birth control and blood clots

What Everyone Needs to Know About Hormonal Birth Control

3833 views
Like
Print Friendly, PDF & Email

My only child, Theresa, came to me a month before her sixteenth birthday and told me she had sexual intercourse for the first time. I was not happy about it, but I was very happy we were close enough that she knew she could come to me about it. I spoke my mind about how I felt she was too young, but I also knew deep down my words would not prevent her from having sex again. Theresa asked about going on the birth control pill. I had been on the pill in my 20’s and had no side effects from it. I told her I would make an appointment with my OBGYN that also delivered her, and we would discuss the options with her first.

Starting the Birth Control Pill

Theresa had an exam by the doctor and then I joined them in the doctor’s office to discuss birth control. Our doctor mentioned the pill first. My first reaction was to ask about other contraceptives but the doctor felt the pill would be the best for Theresa. She said she would put her on one of the lowest dose pills, called Ortho-Cept. I was aware of some of the side effects of the pill like gaining weight, blood clots, and danger if you smoke (Theresa did not smoke). 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. She also was aware of my family medical history and that my mother had a stroke at 32 years old.

Theresa was on the pill for a month and a half and never complained to me about it. On August 15th, 2010, Theresa and I spent the whole day at the mall putting the final touches on her Mardi Gras Sweet 16 party. She was having her party in October instead of her birthday month in July because she wanted all her friends back from summer vacation so they could attend. Theresa always dreamed about her sweet 16 party; it was the day she felt she would be a princess and her start of becoming an adult. That night after shopping we stayed up all night ordering the masks for her Mardi Gras party. When I went to bed that night I had no clue our lives would end the very next day. That instead of watching my daughter’s dream party happen, it would be a memorial concert on her party date instead.

The Day that Changed our Lives Forever

August 16th, 2010 started out as a normal day. I woke up and got ready for work. Theresa was still asleep so I did not wake her to say goodbye. Around 1:00 in the afternoon she called me at work to ask if she could go out with two of her friends. I said yes and that her dad or I would pick her up at 9:00 PM. I told her I love you and we hung up. Those were the last words ever spoken with her.

Her dad decided he would pick her up that night. I remember just getting out of the shower when my phone rang. It was her dad telling me Theresa was sick and he had called an ambulance.  I did not even wait for details; I got in my car and headed to the pizzeria he told me they were at. We later found out that Theresa had complained of a headache about an hour before the ambulance was called, and then became delirious, and vomited. I was there within 10 minutes and saw a huge crowd outside the pizzeria along with an ambulance. I rushed into the pizzeria and saw Theresa on the stretcher out cold. I remember looking around the pizzeria and it being packed with people. As soon as we got into the ambulance I saw the paramedics rip open Theresa’s shirt and start CPR. I was in a daze and in shock. I had no clue what was happening, but I knew I was losing my child.

When we got to the hospital the doctor on call continued CPR and made my ex-husband and I leave the room. A couple of minutes later the nurse came out to tell me to come in and hold her hand. I already knew Theresa was gone. The doctor then had me go out of the room and told us Theresa was gone. He said her pupils were not dilated, and there was no indication it was caused by any kind of substance. That I already knew: Theresa hated drugs and did not do them.

I remember walking back in the room to be with my daughter. She was lying on the table with her eyes wide open. I will never forget that picture. Theresa had the most beautiful green eyes and she was so proud of them. I remember blurting out I wanted to donate them. Everything after that is a total blur. My 16 year old daughter was dead and I had no clue why. She was a very healthy, athletic, young girl. I always thought we were blessed because if I took her to the doctor more than once a year for feeling ill, that was a lot.

I called our OBGYN the next day to tell her Theresa died. I still had no thought in my head that the pill had anything to do with her death. I actually thought she had an aneurysm because her friends said she complained about a headache an hour before she died. Two days after her death our OBGYN called me that the autopsy results were already in. She said Theresa died from a blood clot that burst in her leg and caused a pulmonary embolism.

Factor V Leiden, The Risk Factor that We Were Not Aware Of

I was then told Theresa had a blood clotting disorder called Factor V Leiden. Dr. Melgar told me that everyone in my immediate family and my ex-husband’s immediate family had to be tested for it because this disorder is genetic. She told me a simple blood test would determine if anyone in the family carries this disorder. I immediately went and had blood work done and found out I have Factor V Leiden also. Theresa got it from me, and I never even knew this disorder existed. My sister had her four children tested for it and two of her children turned out to be positive. My nephew has it and one of my nieces has it from both her parents, which is very serious.

I started doing research on this and that was when I found out the pill Theresa was put on was not the same kind of pills I was on in my 20’s. Hormonal contraceptives now have different types of progestins in them, and classified into second and third generation pills by the type of progestin. Women using third generation progestins have an even higher risk of developing a blood clot than women using second generation progestins.  I also learned if Theresa had a blood test before she went on the pill, the doctor would have known about her having a blood clotting disorder, and she would have never been allowed on any kind of birth control.

After reading all this I drove straight to the doctor’s office to find out why the blood test was never mentioned. Dr. Melgar explained to me that the medical opinion is that blood clotting disorder is rare and insurance companies will not pay for the blood work so doctors do not mention it to their patients. She did not even give us the option to pay for it out of pocket. The insurance companies feel it is not cost effective to run this test on people going on birth control cause only 5-7 out of 10,000 die from it.

A simple blood test (that I would have paid for) would have saved Theresa’s life. Instead, she died from this. Theresa’s life, to the medical and pharmaceutical industry, did not matter. She is now just a statistic to them. For Theresa she lost her life, her future. She was a promising young woman that wanted to either become a veterinarian or work as a social worker with Project Children. She wanted to make a difference in this world.

As for her father and I, we might be living, but we are both dead inside. We lost the only important person in our life. We will not see our daughter graduate from college this year, get married, or ever have any grandchildren. The medical/pharmaceutical industry stole everything from Theresa and us, just by not mentioning a simple blood test.

Since Theresa’s death I have been trying to spread the word to others about this blood test. I am not against birth control at all, but I am against the facts not being revealed. I feel people need to know about this blood test. In Theresa’s memory I will tell people about this test over and over again. Many people I have talked to have had this test done after hearing of Theresa’s death. So many people have turned out positive for Factor V Leiden. I have come to find that this disorder is not as rare as the medical industry wants us to believe it is.

Actually talking to different doctors, I have found they are very ignorant about this disorder, and they have not been educated about it. It is up to us to fight for this blood test and make it mandatory for all females to be tested for it. Unfortunately a lot more people will probably die before it does become mandatory. I am hoping by telling Theresa’s story, this will bring awareness to others. Please insist on the blood test if you or anyone you know is going on any kind of hormonal birth control. Being a carrier (having one mutation, instead of two) also increases your risk of having a blood clot.

You need to watch all signs in your body for complications. Have you had many miscarriages? A swollen leg, that’s painful, red, and warm to the touch? Trouble breathing? These are all signs that you might have this disorder or a danger sign about your birth control. The number of people having strokes, pulmonary embolism, and dying have been increasing every year and the third generation birth control pills are contributing to this problem. The medical industry no longer cares about saving lives. They have teamed up with pharmaceutical companies to get as many profitable drugs on the market so they can benefit from it, instead of patients benefiting from it. They need to be stopped and only we can do that with our voice being heard.

Since Theresa’s death I have met many other parents that have lost their children to birth control and we are all trying to spread the word together. In conclusion, if one person’s life is saved from sharing Theresa’s story, then at least her death will not be in vain. I miss my child every second of every day. I lost my future, my best friend, my child and WHY? Because the medical industry felt she was not important.

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.

 

Share

13 Comments

  1. I am very sad to hear of this tragic case which, unfortunately, happens over and over. It is both easy and tempting to blame the pharmaceutical companies and/or the medical profession. Even so, I believe that there are several points that are worth considering to put the risks of birth control pills (BCPs) and the value of routine blood test screening in perspective:
    (1) To somewhat defend the pharmaceutical industry, the risks of blood clots are usually clearly outlined in the package insert that is provided with birth control pills (BCPs). Clinicians and patients should review and discuss these risks.
    (2) If BCPs (or a similarly effective contraceptive method) is not used, then one needs to consider the risks of pregnancy which carries a number of other potential risks including the hypercoagulable condition that persists during preganacy for several weeks after delivery.
    (3) Factor V Leiden accounts for about 85% of the cases of activated protein C resistance (APCR). Therefore, one should also test for APCR if testing for Factor V Leiden.
    (4) Both Factor V Leiden and mutant Factor II occur in about 5% of the white population and are less common in other races.
    (5) There are several other hypercoagulable conditions that can be inherited. The other conditions are much less common but also are stronger “clot inducers” such that a family history of blood clots may be cause for concern even in the absence of Factor V Leiden, APCR, and mutant Factor II.
    (6) Although hormonal therapy + Factor V Leiden (or APCR) increases the risk of clots several fold, the absolute risk remains relatively low. Just as an example (using numbers that may not be accurate), the use of BCPs in a “normal” person may increase the annual risk of a clot five fold – let’s use from 1 in 10,000 to 5 in 10,000. But if an individual has Factor V Leiden, then the annual risk may be increased up to 30 fold (30 per 10,000 rather than 1 per 10,000). The “flip side” of that is that 9,970 – or 99.7% – would not have a clot.
    (7) The risk of false positive results must be considered whenever generalized screening is considered. There is always the risk of a falsely positive test indicating that a condition is present when it is not. Just as an example, if a test is 95% accurate, then there would be 5 falsely positive tests in 100 tests. If 5% of the population has a given condition, then routine screening of 1,000 individuals would correctly “identify” the 5% with the condition; but an additional 5% would be label incorrectly as having the condition. In that scenario, screening would identify 100 positive tests but, in reality, one half of those patients would not have the condition – they would be false positive results – while the other 50 would actually have the condition. In other words, a positive test result would be correct one-half of the time and incorrect one-half of the time. If one considers a scenario in which the accuracy of the test is 95% but the prevalence of a given condition is even lower (let’s use 1% as is the case for several other hypercoagulable conditions), then 50 of 1,000 people will have a falsely positive test and 10 will have a truly positive test. Among the 60 positive tests per 1,000, a positive test is 5 times more likely to be misleading than accurate. If one screens for Factor V Leiden, APCR, mutant Factor II, and perhaps other hypercoagulable conditions, the risk of false positive results may result in actions that are not warranted for many patients.

    • So in another words you are saying this blood test might show up positive for people that do not actually have it? That is fine cause their lives are not being put at risk. Statistics of how many people have it, is not on target cause people are not tested so they have no clue how many people actually have it.
      I am not against birth control at all………….I am against what is not being told to people being put on it. One mention to me about the blood test (with me paying for it) and my daughter would be alive.
      You must be in the industry and trying to defend how our medical industry has become all about making money now, instead of saving lives. I am leaving it at this cause you really do not want to hear what is really on my mind after reading your gibberish.

      • He *is* in the industry.

        He is quoting the same garbage that was being used over 15 years ago to justify *not* testing for FVL – that if women were deprived the pill because of a positive test result for FVL, they’d be too stupid to find other ways to avoid pregnancy.

        Get this clotcare.org: if the tragedy “happens over and over” then maybe you’re looking at the problem wrong. WE ARE INDIVIDUALS WITH INHERENT DIGNITY AND WORTH.

        I’ve noticed that there is no concern about the effect of FVL on pregnancy – and the number of women who have repeated miscarriages because of it. When you read about some poor person having more than 5 miscarriages before they resort to low molecular weight heparin shots (which insurance may not cover), you have to wonder: is this really about *women’s* reproductive freedom?

        I am homozygous for the FVL mutation – which I discovered after surviving a bilateral pulmonary embolism triggered by the pill.

        I have sure that I write down my daughter’s FVL status on *everything* – including school, even pre-school.

        • Betty I am so sorry about your PE but am very happy you survived it and are aware you daughter has it for her safety. I agree so many preventable miscarriages happen because doctors do not test for this till many miscarriages happen. Now I am also very confused here. The website you listed. That website you just listed, I had wrote them to share my daughters story. I sent this story and told them if they were interested I would re write it for their website. The jerk above Henry Bussey wrote me back saying they are not accepting stories anymore that the website was no longer being taken care of, then he went and posted that comment on here. Now when you posted the link I went to the website which btw is .com not org incase anyone else wants to check it out. I went to the site and on the shared stories the first shared story is from Marie Bussey that wants stories to be told. I find this very strange and am wondering if she was who I emailed and he opened it saying the site is no longer being used so that real stories are not told and Marie Bussey has no idea about this. Good luck with your daughter, the best thing is you know she has it so you both can watch for signs cause leaving it up to the doctors is too dangerous for people.

    • Thank you for expressing your sadness about Theresa’s death. It truly is a tragedy that happens too many times for our young women. And thank you for pointing out the other hypercoagulable conditions that need to be tested for or family history taken. That is the kind of helpful information women and their families need to know because their health care providers aren’t telling them. I do have a few problems though with some of your other responses and hope you will hear me out in this post. https://www.hormonesmatter.com/dear-pharma-supporter-stop-excusing-birth-control-induced-blood-clots/

      • Thank you Dru. After reading his reply I was too angry to come up with a rational response lol. I love your response and its right one the spot.

    • You are purely IGNORANT!!! And a male at that!!
      PREVENTION is the key! EVERY PATIENT should be screened for this before any hormone birth control is prescribed PERIOD!!! And every insurance company should have to pay for it PERIOD! This isn’t debatable! This is LIFE OR DEATH!!
      Doctors should have a full consult informing the patient of ALL risks before prescribing BCP. If they feel it isn’t necessary or leave it up to the patient to read the mumble jumble encrypted medical terms that only a medical professional can understand then they shouldn’t be prescribing it or practicing for that matter!!

      I have had at least 3 pulmonary embolisms and the first while on BCP. I was told it was from BCP and smoking. Just before delivering my son the Dr on call (Was not mine originally) read my chart and asked why I had the clot. I told him from BCP and smoking. He said “No it was not.” I didn’t understand at the time but curiosity and his concern made me find this Dr and get an appointment with him.
      He sent me to the lab after explaining he did not believe what I was told to be true.
      He saved my life that day! I not only had Factor V Leiden but also a protein S deficiency. His request was for all my siblings and their children to be tested. Unfortunately 3 out of 9 have it.
      I now know the risk and symptoms and never hesitate to go to the emergency room with even the slightest symptom.
      If it weren’t for the concern of the Dr that wasn’t even my physician I may not be here today. Dr. Spyros Kitromilis since that day became my Dr until his retirement.
      A Dr that could have easily just delivered a baby and not bothered to ask that one question “Why?”

  2. I wanted to share this email I got from a friend. She shares Theresa’s story all the time and a friend wrote her this.

    Laura just wanted to let you know that you have saved another young girl. The letter is from the mother to me

    I hope you are well. I want to thank you for continually posting the Info regarding factor 5. Just recently the doctor wanted to put my oldest daughter on birth control due to cyst and heavy menstrual cycle. Because of your post I insisted she be tested for the factor. especially since I have a grandmother that died from blood clots. Because of the test they discovered she is factor 2. Which means she is a high risk of DVT and other forms if blood clots. Her doctor let us know that she can NEVER take any form of estrogen and when she has children she will have to be on a blood thinner! I am so thankful your post made me aware.

  3. I’m so sorry to hear about your daughter. I also have factor v Leiden and was on the pill for a few years without knowing. It wasn’t until my dad got a DVT and found out that he had factor v Leiden that they tested me, I was then taken off that pill straight away and changed to a mini pill. You’re right that more needs to be done, it seems that I may have been lucky.

  4. OMG what a story. Horrifying and tragic. I went on birth control at a very early age because I had horrific periods (and migraines). That was more than thirty years ago. Thank you Laura for sharing this story. I am so, so sorry for your loss. It could have been prevented … we now see. Every woman must know this.

Leave a Reply

Your email address will not be published.

This site uses Akismet to reduce spam. Learn how your comment data is processed.

Previous Story

Risk Communication and Hormonal Contraceptives

Next Story

Happy Ending to Migraines: The Benefits of Milk

Latest from Birth Control and Blood Clots