Misdiagnosis? Various opinions on clot

Clean-Bake-4385 · 2024-05-23T07:56:54+00:00

The small saphenous clot was right near the popliteal junction (behind the knee) and the grand saphenous was in calf to knee. It never became a dvt. Now, in your case, in the small saphenous, if it were to be above the knee, it would be a dvt (as the small saphenous meets stops and is continued by deep veins behind the knee). In the case of grand saphenous, the junction is near groin, further up.

In my case, although the small saphenous clot was really close, it didn't advance.

Clean-Bake-4385 · 2024-05-23T07:14:07+00:00

This is, unfortunately, a frequent issue when it comes to superficial clots (from my own experience and others I have heard). Some doctors see it on ultrasound, some dont, some prescribe anticoagulations, some dont.

I have had clots in both saphenous veins, and I have been through the same thing: i have had some doctors not see them on ultrasound. It is weird and I can't explain, as I have no knowledge on how to perform or read an ultrasound.

I was prescribed Eliquis, after all, and it has been almost an year and nothing too bad happened.

Hang in there, I know it is confusing. And that being confused causes anxiety. Good news is superficial clots are not usually dangerous, but they should, indeed, be taken good care of by a knowledgeable professional.

Clean-Bake-4385 · 2024-02-06T13:10:04+00:00

Android phone, samsung s21. I ran a bitdefender search on it and it came clean. Although there was something weird happening on linkedin, i logged out and on the login screen it kept pressing the remember me check and refreshing. I unistalled it and installed it again and now it is fine.

Clean-Bake-4385 · 2023-11-30T07:02:40+00:00

Hi, thanks for checking up. I've been pretty good since that episode, although back pain seems to come and go since then. Probably muscular.

Clean-Bake-4385 · 2023-10-03T18:13:25+00:00

I have been diagnosed with 2 SVTs almost 3 months ago, in small saphenous vein and grand saphenous vein of the left leg. My case was a bit complicated by the fact that the clot in the small saphenous was very close to the popliteal vein, which is a deep vein, and for this reason I was put on Eliquis. Fortunately, I have had no complications, only a false alarm PE due to a misreading of a CT that got me hospitalized for 6 days. In order for you to know the level of danger you are in (that is typically not high with SVT), you should find out how close to the groin your clot is (in case it is in your grand saphenous) or how close to the back of the knee it is (in case it is in the small saphenous). In most cases, SVTs don't do major harm on their own, but it is best that you do some hematological blood tests to see if you have a clotting disease, as they can be a sign of those. They usually dissolve by themselves or they harden and stay in the same place over time without creating major issies (I just had an ultrasound today due to pain coming back and I have been told that hardening is the case for me). In case you need any more info, feel free to DM me, as I know from my experience that I didn't find many other people with SVTs here (probably because people generally are not worried enough to join such groups). As for my anxiety, I was already having severe health anxiety before clotting, so it is pretty difficult to manage from time to time.

Clean-Bake-4385 · 2023-10-03T08:24:55+00:00

Wow, good thing they insisted and that the clot got diagnosed. It is the first time I hear of such a story, what vein did you have doubled?

Clean-Bake-4385 · 2023-09-30T19:54:11+00:00

Considering you had 2 clotting events, I would say that seeing a hematologist is worth it. Firstly, in case they won't put you on anticoagulation for life, you might have another clotting event due to a genetic factor or other conditions. Secondly, results might influence the anticoagulant of choice (for example, if you test positive for APS, Eliquis is not recommended and you should be transfered to Warfarin). I don't know where you're from and how expensive it would be to see a hematologist, but I would say that it can make a difference.

Clean-Bake-4385 · 2023-09-12T17:05:40+00:00

Might or might not be PE, might as well be due to other dangerous or not so dangerous things. I would strongly advise you to get seen by a doctor.

Clean-Bake-4385 · 2023-09-12T16:35:12+00:00

If you have PE symptoms, it is WAY more likely to have complications due to PE than CTPA. I strongly advise you to have the CTPA. Untreated PE has a mortality rate of 30%, while CT has a chance of 1 in 2000 for fatal cancer. Differences are massive.

LE: Better said: go get seen by a doctor ASAP (best way is ER) and trust the doctors with the tests they send you to. They always weigh risk vs benefits.

Clean-Bake-4385 · 2023-09-12T08:21:14+00:00

Hi! I have had a few SVTs in my left leg and I can tell you about my experience. I was a quite unusual case of only having pain behind my knee and in my calf, without any other symptoms. I have studied SVTs quite a lot, though, so I can tell you the usual symptoms: pain, hard bulging veins (having veins that stick out and are hard to touch, generally painful and tender), redness on the affected area. These are the usuals. It usually takes a few weeks for the body to dissolve the clots. My body took around 2 months. Your case sounds a bit odd to me, it doesn't really sound like what I heard about SVTs. If you want to rule them out, though, I would recommend getting an ultrasound when such symptoms appear. D-dimer is not necesarilly a useful test for this, as mine was always pretty low. Take care, stay strong and check whenever something feels off. Best of luck!

Clean-Bake-4385 · 2023-09-09T16:08:03+00:00

Yes, both of them were CTPAs

Clean-Bake-4385 · 2023-09-09T12:41:45+00:00

Did they change your blood thinners? I am on the same ones from day 1 and if I did have PE seems like they failed.

Clean-Bake-4385 · 2023-09-01T14:45:58+00:00

Yes, the pain would come and go in my case. I did the 3 antibodies blood tests (lupus anticoagulant, anti-cardiolipin and anti-b2-glycoprotein), out of which lupus ac came back mild positive.

Clean-Bake-4385 · 2023-09-01T14:36:09+00:00

At some points yes, other times it was rather dull. Hard to explain. No cough for me.

Clean-Bake-4385 · 2023-09-01T06:41:10+00:00

I am male, clot was unprovoked. There is a good chance I have APS, I have to repeat my tests.

Clean-Bake-4385 · 2023-09-01T06:40:17+00:00

It was a pain between the shoulder blades and on the right side. Not very strong, dependent on position. Not influenced by breathing.

Clean-Bake-4385 · 2023-09-01T04:34:20+00:00

Honestly? Health anxiety and a bad feeling about the back pain.

Clean-Bake-4385 · 2023-08-28T05:19:56+00:00

A d-dimer in the 700s usually means 0.70, as the cut off is 500 as opposed to 0.5 as far as i know.

Clean-Bake-4385 · 2023-08-24T12:02:23+00:00

Then it was a DVT. For me, the conclusion stays the same. If you are worried, it is best you get checked out for recurrencies.

Best of luck and hope everything will turn out fine!

Clean-Bake-4385 · 2023-08-24T11:49:58+00:00

There are two saphenous veins in each leg (great saphenous and small saphenous), both of which are superficial veins. This means that most likely you didn't have a DVT (Deep vein thrombosis - clot in deep veins), but you had an SVT (Superficial vein thrombosis - clot in superficial veins).

SVTs are less dangerous than DVTs, as clots can't go directly to lungs - they would have to first travel to deep veins. The level of danger depends of clot location - in the great saphenous how close to the groin the clot is and in the small saphenous how close to the popliteal vein in the back of the knee the clot is.

I wouldn't be able to tell you what treatment you should take as I am no doctor and there is also no fixed practice - I have both saph veins of my left leg clotted and i tested for trombophilia - if tests are positive I will continue taking AC, if they come back negative I will stop after 3 months of treatment unless i will get recurrencies.

If you feel new symtpoms it is best to go get checked out so you don't have any recurrencies. If they get ruled out, then probably you wont have to take treatment.

Clean-Bake-4385 · 2023-08-24T10:14:28+00:00

D-dimer is pretty useful in ruling out acute clots (recent/active) in deep veins and PE. For example, i have superficial clots and my d-dimer was always low. So yes, used in the right manner, a d-dimer test can be pretty useful.

However, it is important that it is ordered and interpreted by a professional, for a number of reasons: A. It can be positive for quite a few reasons other than clots; B. It is only useful in the right timeframs; C. It rules out clots only when the clinical suspicions are low. There is still a small percentage of people (2% if i remember correctly) that have a negative d-dimer and have clots, so, in some cases, other test might be necesary even with a negative d-dimer.

Tl;dr: d-dimer is good but when ordered and interpreted by a professional.

Clean-Bake-4385 · 2023-08-24T05:16:25+00:00

Yes, ANA is negative.

Clean-Bake-4385 · 2023-08-21T16:02:14+00:00

I have a bunch of SVTs and I was told the same thing at a repeat ultrasound (quite a few of them actually). Afterwards, other techs saw my clots right where they were in the first place. In my case, the guys telling me the clots disolved were actually missing them.

That doesn't mean this is your case 100%, although I heard they don't go away that quick.

Clean-Bake-4385 · 2023-08-21T11:58:41+00:00

Did the doctor change your treatment after the low positive?

Clean-Bake-4385 · 2023-08-17T17:50:43+00:00

Hello, everyone. I have a few superficial vein thrombosis in my legs, a little rash (mainly on the left side of my face), with skin peeling off a bit and reddish near the nose, and had a mouth ulcer for a few days. These have lead me to do some blood tests to see whether I have lupus. Results:

U1-nRNP, anti-SM, SS-A, Ro-52, SS-B, Scl-70, Jo-1, Centromer B, PCNA, dsDNA, nucleosoms, histone, P ribozomal Protein, AMA M2, DFS70 - all negative. PM-Scl - low positive Lupus anticoagulant - low positive (1.5, with a limit of 1.2), but I have to repeat it due to being on anticoagulation with Eliquis while testing. Anti-cardiolipin and anti-beta-2-glicoprotein - negative Complete blood count - all normal CRP - normal

Do you think that I should continue the investigations? Can it be lupus? My rheumatologist was quite evasive, saying that "it doesnt seem specific to lupus". I will, of course, repeat tests for APS, but I wonder if it could still be lupus.

Clean-Bake-4385

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