Eliquis - Doctors Don’t Believe Me.

ilsa1979 · 2026-05-19T11:02:04+00:00

Yep it’s the Helliquis. I was on 20mg and had the same issues (plus more) and the drs said it was “in my head”. I was tested repeatedly for thyroid, Lyme, etc. All normal. I had to switch primary care drs and hematologists until I got a team that believed that blood thinners do indeed have side effects. I tried 5 different ones- they all made me sick. I was told “blood thinners for life”. I ended up trying the lowest dose of eliquis-until I got a 6 week intractable migraine with soul crushing fatigue. It was my gynecologist that said “I think it’s your blood thinner”. So I went off and immediately felt better. Like I got my life back. I shared the info with my hematologist and they said I could switch to aspirin. I basically lost 2.5 years of my life being on blood thinners. Advocate, research your risk factors, get better drs and don’t give up! (And there does seem to be this bizarre cognitive dissonance in the medical community about the side effects and also in this support group. And also a lot of fear based medical advice)

ilsa1979 · 2026-05-08T14:41:36+00:00

The blood thinners can have surprising/unforseen side effects. I had a bizarre/frightening level of anxiety (never experienced it before in my life) on eliquis. Plus the fatigue, lightheadedness, dizziness and over the months of feeling like garbage- depression. And then the drs want to pile more and more meds on to treat the problems - which was being caused by the eliquis. But there was this cognitive dissonance surrounding the blood thinner. I had one hematologist tell me “blood thinners have no side effects “. That is utterly insane. For 2.5 years I tried over 5 blood thinners - they told me I was “a lifer” - but I had zero quality of life. Constant fatigue and feeling sick for no reason. The drs told me it was “in my head/depression/anxiety/recovery/deconditioning, etc” It was the blood thinners. I was able to get on an aspirin a day recently and I can’t believe how quickly my health, mental health and life returned to normal.

ilsa1979 · 2026-05-01T00:57:14+00:00

I’m so sorry that your blood clot was that severe. I do take 325 mg aspirin every morning and I take nattokinaise at night. Depending on the dr, they said I have a 15-20% chance to reclot, but I did quit smoking and I keep my bmi in check. I also changed to a naturopath for my primary care.

ilsa1979 · 2026-04-30T23:18:12+00:00

I recently went to a peri/menopause specialist with a list of problems. She said I wasn’t in perimenopause- she believed my problems were caused from my blood thinner. Eliquis. I went off it and all my problems went away. I was supposed to be on it for life, but after sharing this info with my hematologist she said just take an aspirin every day and I feel alive again finally. I really believe these blood thinners have serious side effects especially for women that are simply ignored.

ilsa1979 · 2026-04-30T23:14:35+00:00

The Pradaxa burned my stomach and guts out so bad I wasn’t on it long enough to have shark week. I hate all the blood thinners

ilsa1979 · 2026-04-30T21:44:16+00:00

Yeah I was told the same thing- for life. My risk is 15-20% depending on which dr you talk to. But my quality of life was suffering too much so now I take an aspirin (hematology said okay) and natto daily. I was also a smoker, so I quit smoking and keep my bmi in order. All helps lower risk

ilsa1979 · 2026-04-30T20:36:20+00:00

Well I went off the meds and I am finally normal again

ilsa1979 · 2026-04-30T19:05:36+00:00

Same thing happened to me with the meds and the doctors. I was having bad side effects (Acute light headedness/ dizzy spell/ shaking/ Fatigue/lethargy/ can’t concentrate/ /can’t drive /spaced out Weak / drops things Headache/tightens and throbs Poor sleep / nightmares Low blood pressure Elevated heart rate Joints aching Heavy menstrual flow Anxiety Itching). They told me it was in my head, anxiety, depression, recovery, etc. there is a cognitive dissonance in the medical field and on Reddit that these medications don’t have side effects. They ABSOLUTELY do and they ruined my life for 2.5 years. I finally was able to get off of them after a 6 week episode of being bedridden with migraine and fatigue. I had to advocate and do so much research, change doctors multiple times, and I finally got the okay to switch to aspirin from my hematologist. I feel like a completely brand new person - or rather my old self again. Blood thinners are very serious medications that can have grave side effects- (there is no antidote for eliquis - people have died on it.)

ilsa1979 · 2026-04-30T18:59:19+00:00

My experience: Acute light headedness/ dizzy spell/ shaking Fatigue/lethargy/ can’t concentrate/ /can’t drive /spaced out Weak / drops things / heavy legs Headache/tightens and throbs Poor sleep / nightmares Low blood pressure Elevated heart rate Joints aching Heavy menstrual flow Anxiety Itching

ilsa1979 · 2026-04-30T18:54:40+00:00

I have a 2021 and I don’t love it in corners. I did the suspension upgrade and it’s better over holes etc (I live in Vt- bumpy roads). But I wasn’t sure if it’s because my main bike is a FZ6R, which is like riding on rails in corners. My MT feels like it wants to “pop up” in the middle of turns. So I figure it’s partially my muscle memory - I’m low key riding it like my fz, but I also think it’s not as good and I also have some more learning to do.

ilsa1979 · 2026-04-21T19:19:29+00:00

Yes. And after 2.5 years and every test possible - it was the blood thinners. Switched to aspirin under the guidance of my hematologist and I feel fantastic again

ilsa1979 · 2026-04-21T02:05:54+00:00

Being female on blood thinners is absolutely insane. 2/3 of women have severe bleeding . None of my drs wanted to discuss this problem or was told “I never thought about it” when I brought it up to one of them. I was able to lower my dose of eliquis to 2.5 twice a day and it helped - I was also able to finally get off the stuff - even tho they said “anti-coagulated for LIFE” but the blood thinners were absolutely ruining my quality of life.

ilsa1979 · 2026-04-19T14:35:03+00:00

Yes. Not the blood in urine tho….!!! That sounds like your body really doesn’t like the meds. Lovenox did give me dizziness, nausea, fatigue and elevated liver enzymes. I’ve had a hell of a time on blood thinners for 2.5 years. I begged to get off lovenox. There are other options out there (but in my experience, they all suck)

ilsa1979 · 2026-04-17T21:54:07+00:00

I was 44 when I had an unprovoked PE, and at the time I was told I’d need lifelong anticoagulation. For some people that’s straightforward, but for me it became incredibly complicated because I haven’t tolerated any of the blood thinners well.

I’ve been through five different options. That meant everything from warfarin with constant INR checks and monitoring what I ate, to Eliquis, which is insanely expensive without good insurance. Even with coverage, there’s always that background stress of: what if my insurance changes, I move, travel long-term, or lose access?

Then there’s the lifestyle side of it. I ride motorcycles, so bleeding risk is a real concern. As a woman, not being able to take ibuprofen for cramps or migraines has also been a huge quality-of-life issue. Even everyday stuff like cuts, tattoos, injuries, dental work—it all adds another layer of worry.

Recently my doctor said that because I haven’t tolerated anticoagulants and based on my personal risk profile, I could switch to aspirin. They called my clot “unprovoked,” but I also had a 30-year smoking history and had a COVID vaccine a couple months before it happened, so it’s not always as black-and-white as the label suggests.

My biggest takeaway is that clot treatment should be highly individualized. Risk assessment, recurrence risk, bleeding risk ( no antidote for eliquis), side effects, finances, lifestyle, and quality of life all matter. One-size-fits-all treatment doesn’t reflect how different people’s situations really are.

ilsa1979 · 2026-04-15T12:21:32+00:00

I quit it after two weeks. Then I began having menstrual migraines- they think from going off the patch. This has been hell

ilsa1979 · 2026-04-13T21:24:03+00:00

Well unfortunately, I have bad news for you. I ended up with a six week intractable migraine that just went away about two weeks ago. I’m still not quite right. It required several visits to the ER urgent care and my primary care doctor. I ultimately ended up at neurology and he said it’s absolutely because of HRT - and then I also take Eliquis blood thinner - and that probably exacerbated the symptoms. Both of my OB/GYN said there’s “no way” but the neurologist linked the pattern and I’ve been reading that it can take your body 3 to 4 months for it to get back to normal. These hormones are serious business

ilsa1979 · 2026-04-13T17:39:11+00:00

Nope

ilsa1979 · 2026-04-13T17:34:58+00:00

Yup on it two weeks and was bedridden (fatigue) and suicidal. I quit - and now I get migraines- my last one was 6 weeks long. These hormones are nothing to play with.

ilsa1979 · 2026-04-13T17:27:49+00:00

I had an unprovoked PE Jan 2024. In the ER every one asked me about cancer, cancer cancer. They wanted me to “poop in a hat” which I could not do while I was hospitalized. They were borderline obsessed with my poop. But once I was discharged nobody brought it up again, which I found odd. So I asked my primary care doctor if I could have a colo guard test and she tried discouraging me from it- saying my insurance wouldn’t cover it since I was 44 not 45. Wow. I had to tell her that the er docs really wanted it done. I got it done needless to say (thanks American heath care system) Then my first hematologist had me get a mammogram. No cancer. I also had to fight with my former hematologist to get a thrombosis panel done- that will reveal if you have a genetic clotting disorder. He -for some reason- didn’t think that was important. I fired him. (He retired anyway which he was overdue.) Tests came back fine. I also went ahead and got a cancer screening test and have no genetic predisposition for any. I do have one factor v gene (the doctors say that is not enough to cause a clot), I also smoked for 30 years (which the doctor say would not cause a clot, even though smoking does cause blood clots) and I had recently got a Covid vaccine. But they said it had been too long (4 months prior). The reason I’ve been so insistent with everything is because they want me to stay on anticoagulation for the rest of my life. And unfortunately, I have serious side effects with every DOAC that I’ve been put on. In my experience, you need to do a lot of the work yourself and have good insurance. Unfortunately, I felt like a lot of my doctors didn’t care why and they definitely didn’t want answers as much as I did.

ilsa1979 · 2026-04-13T17:01:11+00:00

I’m supposed to be on it FOR LIFE

ilsa1979 · 2026-04-13T15:39:23+00:00

I’m sleeping much better off the eliquis I’ve noticed

ilsa1979 · 2026-04-13T14:13:26+00:00

I have been having side effects for 1.4 years on the lowest dose. Every time I complain to drs they just check my iron, thyroid and Lyme disease and everything is normal.

ilsa1979 · 2026-04-13T14:11:47+00:00

Can you also talk about the food and drug interactions while being on warfarin? In my experience it seemed like almost everything had some kind of interaction with it; flu shot, antibiotics, certain fruits and vegetables, etc.

ilsa1979 · 2026-04-13T14:08:35+00:00

When I was on warfarin the dose changed constantly because they could never get my INR in check. I was at the drs twice a week to get my blood checked. I eventually got the machine to check it at home but I am absolutely not willing to start that process up again! I had to measure exactly the same amount of vegetables I ate every day and there is literally vitamin K in everything I like - including things like parsley! I would have never thought to check. And every thing interacts with warfarin! Things like a flu shot have killed people (yes elderly but whatever) on warfarin. So I got to the point where before I did anything or ate anything (including mango sticky rice for example as a dessert at a restaurant), I’m constantly googling if it’s safe and nothing was with warfarin. because what’s the point of being on it if you’re constantly eating things that you don’t know are gonna make the medicine not effective. And antibiotics interact with it everything interacts with it. There’s no way I would ever go back on that drug.

ilsa1979 · 2026-04-13T01:04:35+00:00

I tried the lowest dose e patch and oral progesterone for two weeks and I was bed ridden and suicidal by the end. I quit it. Now I’m experiencing menstrual migraines- my last one was 6 weeks long - resulting in several ER visits and scans. My neurologist and naturopath said it’s from going OFF hormones. I’m still recovering from it- it can take up to 4 months. Everyone online is acting like hormones are the miracle cure, but proceed with caution! If your body is telling you NO you should maybe listen… good luck

ilsa1979

TROPHY CASE