Updated 06.39 | Published 06.29
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After two months on the pill, Alice, 17, developed a severe headache.
It would later turn out to be blood clots in the brain, which the doctors believe was due to the contraceptive.
– I think you should know about the risks, says Alice, who now wants to warn others.
It was in March this year that 17-year-old Alice was prescribed birth control pills at a youth clinic.
At the time, no one knew that it would later turn out that Alice carried a very unusual gene – which two months later would lead to an equally unusual reaction.
Alice, who is a very active girl every day and likes to play floorball and meet friends, was given so-called combined birth control pills. She managed to eat the tablets, which contain both estrogen and progestagen, for just over two months.
Then, when she was on holiday in Cyprus, the symptoms began to appear. By sudden headache.
Alice’s mother Anna tells Aftonbladet how her otherwise active and energetic daughter started complaining about the headaches and how it then increased sharply.
– We thought at first that it could be because we were on holiday. Sun, bath and a little less sleep than usual, but when we were going home it escalated and she started vomiting.
Anna describes the flight as a “disaster”.
Had very unusual genes
Once home, the family called 1177, which urged them to go to the emergency room.
– They thought that we had been abroad and that it might be because of that, says Anna.
The doctors examined Alice, who finally had a brain X-ray. The images showed that Alice had several clots and she was admitted to the intensive care unit. In total, she had to stay in hospital for two weeks and was given injections of blood thinners.
In connection with this, an investigation into the origin of the blood clots was started. That it could have something to do with the birth control pills was a highly probable thesis, the doctors told the family.
– Since she started eating them in March and this happened in May, the doctors already had their ideas then. But it was only afterwards that we got an answer.
It turned out that both mother Anna, Alice and her two sisters have a so-called hereditary disorder, a prothrombin mutation, which causes the blood to clot more easily. This in turn increases the risk of blood clots.
In Alice’s case, a so-called “sinus vein thrombosis” occurred. Cerebral vein thrombosis, also called sinus thrombosis or CVT, means that a venous blood clot forms in the brain. in the brain – something that only affects around 1-2 per 100,000 people per year – and which can be “triggered” by birth control pills.
No one in the family knew before the investigation that they carried the gene.
– I had no idea. I have taken the same birth control pills as Alice when I was young and also gave birth to three children, which can also increase the risk of blood clots, says Anna.
A new study was recently published from Uppsala University which shows that genetics affects the risk of blood clots when using birth control pills.
According to the researchers, women with a high genetic vulnerability to blood clots are six times more likely to develop one during the first two years of pill use.
Alice is an active girl who likes to play floorball, but the time after the plugs has been a battle with brain fatigue and impaired vision. Photo: Privat Can be seen with a blood test
The researchers believe that the knowledge can be important in contraceptive counseling in the future, as it can identify women with a high risk, like Alice, and thus be able to offer alternative contraceptive methods.
Among other things through blood tests that can already be taken at birth.
– It is something we researchers dream of. That when you come to a clinic, we would like the doctor to get a warning saying that this person has an increased risk. We are not there today, unfortunately. But I hope that in the future we can work a little more preventively around things like this, says Åsa Johansson, who has led the study.
Furthermore, she says that in cases where there are known cases of blood clots within the family, one should be careful when prescribing birth control pills.
– Then you can be referred to clinical genetics and get a gene analysis. But there can also be cases where it is not as clear, that you are unlucky and have received many genes from both the mother and the father, which increase the risk, says Åsa Johansson.
Viveca Odlind is a senior expert at the Swedish Medicines Agency and has worked with treatment recommendations regarding contraceptives for a long time.
She states that there is a lot of knowledge about the risks of birth control pills, and that those who prescribe the drugs are very aware of them.
The mother: Printed too lightly
She also knows about the study from Uppsala University.
– This thing with single blood tests has been discussed for a long time, but unfortunately it only covers a small part of all genes. So it is unfortunately not a good prerequisite for screening. Heredity is a known risk factor, but the assessment has been made that the benefit-risk balance is positive given that the risk of blood clots is very small.
Alice’s mother Anna is aware that her daughter’s illness could have been avoided if a blood test could have been taken before the prescription of the birth control pills took place.
– It is not possible to say for sure that it was the birth control pills, but everything indicates that they were the ones that triggered this gene mutation that she has.
She is also critical of how, in her opinion, birth control pills are prescribed too easily today.
– I feel that it is done without any direct research. This would not have had to happen if a proper investigation had been done beforehand, says Anna.
“Should know about the risks”
At the same time, she pays tribute to the nursing staff who took care of her daughter.
– They have really done a super job and put their soul into Alice becoming as good as possible. It was really really bad. If we hadn’t gone in when we did and if they hadn’t discovered this, it could have gone very badly.
The time after the plugs has been a struggle for Alice, with brain fatigue and impaired vision. But recently the family received the gratifying news that all the plugs have disappeared.
Alice also feels more energetic. At the same time, she doesn’t want other young girls to be intimidated by her story.
– But I think you should know about the risks and really try to check if you might be in the risk zone for clots before you start.