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Diabetes: Another Problem With Hormonal Birth Control

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Diabetes is the 7th leading cause of death in the United States according to the American Diabetes Association. Tens of millions of people have diabetes and are at increased risk for a whole host of other problems because of it. The estimated economic cost of diabetes is nearly $245 billion each year. BILLION! So shouldn’t we take a look at how to decrease these risks, lessen this economic burden, save lives?

I’ve done a lot of research on birth control pills, their side effects, and how those risks are communicated to women. My interest in the topic is both personal (I suffered a stroke from hormonal birth control at age 28) and professional. I’ve been reviewing the Nelson Pill hearings and what I’ve found is shocking. Beyond the obvious correlation between blood clots and hormonal birth control, even back in 1970 doctors and scientists knew that these medications affected, contributed to, and caused a myriad of health problems from weight gain to stroke. One of the most surprising to me, because I hadn’t come across it in any of my previous research, was the link between synthetic hormones and diabetes. Dr. Hugh J. Davis, the first doctor to testify at the Nelson Pill Hearings said the following (page 5930):

“A woman, for example, who has a history of diabetes or even a woman with a strong family history of diabetes is not an ideal candidate for using oral contraceptives… [they] produce changes in carbohydrate metabolism which tends to aggravate existing diabetes and can make it difficult to manage.”

Hormonal birth control elevates blood glucose levels, can increase blood pressure, increases triglycerides and cholesterol, and accelerates the hardening of the arteries, among other things. They knew this in 1970. But what about the research now? Well, if you’ve read any of my other articles it probably won’t surprise you that the current research is… wait for it… you guessed it… INCONCLUSIVE! Here’s a look at what I’ve found:

“Cardiovascular disease is a major concern, and for women with diabetes who have macrovascular or microvascular complications, nonhormonal methods are recommended. There is little evidence of best practice for the follow-up of women with diabetes prescribed hormonal contraception. It is generally agreed that blood pressure, weight, and body mass index measurements should be ascertained, and blood glucose levels and baseline lipid profiles assessed as relevant. Research on hormonal contraception has been carried out in healthy populations; more studies are needed in women with diabetes and women who have increased risks of cardiovascular disease.”

 

And:

“The four included randomised controlled trials in this systematic review provided insufficient evidence to assess whether progestogen-only and combined contraceptives differ from non-hormonal contraceptives in diabetes control, lipid metabolism and complications. Three of the four studies were of limited methodological quality, sponsored by pharmaceutical companies and described surrogate outcomes. Ideally, an adequately reported, high-quality randomised controlled trial analysing both intermediate outcomes (i.e. glucose and lipid metabolism) and true clinical endpoints (micro- and macrovascular disease) in users of combined, progestogen-only and non-hormonal contraceptives should be conducted.

 

Not enough evidence is available to prove that hormonal contraceptives do not influence glucose and fat metabolism in women with diabetes mellitus.”

For women with polycystic ovarian syndrome (PCOS), this is particularly troubling. They are already at an increased risk for diabetes. “Researchers in Australia collected data from 6,000 women and found that those who had PCOS were three to five times more likely to develop type 2 diabetes than women who didn’t.” Yet the first treatment doctors usually prescribe for PCOS is birth control pills. It’s unclear whether the PCOS alone increases a woman’s risk or just that most women with PCOS are treated with hormones that make her more likely to develop diabetes.

It begs the question, why are we treating a woman for a condition that increases her risk for diabetes with a drug that increases her risk for diabetes?

Even if you don’t have PCOS, you are still at risk. A recent study showed that “women who used hormonal methods of birth control had higher odds for gestational diabetes than did women who used no contraception.” So using hormonal birth control may prevent you from getting pregnant but at the cost of making a future pregnancy more dangerous? It’s not just dangerous for pregnant women, however. Hormonal contraceptives seem to predispose women to diabetes across the lifespan. For example, another study found:

“The prevalence of diabetes was significantly higher in post-menopausal participants who had taken OCs (oral contraceptives) for more than 6 months than in those who had never taken OCs. The duration of OC use was also positively associated with the prevalence of diabetes. Furthermore, taking OCs for more than 6 months led to a significant increase in fasting insulin levels and HOMA-IR in nondiabetic participants. Past use of OCs for more than 6 months led to a significant increase in the prevalence of diabetes in post-menopausal women, and increased IR in nondiabetic participants. These results suggested that the prolonged use of OCs at reproductive age may be an important risk factor for developing diabetes in post-menopausal women.”

This is further proof that taking hormonal birth control affects women for much longer than the duration they take it. A correlation between synthetic hormones and diabetes was evident to doctors and researchers back in 1970 and we’re still trying to understand those effects today. Dr. Hugh Davis testified (pg 5928) about hormonal birth control:

“While you are accomplishing your contraceptive objective you are producing very, very widespread and generalized changes.”

I’m starting to feel like a broken record here, but at what point are these risks not acceptable? And why do we still not fully understand these risks? The goal of the Nelson Pill Hearings was to determine if these medications were safe and they are clearly not. Over and over, experts testified and said the pill should not be taken off the market but that it should be studied more and replaced by something better as soon as possible. As we can see, that hasn’t happened. Women are still having to make the choice between convenient contraception and their health and safety. The risks involved with hormonal contraceptives are still being downplayed, skewed, and hidden. If a serious and potentially life-threatening condition like diabetes is not too high a price to pay to avoid pregnancy, what is? How about loss of libido? Mental health? Weight gain? Blood clots? Stroke? Loss of life? Dr. Davis also said (pg 5925):

“In using these agents (hormonal contraceptives), we are in fact embarked on a massive endocrinologic experiment with millions of healthy women.”

I couldn’t agree more. And the experiment continues.

We Need Your Help

More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

Yes, I would like to support Hormones Matter. 

Photo by Sven van der Pluijm on Unsplash.

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Blood Clots: What Women Know Versus What We Should Know

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I was on the birth control pill for ten years. I knew that it could cause blood clots in women over 35 who smoked. I wasn’t over 35 and I didn’t smoke. That was all I thought I needed to know. Then I had a stroke. It was caused by the pill and a genetic clotting disorder I never knew I had. In fact, I didn’t know there was such a thing as clotting disorders or that I could have one or that in combination with hormonal birth control, it could kill me. And I certainly had no idea what the symptoms of a blood clot were.

What Do We Know? Not Too Much, It Appears

When I began to do research for my thesis, I wanted to know if it was just me or if other women who took the pill were also unaware of clotting disorders and of the symptoms of a blood clot. Spoiler: I wasn’t alone in my ignorance.

I surveyed over 300 women who had taken birth control pills. Among other things, I wanted to know:

  • What did women know about the risks associated with the pill?
  • Were they aware of clotting disorders?
  • Did they know the symptoms of a blood clot?

Survey Results

Neither Women Nor Their Doctors Understand Risks for Blood Clots

The results of the survey showed that women do not clearly understand the risks involved with taking birth control pills. Many of them believe that certain risks are only associated with being over 35 years of age and/or smoking. This is not surprising given that only a little over half said their doctor discussed the risks with them before giving them a prescription. And for a majority of the women, their doctor never discussed other birth control options with them.

Most of the women were asked about their family history before being given a prescription, but fewer than half of their doctors actually discussed it with them, and fewer than a third of the women actually read the risk information that accompanies their prescriptions. That’s not surprising given how dense and misleading the pharmaceutical companies have made risk communication.

When asked whether they were familiar with the symptoms of a blood clot, most women (60.5%) admitted that they were not. Eight women responded that they had learned the symptoms because a family member or friend had a blood clot, and two participants said they had actually had blood clots. One stated, “When I experienced chest pain and did research online. It turned out that I had pulmonary embolisms (while on BCP- birth control pills).” Only 6 out of 311 women reported learning about the symptoms of blood clots from their doctor. Ironically, more women knew someone who had a clot.

At the end of the survey, the participants were invited to share anything further about their experience on the pill. Here are some of their answers:

My experience on birth control pills, the Nuvaring, or Depo-Provera all proved to be horrendous… I think birth control pills came straight from hell and I hate, hate, hate it. I would rather undergo Chinese water torture daily thank take birth control, and that is the God’s honest truth… My fertility has been affected forever by my under informed choice to go on birth control, and by the irresponsible doctors who encouraged me to switch methods rapidly “until I found what worked for me.”

 

I’ve had two different GYNs give me completely contradictory information about the side effects and dangers of BCPs… Overall, I’m surprised at how little doctors seem to know about female BCP- I haven’t experienced this amount of ambiguity with any other medical specialty or problem.

 

I was shocked- and grateful- when I finally found a doctor who discussed alternatives with me, suggested a wide variety of reading, and let me do my own research and make my own decision before wiring[sic] a prescription. After doing the reading, there is no way I will ever take another birth control pill in my life. Every other doctor I had acted like it was giving out Altoids…

 

I think they’re too often the first option doctors prescribe for reasons other than birth control. That’s frustrating. They’re not a magic pill and some doctors seem to think they are.

The bottom line is that most women do not fully understand the risks involved with taking birth control pills and they are not familiar with the symptoms of a blood clot.

At my thesis defense, when I mentioned that most women (over 60%) did not know the symptoms of a blood clot, my advisor asked, “Well, I don’t think that’s so unusual. Do you think most people know what the symptoms of a blood clot are?”

“No, but I think people who have been prescribed a medication that greatly increases their risk of blood clots should be informed of the symptoms,” I responded.

Who Is Responsible?

This is a simple question with a complicated answer. Who is responsible for making sure women who use hormonal contraceptives, especially women who are at a much higher risk for blood clots, understand the symptoms and when to get help? Is it the responsibility of the doctor who prescribed the medication? Or is it the responsibility of the pharmaceutical company to provide clearer information? Or is it the responsibility of the patient?

From my personal experience, I now know that I cannot trust my doctor to always make the right diagnosis and provide the right treatment. Most of their information comes from the pharmaceutical industry who have clearly demonstrated that they put profit first. And our research is showing that their information is not correct. Therefore, I cannot rely on the drug companies to make sure they provide me with accurate and straightforward information about their medications.

So that leaves me. And you. Until we demand a system that puts patients first, a system of health and transparency, we have to put ourselves firsts. How? We do that by listening to our bodies, doing the research, and learning to trust our intuition. That may mean we have to disagree with our doctors. That may mean we have to ask for a second opinion. That may mean we have to insist on being heard. We can’t be afraid of offending someone or “rocking the boat.” We can’t be afraid of being considered hysterical or melodramatic. We can no longer sit back and hope others are making the best decisions for us. We have to educate ourselves. We must be our own advocates. Our lives depend on it.

And we can start by learning the symptoms of a blood clot.

What Are the Symptoms of Blood Clots?

 Blood clot in leg:

  • swelling
  • pain
  • tenderness
  • an unusually warm sensation in the affected area
  • an unusually cold sensation in the affected area (this is per our research, more details to follow)
  • pain in your calf when you stretch your toes upward
  • a pale or bluish discoloration

Blood clot in chest:

  • sudden shortness of breath that can’t be explained by exercise
  • chest pain, may feel like extreme heart burn
  • palpitations, or rapid heart rate
  • breathing problems
  • coughing up blood
  • dizziness (per our research)
  • uncharacteristic fatigue (per our research)

Blood clot in the brain:

  • severe headache
  • loss of speech
  • numbness or tingling of limbs
  • difficulty seeing or changes in vision
  • difficulty speaking or finding words

For more information about blood clots, especially in conjunction with hormonal contraceptive use, click here.

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Birth Control and Blood Clots Study Final Week: Add Your Data Now

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Birth Control Blood Clots Study

A few months ago, Lucine Health Sciences and Hormones Matter began a pilot study looking at risk factors and warning signs/symptoms in women who have developed blood clots while using hormonal contraception. This study consists of a survey questionnaire, and a personal story/case report, which is shared on Hormones Matter with the study participant’s permission. We would like to thank all of the women who took the time to complete our survey and who courageously shared their stories to help inform our research.

This phase of the study will close on July 25, and we will then perform a full data analysis on all of the results. In the mean time, we have already written about some of our early results here and here. What we have learned so far from our survey results suggests that some information that is commonly accepted about the risks for blood clots on hormonal birth control may not be true, and that the risk information is not communicated to women in a realistic and truthful way.

What We’ve Learned So Far

Early Survey Results

Many blood clots develop after years of use. Although it is thought that the risk for developing a blood clot is highest in the first year after starting or restarting hormonal contraception, our data to date show that 75% of women developed clots after the first year on the medication, and only 25% developed clots within the first year. Many women developed clots even after significant lengths of time on the medication, in some cases, even after up to 21 to 30 years.

Smoking is a risk but not THE risk. Many women are led to believe, by information provided to them by pharmaceutical companies and their doctors, that they are only at risk of a blood clot if they are over 35 years old, and smoke. However, 94% of women in our study were not smoking at the time of the blood clot, and 78% had never been smokers. Smoking does increase the risk, but the idea that you are only at risk of you are a smoker is false.

Clotting disorders are not identified. We also discovered that women are not being tested for blood clotting disorders that significantly increase their risk of developing a blood clot while on hormonal contraception. Fully 89% of the women in our study did not have such testing prior to starting hormonal contraception, and a further 9% did not know if they had any testing. Only 2% of the women were able to state with certainty that they had been tested.

These results, as well as additional results, will be explored further when the study is complete. We will be looking at women’s ages when they developed blood clots, warning signs and symptoms, other side effects from hormonal birth control, additional risk factors, and more.

Personal Story Findings

At Hormones Matter, we believe strongly in the power of the personal story. Like case reports, they give us a breadth and depth of information that cannot be captured as well in the more quantitative results. As part of this project, we have been collecting and publishing these stories. In addition to the trends emerging from the survey results, we’re seeing several disturbing trends regarding whether and how risks for blood clots are communicated, tested for and/or identified. In most cases, there appears to be a significant disconnect regarding these risks.

Risks for blood clots are not communicated. What do these stories have in common? The women who developed clots were not aware that these serious complications could develop as a result of hormonal contraception. Laura Buccellato, whose daughter Theresa died at age 16 from a pulmonary embolism, said in her story

“Our doctor did not go over any of the side effects with us or what to look for if something were to go wrong. I trusted my OBGYN because I have been with her for most of my life and she had four children so I never felt she would put Theresa in any kind of harm.”

If women are taking a medication with the possibility for serious injury or death, they should certainly be informed of risks. They should also be educated about early warning signs and symptoms of blood clots.

Signs of blood clots are not recognized by physicians. Another common and disturbing trend has emerged from the personal stories: in the early stages, and sometimes even in the later stages of the blood clot event, blood clots are not considered in the differential diagnosis. More often than not, when women approach their physicians with signs pointing to blood clots, they are dismissed.  The possibility of having a blood clot is not investigated or even considered, and most doctors do not even ask the patient about their use of hormonal birth control. For example, Kerry Gretchen was suffering from the symptoms of a blood clot in her brain for a month, and was sent home from the emergency room twice and told that her symptoms were due to a migraine. This resulted in even more severe effects from her stroke. Susan Eklund McKenzie had taken her daughter Marit to the doctor twice for symptoms related to a pulmonary embolism, but unfortunately this was never investigated, and Marit died at age 18.

Blood clots are devastating. Another commonality is just how catastrophic these blood clots can be. The women who have had strokes (stories are here, here and here) all had to relearn how to perform the daily functions of life, such as walking, writing, showering and dressing themselves, and some of the women have lasting disabilities.

It is known that pulmonary embolism has a high mortality rate, and the women whose stories we have shared who suffered from a pulmonary embolism, all died as a result (stories are here, here and here). Brittany Malone had a massive blood clot in her leg, and as a result suffered pulmonary hemorrhage, respiratory failure, heart attack, irreversible brain damage, and death.

We would all like to think that this could never happen to us, but as Detrease Harrison said, in her story of having a stroke after 23 years on the birth control pill:

“I used to tell people I had no risk factors for having a blood clot, but almost everyone has some kind of risk factor.”

Participate In The Birth Control and Blood Clots Study

There are two weeks left in this phase of our study, and then the survey will be taken down and to analyze the results fully.

If you are a woman who has suffered from a blood clot while using hormonal birth control, we urge you to participate in our study to help us learn more about this important women’s health issue.

Because of the severity of some blood clots, including death or serious disability, we allow parents, family members, or partners to take the survey for the affected individual.

If you know someone who might like to participate, please share this article with them.

If you have begun the survey and haven’t yet completed it, please do so in order to enable us to use your data. We cannot use your data, if the survey is not complete.

If you’ve completed your survey but haven’t yet sent us your story, please do so.

We will be continuing to share women’s stories over the next few months, so please continue to follow the study on the Hormones Matter website, on our Facebook page, and on Twitter.

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5 Surprising Reasons Not to Use Hormonal Birth Control

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The following is a list of some the health factors that increase your risk of side effects from taking hormonal birth control. It is by no means a complete list of contraindications but you may find some of these surprising. I know I did.

Five Reasons You May Want to Reconsider Hormonal Birth Control

Reason 1: Smoking and Age

You are probably familiar with these warnings. You may have heard them on television commercials or seen them on magazine advertisements. Or maybe you read my article about risk communication and saw them there. The problem with these warnings is that the wording makes it seem like you are only at risk if you are over 35 and a smoker. But the truth is that these two risk factors stand independent of each other. You are at increased risk if you are over 35 years of age. You are at increased risk if you are a smoker of any age. And if you are a smoker who is over 35, you have an exponentially higher risk for blood clots when using hormonal birth control.

Reason 2: Migraines

According to a 2010 article in the Reviews in Obstetrics and Gynecology, 43% of women in the United States suffer from migraines. That’s a huge number of women. Also, according to the same article, 43% of women using birth control are using hormonal contraception (the pill, rings, shots, implants, etc.). I’m not a statistician but I’m guessing there is some overlap between the women that suffer migraines and the ones using hormonal birth control. This is problematic for two reasons:

  1. A great deal of evidence suggests that migraine, particularly migraine with aura, is associated with an increased risk of ischemic stroke, and that this risk may be further elevated with the use of hormonal birth control. But if you don’t believe me, both the American College of Obstetricians and Gynecologists and the World Health Organization advise that women who suffer migraines with aura should not use hormonal contraception.
  2. Reevaluation or discontinuation of combination hormonal contraception is advised for women who develop escalating severity/frequency of headaches, new-onset migraine with aura, or nonmigrainous headaches persisting beyond 3 months of use.

A 2016 meta-analysis of seven research studies demonstrated “a two- to fourfold increased risk of stroke among women with migraine who use combined oral contraceptives (COCs) compared with nonusers.” But once again, like so many other things about hormonal birth control, the authors of the study report that research is lacking in this area and more studies need to be done.

Reason 3: Family Clotting Disorders

Many people have a clotting disorder and simply don’t know it. When I had my stroke while on birth control pills, I had no idea that I had the fairly common clotting disorder Factor V Leiden (FVL affects between 3-8% of people). But what I did know was that my grandmother had had two strokes. And my aunts and uncle had all had blood clots.

Unfortunately, women are not systematically tested for clotting disorders before they begin using hormonal birth control. This is very dangerous and why it’s so important to give your doctor a thorough family history; something I know I wouldn’t have considered that vital when I was 18 years old.

A lot of health professionals don’t take the time to review your family history, making it even more important that you mention your family history of blood clots and your concerns about hormonal contraception. You might even insist on being tested for clotting disorders before increasing your risk of a dangerous and sometimes deadly blood clot.

Reason 4: Depression and Mental Health

I explore this further in this article but the basics are:

  • Hormonal contraceptives can cause mental health issues
  • Women who suffer from mental health issues are much more likely to suffer from increased symptoms when on hormonal contraception
  • Often the longer hormonal contraception is used, the greater the symptoms
  • Discontinuation of hormonal contraception can usually alleviate mental health symptoms

Reason 5: Diabetes

Dr. Hugh J. Davis, the first doctor to testify at the Nelson Pill Hearings said the following (page 5930):

“A woman, for example, who has a history of diabetes or even a woman with a strong family history of diabetes is not an ideal candidate for using oral contraceptives… [they] produce changes in carbohydrate metabolism which tends to aggravate existing diabetes and can make it difficult to manage.”

Hormonal birth control elevates blood glucose levels, can increase blood pressure, increases triglycerides and cholesterol, and accelerates the hardening of the arteries, among other things. They knew this in 1970. But what about the research now? Well, if you’ve read any of my other articles it probably won’t surprise you that the current research is… wait for it… you guessed it… INCONCLUSIVE! Here’s a look at what I’ve found:

“Cardiovascular disease is a major concern, and for women with diabetes who have macrovascular or microvascular complications, nonhormonal methods are recommended.

There is little evidence of best practice for the follow-up of women with diabetes prescribed hormonal contraception. It is generally agreed that blood pressure, weight, and body mass index measurements should be ascertained, and blood glucose levels and baseline lipid profiles assessed as relevant. Research on hormonal contraception has been carried out in healthy populations; more studies are needed in women with diabetes and women who have increased risks of cardiovascular disease.”

And:

“The four included randomised controlled trials in this systematic review provided insufficient evidence to assess whether progestogen-only and combined contraceptives differ from non-hormonal contraceptives in diabetes control, lipid metabolism and complications. Three of the four studies were of limited methodological quality, sponsored by pharmaceutical companies and described surrogate outcomes. Ideally, an adequately reported, high-quality randomised controlled trial analysing both intermediate outcomes (i.e. glucose and lipid metabolism) and true clinical endpoints (micro- and macrovascular disease) in users of combined, progestogen-only and non-hormonal contraceptives should be conducted.

Not enough evidence is available to prove that hormonal contraceptives do not influence glucose and fat metabolism in women with diabetes mellitus.”

As a side note, a recent study demonstrated a link between hormonal contraceptives and gestational diabetes.

Contraception is a very personal choice. I believe all women should research the risks associated with using hormonal contraception, but especially if you experience any of the health conditions above. Should you weigh the risks and benefits of using hormonal birth control and decide it’s still the right choice for you, please take a moment to review the symptoms of the blood clot and seek help immediately if you notice any of these.

Real Risk Study: Birth Control and Blood Clots

Lucine Health Sciences and Hormones Matter are conducting research to investigate the relationship between hormonal birth control and blood clots. If you or a loved one have suffered from a blood clot while using hormonal birth control, please consider participating. We are also looking for participants who have been using hormonal birth control for at least one year and have NOT had a blood clot, as well as women who have NEVER used hormonal birth control. For more information or to participate, click here.

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In the early days of hormonal birth control, many physicians and politicians seemed extraordinarily indifferent to the side effects linked

Deep Vein Thrombosis on the Birth Control Pill

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Deep vein thrombosis birth control pill

I got divorced in May 2012. My life was pretty stressful, and I had a very demanding job that took up a lot of my time. I had been getting hormonal migraines for over 10 years when in February 2013, I finally mentioned the migraines to my nurse practitioner. I was desperate for relief. She said, “Why don’t you go on the pill and get rid of your period and then you won’t get the migraines anymore.” I was reluctant since I’m not a band aid type person. I don’t like getting rid of the period to get rid of the migraine. I’d rather go to the source and get rid of it that way, but no one was buying that the migraines were hormonal.

So I began the birth control pills (Loestrin) in February 2013. I was relieved because I had no more headaches! However, I didn’t really feel well despite that. In June, my daughter graduated high school and I looked horrible. Looking back now, my health was going downhill, but I’m not sure exactly what it was due to since I had a lot going on.

We had a busy summer that included a vacation with a long car trip of about 14 hours, split up over two days, to get to our destination, and the same coming home. In retrospect this may have contributed to the blood clots that I developed later in the summer.

On Friday August 2, 2013, I was getting ready for work and started experiencing some pain in my groin, but blew it off. That pain got worse as the day went on. I couldn’t put pressure on my left leg at all. That evening, when I got home from work, my leg was so swollen from my hip to my calf, that I needed help getting my pants off. I couldn’t get out of bed all weekend. On Monday, I faked feeling better because I couldn’t afford to take time off from work for a little pain. I’m a good minimizer of pain. However, on Tuesday, when I went to work and still had a painful and swollen leg, my boss forced me to go to urgent care since I couldn’t find a doctor that could see me.

The doctor at the urgent care couldn’t find anything wrong with me and was just about to send me on my way when he asked if I had family history of clots. I said no. He asked if I was on birth control. I said yes. He sent me for an ultrasound. There was the absolute minimal amount of blood traveling through my left leg because it was so overcome with multiple clots. The doctor wanted to send me to the hospital, but thinking of my kids and being a single mom, I said I couldn’t go. So he gave me Xarelto, an anticoagulant, and I agreed to bed rest until Friday and then I’d see my primary care doctor to see if I was any better.

When I went to my primary care doctor, I was still swollen and could barely put any pressure on my leg. She didn’t even run tests. She sent me straight to the hospital without me knowing what the plan was once I got there. I got out of the car in the hospital parking lot and started walking to the door and fell. My legs gave out. I’m still unclear if that was related to the clots.

When the hospital started admitting me, I was shocked and had to call my daughter to let her know what was going on. I thought I was just getting a bit of treatment at the hospital and going home. I didn’t really realize how serious this was. I asked my kids to meet me at the hospital after school and by the time they got to the hospital, I had undergone surgery to remove the clots and put in two stents to keep the veins open and hopefully clot free.  The next day, they did an ultrasound and saw most of the clots gone, but not all. This was Saturday. So I had to wait until Monday for another surgery.

During all of this they also discovered that I have May-Thurner syndrome, which is when a vein in the pelvis gets compressed by an artery passing over top of it. This causes narrowing and decreased blood flow through the vein that is affected, which increases the risk of deep vein thrombosis in the leg.

I was in the hospital for a week. My hemoglobin levels dropped too low to be released. After being released and going home with a walker to get used to walking again. I started having neurological issues. I ended up in two more hospitals and later found out I had an underlying neurological condition that was now in full force. By October 2013 an ultrasound showed that all of the clots in my leg were gone, but now with my neurological condition, I have a lot more to deal with. To make sure I don’t get another deep vein thrombosis, I also have to be careful with flying or on long car trips to wear compression stockings and make sure I move around every two hours, and of course I won’t be using hormonal birth control again.

Real Risk Study: Birth Control and Blood Clots

Lucine Health Sciences and Hormones Matter are conducting research to investigate the relationship between hormonal birth control and blood clots. If you or a loved one have suffered from a blood clot while using hormonal birth control, please consider participating. We are also looking for participants who have been using hormonal birth control for at least one year and have NOT had a blood clot, as well as women who have NEVER used hormonal birth control. For more information or to participate, click here.

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Hormonal Birth Control: Who Is At Risk of Serious Side Effects?

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Birth Control Blood Clots Study

Almost two months ago, Lucine Health Sciences and Hormones Matter started a new research project called the Real Risk Study: Birth Control and Blood Clots. The purpose of this research is to assess the breadth and depth of blood clot risks and other side effects associated with hormonal contraception. We believe that a deeper understanding of medical and lifestyle influences is crucial to providing women with a complete picture of their personal risk for blood clots while taking these medications.

To date we have collected data on 64 to 87 women (depending on which section of the survey we are analyzing) who have suffered from blood clots while taking hormonal birth control. These blood clots include deep vein thrombosis and pulmonary embolism, as well as strokes. Many women in the study have had long lasting effects even after they recover from the initial effects of the blood clot. And some women, unfortunately, have suffered from fatal blood clots, and a family member participated in the study on their behalf.

Risk Based on How Long Hormonal Contraception Has been Used

It is generally thought that the risk of developing a blood clot is highest within the first year of starting or restarting hormonal birth control. However, in a previous article we reported on some of the early data we had obtained, and we found that most of the women in our study had been on hormonal contraception longer than one year when they developed a blood clot. In our current data set, we have data from 87 women, and the same trend continues. Seventy-five percent of women developed clots after the first year on the medication, and only 25% developed clots within the first year. In some cases, women developed blood clots even after up to 21 to 30 years on hormonal contraception.

Risk for Blood Clots Based on Smoking History

One of the goals of the study is to provide a clearer picture of who is at risk for developing a blood clot related to hormonal contraceptive use. In the information provided by pharmaceutical companies, smoking and being over age 35 are highlighted as being risk factors. For example, the package insert for Beyaz/Yaz, the most popular birth control pill in the U.S., states:

Who should not take Beyaz or YAZ?

Do not use Beyaz or YAZ if you smoke and are over age 35. Smoking increases your risk of serious side effects from the Pill, which can be life-threatening, including blood clots, stroke or heart attack. This risk increases with age and number of cigarettes smoked.

In the previous article reporting on some early results of the study, we analyzed data from a question asking women whether they were smokers when they developed a blood clot. Using data from 87 women, the trend previously reported from our smaller data set was borne out again in a larger data set. Ninety-four percent of women in our study were not smoking at the time of the blood clot, and 78% had never been smokers. So although smoking does increase the risk, not smoking does not mean you are not at risk.

Risk for Blood Clots Based on Genetic or Acquired Blood Clotting Disorders

It is known that having a blood clotting disorder significantly increases the risk of developing a blood clot while on hormonal contraception. These disorders can be genetic, meaning that they are encoded in the genes and the person is born with them, or acquired, meaning that they are a result of an environmental factor occurring during a person’s life, such as a drug exposure or another disease. With genetic blood clotting disorders, there may also be a family history of blood clots in other relatives. Genetic disorders include Factor V Leiden mutation, protein S deficiency, and prothrombin mutation. Acquired disorders include antiphospholipid syndrome, hyperhomocysteinemia (which may also be present as a result of MTHFR mutation), and heparin-induced thrombocytopenia.

We asked if study participants had a family history of blood clots, and if so, which relative had a blood clot. Fifty-eight percent of the women in our study had no family history of blood clots, and therefore, no reason, from a family history perspective, to suspect they would be at increased risk for a blood clot. In participants for whom there was a family history, parents and grandparents were the most common relatives to have had blood clots, at 14% and 12% respectively. Less common was a history of blood clots in an aunt or uncle, sibling or cousin. These results are depicted in the bar graph below. For a parent or grandparent to be the most commonly reported relative with a blood clot is expected, because the risk of blood clots increases with age.

Family History of Blood Clots in Study Participants

Birth control and blood clots - clotting factors 3

Having a family history of blood clots makes it more likely that there is a genetic disorder that increases the risk of blood clotting running in that family.  We asked the women in our study whether they had been tested for blood clotting disorders before starting hormonal contraception. As can be seen below, 89% of the women in our study did not have such testing prior to starting hormonal contraception, and a further 9% did not know if they had any testing. Only 2% of the women were able to state with certainty that they had been tested.

Testing for Genetic Blood Clotting Disorders Prior to Starting Hormonal Contraception

Birth control and blood clots - clotting factors 2

We also asked if the participants if they had a known clotting disorder, recognizing that some women would have been tested for clotting disorders after their blood clot experience, and thus, even if they did not know about a clotting disorder prior to starting hormonal contraception, they may have learned about it afterwards. Only 20% of the women in our study had a known clotting disorder, as can be seen in the chart below. For the other 80% who answered “not that I know of,” it may be that they were never tested for a clotting disorder, or that they were tested and were negative for all known clotting disorders. So far, we do know from follow up interviews with study participants that in some cases, this testing was done and was negative. Upon completion of the study, we will know how many women were definitively negative for all known clotting disorders. Of the 20% of women who did have a known clotting disorder, none were tested for it before starting hormonal contraception.

Study Participants With Clotting Disorders

Birth control and blood clots - clotting factors family

Of the women that did have known clotting disorders, Factor V Leiden mutation was the most common common disorder, found in approximately 9% of study participants. This is consistent with what is known about Factor V Leiden mutation: it is known to be the most common blood clotting disorder. Other blood clotting disorders were found with low frequency in our study, as can be seen in the bar graph below.

Blood Clotting Disorders Present in Study Participants

Birth control and blood clots - clotting factors

Summing Up

So far, our preliminary data suggest that many of our study participants did not have known factors that would increase their risk of developing a blood clot while on hormonal contraception. The majority of women in our study were not smokers, and did not have a known clotting disorder, and a significant number of women did not even have a family history of blood clots. In addition, most women developed blood clots after the first year of medication use. We will be continuing to assess these and other known risk factors as we continue with our study, as well as trying to identify if there are any previously unrecognized risk factors. However, it seems that any woman using hormonal contraception could potentially be at risk. This makes it especially important to learn the warning signs and symptoms of all types of blood clots, and make an informed choice of whether hormonal contraception is right for you, knowing the risks.

Real Risk Study: Birth Control and Blood Clots

Lucine Health Sciences and Hormones Matter are conducting research to investigate the relationship between hormonal birth control and blood clots. If you or a loved one have suffered from a blood clot while using hormonal birth control, please consider participating. We are also looking for participants who have been using hormonal birth control for at least one year and have NOT had a blood clot, as well as women who have NEVER used hormonal birth control. For more information or to participate, click here.

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Shattering Myths: Birth Control and Blood Clots Study Early Results

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Birth Control Blood Clots Study

Lucine Health Sciences and Hormones Matter launched an important new research project one month ago. The Real Risk Study: Birth Control and Blood Clots is a multi-phased project designed to assess the breadth and depth of blood clot risks and other side effects associated with hormonal birth control. The current phase of the research involves collecting survey data and case reports from women who have suffered from blood clots while using hormonal birth control. Although data collection is still in the early stages (we have data from 42-50 participants, depending on the question), some important trends are already beginning to emerge.

Are Newer Users Really More At Risk?

One of the statements often made in medical publications, and even stated in the pharmaceutical companies’ own package inserts, is that the risk of developing a blood clot on hormonal birth control is the highest among new users or those restarting (within the first year of use or re-use). In our study, we are asking the question “How many total or cumulative months or years had hormonal contraceptives been used prior to the clot?” In our preliminary data set of 50 women, only 22 percent developed blood clots within the first year of use. The majority of women, 78 percent, developed blood clots after the first year. From our data, it does not seem true that the risk of blood clots is highest within the first year of use.

Seventy-Eight Percent of Hormonal Birth Control Induced Blood Clots Develop After One Year

Birth Control and Blood Clots: Preliminary Results

We further analyzed the data set to refine our understanding of when blood clots were developing relative to length of time on hormonal contraceptives. The chart below shows the percentage of women in our preliminary data set that developed clots after various lengths of time. The size of each box is proportional to the number of women in that group. Because the data is preliminary, and the number of women in each group is still small, we cannot really compare the sizes of the groups to each other until we have more data. However, we can say that women are developing clots after a wide range of time on hormonal contraceptives, even after up to 21-30 years on the medication.

Hormonal Birth Control Induced Blood Clots Develop More Frequently in Years 1-10

Birth Control and Blood Clots: Preliminary Results

Cigarette Smoking as a Risk Factor for Blood Clots

We are also asking survey questions about known risk factors and possible risk factors, to try to get a clearer picture of all of the factors contributing to a woman’s risk of a blood clot while on hormonal contraception. Cigarette smoking is known to increase the risk of developing a blood clot, and it is referenced in the package inserts that come with birth control pills. In the information for Yaz, the most popular birth control pill in the U.S., the warning states:

WARNING TO WOMEN WHO SMOKE: Do not use YAZ or Beyaz if you smoke and are over age 35. Smoking increases your risk of serious side effects from the Pill, which can be life-threatening, including blood clots, stroke, or heart attack. This risk increases with age and number of cigarettes smoked.

However, it has been pointed out that the risk communication by pharmaceutical companies in these inserts employs language that is misleading about the true level of risk, and the message most women who read the inserts come away with is that if they don’t smoke and are not over age 35, they are not really at risk.

In our survey we are asking the question: “Were you a smoker at the time of the blood clot(s)?” So far we have collected data from 42 participants for this question. In our data set, 79 percent of women who suffered from blood clots while on hormonal contraception had never been smokers. Another 12 percent had smoked previously, but were not smokers at the time of the blood clots. Altogether, 91 percent of women in our study were not smoking at the time when they develop the blood clot(s). This means that women cannot be confident that they are not at risk just because they do not smoke.

While these results are very preliminary and will have to be confirmed with the larger sample pool and the additional validation studies we anticipate, the data collected thus far seem to suggest that risks described by the industry do not correspond to the reality of what women experience. Although some women develop clots soon in the weeks and months after initiating hormonal birth control, the vast majority do not. Similarly, although smoking is certainly a risk, not smoking does not equate with lack of risk. So what causes the blood clots in some women and not in others? That is what we are trying to determine with this study.

Birth Control and Blood Clots Is about the Chemistry

We know from the basic chemistry that hormonal contraceptives skew coagulation factors in favor of blood clotting in all who take them. The research on this is pretty clear. These synthetic hormones increase the coagulation factors by 170%, almost three times their normal levels. Simultaneously, hormonal contraceptives decrease the anti-clotting cascades by 20%. This alone is sufficient to create blood clots and yet, not all women who take hormonal birth control develop clots or develop them very quickly. In some cases, it is years before the clotting becomes problematic.

What causes some women to develop clots soon after starting hormonal contraception, versus those who develop clots after many years? What causes some women without any known risk factors to develop massive DVTs and/or massive bilateral pulmonary embolisms, and die in their twenties? Is it determined by genetics, by medication interactions, by lifestyle variables, or by various combinations of risk factors? We do not know. No study to date has been sufficiently comprehensive to determine those risks. The Real Risk Study is.

Participate in Research

Lucine Health Sciences and Hormones Matter are conducting research to investigate the relationship between hormonal birth control and blood clots. If you or a loved one have suffered from a blood clot while using hormonal birth control, please consider participating. We are also looking for participants who have been using hormonal birth control for at least one year and have NOT had a blood clot, as well as women who have NEVER used hormonal birth control. For more information or to participate, click here.

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Sharing My Story, Feeding the Hope

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death by hormonal birth control

When I took this job—combing through the Nelson Pill Hearings, researching and writing about the risks with hormonal birth control, working on the Real Risk study—my mother said to me, “Are you sure you want to do that? Are you sure you want to dig up all that stroke stuff?”

“Mom,” I said, a little exasperated. “It’s been 10 years. I’m fine with it.” Duh was close to what I was thinking but didn’t say. The weird thing is, my mom may have been right. Okay, that’s not entirely fair. My mom WAS right. (NEWSFLASH: My mom is right sometimes!) This job has been hard, and not just because reading congressional testimony is draining and because I’m so passionate about this work. It has been hard because it has forced me, nearly every day since November, to examine what happened to me.

I had a stroke because of hormonal birth control and for a long time I believed my doctors (and much of the research I found when writing my thesis) when they said that I was special. That this sort of thing didn’t happen much. Because I thought I was an anomaly, I was able to bury my head comfortably in the sand and call that “dealing with it.”

It hit me that I had not been dealing with it when I sat in a room with Karen Langhart and the parents of four other young women who had died while using hormonal birth control. As they shared their stories, tears slid down my face. I knew I was not an anomaly. It could have easily been my mom sitting in that room and not me.

I’ve written about how important it is to share patient stories. And we’ve written about the importance of the Real Risk Study. I’ve participated in the study. I’ve written my story (all three parts of it: Part 1, Part 2, Part 3). But it has not been easy for me. Which means it has taken unfathomable courage and strength for the families who have lost their daughters. I had to face a sadness that was buried deep under a layer of “getting on with life.” But for these families, the sadness isn’t buried because there is no “getting on with life.” It’s right there, out in the open, raw and exposed. Their lives will never look remotely the same.

When we publish an article about a health crisis or a death related to hormonal birth control it is not because we are alarmists. It is not because we are whiny or dwelling in the past. It is because this work is important. This study is important. I was not an anomaly. The young ladies who were killed by hormonal birth control are not anomalies. They are daughters, wives, sisters. They could be you or someone you love. We share because we are not alone. We are a group of survivors and advocates.

One of the most amazing things that has happened to me from taking this job is that, despite the challenges, it has helped give meaning to what happened to me. I’ve met and connected with amazing people. While much of it has been cloaked in sadness, the thing that shines even brighter in these interactions is hope. And hope is healing. By sharing my story and participating in this research, I am feeding that hope.

It is my wish that you will help feed that hope, too. If you are a survivor of a blood clot or a family member of someone killed by a blood clot and you have been hesitant to participate, now is the time. If you aren’t, I guarantee that you know someone (a friend or relative or a friend of a friend) who has been affected by a blood clot while on hormonal birth control. Now is the time to share this link. Because there is hope in sharing. And healing in hope.

Real Risk Study: Birth Control and Blood Clots

Lucine Health Sciences and Hormones Matter are conducting research to investigate the relationship between hormonal birth control and blood clots. If you or a loved one have suffered from a blood clot while using hormonal birth control, please consider participating. We are also looking for participants who have been using hormonal birth control for at least one year and have NOT had a blood clot, as well as women who have NEVER used hormonal birth control. For more information or to participate, click here.

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