Extreme fatigue and more or less debilitating pain have been part of their daily lives since the marketing of the new Levothyrox formula by Merck laboratories in March 2017. At the time, this medicine against thyroid disorders is prescribed to almost all 3 million thyroid patients in France, 85% of whom are women.

At first, the formula change goes unnoticed. Despite sending a note to doctors and pharmacists stipulating a change of excipients in the composition of the drug -for a question of stability- the information is not relayed to patients. Some of them, however, explain that they felt discomfort and discomfort as early as mid-April, but did not immediately make the link with their treatment.

Patients in survival mode

It's finally at the heart of the summer that the affair burns. The ANSM then collapses under thousands of reports of side effects (more than 17,000 according to a last count of the ANSM published in January 2018). In the aftermath, the patients concerned join forces in associations, demanding the return of the old formula.

Problem: Merck laboratories do not intend to backtrack and even if the old formula is still produced in the territory (including Isère, on the site of Bougoin-Jallieu), it is intended for Italy. In France, stocks are destined for total depletion, as is also expected in the medium term across Europe.

Two lawsuits against Merck: one in the criminal court in Marseille, for "aggravated deception, involuntary injury and endangering the lives of others", the other civil in Lyon, via a collective action for "lack of information" and "injury of anxiety."

Meanwhile, patients who do not support the new formula explain "survive". While some have finally regained their comfort thanks to the alternatives to Levothyrox since put on the market, many still complain about not being able to live normally. In solidarity, a handful of them go so far as to supply themselves with Euthyrox (the name given to the old Levothyrox formula in other European countries) in Spain, Italy, Switzerland or Germany, the prescriptions of a whole group under the arm. From this treatment depends their life.

For Marie Claire, five women have agreed to tell the story after Levothyrox's new formula.

Anne: "As soon as people go abroad, I ask them to bring me Levothyrox old formula"

"I'm 48. One year ago: hell started, my medicine changed without warning, luckily I did not take this poison for a long time. following the old formula thanks to a solidary and human chain that went for me to seek grail abroad.It is in difficulty that we recognize his friends.

New drugs have been made available to us, but not all compatible with my pathologies. I expect a lot of TCaps but I have not taken it yet. For two reasons: it is not reimbursed by the Social Security and costs almost 13 euros per month (I feel like I was fooled), change of medication can put my life in danger. Thyroxine is not paracetamol. The therapeutic range of this drug is narrow and the dosage adjustment is a balancing act. So if I really have to change it, I do not want to do it without a minimum of security because I risk being physically, intellectually diminished or even dying. In short, I risk losing everything.

New drugs have been made available to us, but not all compatible with my pathologies

So I survive. As soon as people go abroad, I ask them to bring me back the old Levothyrox formula. I lost confidence in the system but I want to thank the associations, the people who testified and who mobilized to denounce, help, support.

I hope that the authorities will wake up and allow French patients to buy in France this old formula that continues to be manufactured on our territory for foreign countries. "

Marie: "I immediately complained"

"I am a former nurse at home, I have been taking Levothyrox for 43 years (without a sick day in a 40-year career) In August 2017, after only 17 days under the new formula: horror! Terrible digestive crisis with an excessive liver! A blood test reveals a gamma GT level higher than that of an alcoholic.There were added other problems: I could not walk, I could not eat - I lost 6kg in one week- I could not see any more clearly, I was very tired.

I was very lucky because I immediately found a remnant of old formula and two days later I started to live again! Because of my profession, I immediately obtained Levo in Spain and Switzerland. I even brought some from Russia in September! So I have my reservations. Since I physically recovered but I remain very active on social networks. And of course I immediately complained.

I know that patients take the new formula without any problem, that's good. But I wonder ... until when? Because some are affected after several months. "

Annick: "I am stolen every day when, in retirement, I could have enjoyed life"

"In 1996, discovery of my illness: Hashimoto After various exams, I am told: do not worry, you will take this stamp until the end of your days and everything will be fine, it's just the same as The fact is that until the end of May 2017, this has proved to be correct: an analysis per year of control ... always normal.

Patatras, arrived the new Levothyrox formula, taken unsuspecting since only the packaging seemed to have been modified. From the beginning, the discomfort started without the TSH rate moving. Consultation of an endocrinologist who lowers the dosage and promises me the drops after 6 weeks if no improvement. Everything became worse: muscle pain, joint pain, dizziness and so much fatigue. I would have tried the drops of L-Thyroxine Serb but the ANSM reserves them for children and the elderly. I reacted by importing Euthyrox from Switzerland. Immediate relief, back to normal apart from a few small muscle pains.

I reacted by importing Euthyrox from Switzerland. Immediate relief.

Then it was the race to go to Spain, then to Germany. The Spanish tablets having given me at the end of a platelet a significant increase in tension, I could have German Euthyrox at the pharmacy. But it must be commanded with force as if we were making a mistake. The TSH checks, I do them at my expense. I manage to adjust the dosage and I expect to be able to permanently get rid of Merck. The problem ahead is finding the right mix with a new and valuable product. It is very hard to think after almost a year that our pain may be irreversible.

I am 73 years old. I am robbed every day of the time when, in retirement, I could have enjoyed life. "

Nicole: "I feel like I have aged 10 years in one year"

"I have the feeling of a mess: we stole one year of our life and it's not over ... A misunderstanding too: why have changed the formula of this drug effective and safe for another who has been abandoned 500 000 to 1 million people who do not support it? Why not surrender the old?

Anger: because we tried to silence ourselves, we were humiliated by calling us "victims of social networks", Facebook would have influenced our feelings, we were even accused of wanting to 'make the buzz' when we were , by a cold polar, in front of the factory of Bourgoin-Jallieu which always manufactures the old Levothyrox towards Italy ... but not for us!

For my part I am better physically and morally since I take the Italian Euthyrox, but I have the impression of having aged 10 years in one year. I remain tired, troubles of memory and fear. And the fear of tomorrow: will I continue to find my medicine?

I no longer trust, like all patients, in a medicine that I must yet take every day. It's hard to live. Fortunately we have a collective in our department, which I animate my best, it helps me a lot.

The only positive points of this scandal: solidarity and new knowledge of our disease because we have discovered the importance of the thyroid and its treatment. The diseases of the thyroid affect mostly women and even more when they get older.

Corinne: "I had the feeling that I was going to die"

"I'm 49 years old and have been taking Levothyrox since I was 25 years old until last summer, I felt the first side effects after only a few days of treatment, but I say that with hindsight .

First, I lost my hair, in whole tufts. I then felt a massive fatigue that did not bend after a lot of rest. Then I found myself with a kind of lumbago, my hips blocked, it lasted almost 3 weeks. My vacation was a round trip between my bed and my couch and the feeling that I had something serious and that I was just going to die. It was very scary.

I never imagined a link with this medicine that I had been taking for so many years, I did not once question what I swallowed. My husband, a medical specialist who himself went to get my Levothyrox from the pharmacy, did not make the connection between the change of box (sold by the pharmacist as a packaging change) and the symptoms. It was going to search the internet and finding people who lived the same thing that I finally understood. I then contacted Me Leguevaques (editor's note: in charge of collective civil action). I did not imagine that I would, by this action, rally thousands of patients who lived the same thing as me.

For my doctor, I was somatizing, I had "not go on social networks"

For my doctor at the time, however, my symptoms were not related to Levothyrox. I was somatizing, I had "not go on social networks". So I urgently sought and found an endocrinologist who was great with me, listened to me and taken seriously. I think this woman really saved my life even though almost a year later I still do not feel well out of the woods.

I immediately abandoned Levothyrox for drops of L-Thyroxine from the Serb laboratory. My mother had to go to Spain. Fortunately we are only 2 hours from the border!

Today I have no confidence in Merck and the products they can put on the market. What will happen when the old formula disappears from neighboring countries where hundreds of people will stock up? "

* Number reported by the Ministry of Health on March 9, 2018