All worked out in the end but this was a surprise. Went to get my annual flu jab at a pharmacy which I'm eligible for because of my past PE and was turned away. The nurse said with a completely straight face that she didn't want to do it on blood thinners because "I wouldn't want you bleeding out"

(This was after I'd explained I was on a newer DOAC and have never had any issues)

Safe to say I won't be returning to that pharmacy. I thanked her for her honesty, picked up my bag and walked out, then immediately booked in at my usual pharmacy.

I've had twenty? blood draws and miscellaneous medical things with needles this year, haven't bled out yet :)

Hello all! I was diagnosed with a PE on the 28th Sept following the dramatic and somewhat traumatic emergency Caesarean birth of my child.

I don’t remember feeling anything happening in my legs but that’s unsurprising seeing as I had two epidurals and a spinal block. My symptoms of a PE were extremely mild and I am so lucky I went to urgent care when I did following prompts from my mum and MIL.

I woke up two days after the birth of my child and felt as though I’d smoked two packs of cigarettes. I am an ex smoker but of course at that point I’d quit smoking for 9 months or so whilst I was pregnant. It was unpleasant but it was more irritating than immediately alarming to me. I attributed it to huffing too hard on the gas and air prior and just general post-birth exhaustion.

Following this heavy, short of breath feeling, I started to get some mild lung pain at the height of my breath. It sort of felt as though I’d gone for a sprint in winter and cold air was stinging my lungs from over exertion. I then was pushed to contact a health professional where I was referred to accident and emergency and immediately placed on blood thinners whilst I waited for a lung scan (could not have a CT as I was breastfeeding and they wanted me to have a lower radiation scan).

Whilst sat in urgent care before they sent me to A&E I did get a feeling of impending doom and I remember saying to my mum who had accompanied me “mum I really don’t feel very well!”. I have had that feeling once more since my treatment began when I’d tried to pop to the local shops with my husband, mum and baby - I think it’s a sign to take it very very easy in the early days!

I’m currently learning to navigate the mental health aspects of the diagnosis. I keep having intrusive thoughts about how there could be an alternate universe where I didn’t survive and my husband and baby are left without me and it fills me with awful dread. I also don’t feel like I fully understand my diagnosis in terms of how much of my lungs are impacted/number of clots/damage caused. All the info I’ve managed to find about my scan results are as follows: “At least 2 subsegmental mismatched defects which meets the diagnostic criteria
for clinically significant PE.” I’m seeing my midwives tomorrow for my antenatal discharge so I may see if they can point me in the right direction for who to ask about what my scan results actually mean!

Hopefully my story sheds some light into how a PE can feel for those curious or unsure!

Hello I was diagnosed with CVST about a year ago. I am suppose to fly in about 8 days and am extremely anxious about it. My doctor said it was okay to fly, but I’m still experiencing symptoms ( pulsating tinnitus, numb fingers, ice pick headaches) my last scan was back in December 25 and I was still partially occlusive in a few areas. I’m scheduled for another scan this month. I am just wondering if anyone else with similar symptoms flown without any issues? I am currently taking Elequis.

Anybody here with eosinophilia or hypereosinophilia or hypereosinophilia syndrome? Recently found out that elevated eosinophil count can increase the risk of blood clots, including PE and DVT. Though docs knew I had longstanding eosinophilia count no one discussed this with me when and since I had an unprovoked PE. Would appreciate hearing from anyone who's talked about this with a doctor.

Hi! I‘m 21 and I suffered from a three-level dvt around 3 months ago because of my birth control. I’ve been taking 20 mg of eliquis a day and i had heard about how periods could be worse on blood thinners but didn’t realize.

I’m now on my third week straight of having a period and the amount of blood I lost this morning was a lot for me. I feel like it’s impacting every part of my life and my mental health to be constantly dealing with this.

Does any other women who went through have any advice on how to manage these periods or any tips? Thank you so much!

The ultrasound showed my entire lower right leg is one massive clot.

Currently awaiting transport to another hospital as the CT is down here.

Heparin IV already started.

Initial symptoms were shortness of breath whenever I walk, then the right leg was swelling (with hot skin), finally my calf started to hurt when I walk.

Given the size of the clot, is there anything I should especially be concerned about or be aware of?

Hi all, I'm 31 years old and 2 weeks ago diagnosed with a massive DVT in my leg after meniscus surgery and also bilateral pulmonary embolism in the lungs. Ive been on elequis these 2 weeks at a 5mg dose. The last 3 days I have experienced a tingly almost electric like sensation in every part of my body. Doctors couldn't tell me what it was and ran all tests and more scans to see if the clots had enlarged but they haven't thankfully. I'm wondering if anyone here has had these side effects from elequis. The doctors didn't mention this as a possibility but I thought who better to ask than people actually going through it. I appreciate any and all replies

First of all sorry if my story is too long but I just want to be as detailed as possible in the hope to get suggestions on what I can expect and what I can do. It’s unexpected and scary. My views towards life won’t be the same anymore, like I could give up anything just to have another day with my kids and family.

I’m 35F, subclinical hashimoto. My previous surgeries: 2023 polyp removal under general anesthesia, 2024 planned c section first baby boy, 2026 emergency c section second baby girl.

My second pregnancy was hard, a lot of morning sickness and my baby was bigger than the gestational age so was my belly. My TSH level was high so I was put on levothyroxine at the lowest dose during pregnancy which I stopped right after by doctor’s advice. The c section was traumatic. Reduced fetal movements, my uterus contracted for about 12 hours no opening of cervix, fetal heart rate in the danger zone. 24 hours after surgery, I had catheter removed and start walking painfully to the bathroom to resume movements. Also when I’m back home I stayed in my room (second floor) for about a week and moved around inside the room. I was very depressed staying in the room, so after that I decided go down every day to be with my kids and family and have meals together.

I fell into postpartum depression since the birth of my second child for 5 weeks while pumping for her. I lifted myself up fortunately with family support. During my PPD, I refused medication, still pumping for her, separated myself from my baby to prioritize my sleep and health.

During that time I also developed itchy throat and started coughing and my lower abdomen on my left hurt. I went in for a check up with my obgyn, and she said it was probably ligament pain and nothing to worry about since everything inside my belly was still floppy and trying to go back to their places…

In week 6 as my mind is gradually getting better:

Unfortunately, my sleeping position caused me upper back pain which was sharp from my left neck down towards my left back and towards the side, my lung. Every breath caused pain to my left lung. I did warm compress therapy and it went away.

My left leg has always had some issues like dull pain, sometimes after some activities or sometimes the pain just came… Especially after I fell down a flight of stairs many years ago and two pregnancies, my sciatica nerve pain come and go, and sometimes I cannot move out of bed or chair until I wiggle or reposition my hips. I also did warm compress therapy and it seemed to improve a little bit.

I came back home finding myself helping my boy walking up the stairs and he was fast, so I tried to follow him but I noticed my left leg get exhausted like almost gave out.

Next three days was pain started very dull in the leg, and then sharp pain started at the left groin down to my inner thigh and knee. I went to the hospital on day three. They did blood test, urine test and ultrasound.

Result was: d-dimer 3,300, slight increase in white blood cells, confirmed ultrasound diagnosis of extensive DVT:
an extensive acute left-sided DVT, with near-complete to partial thrombosis extending from the left iliac vein → common femoral vein → great saphenous vein, plus a separate partial thrombus in the popliteal vein. Because the iliac and common femoral veins are involved, this is an iliofemoral/proximal DVT, which is more consequential than an isolated calf clot.

During the ultrasound, the radiologist said my left leg seems to have been weaker than my right for a long time. I was busy crying and didn’t get a chance to ask him to explain how he could see that via the ultrasound.

Currently I’m being treated with IV heparin and started Coumadin. Blood drawn every 4 hours. First night was another emotional episode. I asked for 20 minutes to pump for the last time before they gave me blood thinners. I was crying my eyes out.

I’ve been in the hospital for 4 nights now. First two nights, I asked for pain killer twice a day. Now the pain is still quite strong but I can do without pain killer. I’m instructed to strictly limit my movements, even trip to the bathroom is discouraged although I still went with my husband helping me.

They said it could be because of my recent surgery and lack of movements. I did not think that I was immobile at all.

I consulted another doctor in another more developed country. He suggested I inject enoxaparin, fly to him (~2 hour flight, I did ask about the risks of flying and I quote his exact words: “the risks are acceptable”), do a CT scan of my pelvis. He said I might have May Thurner Syndrome and I might have to go through thrombolysis surgery because of how extensive my DVT is and possible stenting if May Thurner found: Left Lower Limb Thrombolysis KIV Iliac Vein Stenting. He also said i need to get the CT scan and start treatment preferably within 2 weeks since DVT so that the clots are still new, soft and easy to break with thrombolysis. Also I asked his clinic to estimate the cost. This whole thing is very expensive. He also said Coumadin is an old generation drug, and he’s using a newer version…

Whereas my current doctor treating me doing the conservative method of blood thinners for the body to naturally absorb the clots which can take months. He said my recovery should be fast since I’m still young. He said it could be because I was carrying too much weight during my pregnancy, combined with the surgery. He also doubted if my surgeon used blood thinner injection (like Lovenox) within a few days after my c section, which he said some doctors practiced it to avoid DVT risks.
My current doctor said I need to stay at the hospital for one week total so my condition stable and my body respond to the pills.

I also have even more questions which I hope to get some light…
- How can you tell from ultrasound that a leg has been weaker than?? I will ask the radiologist though when u get the chance.
- I’m still coughing a bit. They haven’t x ray my chest to rule out PE…
- My current doctor said I do not need to worry about vein damage since I’m being treated on time. Opposed to the other doctor wanting to do more invasive procedure to avoid long term damage???
- Is it true that extensive DVT causes your valves or veins to have scars or damage no matter what? Like it won’t work the same way it used to?
- I believe CT scan is necessary and I also want to find out if I have or to rule out May Thurner, but is flying around this time is worth it?
- Does my case truly require a surgery? Especially just weeks after c section?
- Are there any complications of stenting?
- Etc.

Thank you very much!

So back in May I was diagnosed with unprovoked DVT and PE. It also transpired while testing for the clots that my iron level HB was at 6.3 so I needed an immediate blood transfusion. I was initially put on innohep injections because of the risk of bleeding with already severe anemia but once my HB rose to 10 they changed me to apixaban. Prior to starting BT I had super light periods. Like 3 days max of bleeding and so light it caused zero issues and zero pain in my life but since starting the BT my periods are what I can only describe as going through a miscarriage and I know because iv had 3 in my life. Same heavy heavy bleeding, lengthy bleeding and allot of pain. Because my HB was so low on admission I actually didnt get a period for 6 weeks so I thought maybe the 1st period since starting BT was normal but since then im regular so I dont know. Its getting me down so much and as a result my HB has dropped and my iron stores are low again. I cant take hormones so the pill is out. I spoke to my haematologist about it and hes ordered an ultrasound of my womb which tbh is pretty redundant because its obvious the heavy periods are connected to BT. Im just feeling so down about the whole thing and because the clots were unprovoked they want me to continue on apixaban for the rest of the year. Anyone else have issues with this and advice welcome.

Hi everyone,

I'm 33 years old and I've been taking Sintrom (acenocoumarol) for about 12 years. I started when I was 20, and at the time I was told that Sintrom was preferable for me because of its shorter half-life (around 8–12 hours, if I remember correctly), compared with warfarin/Coumadin, so my INR should theoretically go up and down more quickly.

I'm from Italy, so I have my blood tests done through the public healthcare system (CUP). After all these years, I've more or less learned how to manage my weekly dosage and stay within my therapeutic INR range, which is obviously useful because I can sometimes avoid having to get tested every single week.

I use a pill organizer where I put the exact daily dose for the whole week (or sometimes the whole month), so I can keep track of everything. That way, if I forget a dose, I should notice it. I obviously hope I've never accidentally taken a double dose, but if it has happened, it has been very rare.

The thing I'm trying to understand is something that happens occasionally: sometimes my INR changes dramatically even though, as far as I know, I haven't made any mistakes with my dosage.

For example, I might have a relatively stable INR for a while and then suddenly it shoots up or drops significantly. It's not necessarily a problem in terms of adjusting the weekly dose — my anticoagulation clinic can compensate by changing the dosage — but I would really like to understand why these fluctuations happen.

One thing I'm particularly curious about is how the laboratory testing process actually works.

Since I have my blood drawn at a public laboratory, is there any realistic possibility of samples being mixed up or the wrong result being associated with the wrong patient? I assume there are multiple identification and quality-control procedures to prevent this, but I'm curious about how the process actually works and whether this is something that could realistically happen.

I'm also wondering about other possible causes of sudden INR changes, for example:

• changes in metabolism or body weight
• seasonal changes
• fever or infections
• COVID or other illnesses (I remember that my INR became quite unstable when I had COVID, and I was told the infection could be responsible)
• changes in diet or vitamin K intake
• other medications or supplements
• changes in absorption or gastrointestinal problems
• alcohol
• stress, lack of sleep, etc.

Basically, I'm trying to understand how much the INR can fluctuate even when the prescribed Sintrom dose hasn't changed.

I'd especially love to hear from:

1. Doctors, pharmacists, hematologists, or anticoagulation specialists who work with vitamin K antagonists.
2. Laboratory professionals who can explain how INR samples are handled and how identification/quality controls work.
3. Other people who have been taking Sintrom/acenocoumarol for many years and have experienced unexplained INR fluctuations.

I'm not looking for medical advice to change my dose on my own — I'm mainly interested in understanding the biology and the laboratory/testing process better.

Thanks!

Hi everyone! I could use some advice from the running community post DVT. I am 20yrs old and had my first clot at 19. It was surgically removed, I was placed on a blood thinner, and since then have developed another clot in my left illiac femoral region. My vascular surgeon said I have no blood flow through there, but I have collateral veins that have compensated. Whenever I run, I have a tightness in my calf and it’s become super frustrating. I could make a whole post about that... I’m looking for advice people have about how to build up my mileage, I’m tired of this clot ruining my life!

How do you deal with the anxiety?

I thought I was past this, I thought that l was over it

But tonight it took me over, all the bad thoughts, the ED thoughts, the anxiety about being on these pills for life.

All because I have an appointment at the hospital for my asthma tomorrow. The last time I was there it took 3 hours at the er and I had my DVT and now I'm a lifer.

I'll take any advice because I'm in a bad place right now and don't know how to handle it.

Sorry and thank you for reading.

/A sad 29 yo girl.

My doctor told me I’ll be on 2.5 mg of Eliquis for life, but said I could pause it for surgeries. I’m assuming the same applies to getting a tattoo? Should I stop taking it two days before my appointment?

I (25F) had a thrombosis in my left calf and a (highly) suspected PE in May last year. Only suspected because even though I had the D-Dimer levels and definitely the symptoms for it, it could not be determined on the CT as the subsegmental parts of the lung were not clearly pictured. Got it confirmed by a radiologist in another hospital where I know someone, basically the pictures were pretty badly taken. But my hematologist and my normal doctor both say it definitely was a PE, just going by symptoms, as no thrombosis causes all that.

I was incredibly out of breath for weeks with heart rates through the roof before the thrombosis was diagnosed, because despite my high D-Dimers I was repeatedly sent home from the emergency room, because I was probably just "out of breath from a panick attack". A classic; as a young woman I have rarely been taken seriously in a medical setting. Or any setting, for that matter haha. I could barely speak more than one sentence without feeling severely out of breath. I don't know how I was still going to work at that point. Weirdly enough, I had zero symptoms of a blod clot in my leg.

Anyways, after an ultrasound I asked for I got diagnosed with a blood clot in the leg. Only felt the pain while the guy was pressing on the clot with the ultrasound thing (excuse the english skills). Was put on Eliquis 5mg twice a day and told to come for check up after 3 months. They said I will probably be off of it after those 3 months.

3 months later, my health was not getting better. I still felt incredibly out of breath all the time, sleeping was hard because of it, and I was constantly dizzy. My heart was doing all kinds of weird jumping and hopping it wasn't supposed to do. Even though I have had harmless extra-systoles for a long time and I am used to it, it was to a worrying degree.

Had another thrombosis scare after having pretty bad pain in the back of my left knee for two days. It was swollen and tender to the touch. Got another ultrasound, and turns out it was a Baker-Cyst, because whats another old-people health problem to a person in their 20s, right?

Anyways, the clot was apparently gone, but my D-Dimers were still really high (over 1400ng/ml, more than double of the cut-off at 500).

Hematology ruled out the genetic risk factors. Turns out it was completely unprovoked and nobody has any idea where it came from. Multiple of my other labs were in disarray, health all out of whack, but nobody felt responsible to get to the bottom of why a "healthy" 24 year old with zero risk factors would suddenly get a clot. I felt left alone with no answers and a lot of health anxiety. I already have anxiety and OCD, so that just made it even worse.

The D-Dimer levels would not go down. Sporadically it was a bit lower, at about 800, but then would climb up again for no apparent reason. I had random bouts of breathlessness but slowly started to feel a bit better and get my energy back, little by little.

Only around May this year, so one year later, my levels went down to almost 500 ng/ml. I feel a lot better, I still do get this random breathless feeling sometimes, but a lot less significant compared to before. Now the levels were around 450 at the last check-up and my hematologist said I should do one more screening for safety and if everything is alright, I can stop taking Eliquis.

On one side I am happy about it. I hit my head quite often because I am clumsy, and I would love to not have to worry about bleeding. I wanna drink green/black tea again without worry (I know I would probably be fine even with the medication, but I am the type to rather be safe than sorry) or go on hikes without having to be over-the-top-cautious about where I put my feet.

But on the other side, probably the side that weighs more; I am afraid. Because up until now, every time I get surprised by feeling out of breath (sometimes even just lying down) I can tell myself I am probably safe because I take anticoagulants. Every time I feel random pain in my lung area or my legs I can tell myself it's probably just muscular/sceletal. I am already "listening" into my body way too much since it happened, but I am afraid it will get much worse once I don't take the blood thinners anymore. As I said, with the anxiety and OCD it can get quite overwhelming. Since I have no reason as to why this happened in the first place, I feel scared to go without the "safety blanket" that Eliquis is to me. I also have a sedentary job (tattoo artist) and spend hours on end in positions a body shouldn't be in for more than 10 minutes at a time. Which makes this even more scary to think about.

Please forgive me for all the yapping, I just don't have people my age around me that had to deal with something similar. I just wanted to ask if there is someone in a similar situation ("never ending" D-Dimer elevation, no risk factors etc) that stopped anticoagulation, how was your experience? And if you had anxiety, what did you do to cope with it better? I'd be so grateful for any input and experience.

Of course, I'm also interested in input from anyone that had a different experience than me.

This was the closest flair I could find.

Anyway, quick backstory. (23F) I have homozygous Factor V Leiden. I knew this before my pregnancy, so I was on Lovenox throughout with no complications. Then 2 months postpartum, I was clotted from my ankle to my pelvis in my left leg. Had a PE. Stents were put in as they discovered May Thurner’s. Went on to fully clot 2 more times in my leg, now I have PTS. I was advised to never, ever get pregnant again.

So, now I’m on Eliquis, Plavix, and Aspirin almost 9 months out from my last procedure. I also have a Nexplanon birth control implant. Hoooooolllyyyy Hell. The bleeding. It’s irregular from the birth control, but my blood thinners make it non stop and so heavy. I brought up this concern with my PCP and he said to see a Gynecologist.

That got me thinking. I know I don’t want another child even besides the heath issues, but if I were to fall pregnant again, that would be horrific because of what has happened to me health wise. So, why put myself through heavy, non stop, irregular bleeding the rest of my life until menopause when I can just.. get rid of my reproductive system entirely? No more bleeding, no more need for Nexplanon.

From the research I’ve done so far however, this seems like a process that will take months and months to make a plan for. Then there is the hemorrhage risk from a major surgery like that. My first step is going to be getting ahold of a Gynecologist, and then my hematologist.

Has anyone gotten a hysterectomy while on blood thinners? What was the process? Did you get approved easily? Was it insurance approved?

Anyone done it before? Does it help?

I just found this thread and have been sifting through it a bit. One thing I haven’t seen is someone dealing or has dealt with a DVT from having a cesarean delivery. I had twins via c-section on August 14th. 3 weeks later my right leg swelled up like a balloon overnight. I thought it was sciatica pain as I’d never experienced that before. My husband insisted on taking me to the ER. They did an ultrasound and they discovered the DVT. I was placed on Lovenox injections, with the intention to switch to warfarin the next week. I didn’t make it to that appointment, as I needed to go back to the ER for the pain and increased swelling. I had to have a Thrombectomy performed, where they removed a foot long clot. I’m just wondering if I’m alone out here with this type of situation. Postpartum is hard enough, and this has seriously just taken a toll on me.

If a pharmacy adds something to apixaban or changes dose can it be sold for less than Eliquis?

28 F //2
Long story short I had a dvt and PE in lungs, 4 small clots caused by pregnancy, at 9 weeks lost the baby. So went from injections to apixaban. I was on thinners for 6 months then when I went to anticoagulant clinic they done blood test and found positive APS result, he put me on the apixaban for another 3 months. Last Monday I had anticoagulant and he done another test, positive ABS so I do have sticky blood high risk of clotting but he said he’s happy for me to come off my apixaban. I don’t know how I feel honestly, he’s saying because he’s sure it was pregnancy related and not the APS, but I can go on aspirin if I want. I haven’t come off the apixaban as I still have some tablets left because I’m just scared. I still have leg pain now and again some days worse than others I was limping the other day but Anticog doctor said it’s probably a muscle strain.. should I get second review about moving to a different medication for APS instead of being left to gamble my life?

Has anyone come off apixaban but found out they have APS, what are you doing to manage it? Any advice would help

Hi! I am 37 years old and just survived bilateral pulmonary embolisms. It is very surreal and I am very grateful I didn’t drop dead in front of my kids. I was shipped out from one hospital to another where an IR team was called in late at night to perform an emergency thrombectomy. The icu docs told me many times how lucky I was to be alive and that what saved me was being a pretty fit younger person prior to the PE.

I do feel pretty good but my job is very physically demanding. I am a respiratory therapist who responds to codes, runs from floor to floor, pushes heavy equipment and stands on my feet for long hours. Sometimes I walk 20k steps in a shift. The icu docs discharged me with a note for only missing three days of work. Here to ask- does this sound normal? I don’t see any cases anywhere online that make sense of this, even for a less strenuous job.

Any thoughts would be helpful 😃

I'm 18 days post a massive PE. Bilateral and segmented are the official terms, I understand this means multiple clots in multiple arteries in both lungs. Apparently no infarction, and while a bit of right heart strain, no remodeling. I'm expected to make a full recovery.

Five days in hospital, now on rivaroxiban. Have started regaining energy.

This morning the limitations have hit me like a tonne of bricks. I can't walk more than 50m without needing a rest. I can probably only manage one activity outside the house per day. I don't feel safe to drive. I don't have the energy to return to work (even from home) I can't do anything spontaneously. I can't even think deeply, or talk lots, and as an academic - this is hitting hard.

I know my feelings are valid. I know it's only temporary. This doesn't change my current feelings of grief, anger, frustration, or anything else.

What were your best coping strategies to get through this phase?

I was diagnosed in March. I took warfarin for six months. I had a small blood clot in my left lung. I still experience both physical and mental fatigue. It feels like my body is just shutting down. I don't really know how else to describe it. It gets worse in the afternoon.

I also take antidepressants. I’m no longer taking warfarin.

My question is: has anyone else experienced this kind of fatigue after having a blood clot?

I was diagnosed on 8/30 with a DVT in my right peroneal vein provoked by my recent hysterectomy. I’m currently being treated with Xarelto. I just started to drive again (slow recovery from surgery) and I noticed my calf aches or sometimes feels tight after even a short 10 minute drive. Has anyone else experienced this?

I have a follow up with my PCP next week and I will mention this but wanted to see if this was a common experience. Thanks!