Living with Antiphospholipid Syndrome

Dear,

Regarding the lab results you shared, I have to point out that having both MPO and PR3 antibodies present at the same time—as seen in your case—is quite unusual. When results look like this, we always have to rule out an underlying infection or certain medications that might trigger such a pattern. To be honest, I’m pretty skeptical about this being ANCA vasculitis, though I can't rule it out entirely. As for antiphospholipid syndrome, my stance remains unchanged: seeing only positive antibodies isn't enough to confirm that diagnosis.

I see you've also had coagulation tests performed, specifically checking factors VII and X, along with Protein C and S levels. Those levels are low, which makes sense given that you're taking Warfarin, as indicated by your INR. Since Warfarin works by blocking the production of factors II, VII, IX, and X, it's expected that these levels would drop while on the medication. I’m not entirely sure why these specific tests were requested. It would make perfect sense if factors VII and IX, or Protein C and S, had been tested *before* starting Warfarin—that's how you determine if there's an existing risk for clots or subsequent embolisms. Your entire clinical picture seems centered around clotting and emboli, yet you haven't mentioned them, and thrombosis or embolism isn't listed in your diagnoses. That's a bit confusing.

Furthermore, some genetic testing was done, though not for antiphospholipid syndrome as I suspected, but for thrombophilia. You were identified as a heterozygote for PAI-1, meaning you have the 4G/5G genotype. The highest risk for thrombosis lies with those who have the 4G/4G genotype; for someone with your 4G/5G profile, that risk is significantly lower.

I also noticed testing for the I/D polymorphism in intron 16 of the ACE gene. In individuals with the homozygous D/D genotype, there is a link to higher blood pressure and thickened vessel walls. What's puzzling here is that the report lists "I/D homozygote," which is a contradiction in terms. A homozygote is either I/I or D/D; I/D is a heterozygote. This suggests either a clerical error or an incomplete result.

Additionally, there was testing for a Factor XI polymorphism. Being a C/C homozygote is linked to a higher risk of venous thromboembolism, but your results show you are a heterozygote, which would mean that specific risk doesn't apply.

All in all, as I've said before, this is a complicated situation. We have a mountain of data but no way to review the full medical history or complete physical exams. Without the full picture, we're just spinning our wheels, and we still don't have a definitive answer as to what is actually happening.

I truly want to thank you from the bottom of my heart for taking the time to respond.

Before this blood work was even drawn—as I mentioned earlier—I had actually stopped taking antibiotics because of a gynecological infection!
Right now, this is all I have to go on: just these specific details and these lab results. I’m scheduled to have my blood drawn again at the beginning of July (the exact tests I sent over to you). The results take about three weeks to come back. As soon as they hit my inbox, I'll be right back here to update you.
Honestly, I don't know. I listen, I follow orders, I do what I'm told... but I can't shake this feeling that even with the best intentions, doctors aren't actually heading in the right direction when it comes to my case. Or maybe I'm just a total outlier.

Your answers have been incredibly comforting!
I am open to every single piece of advice regarding next steps or further testing. Also, could you suggest where in the U.S. I might find a specialist who can process my specific situation? Better yet, if there's any way I could get evaluated near where you practice.

Thanks again. Truly.

Maria Fisher46 said:Look, lady,

Regarding those results you sent over—I have to point out that seeing both MPO and PR3 antibodies at the same time isn't exactly standard practice, even in your case. When you see a combo like that, you always have to rule out an infection or certain medications that could be triggering it. Honestly? I’m pretty skeptical about this being ANCA vasculitis, though I can’t completely dismiss it. As for the antiphospholipid syndrome, I’m sticking to my guns from before: just having positive antibodies isn't enough to clinch that diagnosis.

I see they ran coagulation tests too—checking factors VII and X, plus protein C and S levels. Those came back low, which makes sense if you're on Warfarin, given what your INR shows. Since everyone knows Warfarin works by blocking factors II, VII, IX, and X, it’s no shocker that those levels are down while you're taking it. I don't really get why they bothered testing them. It would make sense if they’d checked factors VII and IX or proteins C and S *before* you started Warfarin—you know, to actually figure out if there was a clotting risk or potential for an embolism. Everything in your file seems obsessed with clots and embolisms, yet you aren't mentioning them, and they aren't listed in your diagnoses. It’s confusing, to say the least.

Furthermore, they did some genetic testing, but not for antiphospholipid syndrome like I suspected; they were looking for thrombophilia. They found you're a heterozygote for PAI-1, meaning a 4G/5G genotype. Now, the real danger zone for clots is the 4G/4G genotype; since you're 4G/5G, your risk is significantly lower than those folks.

Then there's the ACE gene polymorphism (I/D in intron 16). People with the D/D homozygous genotype tend to deal with higher blood pressure and thicker vessel walls. Here’s where it gets weird: the report says "I/D homozygote," which is a total contradiction. You're either I/I or D/D for a homozygote; I/D is a heterozygote. So, either there's a typo here or the report is incomplete.

They also checked the Factor XI polymorphism. Being a C/C homozygote is linked to a higher risk of venous thromboembolism. But your results show you're a heterozygote, so that specific risk shouldn't apply to you.

Bottom line? Like I said before, this whole situation is incredibly messy. There's a mountain of data, but without seeing the full medical history and complete files, we're just spinning our wheels. We still don't have a straight answer on what's actually going on.

Hello again. I'm reaching out because I feel like I've hit a brick wall. My labs have been repeated and haven't changed much; only the B-complex seems to have made any difference. Back in July, during a talk with the neurologist at the hospital, they explained that regarding the dissections and my blood work, Warfarin was the best way to go. We're still dealing with suspicions about the same illnesses, and I'm supposed to redo the blood work at the start of the year.

On Tuesday, my vision got blurry and then the headache hit. I took a pill, slept it off, and felt fine. Then Wednesday rolls around and the exact same thing happens, so I headed to the hospital. The neurologist basically brushed me off because they claim they already know my history!
The CT scan was clear, the color Doppler was fine, and the MRI of my head and neck showed nothing new—no new dissections. My blood pressure was incredibly low, though. And my INR spiked. My iron is low, so I'm on treatment for that.
That blurry vision and those headaches? They were already hitting me while I was still stuck in the hospital.
I was basically tethered to a monitor 24/7 tracking my blood pressure, oxygen, and probably my heart rate too!

So, I told the neurologist—since I’ve been wandering around without a clear diagnosis for two years now—that maybe we should get a second opinion at a different clinic. Honestly? They took it personally. They got all huffy, claiming they weren't the same team from two years ago and that *they* are the experts now, and if necessary, they'd be the ones to call another clinic for advice. Yeah, right. Talk about ego.
Now, looking at my discharge papers:
Migraine headache
Carotid and vertebral dissections (2019)
High-risk coagulation on Warfarin
Anemia
Antiphospholipid Syndrome
Possible Tachycardia Vasculitis

No vasculitis!
And then they have the nerve to recommend the same rheumatologist I've already seen—the one who already told me I wasn't "their type" of patient.

I’ve been home since Friday. Honestly, I feel like I'm going to start bleeding from my ears and my nose!

I am definitely heading to Washington, D.C. this month for a private consultation.
Because this whole situation is becoming a complete joke.

Low blood pressure was really kicking my butt too, especially during that heatwave we had back in mid-September. I felt terrible—honestly, I could barely even make it out the door. If anyone happens to be looking for a solid neurologist, I’d highly recommend Dr. Canadian over at Saint Catherine’s. She actually sent me for an EEG and a brain MRI with contrast. I've dealt with this before, too; more than ten years ago, I used to feel just as awful, almost like I couldn't catch my breath whenever I was stuck in an enclosed space. That phase eventually passed, I guess. But the doctor mentioned it would be wise to get a full look at my circulation. I did ask about getting a CT scan, though I suspect some things might not even show up on one. Plus, I imagine just trying to get an appointment for a brain MRI isn't exactly easy. She gave me such a thorough neurological exam, though... she really is wonderful.

Donna Lopez79 said:Respectfully, I’m writing again because I feel like I’ve hit a wall. My lab results haven't changed much; the only thing that actually made an impact was the B complex. Back in July, during a talk with a neurologist at the hospital, they explained that given the dissections and my blood work, Warfarin is the best course of action. They still suspect some underlying issues, so I have to redo the blood work early next year.

On Tuesday, my vision went blurry, followed by a headache. I took a pill, slept it off, and felt fine. Then Wednesday rolled around, the symptoms returned, and I headed to the ER. The neurologist basically brushed me off since they already had access to my previous records.
The CT scan was clear, color Doppler was normal, and the MRI of my head and neck showed nothing new—no new dissections. However, my blood pressure was incredibly low, and my INR spiked. My iron is also low, so I’m on treatment for that.
That blurred vision and headache even happened while I was in the hospital.
I was hooked up to monitors for blood pressure, oxygen, and likely heart rate the whole time.

So, I told the neurologist that since I’ve been without a definitive diagnosis for two years, maybe it would be wise to get a second opinion at a different clinic. They took offense. They pointed out that the team from two years ago isn't the current team, and if necessary, they would contact another facility for a consultation. But honestly, it's like trying to teach an old dog new tricks.
Now, my discharge papers read:
Migraine headache
Carotid and vertebral dissections (2019)
High-risk coagulation on Warfarin
Anemia
Antiphospholipid Syndrome
Possible Tachycardia

No Vasculitis!
They’re recommending I see the same rheumatologist again, but that doctor already told me I wasn't their patient.

I’ve been home since Friday. I have this nagging feeling that I’m going to start bleeding from my ears and nose.

Later this month, I am definitely heading to Washington, D.C. for a private consultation.
Because what's happening here is becoming a bit of a joke.

Dear lady,

Based on what you've described and what is noted in your new discharge summary, your symptoms are being interpreted as migraine attacks. Those can be extremely severe and can certainly mimic the presentation of a stroke. I'm not sure if any other immunological tests were repeated besides the antiphospholipid antibodies. Based on the imaging, there are no signs of vasculitis, which is what I suspected previously; it's probably for the best that the diagnosis was ruled out, as it only adds confusion to the case.

I hope the Warfarin dosage stabilizes soon; patients often struggle until those expected therapeutic INR levels are reached.

In my view, your priority should be finding a solid neurologist. While a rheumatologist is important, they are secondary in this specific context. However, given the conflicting rheumatological diagnoses you've faced, seeing a specialist wouldn't be a bad idea.

Please keep us posted on what happens in Washington, D.C.!

Good luck!

Listen,
I had my appointments lined up in Washington, D.C. for November 29th and 30th.
I was honestly looking forward to them so much, but then everything went sideways. I had to cancel because my daughter tested positive for COVID just three days before our trip.
The whole family had to go into quarantine.
Now? Now it’ll be months before I can get back on the schedule with my specialists here.
To be honest, I’m losing the will to even bother with doctors locally. It’s just endless blood work. Part of me feels like just quitting the Warfarin altogether and letting nature take its course. I have this gut feeling these pills are doing more harm than good.

I'll check back in with you all once I finally get those exams done in Washington, D.C.

Donna Lopez79 said:Hello,
I had appointments scheduled in Washington, D.C. for November 29th and 30th.
I was looking forward to them immensely, but I eventually had to postpone everything because my daughter tested positive for COVID just three days before our trip.
The whole family had to go into quarantine.
Now it will be months before I can get another appointment with our specialists here.
At this point, I’ve lost the motivation to even see doctors locally; it feels like nothing more than constant blood draws. Part of me just wants to stop taking my Warfarin on my own and see what happens. I have this nagging feeling these pills are doing more harm than good.

I will check back in once I've completed my exams in Washington, D.C.

Ma'am,

do not stop taking your Warfarin without medical supervision!

Please update us when you can; I'll help however I'm able.

LP, I’m starting this thread just in case anyone else can chime in ��. Here’s my situation: after my first spontaneous miscarriage, my doctor sent me for a full battery of blood tests, which eventually led to a suspected diagnosis of Antiphospholipid Syndrome. My next three pregnancies were managed successfully with Clexane. My last check-up with the hematologist following that third birth was simply to say we would monitor things during the next pregnancy. That was eight years ago. Then, this year on April 22nd, I underwent surgery for a massive disc extrusion, only to suffer a DVT and a massive bilateral pulmonary embolism just a month later. I made it through, thank God, but now I am on Warfarin for life. The APS diagnosis is confirmed; my Cardiolipin - IgG antibodies and IgM are positive at around 50, and my beta2GPI is sitting at 300. During my pregnancies, my LAC levels used to fluctuate between positive and negative ��, though they couldn't test it this time because my anticoagulant doses were so high (following the embolism, I was on 100mg*2 subcutaneous Clexane). For the last two weeks, I’ve been experiencing this strange sensation of coldness in my right lower leg. It’s purely a sensation—the leg feels the exact same temperature as the left one to the touch, there's no swelling, and no pain. It’s just that specific feeling, the kind an old grandmother might describe as if her very bones had caught a chill... Has anyone else dealt with something like this? Thanks ����

Sandra Hughes72 said:LP, I’m reviving this thread in case anyone has insight ��. Here’s the situation: after one miscarriage, my doctor sent me for a full battery of tests to rule out Antiphospholipid Syndrome. My next three pregnancies, managed with Clexane, went smoothly. My last hematology checkup after the third birth noted we should monitor during the next pregnancy. That was eight years ago. This year, on April 22nd, I underwent surgery for massive disc extrusion. One month later, I developed a DVT and a massive bilateral pulmonary embolism. I pulled through, thank God, but now I'm on Warfarin for life. Confirmed APS. My Cardiolipin - IgG and IgM are positive at around 50, and my beta2gly is 300. During my pregnancies, LAC levels fluctuated between positive and negative ��. They couldn't test it recently due to high anticoagulant doses (I was on 100mg*2 s.c. Clexane because of the embolism). For the last two weeks, I've had this sensation of coldness in my right lower leg. It's just a feeling—the leg is the same temperature as the left, no swelling, no pain, nothing else. Just that sensation an old grandmother might describe as "chilled bones." Has anyone dealt with this? Thanks ����

Ma'am,

The symptoms you're describing are non-specific. In many cases, they point more toward a neurological issue—peripheral neuropathy, perhaps—rather than deep vein thrombosis stemming from Antiphospholipid Syndrome. Still, without a clinical exam and diagnostic testing, it's impossible to say for certain.

Many thanks for the quick response. I stumbled upon the term peripheral neuropathy recently and started thinking that might actually be what's going on here. I’ll definitely be checking in with my doctor about it. It’s been weighing on me because, just like last time, I haven't seen any of the classic red flags for DVT or an embolism. Back then, the pain was localized to just one specific spot and only triggered when my leg was in a certain position; I just had this nagging sensation like a calf cramp was perpetually about to strike but never quite did. There was no swelling, no discoloration, and the temperature felt perfectly normal compared to my other leg—nothing at all. As for the embolism concern, my blood pressure hit 150/90 ���� so, in my experience, you can't just assume 2+2 equals 4. Unfortunately, it always feels like you have to navigate through a fog of uncertainty before you finally land on a diagnosis.

I’ve never actually received a clear answer from my doctor regarding what follow-ups are necessary once an APL diagnosis is in place, or which specific tests should be scheduled.
Do people typically monitor things like clotting levels, LAC, or antibody counts on a regular basis?
My primary care physician mentioned that once I tested positive for cardiolipin - IgG antibodies, there wouldn't be a need to keep checking them—though I have continued to do so because my rheumatologist sent over some lab orders, yet even then, I haven't been told exactly what to test for or how often.
I could have posted this under the SLE thread given everything going on, but I stumbled upon this one instead, so here I am...

Respect,

Over the past year, I’ve started writing this post a few times, only to delete it because I honestly didn't know what to say.
Regarding my tests—nothing concrete has been done, and I haven't even bothered seeing a neurologist for follow-ups. Since I got my own INR blood monitoring kit, I stopped visiting my primary care doctor altogether. I just handle the measurements myself at home.
A few days ago, I finally decided to see a neurologist. He gave me a lab order and gave me a bit of a lecture for skipping my blood work all last year (as if anything would have changed by doing it sooner). When I mentioned the constant pressure in my head, he noted on the referral that he recommends switching from Warfarin to Pradaxa, but apparently, the hospital neurologist makes the final call once the labs come back.

I’ve also set an appointment with my family doctor for blood work, mostly because I had blood in my stool three separate times over the last six months. Plus, there's this constant itching.
The second we got back from our beach vacation, everyone in the house started itching like crazy. We went to an urgent care clinic, and they diagnosed it as just "itching." We’ve been slathering ourselves in Permetina, and I’ve been spending a fortune on various anti-itch creams at the pharmacy. Everyone else cleared up, but for me, the itching just keeps coming. Honestly, I’m starting to think it isn't just skin irritation, because I’m constantly applying cream and nothing works—I’ll go broke buying these stuff. That's why I'm getting the blood work done; I need to see if this itching is actually a reaction to my medication.
By pure chance, we met a doctor who looked over my results and told me straight up that they make no sense. He said he doesn't understand why I'm still on Warfarin and bluntly stated that the hospital I’m using isn't going to do anything for me. He told me to move on and suggested a specialist clinic in Heidelberg, claiming they have the doctors capable of handling a case as complicated as mine. He said my own doctor should have referred me out already, seeing as nothing is moving forward here.
I am so physically and mentally drained right now that I can't even put into words how I feel. And that’s not even counting the pain. (I won't even mention the head pressure, since I've only felt it five out of the last thirty days).
I'll be doing the blood work next month. I'll post the results here once they're ready. In a few days, I’m going to schedule an appointment in Heidelberg and hope the doctors there can actually untangle this mess. If I could just get off the Warfarin, I honestly feel like I’d be a different person.
Anyway, sorry for the rambling.

I'll check back in once the new results are in.

Best regards,

Brenda Alvarez24 said:I’ve never actually gotten a clear answer from my doctor regarding what kind of follow-ups are necessary once an APL diagnosis is made. What specific tests should be done?
Do we need periodic checks for clotting, LAC, antibodies, and so on?
My primary physician told me that once I tested positive for Cardiolipin - IgG antibodies, there was no point in repeating those tests. Still, I have, and even though my rheumatologist gave me a few questions to ask, I haven't received a straight answer on what to test for or how often.
I could have posted this under the SLE thread, but I stumbled upon this one instead...

There aren't any official guidelines regarding mandatory follow-up protocols after the initial diagnosis.

Donna Lopez79 said:Respectfully,

Over the last year, I’ve started writing posts several times only to delete them because I didn't know what to say.
I haven't had any specific testing done, and I haven't been seeing a neurologist for follow-ups either. I was given an INR monitor, so I stopped seeing my GP for those checks; I just manage it myself at home.
A few days ago, I finally decided to see the neurologist. He gave me a lab order and gave me a bit of a lecture for not getting bloodwork done over the past year (as if anything would have changed by now). Since I mentioned the constant pressure in my head, he noted on the referral that he recommends switching from Warfarin to Pradaxa, though the hospital neurologist will make the final call once the results are in.

Now I’ve set an appointment with my family doctor for bloodwork, since I’ve had blood in my stool three times in the last six months. On top of that, I’m dealing with constant itching.
When we got back from our vacation, everyone in the house started itching. We went to an urgent care clinic, and they diagnosed it as a skin irritation. We used Permetina and I kept buying various creams at the drugstore. Everything was covered up, but the itching persists. At this point, I’m starting to wonder if it isn't just skin-deep, because I’m spending a fortune on creams. I'm hoping the bloodwork reveals if this is a reaction to my medication.
By chance, we met a doctor who looked over my files and told me the data was inconsistent. He didn't understand why I was still on Warfarin and suggested that my current hospital wasn't doing enough for me. He recommended I seek treatment at a specialized clinic in Heidelberg, noting that the specialists there are better equipped to handle complex cases like mine. He mentioned that both my doctor and I probably should have sought a second opinion sooner, given the lack of progress here.
I am so physically and mentally exhausted that I can't even put into words how I feel—and that's not even counting the pain. (The head pressure hasn't even been constant; I've had five days out of the last thirty without it.)
I'll be getting bloodwork done next month, and I'll share the results when they come in. I’m also planning to schedule an appointment in Heidelberg in a few days, hoping their doctors can finally sort through this mess. Honestly, if I could just get off the Warfarin, I think I'd feel significantly better.
That was a lot of rambling, but there it is.

I'll update you all once the new results are in.

Best regards,

Hi there,

It’s possible the itching is linked to taking Warfarin, but other anticoagulants can cause this too. Even dabigatran (Pradaxa) might trigger itching—perhaps even more frequently than Warfarin does.

Based on everything you’ve shared so far, I have to agree with your doctor's confusion regarding why you're still on Warfarin.

Have you tried an antihistamine yet?

Let me know once you have new test results.

Respectfully,
I finally have a moment to actually respond.
When I went into the lab for bloodwork, there’s always this initial consultation with the doctor before they even touch you with a needle. Apparently, the doctor took it personally because my neurologist specifically wrote "Pradaxa" on my referral. So, instead of just doing the job, I had to sit through a twenty-minute lecture about how I can't take anything except Warfarin, otherwise, I'm a dead woman walking. He insisted Pradaxa is strictly for leg vein thrombosis. I just sat there exchanging looks with my daughter, and at one point, I seriously considered just getting up and walking out. My daughter was absolutely floored by his attitude, while I just felt like some sort of lab rat—actually, more like a science experiment gone wrong!

The results finally came back.
My Cardiolipin - IgG antibodies, which were elevated in the last two tests, are back to normal now. Because of that, they’re tossing out the Antiphospholipid Syndrome diagnosis entirely.

SmD-Ak 0-19.9 - 64.1
MPO-ANCA 0-6 - 15.9
PR3-ANCA 0-5 - 23
Rheumatology IgM 0-4.9 -34.9

The first time we checked Cenp-B-AK, it was 0-19.9 -89.9

Quick 70-130 -45
INR QUICK 0.85-1.3 -1.81
Hepatoquick 70-130 -29
INR Hepatoquick 0.85-1.3 -2.02
aPTT 25.1-36 -47.9

Everything else is within range; everything I mentioned above is either low or high.
The Lupus test is still negative.
The report suggests they could stop the Warfarin, but they recommend switching to Pradaxa or Eliquis. However, they claim they need to discuss it further because it qualifies as "Off-Label Use," as if the drugs aren't thoroughly researched or they don't have full authorization.

They’re recommending I see a rheumatologist again (the same one who already told me I didn't need one), claiming that based on these results, chronic rheumatism or some kind of autoimmune disease is still on the table.

Basically, they're bouncing me around like a ping-pong ball. From the hematologist to the rheumatologist, and back again.

There won't be any more updates until next year when I have to go back for this massive blood panel.

Best regards,

I suppose you just have to be humble. You have to accept that they see themselves as gods now, like some kind of elite upper class. It’s just so incredibly obvious. Honestly, I find it so hard to wrap my head around... maybe because I grew up in a family of doctors and professors who were always such genuinely modest, decent people.

I believe Medrol is used for antiphospholipid syndrome—at least, that’s what they prescribed to my mom. It ended up spiking her blood sugar, so they had to stop it. My dad and I were her primary caregivers, and I always felt comfortable speaking up for her when needed. She was on Warfarin from 1995 all the way until 2013, though I know a hematologist absolutely has to manage those Warfarin dosages. Later on, things got difficult; after she lost her leg, she became quite immobile, and we had to be extremely careful about which medications she could take. It made sense, really, to stop the Allopurinol and Ebrantil—she actually wasn't even allowed to touch the Ebrantil because of a pulmonary embolism back in 1999. She was using a wheelchair and we still made sure to get her out of the house, but she just wasn't walking anymore. Also, please, keep an eye out for arterial insufficiency, which can sometimes pop up after dealing with frequent venous thrombosis. We worked with a really wonderful gastroenterologist to help select her meds; I’ve taken my dad to see some great specialists in the past who truly wanted to help.

Donna Lopez79 said:Regards,
it finally took me long enough to reply.
When I went to the lab for bloodwork, there was supposed to be a consultation with the doctor before the draw. Apparently, the doctor took offense because my neurologist had written "Pradaxa" on the referral. So, I spent twenty minutes listening to a lecture on how I can't take anything except Warfarin, otherwise I’ll drop dead. He insisted Pradaxa is strictly for venous thrombosis in the legs. I just looked at my daughter, and at one point, I felt like getting up and walking out right then and there. My daughter was visibly shocked by his attitude, while I felt like some sort of lab rat—more like a lab rodent, actually.

The results came back.
My Cardiolipin - IgG antibodies, which were elevated in the last two tests, are now within the normal range. With that, they are ruling out an Antiphospholipid Syndrome diagnosis.

SmD-Ak 0-19.9 - 64.1
MPO-ANCA 0-6 - 15.9
PR3-ANCA 0-5 - 23
Rheumatology IgM 0-4.9 -34.9

First time Cenp-B-AK was drawn: 0-19.9 -89.9

Quick 70-130 -45
INR QUICK 0.85-1.3 -1.81
Hepatoquick 70-130 -29
INR Hepatoquick 0.85-1.3 -2.02
aPTT 25.1-36 -47.9

Everything else is within limits; I only listed what was low or high.
The Lupus test is still negative.
The report suggests Warfarin could be discontinued, but they recommend Pradaxa or Eliquis instead. However, they have to discuss it first because it qualifies as "Off-Label Use," as if the drugs aren't sufficiently researched or they lack full authorization.

They are recommending a visit to a rheumatologist (the one I already saw, who told me I didn't need one), suggesting that based on these results, chronic rheumatism or some type of autoimmune condition is possible.

Basically, I'm being bounced around like a ping-pong ball. From the hematologist to the rheumatologist, and back again.

No news until next year when I have to go in for this major blood panel again.

Best regards,

Hello,

Based on everything, as we have discussed several times now, you don't have antiphospholipid syndrome. Cardiolipin - IgG antibodies can be transiently elevated during an infection.

However, if I am reading the results you typed correctly, you have positive anti-Sm antibodies but negative ANA? That specific combination is very unusual since anti-Sm is part of the ANA profile. It makes me suspect something isn't quite right here.

Could you please transcribe or upload a photo of the full laboratory report? A lot of this doesn't add up...

Listen,

The image of my lab results won't upload. It would be much easier if I could just email them to you directly.
So, I’ll do my best to type everything out manually.

Autoimmune Diagnostics/Rheumatology:

Topo-I/Scl-70-AK(0-19.9) - 18.5

RNP-AK(0-19.9) - 3.8

SSA/Ro52-Ak(0-19.9) - <2.3

SSA/RO60-AK(0-19.9) - 5.2

SSB/La-AK(0-19.9) - 7.9

Cenp-B-AK(0-19.9) - 89.9

Jo-1-AK(0-19.9) - <2.2

DS-DNS-AK(0-35) - 28.4

SmD-AK(0-19.9) - 64.1

MPO-ANCA(0-6) - 15.9

PR3-ANCA(0-5) - 23

Rheumatoid Factor IgA(o-19) - 7.6

Rheumatoid Factor IgM(0-4.9) - 34.9

ß2-Glycoprotein-1-AK/Type IgG(0-20) - 5

ß2-Glycoprotein-1-Ak/Type IgM(0-20) - 2

Cardiolipin - IgG antibodies(0-20) - 16

Cardiolipin_Antikörper/typ IgM(0-20) - 3

Coagulation Profile I:

Quick(70-130) - 45

INR QUICK(0.85-1.3) - 1.81

Hepatoquick(70-130) - 29

aPTT(25.1-36.0) - 47.9

Fibrinogen(190-440) - 303

D-Dimers(0-0.5) - 0.13

Antithrombin-
Anti-Xa-Assay(80-120) - 99

von Willebrand factor Antigen(60-200) - 123

Lupus anticoagulant(0-1.2) - 1.03

Coagulation Profile II:

Factor VIII:C, endogenous(60-210) - 113

Factor X, endogenous(60-130) - 104

Clinical Chemistry:
Homocysteine(5-15) - 6.2

CRP(<5) - <0.6

Iron(70-130) - 121

Transferrin(200-360) - 288

Ferritin(15-150) - 17

Transferrin saturation(15-45) - 30

Autoimmune Diagnostics/Rheumatology:
Antinuclear Antibodies
-ANA-IFt(0-160) - negative

I'll post the rest in a follow-up, though I'm not sure if all of this actually matters.

Complete Blood Count:

Leukocytes (3.5-9.8) - 6.4

Erythrocytes (3.7-4.9) - 4.77

Hemoglobin (12-16) - 14.6

Hematocrit (0.36-0.48) - 0.44

MCV (80-96) - 92

MCH (28-33) - 30.6

MCHC (33-36) - 33.3

RDW-SD (37.8-47.7) - 45.1

Platelets (140-360) - 255

MPV (9.6-12) - 10.5

Relative Normoblasts (0-0) - 0.0

Absolute Normoblasts (0-0.11) - 0.00

Differential:

Neutrophils, relative (40-75) - 61.3

Neutrophils, absolute (1.6-7.1) - 3.94

Lymphocytes, relative (18-48) - 27.7

Lymphocytes, absolute (1-2.9) - 1.78

Monocytes, relative (4-11) - 8.4

Monocytes, absolute (0.2-0.6) - 0.54

Eosinophils, relative (0-4) - 1.7

Eosinophils, absolute (0.06-0.46) - 0.11

Basophils, relative (0-1.5) - 0.6

Basophils, absolute (0-0.08) - 0.04

Immature Granulocytes, relative (0-0.6) - 0.3

Immature Granulocytes, absolute (0-0.09) - 0.02

Hopefully this makes the bloodwork easier for you all to read.

Thanks.

mistyjackal842 said:You have to swallow your pride. Accept that they view themselves as Gods now—some kind of elite upper class. It’s just obvious. Honestly, I struggle with it because I come from a family of doctors and professors who were always incredibly humble and decent people.

Best regards,
I don't think they actually see themselves as Gods. It's more likely that I'm just a complicated case they can't crack, despite all their fancy tech. It's frustrating. Since 2019, all I get is blood work, ultrasounds, and MRIs. If they actually knew what to do, they could run these tests every single month, but if they're stuck, they should just tell me. They should tell me to move on and find someone else who can actually help. Someone out there can solve this. Right now, they've just put me on anticoagulants—not to protect me, but to cover their own backs.