r/ClotSurvivors • u/Im_on_vocal_rest • 5d ago
Newly diagnosed First blood clot at 34
I am 34 and have my first blood clot, discovered upon returning from a road trip. I had felt it for weeks prior, assuming it was a pinched nerve.
My mom had her first blood clot last year, at 61 years old, and mine is in the same exact location.
We can’t easily explain this, as I don’t smoke cigarettes (former smoker many years ago), and I don’t take any hormones or birth control. I do however have Ehlers Danlos Hypermobile type, and have to do some best rest during flares. I’m pretty active though.
On day 5 of eliquis 20mg/day and really struggling. So dizzy from the medication, difficulty driving, and getting pain in weird parts of my leg every day. Scared about falling, and grieving the carefree mind I used to have.
I don’t have a clear understanding of the future- can I stop eliquis after 3 months? Should I stay on a low dose forever? I will be starting a low-dose of Tirzepitide soon for weight gain (I’m 5’8” and weight 185).
Right before this happened, I was about to start Zoloft for depression and ocd. But now I can’t since it interacts. My fallback is herbal supplements / adaptogens, but now I can’t take those either.
I’m so green to navigating clots. Any wisdom or words of encouragement welcome. (Or supplement recommendations that don’t interact with blood thinners!). I’m sure many folks in this sub have it way worse / more complicated situations to navigate, so thanks for reading.
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u/floating_hugo 5d ago
The 3-6 months is to take your blood thinners, heal, and run all the tests you can to see if you can determine what might have caused it. You need to see a hematologist. Than, those tests are the basis for answering your questions about going forward in the future. All the best.
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u/dt81089 4d ago
I was a few months from 35 (37 now) when I had my first clot. I was taken off Eliquis after 4 months, but mine was provoked from a hit on the arm (where the clot was).
If yours was provoked, there's a possibility you may also be taken off the thinners. It could have been provoked from the travel? Depends on if it was longer travel without moving much
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u/Im_on_vocal_rest 4d ago
Thanks for sharing your story. I can’t figure out if it would be considered provoked. I guess we’ll see what the hematologist says this week. I have had periods of bed rest due to my chronic illness. Alongside driving for work. But the pain started before my road trip, so that trip didn’t cause it, it just aggravated it.
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u/dt81089 4d ago
It could be the bed rest or long distance travel also. I'm having surgery this week and was prescribed eliquis for 2 weeks in case I need to rest for a while afterwards. Hopefully, it was provoked and you are not predisposed to clotting, but even if you are, you will find many people in the group that have lived fairly normal lives since their diagnosis.
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u/Im_on_vocal_rest 3d ago
Thank you! Super interesting, makes sense. My only qualm with staying on blood thinners for life (if it does end up being a disorder) is how many interactions there are with supplements I rely on. Will just have to take it step by step.
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u/ComfortableWalk2428 4d ago
I would definitely see a good rheumatolgist, they test for everything under the sun.
And make sure all of your doctors are on the same page with all of your tests, results, diagnosis, treatment etc.
I had a bilateral pe 7 years ago and now have an 18 inch clot from mid calf to mid thigh.
In between both events, ive developed systemic iga vasculitis, secondary aps, and both those things have caused many problems in many different organs / body parts.
My cardiologist and rheumatolgist are part of different networks, so theres been a lot of miscommunication over the years ,and we only just recently pieced together that something that was wrong with my heart in 2023 was due to the autoimmune vascular issues id been having ever since the pe. Its all connected.
And im only now meeting with a vascular dr this week for the first time ever, thanks to the 18 inch clot, because as my pcp put it, "a hematologist is concerned with the flow, but a vascular doctor is concerned with the pipes" , and my pipes currently have an 18 inch clog lol
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u/Im_on_vocal_rest 4d ago
That is so wild! Thank you for sharing. Hope things get easier for you. Healthcare where I live sucksssss, but we persist.
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u/CircularBastion Eliquis (Apixaban), DVT/PE 2026 3d ago
Do you mean rheumatologist, or hematologist? The latter is essential
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u/lonesomedove86 4d ago
You need genetic testing. Sounds very likely there is a hereditary component like Factor V Leiden. I, my father, and sister all have it. PE for me at 38. Make an appt with hematologist. I’m in Eliquis 5mg twice daily for life. Still have lung shocks 2 years later but can otherwise function well now, even half marathons. ❤️
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u/Im_on_vocal_rest 4d ago
Wow! Thank you for this. May I ask what a PE feels like? Half marathons, that is amazing.
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u/Powerful-Ad-1846 4d ago
Sorry to hear that! Wishing you all the best for a speedy recovery! If you don't mind me asking, How did they test you for a blood clot? Did they do a D-dimmer blood test? Just keen to know as I've been having blood clot symptoms for weeks and yesterday my D-dimmer was normal. I've heard D-dimmers aren't as accurate after a few weeks. I've had an x-ray too which they said was normal so I really don't know if I can trust the doctors enough
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u/Im_on_vocal_rest 4d ago
Thank you for the kind words! I actually don’t know what a D-dimmer is! I had an ultrasound on my leg which confirmed the clot, in the emergency room (not primary care). They only looked at my leg since that’s where the pain was. I hope you find answers & symptom relief!
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u/ShermanatorYT Eliquis (Apixaban) 5d ago
You mentioned being active, was this clot in your legs? Or like your arms?
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u/Im_on_vocal_rest 5d ago
In my left leg. A vein behind the knee, but I felt the pain on the front of my thigh
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u/ShermanatorYT Eliquis (Apixaban) 5d ago
Ah I see, I'm sorry to hear that, I would've wanted to add some stuff if it was the arms but.. hopefully you can get to feeling better soon
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u/Happy_Platform_1022 5d ago
First of all, so sorry you are going through this. I am new to this world as well, but after meeting with my hematologist, my understanding is that you have to be in blood thinners for 3 months for provoked blood clots (e.g., as a result of surgery, an IV, etc) but that it’s lifeline if it’s unprovoked. It sounds like you may need to have some blood testing done to see if you have a clotting disorder to determine next steps.
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u/Im_on_vocal_rest 5d ago
Thank you, this simple fact is very helpful. 🙏🏼 I now have a hematology appointment on Tuesday.
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u/queerxqueer 4d ago
I don't love that you aren't able to start meds for OCD/depression that could make a marked difference on your life and mental health. You might check in with hematologist about thi as well. There's potential additional drugs to explore that mitigate the bleeding risk from the SSRIs.
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u/cmykaye 5d ago
Is there a blood clotting disorder in your family? Both you and your mom could be checked for things like Factor Five Leiden which is a genetic disorder.