‘It’s not me, it’s my thyroid’; the suffering of women with hormonal changes

“I want to sleep with my partner, but my libido says no. I want to wake up early, do a thousand things, but I can’t do anything like I used to. I want to read a book, but a mental fog prevents me. I want to stay calm, but something gets in my way. makes me scream at what’s in front of me, kick, infuriate. I want to lose weight, I try, but I can’t. I want to be happy, I have reasons, but something that sucks energy and joy gets in the way. I want to get out of this roller coaster of feelings and emotions. “

Laura, Eirene and Loreta live in different countries: Chile, Spain and Croatia. But the previous paragraph summarizes much of what they have experienced in recent years. They also went a long way to find what they were looking for.

“When I was 17, I started having crazy symptoms. Vertigo, a ringing in the ears, I felt really bad. People thought it was epilepsy. After several tests, the doctors said it was the thyroid”, Loreta tells the BBC News Mundo, the BBC’s Spanish service.

Eirene’s case started with stomach problems in 2009. She had endoscopies, gastroscopies and colonoscopies… A doctor claimed she was making up an illness – until, months later, she was diagnosed.

Laura heard a doctor say that she was fat because “Venezuelans are fat because they eat a lot of arepas”. She even consulted eight doctors to find a treatment that wouldn’t cause “hormonal shock.”

All three were diagnosed with autoimmune hypothyroidism.

A butterfly that controls your energy

The thyroid is a butterfly-shaped gland located in the neck. Its job is to produce essential hormones to help the body use energy, stay warm, and keep the brain, heart, muscles, and other organs functioning properly.

“It’s like the body’s battery. Whether it works too much or too little, there are symptoms,” said endocrinologist Paloma Gil.

If it malfunctions, it’s called hypothyroidism. According to Gil, those who have this problem usually feel “like a toy that runs out of battery, that tires more easily”.

If the thyroid “works too much,” hyperthyroidism occurs. The person may feel “like someone has given them an extra dose of caffeine, accelerated,” explains Gil.

Both hypothyroidism and hyperthyroidism have many symptoms: hair loss, loss of energy, sudden mood swings, weight loss or gain, changes in menstruation, skin changes, forgetfulness, and mental confusion.

“The problem is that the symptoms are not specific,” says doctor Francisco Javier Santamaría, a member of the Spanish Society of Endocrinology. For example, in the case of hypothyroidism “it can be confused with having a bad phase or depression”.

Hypothyroidism is more frequent and, according to Santamaría, is underdiagnosed. “It is estimated that it affects about 10% of the population. Half of these people are undiagnosed,” she says. It is mainly a female disease: “80% of people with thyroid are women”, says the doctor.

‘We are not an organ separate from a body’

A very common treatment is levothyroxine, a pill that regulates thyroid imbalance. “Once the hormones are fine, you can have a normal life,” explains Gil.

But this is not the case for Loreta, Eirene and Laura, who, despite being under treatment, continue to show symptoms.

“Sometimes I get depressed, everything makes me very tired. It is difficult to reconcile this illness with the current rhythm of life”, complains Loreta.

Laura, a very active person, sometimes works lying in bed.

“I try to do everything I can, without pressure. But it’s very difficult to be 100%”, adds Eirene.

Loreta’s condition has recently worsened: she has nodules and may have part of her thyroid removed. “My doctor said the problem caused symptoms, like not being able to concentrate, not being able to carry on a conversation. I always say, ‘I’m not like that: it’s my thyroid.’

“Usually most patients, 80% or 90%, normalize these symptoms. But there are cases in which people are not 100% normal”, says Santamaría.

“There are more complex cases. Most hypothyroidisms are of the autoimmune type and, even taking medication, this autoimmunity continues to affect other organs”, explains Santamaría.

This means that our system ends up attacking itself. “You produce antibodies and attack other things, you go against the hair follicle, it gives vitiligo, intestinal problems…”

In addition, points out Santamaría, the thyroid hormone affects everything, including the nervous system: “There is a lot of emotional lability, irritation. Even if you have corrected the thyroid, these symptoms can persist”, he says.

In short, many patients find no answers.

A self-taught path

The three patients interviewed by BBC News Mundo say that the problem is that there are not so many up-to-date doctors and there is not an integrative thyroid treatment in their countries. “Everything is related, we are not a separate organ from the body,” says Eirene.

Loreta, Eirene and Laura felt they weren’t getting all the answers they needed. The three embarked on a self-taught path: they searched for books, videos and courses, all filled with contradictory information and trial-and-error solutions.

The three have the presence of a private doctor who spends more time with them and performs their routine exams, something that can be seen as a privilege. And both Laura and Eirene went to integrative medicine specialists to review all of their symptoms and treat them together.

Isabel García is a specialist in endocrinology and nutrition with an integrative vision. She guarantees that many people arrive at her office tired of looking for treatments, in addition to feeling “harmed by doctors who say that the symptoms are nothing more than malaise”.

“Diseases have a cause, a root. Often they are not resolved with just one pill. It is necessary to examine the person”, says García, remembering that one of the problems is that in medical schools and in medical consultations “they don’t talk about emotional component or the importance of food and habits”.

a small guide

The three experts consulted by the report warn that, in no case, drugs or supplements should be taken without medical supervision.

García promotes the elimination of toxins in his treatment, which can range from some dental fillings that contain mercury to replacing plastic containers with glass or liquid soaps with pills. These are changes that are not always within everyone’s reach because of the pace of life, economic conditions and social context.

But it also proposes much more affordable dietary changes, such as eliminating sugar and ultra-processed foods and anything else you consider inflammatory, like gluten or cow’s milk. It also guides sunbathing, essential for vitamin D, and exercise. “But exercise should be done in moderation, because it’s something that puts a lot of stress on the body.”

Due to the type of women who come to his appointment –”middle-aged, with a strong mental and emotional charge”-, García recommends small daily gestures: sleeping without a cell phone by your side, reducing internet consumption, meditation, therapy, in addition to better management of emotions.

“By changing part of the diet and reducing stress, the changes are spectacular,” notes García.

Get to know yourself better and have compassion

Eirene, Loreta and Laura agree on a process they describe as essential: self-knowledge.

“It’s critical to know when something is bothering me and when it’s hormones,” says Laura. “Get to know yourself, write every time you feel a mood change, learn from the illness.”

It is also essential to seek support networks and explain the problem to those closest to you. “There’s a lot of misunderstanding. You’re seen as lazy, the weirdo who eats weird, who doesn’t drink alcohol”, explains Eirene, who radically modified her diet and lifestyle, eliminating all possible toxins and including an anti-inflammatory in her diet.

Laura is grateful that her hypothyroidism came along to give her the opportunity to look inside herself. And she advises, “This is a silent disease, but your body is screaming at you. Listen to it, embrace it, be understanding of yourself and, the key, have self-compassion.”