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Avatar universal

Blood clots or no blood clots?

So I had what I and the doctors thought was pneumonia for 4 months. My symptoms were pleural pain, difficulty breathing, and fatigue. I had numerous x-rays, CT scans, visits to my GP and a pulmonologist, plus an emergency room visit when I couldn't breathe due to rib and chest pain, plus three rounds of antibiotics, but they could only diagnose pneumonia. I wasn't getting much better, so I finally went to a second pulmonologist and he looked at all of my scans and symptoms and said he thought it wasn't pneumonia but pulmonary infarction, which he said is a subset of pulmonary embolism. He had me do three tests -- a ventilation/perfusion scan, an echo-cardiogram, and an ultrasound on my femoral artery. They all turned up negative results for any blood clots. I started been taking hormonal birth control about 2 months prior to my first symptoms to regulate my cycle and deal with other health issues, and both he and my OBGYN told me to immediately stop taking it regardless of the test results because it can cause blood clots. And now it's been 8 days since I stopped taking them and guess what? The pleural pain and shortness of breath have stopped and I have a bit more energy.

So the question is, were there blood clots that the scans just didn't catch? And what was that cloud at the bottom of my lungs that showed up on my x-rays and CT scans? It was always a bit inconclusive, so they diagnosed it as pneumonia. I'm doing a CT scan next week, so we'll see if that shows anything different. If the answer was to stop taking birth control I could have done that 4 months ago and not paid as much as $1000 in co-pays and taken over 100 hours of sick leave (thank goodness for telework, or it would have been more!).

So if you are a woman taking hormonal birth control and have these symptoms, even if they think it's something else, talk to your doctor about going off of it to see if the symptoms go away. You don't want to mess with pulmonary embolism!
2 Responses
Avatar universal
To start as a patient.  I had pulmonary embolisms misdiagnosed for three months, even after a chest CT-Angio was negative.



On a medical level as a nurse...

My ABG's were off.  But sat in 02 was normal.

After 3 months... we rescanned via v/q which was definitively positive.

The three best tests for detection of PE are v/q (small clots), Chest CTA (CT- with contrast), AND MOST IMPORTANTLY A DDIMER (looks for fibrin breakdown).

Did you have a Ddimer?
2 Comments
Yes. I had a Ddimer test, twice, and both times it was high, in the 900s. My O2 has been normal the whole tine. But the v/q test was negative as was the echobcardiogram and the femoral artery scan. But the most telling result is that I went off birth control for 8 days and my symptoms are almost gone. I’m getting a follow up CT scan soon so that may give more info. And I’m still taking it easy.
I would ask for 3 monthd of lovenox. Chance of bleeding are really low statistically.
Avatar universal
In terms of lab tests, the main value of D-dimer is for its negative predictive value, best used to exclude thromboembolic disease when the pretest probability is low. A negative result essentially rules out thrombosis. A positive result can raise the possibility of thrombosis but does not rule out other potential causes.

In terms of imaging tests, CTA chest is the study of choice for suspected pulmonary embolism, but V/Q scan is used if there are contraindications such as iodinated contrast allergy or renal failure. The diagnosis of pulmonary embolism during pregnancy imposes special challenges. One sample algorithm is as follows: In pregnant patients without leg symptoms, V/Q scan is preferred if normal chest radiograph, while CTA is preferred if abnormal chest radiograph.
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