Pulmonary Embolisms (PE) That Magically Develop - No DVTs

Welcome to Connect @cheath You made me smile with “I’m a special girl!” Sometimes we just don’t want to be tagged as special, especially when it comes to medical conditions. While I’d like to think I’m a marginally interesting person, no words make me happier than to hear my doctor say, “You’re unremarkable” after a followup appt. 😅

Gosh, having all these unexpected or unexplained blood clots is reason for more investigation. Are you working with a hematologist? With your blood tests, has anyone run a genetic panel on you to check for Factor V Leiden which is a genetic mutation that can cause people to develop blood clots in the legs and lungs. It is an inherited trait. Do you know if either of your parents had unusual clotting?

Lori,
I have never heard of Factor V Leiden. I ended up with a DVT in my upper thigh after my surgery in feb of 2022. I was on Eloquis for 6 months, then off it, my 2nd surgery in late December of 2022. I got the blood thinners in shots then. A visit to the vein doctor who said my US showed my clot is still there, although there is some blood moving. I have now been wearing a thigh high compression stocking as i was on Plavix for 3 months and said no more!! That doctor said i could be someone prone to clots. What?? For now, one stocking needs replacing.

@katgob. If you are prone to blood clots it’s important to do everything you can to prevent them, of course. You’re wearing compression stockings, which are great for helping blood to circulate and keeping it from pooling in your legs. But they won’t prevent clotting if you have an underlying condition such as thrombocythemia in which your body produces too many platelets or Factor V Leiden, which inherited blood clotting disorder that raises your risk of abnormal blood clots.

These are only a few examples and not meant to alarm you. But I think it’s important to bring it to your attention that there may be underlying issues which could be the cause of your history of clotting.

There are also risk factors like smoking, infections/inflammatory diseases, sedentary life styles, being overweight or being descendants of people who have clotting disorders. https://www.cdc.gov/ncbddd/dvt/features/blood-clot-risk.html

I’m not sure what tests you’ve had run to see if there are any potential disorders. But there are simple tests to measure clotting times, CBCs to check the amount and size of your platelets along with your red and white blood cells. Genetic panels can be run to see if you have any gene mutations, either hereditary or acquired, which are causing the clotting issues.

Do you know if any of those tests run done for you? Has a doctor mentioned taking baby aspirin daily as a way to prevent clots?

@cheath I have had one episode of PE's without any evidence of DVT also. I have HIGH Factor VIII genetic disorder where I clot too much. I put the word high in capitals as the other factor VIII is the opposite, you bleed too much. The treatment is the same for me either way though, (I'm on a blood thinner called Eliquis for life (maintenance dose) and so far so good it's been probably 3 to 3.5 years since my last one. See a hematologist for customized care. We lived somewhere where I did not feel the medical care was as good and as accessible as we would have liked so we moved closer to a top tier medical city (I realize not everyone can do that but we were moving anyway) I have an Apple Watch with the stand reminders to get up and move every hour (I pretty much do this anyway though). I'm supposed to lose weight also to lessen the risk (I'm about 30-50 more than I should be) but getting the weight off has been a challenge due to other medical issues. So if you haven't already see a hematologist, but you aren't alone. My first episode I did have both a DVT and PE but not the second time. I was not on blood thinners or treatment inbetween the two incidents and they thought they were provoked versus unprovoked and did not know I had HIGH Factor VIII at the time. Hence why now on blood thinners for life. Hang in there!

@katgob if they are testing you for Factor V you may wish to get tested for Factor VIII also. HIGH Factor VIII also is a reason to clot too much. But there is a whole panel related that they could run too, so definitely see your hematologist and seek a second opinion if you don't feel you are getting answers.

Hello, so great to find this site. I am dealing with multiple pulmonary emboli in both lungs. Totally unexpected. Was on a walk and went into tachycardia which eventually resolved. EMTs suggested follow up blood work to check for possible heart attack. At first, I thought the ER doctor had the wrong patient when he told me that I had multiple emboli in both lungs! Fast forward to 1.5 years later, and still not a firm diagnosis. I have a wonderful hematologist out of Cleveland clinic that is really digging into this, but still after 3 blood draws (9 vials of blood each time) every 6 months, no final diagnosis yet. At first, we thought it was lupus related, but the numbers that are wonky in July resolved in November.
No one will talk to me about covid (had it 2 times (first time before vaccines and it was very bad) and a super bad lower respiratory infection prior to the diagnosis. I was never hospitalized with covid, so this variable excludes covid as a possible reason) Also, received 2 J&J covid vaccines. Will be on Eliquis for the rest of my life (I am 63 years old and very active; walk daily and still working full time. I just messaged my hematologist to see if I can be tested for Factor V Leiden. good luck to all of you! Cindy

Hello, I too had massive bilateral pulmonary embolisms (both lungs) without ever having a DVT. The episode completely took me by surprise. Note every patient is different. Due to my age, I am told to stay on Eliquis 2.5mg tablets twice daily for the remainder of my life. Doctors at first did not know why I clotted. I am negative for Factor V and VIII. No history of any blood clots in my family history either. Today, more doctors are thinking the J&J Covid vaccination in 2021 may have caused it (I had it three months prior to clotting.) I will say, I had to change hematologists as the first one put me on the initial dose of Eliquis 5mg twice daily and she kept me on it for a year! I had no idea that the medication was going to cause me issues! Taking the Eliquis at this high dosage for about a year, I developed a lot of muscle and nerve pain in my legs to the point that I needed a walker. I experienced internal tremors in both legs and went to see a neurologist even. I struggled with the pain as it caused me not to be able to sleep even. Tylenol did nothing to help. Finally, I sought out a new hematologist who explained that I should not be on such a high dosage for maintenance! We decided to cut the dosage in half. Within a few months the pains started to subside somewhat. Fast forward to a year later, I was able to walk on my own. No more walker nor cane. No pain in my legs. I now exercise with a recumbent bicycle and feel like my old self pre-clotting. Doctors now tell me not to get any booster shots too. Oh, and I never had Covid ever. Be aware of all medications. Get a hematologist you are comfortable seeing as well. Good luck.

A hypercoagulation panel on blood checks for several things that increase clotting. One is anti-phospholipid (cardiolipin) antibodies, often occurring with lupus. Infection can increase platelets and it would be interesting to look at whether the PEs occurred during an infection. There’s a high risk of clotting when a cancer is present and clots are sometimes the first clue. Each problem is treated with a different medication, so it is essential to find out the cause. Sometimes Coumadin is necessary, as Eliquis or Xarelto may not be enough. A thorough investigation must be done by a hematologist who knows clotting disorders thoroughly. I hope you all have access to specialists and if not it’s worth traveling to get the diagnosis pinned down.

Glad you are feeling better and walking again without assistance.
Now I am worried! I have been on 5mg. Eliquis 2x per day for 1.5 years with no sign of reducing. I did get the Covid booster -Pfizer (family doctor recommended).
Getting frustrated with the guess work and blood tests, and no final answer but covid really threw everyone for a loop. Maybe in the future, with more research, there will be better answers. So many unknowns right now.

We are special. May a year ago I was diagnosed with giant cell arthritis placed on large doses of prednisone and an injectable called ACTERMA. In February my legs were swollen. I thought it was from prednisone went to the ER and found out. I had three pulmonary embolisms. They put me on heparin while I was in the hospital. Discharged me on Eliquis two weeks later had a follow up with my rheumatologist, she said, I think you have another pulmonary embolism? I don’t know what made her say it back to the ER and sure enough while on the Eliquis I developed one they switched me to Lovenox injections which caused an inordinate amount of bleeding. I could not even leave the house follow up with hematologist , after numerous blood tests and work ups and CAT scans and colonoscopies I was discharged on xerlto. Went for a baseline, CAT scan, the tiny non-inclusive while on Eliquis was gone, and there was a new one while on xeralto😵‍💫 I have had a venogram done. My legs are whistle clean Cardiologist stumped As well as two hematologist . Like you, I am a special girl unfortunately I had to vacations planned since I hadn’t been anywhere in two years and now they are canceled I know it sounds trite. But I’m 72 and I’d really like to see my family in New York. UGG if you hear anything or come up with anything, let me know and vice versa.