Louisa* is 29 years old, she is an education teacher. He always lived life to the fullest. In November 2020, he was diagnosed with Hashimoto’s disease, a rare autoimmune disease that causes hypothyroidism. In January 2021, he was treated with a new formula, Levothyrox, a molecule that 2.3 million people in France take every day. From that moment on, his life changes. He begins to feel severe pain in the joints and muscles, overwhelming fatigue, a feeling of being in a constant brain fog. Her hair also falls out very quickly. He has to go back to live with his parents.
In 2017, the German pharmaceutical company Merck released a new formulation of 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 lab announced its indictment “aggravated fraudin the criminal investigation of the alteration of the drug formula. Debates will focus not on the formula itself, but on the communication plan that accompanied its arrival, leading to a possible lack of patient support.
Although reports of side effects have dropped dramatically since 2017, some people say they still plague them today.
Five years later, painful messages are still posted on Facebook.I feel like taking poison“, “I can’t wake up in the morning anymore“, “I lost my job“, “give me back my life“… After forty, Isabel is also one of those people who are still suffering today. “I had my thyroid removed 10 years ago after a tumor. Because I have hypocalcemia in the blood“, he explains. “If everything was fine until now, I started to feel the side effects four years ago. I am tired all the time. I’m totally sorry. I can’t get up in the morning, my hair is falling out, 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 years old
He does not know where these influences come from and was not aware of the formula change.My doctor tells me I have the right levels, I asked to change the compound to see if that would make a difference. He keeps telling me to relax“. And his surroundings are suffering.My grandson wanted me to take him to play football, but I couldn’t. Then she started crying“. These side effects also affect its performance. A dust collector in the city of Paris, he was forced to work part-time.I am 46 years old and my body is no longer keeping up. I constantly regret my surgery“.
Louise, she has no children and no longer has a social life because of these side effects;It’s also hard when you’re living with an illness that’s not physically visible, is that one day family or friends start to stop believing in you.“. “Some of my relatives ask me why, if everything is not well, I don’t stop my treatment… Because otherwise the hypothyroidism gets worse and in the worst cases it can lead to coma. You don’t realize the importance of the thyroid until you have a problem“, he regrets. Indeed, people suffering from side effects have no choice but to seek treatment. This small gland in the neck is necessary for life. It regulates almost all metabolic activity, regulation of lipids, sugar, as well as the activity of many organs, including the brain, heart and muscles.
Five years later, long-term side effects remain an enigma
In 2017, many avenues were explored to try to understand what was not working with the new formula: impurity problem, production, quality, nocebo effect (opposite of placebo effect)…”You should see the evolution of the side effect statement, first between March-April 2017 and August 2017, before the case hit the media. In the beginning, we were on 1 percent. Then it exploded“, endocrinologist Pierre Nix justifies. He continues.People have complained of insufficient hormonal doses. We have had several cases with the same doses in subtherapeutic doses or vice versa with signs of overdose. They said they had fatigue, dizziness, insomnia, headaches, hair loss, joint pain, muscle pain, digestive problems, weight gain, and more.»
If most of those patients are better today, how many are suffering side effects? It’s hard to know, but they willinfinitesimal magnitude– 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 portion related to treatment adaptation problems, in these cases it is necessary to make a dose of TSH to adjust the treatment up or down. And since then, the percentage of actually complaining is pretty minimal. But there it is“. And for this small category of people who complain of long-term side effects, “it’s a question mark that no one has an answer to“, the specialist admits.
Fight for life
The endocrinologist would like to note that “Levothyrox” also has a beneficial effect “many people“, which today are better supported by the new resolution.The formulation change was initiated by the ANS, not the laboratory, which decided to change the formulation to improve the stability of the drug. By changing, the lactose has changed, which allows the amount of the active ingredient of 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 struggle to live continues; they are always looking for “good treatment“. Louise tried many alternatives without success. “It’s a real hurdle, you have to deal with the lack of listening and empathy, the denial of side effects by some doctors, and the ignorance of the subject by some general practitioners. At 29, I have to shower with a stool because I can’t get up. And that’s not normal“. Today, he wants only one thing: to find his old life.
*The name has been changed.
Source: Le Figaro
