TESTIMONIALS – In 2017, after the Merck laboratory released a new formula of the drug, thousands of people on treatment reported adverse effects. Five years later, some still suffer from it.
Louise* is 29 years old, she is a teacher in education. She has always taken life to the fullest. In November 2020, he was diagnosed with Hashimoto’s disease, a rare autoimmune disease, which causes hypothyroidism. In January 2021, she was treated with the new formula Levothyrox, a molecule taken daily by 2.3 million people in France. From that moment, his life changes. She begins to experience intense pain in the joints and muscles, overwhelming fatigue, the feeling of being in a permanent brain fog. Her hair is also falling out very quickly. She must return to live with her parents.
In 2017, the German pharmaceutical company Merck released a new formula for its drug. This was followed by a wave of reports of unprecedented side effects: headaches, stomach aches, joint problems, hair loss, extreme fatigue and many others. Last Wednesday, the laboratory announced its indictment for “aggravated deceptionin the criminal investigation into the change in formula of the drug. The debates will not focus on the formula itself, but on the communication plan that accompanied its arrival, resulting in a possible lack of support for patients.
While reports of side effects have dropped dramatically since 2017, some people say they still suffer from them today.
Read alsoLevothyrox: three years after the crisis, the mystery remains
Five years later, distress messages continue to be posted on Facebook:I feel like taking a poison», «I can’t get up in the morning anymore», «I lost my job», «rtell me my life before»… Isabelle, in her forties, is also one of those people who still suffer today. “I had my thyroid removed after a tumor 10 years ago. Since I have hypocalcemia in the blood“, she explains. “If all was well so far, I started experiencing side effects a good four years ago. I am constantly tired. I ache all over. I can’t get up in the morning, I’m losing my hair, I have pain in my joints. And I gained a lot of weight»
You don’t realize the importance of the thyroid until you have a problem.
Louise, 29 ans
She does not know where these effects come from, and was not aware of the change in formula: “My doctor tells me that I have correct levels, I asked to change the composition to see if that can change anything. He tells me all the time that I have to rest“. And his entourage suffers:My granddaughter wanted me to take her to play soccer, but I couldn’t. She then started crying“. These side effects also have an impact on his work. Dust collector in the city of Paris, she was forced to work part-time: “I am 46 years old and my body no longer follows. I constantly regret my operation».
Louise, she has no children and no longer maintains any social life because of these side effects: “What is also hard, when you live with an illness that cannot be seen physically, is that family or friends one day begin to no longer believe you.». «Some of my relatives ask me why, if things are not going well, I don’t stop my treatment… Because otherwise the hypothyroidism gets worse and can lead to a coma in the most severe cases. You don’t realize the importance of the thyroid until you have a problem“, she regrets. Indeed, people who suffer from side effects have no choice but to seek treatment. This small gland in the neck is essential for life. It regulates practically all metabolic activities, the regulation of lipids, sugar, but also the activity of many organs such as the brain, heart and muscles.
SEE ALSO – Levothyrox: “relief” on one side and “misunderstanding” on the other after Merck’s conviction (June 25, 2020)
Five years later, prolonged side effects remain an enigma
In 2017, many avenues were explored to try to understand what was not working with the new formula: problem of impurities, manufacturing, quality, nocebo effect (the opposite of the placebo effect)… “You have to see the evolution of the declaration of side effects, at the beginning between March-April 2017 and August 2017, before the affair made it into the media. At the beginning we were at 1%. Then it exploded“, justifies the endocrinologist Pierre Nyx. He keeps on : “People have complained of poor hormonal dosage. We have had a few cases who, with the same doses, found themselves in therapeutic under-dosage, or conversely with signs of overdose. They said they had fatigue, dizziness, insomnia, headaches, hair loss, joint pain, muscle pain, digestive problems, weight gain, etc.»
If today a large majority of these patients are better, how many suffer from side effects? Hard to know, but they would bean infinitesimal quantity“says the doctor. “In my experience, the percentage of people who have complained about the new Levothyrox formula is about 5%. In this 5% there is a good part which is related to problems of adaptation of treatments, it is necessary in these cases to make a dosage of TSH to readapt the treatment upwards or downwards. And from then on, the percentage of people who actually complained is pretty minimal. But it exists“. And for this small category of people who complain of prolonged side effects, “it’s a question mark for which no one has an answer“, admits the specialist.
A fight for life
The endocrinologist would like to point out that Levothyrox also has beneficial effects for “many people», which support it better today with the new formula: «The formula change was initiated by the ANS, it was not the laboratory that decided to change the formula to improve the stability of the drug. By changing, lactose has been changed, which allows the amount of active ingredient in the drug to be much more reliable. Especially since there were people allergic to lactose. We often tend to forget that.»
But for the unfortunate like Isabelle or Louise, the fight to live continues: they are always in search of the “good treatment“. Louise tried many alternatives, without success. “It’s a real obstacle course, you have to face the lack of listening and empathy, the denial of the side effects of certain doctors as well as the ignorance of the subject by certain general practitioners. At 29, I have to shower with a stool because I can’t get up. And that’s not normal“. Today, she wants only one thing, to find her life before.
*Name has been changed.