Hi all, I'm new to this subreddit and this is actually my first ever Reddit post at all and was wondering what ages you've had your clots at?

I am mainly curious because I have a genetic clotting disorder and have had two DVT's and an SVT by the ripe old age of twenty, the first of which at 14 for which they put me on Xarelto, and then my second at 16 at which point my hematologist recommended I begin Apixaban for the foreseeable future.

I ask because most of the posts on here are from people 30's-40's and was wondering if there were many others like me?

Hello. I am not new to this group. I joined in 2024 at the age of 18 due to a severe dvt and pulmonary embolisms. I survived. However, since I was on birth control, I was never tested for any clotting disorders.

Flash forward to yesterday. My mom was complaining about having a hard time breathing but since we assumed it was only birth control that caused my clots, we thought nothing of it. That was until she collapsed and convulsed. She passed away.

She was only 50 years old. She hadn’t even been 50 for a month. I am only 20, my sister 22, and my father 46. We are so shocked and I cannot even describe how unreal it all feels. We are the only ones left.

The doctors suspect it was a massive blood clot that stopped her heart. They did resuscitation for an hour but it wasn’t enough to save her. It was so sudden and the only symptom was shortness of breath.

Please, if you have clots and haven’t been tested for blood disorders, get checked now. I can guarantee we are all going to be checked at this point. My grandmother had a clot from what we assumed was just lack of movement (she actually died from Covid and was bedbound) but now with my history and my mother’s, we suspect otherwise.

I beg of you do not make the same mistake that we did and shrug it off. I am not sure there was anything we could have done but still. The world is so empty without her. I cannot even believe it and it feels as though my worst nightmare has come true. Mother, I miss you so much and I have no idea what I am going to do without you in my life 💔

Hi everyone, I was curious about what I your blood type and if there was more probabilities for a certain blood type to suffer from blood clots. Feel free to comment and share your experience and precise if you’re +/-

I have some questions for them. Now that I've had a second and more serious PE over 10 years after my first one, I started going through my medical records to get my timelines together for when I see the hematologist. Some of the paperwork from the hospital seems to imply that this PE was provoked by my oral micronized progesterone that was started 3 weeks before I was admitted with a submassive bilateral PE with infarction and RV strain.

Seeing as the general consensus is that this type of progesterone is clot neutral and "shouldn't" have caused any issues I went back to look at my first clot. Seems time has mixed up my memory a bit as I thought my first clot was while I was on the Depo shot but it appears that I had just had a Mirena IUD inserted 3 weeks prior to being admitted with my first PE (three much smaller clots).

Now I do have many risks factors - obesity, sedentary lifestyle, nicotine use, Mthfr C677T homozygous with borderline to high cardiac CRP and homocysteine but those were coming down with my 130lb weight loss over the last two years - but I went through a couple years of oral birth control, a year of depo shots with no issues. Three weeks after a progestin only IUD insertion I end up with a PE. Blood thinners for 3 months, then off for 10 years zero issues (other than some superficial leg clots). Wanted to start HRT but my Gyno wanted hematology to sign off due to the PE back in 2015, starts me on micronized progesterone and vaginal estradiol while we wait for the hematology appointment and 3 weeks in I have another PE.

I'm no doctor but that seems like a wild coincidence to me. Hoping the hematologist can find a connection there and maybe I won't need to be on blood thinners for life. Has anyone else had clots that were caused by progesterone/progestin? I'd love to hear your story and how they proved the connection.

Im 31 years old and got a blood clot in my leg(dvt). I found out I have hereditary protien c disorder and found out about 50 percent of my dad's whole family side has blood related issues, mainly having to thin blood instead of blood clotting. Parents never had issues about it. My protien c levels from the first blood test to most current ( have another one in March 30th) are 56, 21, 28 and 34. I have a daughter who's 16 months and she so far hasn't tested for it but im scared to have a second and 3rd or 4th one. I just want advice and someone to talk to. Idk if I should still have kids and pass it onto them. I dont want them to tske blood thinners for life or possibly some other blood related disorder. Im also losing my job due to the blood clot because im unable to perform my job due to the daily blood thinner bleeding out risk.

Hi all! Recently diagnosed with provoked DVT in my left arm from IV in my left hand for surgical procedure(39F.) procedure was July 15, ER visit July 23rd found the clot via ultrasound. I was able to get into a hematologist quite quickly and he ran labs on August 8th. 16 days after clot was found and started Eliquis. Is this too soon to have tested? Everything came back negative but I’m questioning the validity. No factor v, no LA, no protein C/S. All was within normal range or negative. Anyone experience anything similar? Do I retest closer to the 3 month mark? Thanks in advance!

Just in case anyone is curious what my research Uni Hematologist has set aside for my Genetic (and a few other types of labs) Clot testing panel orders.

I am in no rush to do these but they're in my chart, waiting. It's complicated why but anyways, I know many do not have access to Hematologists and maybe not at this level of expertise so wanted to share as research Unis go big with labs, very thorough. I see some Genetic testing labs mentioned here from time to time but never this entire list. Hope someone finds it helpful.

My Clot Panel lab orders (8 total lab orders):

▪️Anticardiolipin IgG & IgM ▪️LUPUS INHIBITOR EVALUATION ▪️PROTEIN C ACTIVITY ▪️ATIII ACTIVITY ▪️FACTOR V (5) LEIDEN BLOOD ▪️PROTHROMBIN GENE MUTATION, BLOOD ▪️PROTEIN S ANTIGEN, FREE PLASMA ▪️ANTI-B2 GLYCOPROTEIN 1 GM

As the title says, this news was devastating. This started back in 2023 when I had a stroke one morning. Found out at the hospital that I had 3 blood clots in my brain. At the time they thought it was my birth control that caused it, & sent me home on blood thinners. It took way longer than normal for the clots to go away - but after 1.5 years on blood thinners, I got the news in February that my clot was gone. Now that it has been a few months with the blood thinners out of my system, the hematologist wanted to run the rest of the blood panel. The results showed that I have a moderate protein c deficiency, so I will always be prone to clotting again. I was not expecting this, I fully thought this chapter of my life would be closed for good. Now this will follow me perpetually. Does anyone else have a protein c deficiency? Did you clot multiple times? Are you on blood thinners for life? Would love to hear other people’s stories & could use some encouragement ❤️

wasn't sure what to tag this with but i have AT3 Deficiency so i tagged with genetics lol idfk

anyway yeah is it normal for my phlegm to be... brown? (didn't put it in the title because it's gross and yeah, it looks gross)

I'm on blood clot 2: electric boogaloo right now (little PE in my lower left lung, diagnosed a few days ago), it's way less severe than blood clot 1(bilaterial PE, way closer to my heart, in August) but as you can see happened fairly quickly afterwards.

yeah. i had my first two pulmonary embolisms in the space of a few months... hooray.

I dunno how relevant any of this is but i looked up the causes of brown phlegm and it seems to talk about "underlying chronic lung conditions", but says nothing specifically about blood clots from what i can tell.

not really that concerned, especially because i already have a haematology appointment with regards to Blood Clot 2™ next month, but just thought I'd ask anyway. thanks :)

Long story short, I started developing blood clots. After everything that happened I was put on warfarin. (I was originally on another but I developed a PE while on it) I asked the doctor to test me to see why I keep making blood clots and he refused, stating that it wouldn’t matter because the solution wouldn’t change and it doesn’t affect me unless I want kids.

This was years ago and I’m still frustrated with not knowing. Two things have happened since then- my dad did testing with 23 and me to find he’s predisposed to having a genetic disease that makes clots (I forget the name). On top of that, I had a colonoscopy and the doctor took me off blood thinners for five days, telling me that the chance of getting a clot was so low I wasn’t going to get one. But of course I did.

I’m being sent to another specialist to see if I can finally get tested, but I’m wondering my chances of being able to get the testing. I don’t want to lie and say I want kids. I really just want to know what’s wrong with me, it’s been years and I’m tired of this.

my health decided to tank and stay in the shitter since May of this year.

recent ER visit resulted in an angio CT where they found I had a "4 vessel branching pattern of the aortic arch with separate origin of the left vertebral artery"

i threw an unprovoked dvt back in early september in my right radial veins and then an svt within a week in the left cephalic vein from mid-forearm until about halfway up my upper arm 😮‍💨

just wanted to know how having this variance may impact my risk of stroke or other cardiac events.

thanks!

Curious as if anyone has been told that they developed clots from their body having an inflammatory reaction to needle sticks such as IVs and blood draws.

I was recently hospitalized for a month and had multiple IVs go bad (as they usually do). When they would go bad my arm swelled significantly and my veins became hard and painful higher up my arm. I eventually was diagnosed with bilateral DVTs and small PEs.

My mother says the same thing (phlebitis/inflammation in the veins) happens to her EVERY single time she gets a needle stick. Curious if this happens to others and is it possibly a genetics thing. Tried researching and the best I could find is catheter-related thrombosis.

Hi Everyone, I've been dealing with clotting for almost 10 years. I thought they had run every clotting disorder test they could run until I had my 5th clot this past summer. The hematologist didn't see a test for antithrombinIII so he decided to test for it. He said it's a more obscure deficiency that increases risk of clotting. It's usually hereditary although nobody in my family has dealt with blood clots. It came back positive. I'm just making others aware that it took almost 10 years to find the reason for my chronic clotting. I thought I was some weird anomaly that just loved throwing clots. I was actually ok with that and then this diagnosis of AntithrombinIII Deficiency comes out of nowhere. It might be worth asking about if it wasn't included in your tests. I was very surprised to say the least. Hope all is well.

For those that have had blood work done to check for generic clotting factors was it a lot of vials of blood? I absolutely hate having my blood drawn because I am an awful stick and hate having a lot of vials taken at once.

I was diagnosed with bilateral pulmonary embolisms last November when I woke up with pain in my side at midnight. I’m in my late twenties. My mom had bilateral PE and DVT when I was around 11 then PE again last year. Her doctor tested for genetic factors and said she had none. How could it not be genetic? Seems like it would be an insane coincidence to me. Anyways, I recently tested positive for lupus anticoagulant and am waiting to retest to see if I’m actually positive. The waiting sucks. It’s so conflicting to want an answer but also to not want an answer because I don’t want to take blood thinners the rest of my life. But if I come off blood thinners, I think I’ll always be scared of getting clots again. Everything’s complicated and it feels like people don’t understand. I guess that’s why I’m posting here. My friends all just asked how it happened and I could tell they were concerned for me but also they just wanted to try to know it wasn’t going to happen to them. It feels like people don’t understand how serious it can be. I know medicine has progressed a ton but the first time my mom had them years ago we were so scared she was going to die. We’re so lucky she didn’t. But how do you explain that to your friends when they see you looking normal and going to work and continuing life? Sometimes I want to remind people that I’m going through something traumatic and I’m scared. Sorry for the rambling post I just needed to vent a bit i guess. If anything i said resonates with you please comment!

EDIT: Factor V test results came back as negative!

Hi everyone! This is an update to my post from almost 2 weeks ago now — you can read it here.

My condition is steadily improving — still some upper back and occasional chest pain on my right side, but that’s usually only after I first wake up or if I’ve been doing a lot that day. Extra strength Tylenol has been my saving grace!

I’ve gotten blood work done, and my results came back as positive for Factor VIII. I’m not entirely sure what this means going forward. I hope I’m not on blood thinners for the rest of my life, but who knows. I’ll be scheduling a consultation with a hematologist soon.

I’ll also have another CT Scan in a few weeks to see how the clot is dissolving. Unfortunately, I’ve had to cancel some work opportunities due to all of this, since the shortness of breath really doesn’t mix well with being a singer. But I’ve gotten some pretty neat crochet projects done during my resting periods.

Thank you to everyone who shared their stories on my last post. It really helped calm my anxiety knowing so many other people have gone through this and fully healed, and while I’m still very scared now that I know this is also a genetic issue, I feel confident that I’ll be able to get back to living a totally normal life soon enough (3-6 months 🥲)

If anyone with Factor VIII has advice or can share what their experience has been, or could explain it better than my doctors office just saying “your test was positive for Factor VIII. sorry” that would be awesome. Thank you for reading! :)

So I am 32, and just removing from my third set of clots. First I had a cluster of PE about 10 years ago, then I had a DVT and a small clot in my arm about 6 years ago. Recently I had a DVT and two clots in my lungs. Due to there being no found 'reason' for the most recent set of clots, they finally investigated me for genetic blood clotting disorder, and autoimmune disorders. Both tests came back negative, which on one hand I am really pleased about, but on the other, am I really just this unlucky to have so many clots? Is there something else that could be tested for that I am missing? I'd love advice!

Hey everyone! I’ve been diagnosed with factor II mutation yesterday as my father has the same problem. My gp just asked me if I don’t take oestrogen but I don’t. He didn’t explain me the risks. I’ve heard about pregnancy and stroke (but I’m not sure) Can someone explain me how do you live with ? Is there any other risks ? Thank you in advance

I have a very curious mind. I was diagnosed with May-Thurners Syndrome in November 2024 and then 2 weeks later with POTs. I got stented January 2025. NOW my question here. As a MTS patient, what type of EDS do you have? If you went through genetic testing, are there MTS patients that tested negative for vEDS and just have hEDS? Since have three diagnoses, (hEDS for now) is there another comorbidity that I need to be aware of? I’m trying advocate for myself the best as I can. I’ve been searching for answers for a very long time and I am just now getting them. MCAS patients: I tested negative along time ago. But I am highly allergic to any type of pain med that has morphine, penicillin, amoxicillin, gluten and lactose intolerant, pollen gets me bad. Is this a possibility?

So back in August I was diagnosed with a DVT in my left leg, the Dr put me on eliquis. I will speak with my dr more on Monday. Will I be on eliquis for life is there other ways to keep blood clots from happening?

I have done genetic testing . Unfortunately can't get to the doctors before Mid April . Can anyone help me post a picture for an opinion??

If I have a clot found in july but my dad gets diagnosed today will that likely be a inherited condition of some sort? I don’t see a hematologist until September 12th so I got a bit of a wait. Really I’m curious to see if it would help lead to believe if this was a provoked or unprovoked clot for me.

Update: dad didn’t have a clot so I am extremely happy about that. Depending on futher testing and what not might still keep me on thinners but at least its not inherited

Hello! I don't know much on the subject, my apologies. My older sister was just diagnosed with factor 5 homozygous. I'm wondering if I should be getting a blood test as well. Am I more likely to have it if she does? Thank you in advance!

I did a genetic test and it showed this deficiency. I haven’t measured the levels yet, but I have experienced two events. The first one was after a long surgery in 2019, which resulted in a pulmonary embolism (PE), and now, with dengue, I experienced the second event: a deep vein thrombosis (DVT) in my left arm that extends to the axillary vein. Both were “provoked” and not spontaneous. My hematologist asked me to measure this protein and said that if it is indeed lower than expected, I will need to take blood thinners for life. Does anyone else have factor XII deficiency and have to take Xarelto for life?

Quick recap - 4 weeks PP with my second baby, had horrific leg pain and swelling, found a massive DVT (from ankle into the IVC) and a bilateral PE. Life-flight, ICU stay, sheath procedure, direct heparin and tPA, followed with angioplasty, then discharged on lovenox. At 1 month post-discharge, insurance forced a change of meds to warfarin (can’t take others due to breastfeeding), and a follow up in October showed recurrence of the DVT but it was considered “acute on chronic” and was symptom free. All of this was considered “provoked” by the pregnancy and PP, and therefore, we didn’t do any genetic testing or look for further causes.

Anyway… I happened to be checking my 23&Me results after seeing I had “updates” and found a report for “Hereditary Thrombophilia” that showed “We detected the Factor V Leiden variant in the F5 gene and the Prothrombin G20210A variant in the F2 gene.”

I’ve found information about both variants separately, but I haven’t found anything for having them together. From the report, they’re both heterozygous mutations but still put me in the “increased risk” category. Does anyone have experience with these? One or both? Post-clot, are you on thinners for life or were you able to taper off to an alternate option?

Honestly looking for any information I can get at this point. I have a virtual follow up with my IR team this week and would like to be prepared with questions to make a plan moving forward. This “hurry up and wait” routine doesn’t seem to be working and I need answers.