after pregnancy.

Menopause and thyroid disease

Recently, more attention has been paid to the links between menopause and thyroid disease. Specifically, excess estrogen levels (estrogen supplements are often prescribed to counteract the symptoms of menopause), tend to slow down the functioning of the thyroid gland. Excess estrogen could have a low thyroid effect and symptoms related to hypothyroidism could appear, such as irregular menstruation, insomnia, and mood swings. Some studies also suggest that thyroid disorders may influence early menopause (for example, before the age of 40 or in the early 40s).

On the other hand, hyperthyroidism could mimic symptoms of menopause and could lead to a mistaken diagnosis. Symptoms related to an overactive thyroid or hyperthyroidism can be similar to early menopause symptoms - for example, lack of menstruation, hot flashes, palpitations, and mood swings. Making sure that your body has the right balance of thyroid hormones and treating imbalances whether overactive or underactive, can sometimes ease symptoms of early menopause.

Aging is also associated with lower thyroid hormone production. Since the average age of menopause is around 55, common tendencies related to ageing and hormonal production need to be considered in sync. Taking into account thyroid function as well as declining hormonal levels of estrogen and progesterone could help while managing menopause.

Thyroid and nutritional deficiencies.

Those with thyroid dysfunction are often found to be aware of nutritional deficiencies that could appear. The common minerals that are found to be deficient in those suffering from thyroid disease are zinc, selenium and iodine, iron, and Vitamin B12.

Thyroid disease is treatable.

Autoimmune thyroid diseases such as Graves disease and Hashimoto’s thyroiditis are unfortunately not curable, but what's important is that they are both easily treatable with medication and regular check-ups. Other forms of the disease have various treatments, some surgical such as removing portions of the thyroid gland itself when oversctive, and others diet based, mostly in the case of underactive thyroid function.

Living as a woman with chronic thyroid disorder involves some adjustments, but managing it effectively to ensure your quality of life remains comfortable, requires regular checkups to ensure your dosage is correct, especially during major bodily changes such as pregnancy, breastfeeding, perimenopause, and menopause.

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Note: Please consult a medical professional regarding the specifics of your health and symptoms.

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About the author

Rosemary George is a researcher and advocate for women's health. A mother of two boys, she is especially interested in sensitising both men and women to gender equality especially in terms of health. She lives in Geneva, Switzerland.

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