I was diagnosed yesterday with a thrombus in a vein somewhere below my collar bone which is causing my external jugular vein to distend. Apparently it’s in an extremely unusual high flow area of the vein for a clot to develop, and I initially was sent home with a clear CT until the A&E doctor decided to get a vascular specialist to review the CT and I was urgently called back the following day for an ultrasound.
They asked me which Covid vaccine I’d had, and although I did have the AZ, I’m slightly out of the parameters as it’s 36 days after my second jab and also no thrombocytopenia.
They took 7 vials of blood and are testing for APS among god knows what else because a couple of years ago I had a weak positive for anti-cardiolipin antibodies. At the time my rheumatologist concurred that I might have a mild connective tissue disorder (probably SLE) but laughed at me when I asked him if the weak positive might suggest I had APS or SLE and could it be the cause of the migraines that I’ve suffered since I was 10yrs old. He said it was only IgM and probably virally provoked.
They have put me on apixaban indefinitely and it seems to have caused joint pains that I haven’t had for quite some time - has anyone else experienced that with this drug?
So now it’s a waiting game to see what these blood tests come back with, whilst worrying if my clumsy self is going to end up with some serious bruising!
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Zara-LouiseD
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Are you in the UK? I dont want to worry you but DOAC's are not normally advised for people with APS and although you have not yet been diagnosed with it (awaiting test results) they really should er on the safe side perhaps and put you on either warfarin or LMWH.
Can you have a conversation with your specialist and ask to be urgently referred to a Heamatologist who should know more about what would be the best medication you should be on.
I did read that information on the leaflet they gave me but I don’t know who I’m supposed to speak to as it was an A&E doctor that I saw and I’m not confident my GP would have a clue? I think I’ve been referred on to a specialist for a follow up appointment in approx 6 weeks.
I was reading some stuff last night and was also concerned my intermittent fasting high fat low carb diet might have been a factor as I eat 3eggs a day, mature cheese and quite a bit of broccoli… could these foods really cause blood clots?!
Maybe they are going on an assumption it’s more likely to be the vaccine? It makes you wonder..
There is nothing stopping you from telephoning your A&E department and telling them that you are worried about the medication they have given you because it’s not advised for people with APS and you are being tested for that. Tell them that whilst there is any chance that’s what you might have you are not happy with taking it and want your medication reviewed. I will add however that if they put you on warfarin you will have to monitor the amount of Vitamin K such as broccoli that you eat! Please keep us updated with your progress.
Hi, I am hoping that you’ve made some progress on this last week? if you’re still concerned about who to speak to, did you follow my suggestion and speak with the haematology secretaries?
The advice here about speaking to A&E is a good idea - they can tell you who you were referred to for the 6 week follow up…
But to stay worried is unnecessary - there are lots of knowledgeable persons at your hospital who will be happy to assist you, I am most sure.
Thank you - Yes I was sent in for a head CT on Friday, which was thankfully clear and they decided to put me on Tinzaparin - at least until they have had me back in within 14 days to CT scan the rest of my body.
Although my APS tests are not back my clotting screen is normal, so I think they are now suspecting possible malignancy as a cause… I know that 2 weeks is their target to see possible cancer patients 😔 and that appears to be the second highest reason to have a clot in the rare position that mine is in!
I think they want to make sure there’s no more clots too even though I have no other swelling or pain etc indicative of a clot elsewhere.
I seem to be fine on the Tinzaparin so it’s just a waiting game for the scan and the rest of my results. I’m a lot less worried now my head is better and there doesn’t appear to be any clots in my head!
Oh flipping heck!!! Well, I’m glad that investigations are happening swiftly! If there is a malignancy then this will be identified quickly and a plan hatched for you ASAP!
Good news about no clots in your head!
But it must be in a spin right now just waiting for answers? I am sending calming vibes your way.
Please keep us posted on your results and progress x
Yes it’s certainly very odd to A) be walking around with a clot inside you and not knowing what caused it and B) being aware you might also have cancer….
But I’m strangely calm with a bit of potential anger thrown in as I have been to the GP on 2 or 3 occasions over the last 12 months with symptoms that would be synonymous with ovarian cancer (although I didn’t voice those concerns as doctors never like people googling stuff), and I was supposed to get referred for an ultrasound which never happened. It was right at the start of all the Covid chaos and the abdominal pains settled down so I didn’t chase it up… and then when I had some other symptoms which were thought possibly related with peri menopause, I mentioned the scan … and because they didn’t seem overly concerned and said they could refer me but I’d probably be unlikely to be seen any time soon…. I said I’d leave it then unless the pain came back!
So I’m not going to be very happy if that CT scan shows anything up in the vicinity of my left ovary!
I will certainly keep you all updated when I have more information - thanks for the calming vibes 🙏🏻 x
Hiya, glad you are being thoroughly tested, and if your GP/hospital again finds that you do have some positive results it is vital that you are referred to the correct medical consultant for guiding advice, not just for yourself but to enable your GP with your care. Many doctors are listed on here, plus members will give feedback depending on your location. ghicworld.org/ MaryF
Hi Zara-Louise, this most be terribly worrying for you. I think the advice given re: DOAC when you haven’t yet got a diagnosis is good advice - especially as your clot is in an odd place - not a place commonly associated with clots - it may be that a specialist medic would have avoided DOAC in your situation, but if you don’t ask the question, you simply won’t know.
If you call the hospital that treated you and ask to speak to the haematology secretaries, if you have your hospital number, they will know who will be seeing you and you can voice your concerns to them - it’s a bit backwards and a bit cheeky - but I am sure if they are concerned by your query they will act straight away… just ask the question - otherwise you’ll be worried for 6 weeks until you see the specialist anyway!! Please let us know how you get on.
I want to Welcome you to our small, but very friendly forum.
You do have a good reason to question APS, and an good reason to question the vaccine. I do think you might need an APS specialist to weigh in on this. With the history you have given, ( headaches plus one positive test ) I don’t feel comfortable letting this get lost on the shuffle.
Remember, with APS, a clot can occur anywhere.
Don’t worry that a DOAC will not be the right choice for APS. The most recent publication is that if you’ve only had one vein clot, no arterial- it is ok. ( that’s the very short, uncomplicated version.)
Make sure you do not get dehydrated right now. Help your body help itself to help your blood stay flowing well.
Has a jr strength aspirin or better perhaps maybe 1/2 of a jr strength aspirin been mentioned in addition to the DOAC ?
I am staying as hydrated as possible - I’m actually really thirsty at the moment, but having Sjogrens symptoms I try and keep the drinks flowing all day to stop my mouth feeling dry.
Thank you for your reassurance about the apixaban. I’ve been advised by my on call medic to keep an eye on my blood pressure due to the headache I’ve been experiencing, and to contact my GP tomorrow if it’s worse or no better.
Nobody has mentioned aspirin but I have a history of gastritis so I don’t think it would be a great idea!
Aspirin would not be a good idea- no. This is why we always say- check with your doctor first! ( and I forgot to say it… but I did have the intention.)
Clopidogrel is sometimes used in place of aspirin. If you are experiencing headaches , and the headaches are indeed due to “sludging” or micro-clotting blood , an antiplatlet can help relieve this.
Often times a neurologist is called on to make this assessment and decision.
I see Mary F included the website. Sjögren’s is often part of the APS triad.
Do you have livedo riticularus ? ( the lacy bluish pattern on your legs when you are cold?) some patients have it, some don’t. I’m just curious- as it might ( might only) tie to migraines. And that might ( might only) help you get to a neurologist who might ( might … lots of mights here) might consider adding a tad of clopidogrel. Might might might …
I call it my giraffe 🦒 patterned legs! ( my specialist in Colorado, USA, called it “giraffe pattern” and I think that’s about right.
I’m not really sure I get the lacy pattern, but my legs do go blue or grey if I’m just stood for a short while, never mind anything triggered by the Raynauds… but I will look at them more closely next time (I usually just describe them as looking like a cadavers legs 😂)
My rheumatologist (who had recently discharged me) thought I might have mild SLE but because I’ve always been sero negative, aside from that weak positive ACL antibody test, he would never diagnose anything aside from the psoriatic arthritis (which I think was reactive arthritis)
I had a positive schirmers test and have suffered with dry mouth and other areas… so he told me I had Sjogrens symptoms but that it wasn’t a condition just a set of symptoms that occurred together (then gave me a leaflet saying it was a condition!)
I also get Lupus type rashes in strong sunlight.
I’ve (thankfully) only had one miscarriage out of 3 pregnancies so that doesn’t fit their criteria…
I guess we will see what these blood tests come back with and take it from there - but I will have a look at my cold legs!
Don’t let him tell you that testing positive only on IgM doesn’t count. It does. I’ve been diagnosed for 20 years and been tested at least 20 times. I have only ever been positive on IgG twice and one of those was 20 years ago. I always test positive for IgM though. I was diagnosed and treated by the best, Prof Khamashta and transferred to NHS under care of Prof Hughes. There has never been any doubt about my diagnosis. X
Hi I was reading the post and noticed your comment about malignancy the highest reason for upper extremity DVTs. I think cancer treatment causes the clots not cancer itself. Usually people in treatment have a port or PICC line. That results in a clot sometimes or at least it occurs more often in this population.
The other causes of an UE DVT are overuse or repetitive movement of your arm. Also, a cervical rib or a rib anomaly of the 1st rib. With all of these situations you may develop scar tissue which causes compression within your thoracic outlet.
I’m surprised Thoracic Outlet Syndrome was not mentioned. I think it’s worth investigating. There is a specialist in the UK- Robert Patterson. There is a UK Facebook group for TOS. And, you may google venous or vascular thoracic outlet.
Sorry I didn’t see this but if your response first….
I think this clot isn’t exactly in the place you get the clots from POTS as the vascular ultrasound tech said he’s not seen one there before and the vascular consultant came in on my scan and said it was extremely unusual.
Apparently certain types of malignancy can cause clots, although you are very right that those lines are also a common cause.
They did ask me if I’ve ever had a line in my neck…. Which I haven’t!
They’ve taken half of my blood and are investigating so I guess it’s a waiting game now. I’m not going to worry too much until I know something and so far all I know is I have a rare clot and my clotting time is normal ….
I accidentally hit send. I have APS and TOS. I purposely try not to mention the TOS too often in this group. But since I only experience upper extremity clots with my APS, I thought saying hello and bring up TOS as it might be something for you to research and discuss with your doctors. And, to warn you that like APS it’s probably not discussed in medical school enough or not at all. It’s somewhat difficult to diagnosis but a TOS specialist will be able to diagnosis you. Usually they are vascular surgeons. In fact if they are not I’d be careful. I take Xarelto daily. It works well for me.
Do you get upper limb swelling and discolouration with TOS? I only ask as I’ve been looking at all possible causes that are not malignancy and when I read about TOS it seemed to suggest you needed to be moving your arm above your head, likely lifting weights repetitively and that it caused swelling etc to your arm/s?
I just have the swollen vein in my neck and haven’t been lifting my arms above shoulder height - although i was doing squats and raising my arms level with shoulder height.
Fingers crossed I get further input from the vascular specialist- that’s who reviewed my scan and noticed the clot where the radiologist had missed it!
I’m glad you are living well with your APS and POTS
Hi I do not have POTS. I have vascular and neurogenic TOS. Arm swelling and discoloration is common. Most people with TOS do not have DVTs or aneurysms but when they do it might be from the basilica vein to the jugular. The subclavian is the most common. Vein swelling is common and much larger swelling than I see in your photo. Aneurysm can be very large. You do not see the deep vein swelling but the arm can be several inches larger in diameter than the other arm.
Mine began with an untreated DVT. My care was poor. The clot which began in the basilica vein and ran through to the jugular was occluded and I did not respond to warfarin. I think with the blooding pumping I began to grow scar tissue which wrapped around other vascular structures, my brachial plexus and 1st rib.
This began in 2012. I was not tested for clotting issues until 2014. I was diagnosed with APS but told I would be fine and did not need anticoagulants. In 2015 I was diagnosed with venous TOS. In 2019 I was retested for APS due to forming new upper extremity clots and the hematologist put me on Xarelto since warfarin does not work for me. I’ll take it for life.
Most people I know with TOS did not do lots of over head activities nor have a clotting disorder.
90% of TOS patients never form a clot.
But the other 10% who make clots have upper extremity aneurysms or DVTs. Very few have clotting disorders.
I have probably continued to confuse you. I was misdiagnosed for 3 years. I must have seen 10 vascular surgeons that never mentioned TOS. It’s too bad because I now have nerve damage. I’ve had 4 TOS surgeries and 7 nerve decompression surgeries since 2015. I still have issues.
As long as your vascular surgeon is knowledgeable about TOS I’m sure he will do testing for it or testing to rule it out once you get your lab work back.
I pray it is something simple and easily treated. ❤️
Thank you and - Sorry I don’t know if that was my autocorrect or I just typed the wrong letters!
I’m sorry to hear you had such a traumatic experience of trying to get the right diagnosis and had such poor care!
I was doing a squat challenge for BHF and was raising my arms to shoulder height 100 times a day for about 4 or 5 days prior to the bulge occurring in my left external jugular.
I didn’t have any swelling or pain in my arms (in fact the only thing those squats did was nearly kill me with sheer exhaustion and give me an ectopic heartbeat whilst recovering - I didn’t even get pain in my glutes or legs!)
I haven’t had any pain associated with/in the vicinity of the clot and no swelling or redness.
I did have slight numbness and tingling and prickling in my pinky and ring fingers on my left hand the day after the bulge appeared - and I had the same again a day or so later in both hands after working at my desk for a few hours. Because I had some other symptoms associated with hemiplegic migraine I thought it might have been that but I did tell the doctors about it at the hospital.
They did tell me that some people get these clots from intense exercise but didn’t seem to think doing the squats would have caused it.
They also gave me a chest X-ray and didn’t mention any anatomical issues like an extra rib or dodgy clavicle?
You have certainly been through it with your surgeries and nerve damage is extremely frustrating- especially when you know that things could have played out a lot differently and prevented it.
I have had 2 lumbar spinal nerve decompression surgeries and the second one done on the NHS has resulted in permanent nerve damage causing peripheral neuropathy in my left leg and foot - because the NHS won’t operate until you are within minutes of ending up paralysed (there was no messing about when I had private health insurance through my previous job the first time round)
Thankfully I was able to gain full strength back in my foot and leg; and overcome foot drop, with some very hard work and determination with my physiotherapy - but I still have sensory deficit.
I’m keeping everything crossed it’s any alternative explanation than malignancy that’s caused this clot 🤞🏻☺️
Take care, and thank you for your explanation of TOS 🙏🏻
Your squat challenge definitely might have caused your clot. Any repetition with your arms even to shoulder height can cause a clot. In TOS it’s called Paget- Schroeder Syndrome. People get it doing push-ups and pull-ups repeatedly. Honestly with your diet and exercise routine plus the clot it sounds very much like this but your vascular surgeon will need to investigate further. Hopefully the Xarelto will help your body dissolve the clot without further intervention. And, while the external jugular is technically a superficial vein it’s seen as a deep vein due to its proximity to the central nervous system when being treated for a clot. One of my DVTs moved from the subclavian to the external jugular at one point. In my TOS Facebook group a young lady in Germany posted a photo of hers with a ping pong ball size swelling. Her vascular surgeon put her on Lovenox for the time being.
I’m sending you positive thoughts that this is an isolated event and all test come back normal!
I’ve just got access to my GP records… although somewhat restricted…
And it’s looking less like TOS as I also have a thrombosis in my inferior vena cava that they didn’t tell me about!
I’m still waiting for my scan - which is supposed to be done before the end of this week…….as apparently they are waiting for one more blood results before organising my scan - whether that is so they can decide which type of scan, I don’t know 🤷🏻♀️
You might have a clotting disorder of some type. Hopefully the lab work will be back soon! I’m sure this has caused a great deal of anxiety for you. It sounds like your doctors are taking everything very seriously. I hope it is not TOS. I only mentioned it because it is often over looked. When caught and treated early patients rarely have lingering symptoms.
My son has the prothrombin gene mutation. It’s genetic from his father’s family. He makes many DVTs and PEs. He has had IVC filters installed many times. If this is proposed to you please know it’s a safe procedure but the filter usually should be removed at some point, usually at around 12 months. It can move. Removing it is also a quick safe procedure. Fir unknown reasons doctors might forget you have one. I’m sure you will have an echocardiogram if you have not already. My son had a PFO. After he began to develop thrombosis he had it closed. You might mention it if your heart has not been imaged.
I’m sure you have been told to not take hormones of any kind by now. Birth Control pills and implants can cause thrombosis. Our niece had a stroke at 19, 2 weeks after she started taking birth control pills.
I’m sorry to hear that your son has problems with DVT’s and PE’s - that must be pretty scary!
I’ve read about those filters as they are the main cause of IVC DVT’s apparently!
I haven’t had any heart imaging specifically. I had a chest X-ray before the chest and neck CT but I’m not sure what that looked at?
I have always been sensitive to hormones- to the point of the plant oestrogens in soya causing me PMT type issues and weight gain.
I’ve been sterilised since I was 23 due to having 4 migraines a month on the pill (and not wanting more than 2 children!) and I avoid any hormone stuff where I can. I’ve even stopped taking Noristherone when I go on holiday as it causes me months of problems.
I have Gilbert’s syndrome and I believe that female hormones are assimilated by the enzyme that I’m deficient in, so I am probably susceptible to oestrogen dominance 🤷🏻♀️
Nobody has mentioned anything to me about hormones though…
Hi everyone - just a quick update….I have now had all of my blood tests back, and had full body scans/mammogram to rule out malignancy and everything has come back clear! So no clotting disorders and no known reason for the highly unusual thrombosis in my subclavian and internal jugular vein. I am only left now with the likelihood that it was caused by the Astra Zeneca vaccine, as they have admitted publicly that 66 out of 10 million people are getting venous thrombosis without thrombocytopenia as a result of this jab.
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