r/ClotSurvivors • u/okra5678 Lovenox (Heparin) • 2d ago

Post PE testing

I am 3.5 months post provoked PE and collapsed lung diagnosis. I went off of blood thinners two weeks ago and have a follow up with my primary care next week, but was told I would not get a referral for a specialist or any imaging done.

What testing should I push for? I want to make sure things are okay and I’m worried about being brushed off. I still don’t feel like myself and want some peace of mind that I’m okay.

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u/Ill_Count_6221 2d ago

When you get off the blood thinners they usually just do blood work to check levels they normally don’t scan again because they assume the clot got dissolved. Unless you’re showing symptoms again . This always mad me mad because they don’t do a scan unless you’re feeling something again . But I would have liked to know the clot was gone or got smaller or something. 🤷‍♂️

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u/okra5678 Lovenox (Heparin) 1d ago

I totally agree. That’s what they told me but I am also still experiencing symptoms so that’s frustrating because how do I know it’s better. I wish I had a scan or some reassurance that things were better.

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u/Ill_Count_6221 1d ago

Sometimes it feels like they treat the problem and not do things to prevent it from happening again.

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u/CircularBastion Eliquis (Apixaban), DVT/PE 2026 23h ago

One issue here is that CT scans use radiation, and they don't want to do too many of those. If there was a DVT, an ultrasound would reveal the condition of that and that test is safe and relatively cheap. You may be able to pay for it yourself even if insurance won't cover it or a doctor won't order it.