Sylvie Robache is one of the first patients to have denounced the harmful side effects of the second formula of Levothyrox. While a first battle has just been won, the old formula will be available until the end of 2021, in France, we were able to discuss with this whistleblower, symbol of a fight despite herself. unprecedented sanitary.
If we ask you the question, what is the thyroid and what are its ailments, what would you answer? You think ? This is normal, the various thyroid diseases are overlooked. However, 3 million French people are affected by a thyroid disease. In June 2017, these forgotten sufferers found themselves in the spotlight, despite themselves, in a scandal called Levothyrox, the name of a drug prescribed for thyroid problems.
Sylvie Robache, herself sick with the thyroid, and author of the book "Le scandale du Lévothyrox – A patient denounces the new treatment and its effects", published by Hugo Doc, then decides to launch an online petition to denounce the recourse of Merck laboratory has a new formulation of the drug which, according to thyroid patients, causes many side effects. She thus became the heroine of a vast protest movement and more than 300,000 signatures were collected. And her fight pays off: in August 2020, a new twist, the old formula is available again until the end of 2021. From the discovery of her illness to her fight for the truth to come out, she traces her journey to us today.
When did you get sick?
Sylvie Robache : I found out about my thyroid cancer in October 2015 and had surgery in March 2016. I had a thyroidectomy, which means that I no longer have a thyroid (an ablation). I didn't have a lot of symptoms. I had been very tired for a long time, without really knowing why. My doctor therefore gave me a blood test. He just noticed that my calcium levels were low. Since the rate was not moving, my doctor arranged an appointment with an endocrinologist. The latter, thanks to further analyzes, detected my cancer.
Can anyone be affected? Is there an explanation for this cancer?
Sylvie Robache : There is no age. I knew the mother of a sick teenage girl. It is true that there were many cancers after the explosion of reactor n ° 4 at the Chernobyl power station in Ukraine, in 1986. Then, it is complicated to explain certain cancers. We don't always know why.
Since your operation, what is your daily life?
Sylvie Robache : You have to adapt in fact. I imagined that some time after the operation, I would get back in shape and I found that not, unfortunately. I'm not like I used to be. I am always very tired. I call my different times, the days with and the days without. From the morning, I feel if my day is going to go well, roughly, or if it is a day that will be summed up in few things. Regarding my medication, I take one tablet, thyroid hormones, in the morning, every day, on an empty stomach and for life! There are mornings I would like to get up and have my coffee, but no, I have to wait half an hour before I have breakfast.
What happens if you forget your medicine?
Sylvie Robache : If I forget it once, it's not catastrophic, but if you stop your treatment, after two weeks / three weeks, you fall into a coma and you end up dying. Without the thyroid, we cannot live without treatment. To put it simply, the thyroid * is a gland that makes hormones that are essential for the body, like the heart. It is very very useful.
We hear a breath in your voice, is it due to a complication?
Sylvie Robache : It is a sequel to the operation. The tumor was very misplaced. The surgeon did everything he could, but unfortunately there was the recurrent nerve (the nerve that passes through the chest and controls the movement of the larynx and vocal cords) which was severed. So I have a vocal cord that no longer works, despite speech therapy (ttreatment aimed at correcting speech defects). So I am constantly out of breath.
Can you tell us more about the Levothyrox scandal, which is at the center of your book?
Sylvie Robache : The new formulation of this drug (Levothyrox **) made sick people even sicker than they were. Some retained the aftereffects, others died. There have been many suicides. This formula also had an impact on professional life (inability to go to work) and on married life. What must be remembered is all these lies that have been told, we were made to look like hysterics. The bosses did not believe the sick, we were storytellers. Note also that patients have had car accidents, because of dizziness, as a side effect. It was essential to alert on this new formula. The worst part was that patients took the latter, not knowing that the formula had been changed. So they had been thinking of taking the prescribed medication for years. And those who were aware, did not understand, for their part, what was happening to them, these side effects. Some people told me they thought they had cancer.
Why is this cancer being talked about so little?
Sylvie Robache : You are right to pick it up. When I first announced my cancer, I heard relatives say to me, 'Thyroid cancer is okay. It heals very well. ' Already, for most people, the thyroid is not helpful. 'You have more. You can live without '. There is a real lack of information.
What is the thyroid?
The thyroid is a small butterfly-shaped gland found at the base of the neck, just in front of the windpipe. It is an endocrine gland, which is an organ that produces hormones that pass into the bloodstream and work throughout the body. Vital functions depend on thyroid hormones. They are the motor of the body's energy and they have effects on the heart, the digestive tract, the muscles … Compared to the heart muscle, thyroid hormones cause an increase in the heart's rate and increase the force of its contractions. which increases blood flow. Good thyroid function in pregnant women is essential for fetal brain development, for example, according to an article in The Conversation. There are different symptoms of thyroid disease: Hyperthyroidism is an excess of thyroid hormones in the blood and mainly affects women between the ages of 30 and 40. Hypothyroidism is a breakdown of the thyroid gland, which no longer makes enough hormones. A thyroid nodule is a lump that forms in the thyroid. Thyroid cancers. And goiter is an increase in the size of the thyroid. To detect these ailments, several examinations are available: palpation of the neck, biological examinations, ultrasound of the neck, cytological puncture and scintigraphy.
Satisfaction for the sick. We therefore wanted to give the floor to Sylvie Robache, 57, delegate of the French Association of Thyroid Patients (AFMT) to learn about her daily life following the ablation of her thyroid and her fight against the new Levothyrox.
** Taking synthetic thyroid hormones compensates for the loss of hormone production by the thyroid.