Protein C Deficiency Often Has No Symptoms: Alicia’s Story

Protein C Deficiency Often Has No Symptoms: Alicia’s Story

I will never forget February 18, 2022. At the time, I was a healthy, active 30-year-old, training for my seventh half marathon. Two nights before, I had developed chest pain and shortness of breath. I wrote off the chest pain as a pulled muscle from lifting and dismissed the shortness of breath as anxiety.   

But then I experienced these symptoms again the following night, only the pain was much worse. It extended into my neck and arm and was worse when lying down and taking a deep breath. I knew it could be a sign of a heart attack, but as a very healthy individual, I thought this was unlikely.   

I had a nagging feeling and could not shake my anxiety, so the next day I called my doctor’s office and went to the ER. I was triaged into the hallway of the ER since every provider I saw was sure it was just a pulled muscle. Every test they had taken came back normal. My pulse oximetry, heart rate, chest X-ray, and EKG were all within normal limits. The only abnormality that my ER physician found was a slight fever.  

I was tested for COVID and awaiting the results. The only thing that had changed in my medical history was that I had started an estrogen-based contraceptive pill three weeks prior. I knew this could increase my risk of blood clots, but I had no symptoms of deep vein thrombosis — no leg swelling, pain, or redness. I also had no family history of clots.   

My ER physician decided to do a D-dimer test, which was elevated. The nurse assured me it could have been from something as small as a paper cut, but my doctor wanted to do a CT scan just in case.  

Much to the shock of everyone, my scan revealed bilateral pulmonary emboli (blood clots in both of my lungs) and a pulmonary infarct, which happens when lung tissue does not receive enough blood flow and oxygen. I was immediately started on blood thinners and admitted to the hospital.  

The next seven months were filled with anxiety, many doctor’s appointments, repeat tests and scans, misread results, second opinions, and even missed results. After being told that my PEs were from my birth control alone, I was diagnosed with Protein C deficiency a month later, which also contributed to my clots.  

Protein C deficiency often has no symptoms and can increase your risk of blood clots in certain circumstances, such as when taking estrogen-based medications. I had never heard of this diagnosis before and never knew that this, in combination with estrogen, could cause a life-threatening event.  

My advice for others is twofold. First, surround yourself with your loved ones because you will need their support more than ever during this. Second, always advocate for yourself and listen to your body. You know your body better than anyone and you know when something is truly wrong.  

I wanted to share my story in the hopes of raising awareness about blood clots, the risk factors of blood clots, and the signs and symptoms of these. Please educate yourselves on this because you never know when you or a loved one will need this information. 


Protein C Deficiency
Women and Blood Clots
Signs and Symptoms of Blood Clots

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