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Sticky Blood-Hughes Syndrome Support
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Is it possible to have APS or Lupus with negative blood tests?

I have had multiple DVTs, multiple Pulmonary Embolisms and multiple TIAs and must be on anticoagulation for life but my APS blood tests are negative. I had two positive Lupus anticoagulant tests last year but my most recent test was negative again. I have so many symptoms that point towards having APS or lupus, like chronic anaemia, chronic fatigue, clotting abnormalities joint/muscle pain, face rash, sunlight intolerance etc but I still get negative blood test results.

I have very recently been seen by the Thrombosis Team at St Thomas' Hospital and thought that I was finally going to get some support for all my clotting issues but because I didn't tick the necessary blood test result boxes for APS or Lupus, I was told to just keep taking my Apixaban and come back in three months time.

I'm about to have an operation at St Thomas' to remove my IVC Filter (clot catcher), as it has tilted and pierced through my Vena Cava vein. My vascular surgeon also believes that its covered with and embedded in scar tissue, making it very difficult to remove as it could tear and damage my vena cava. I thought that the Thrombosis Team at St Thomas' Hospital would support me through this operation, not simply tell me to come back in three months time and I feel so incredibly let down.

Clots on the lungs and brain can be life threatening and so surely I should be looked after and managed as closely as a person with APS?

I would really appreciate any comments or advice, has anyone else been in this position, all the symptoms of APS or Lupus but negative blood tests? (I should mention that I was diagnosed with Ehlers Danlos Syndrome type 3 seventeen years ago.)

Thanks so much in advance for any advice, Claire

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Yes, I was positive twice in a row and “ qualified” , or passed the tests. Then immediately clotted with a large DVT and commenced on warfarin.

I promoptly went whatvis known as, “ sero negative.”

Professor Hughes did not bat an eye. It’s quite normal. Sure enough, I’m positive again.

You likely need warfarin.

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KellyInTexas, I used to be on warfarin and had to maintain an INR of 3-4 because I had DVTs and PEs while taking warfarin, although I did always struggle to stay therapeutic. I've just been told to stop taking my Apixaban the day before the operation and that they will restart it afterwards as long as I don't have a bleed. This concerns me however because in the past I was always given clexane injections or put in a heparin drip for any operations or procedures where they had to puncture the skin.

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How did you get in touch with Professor Hughes? I have some real concerns about the way my PC is handling my disease. I'm still confused a bit about how to navigate this site. Thanks!

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Is this meant for me, patatie50?

Where are you, in the states? I assume yes as you use using the term PC, primary care.

I had a reference letter from my PC emailed to the secretary at London Lupus Centre, along with the pertinent records.

Professor Hughes is actually not taking new patients. ( hecwas nice enough to consult in on my case. )

Let me know if you need further instructions.

Kelly

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Hello Claire - welcome to our Forum. I'm so sorry that you are having these difficulties but it sounds like you are not being seen by the correct Doctors for your APS .... yes you do have it if you have had two positive blood tests of ANY of the three antibodies of which Lupus Anticoagulant is one. Antibodies do come and go they just reflect the level of inflammation. There have also now been recent studies warning of the dangers of taking people off of anticoagulation because antibodies have turned negative. The one good thing is you are on an oral anticoagulant, although not one that has been studied for APS, which again makes me wonder about the knowledge of the person treating you for your current condition.

You are correct you really should have a specialist coordinating with your Dr. In St Thomas. Prof Beverly Hunt and her team would be the right place or you should ask for an urgent referral to the Louise Coote Lupus Centre at Guys.

If you don't have any luck asking yourself and your GP won't help, the only thing you can do is write an urgent complaint to PALS at St Thomas's and say that you don't feel you are getting the proper treatment or care and you want to be seen by an APS specialist before you will consent to surgery so you are confident they are treating you correctly.

If you need papers on things like not stopping anticoagulants just ask, the RAPS trial results about the correct oral anticoagulant to use is under pinned posts on this page, but given your clotting situation, I personally cant understand why you aren't on warfarin, unless you have a high bleeding risk?

I know this is worrying but try and keep calm and take one step and day at a time. Many of us have had to fight for the correct treatment, to be believed and heard so we know what your going through. I'm sure it will all work out ok in the end.

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You have had a great answer here with the right amount of detail, and I will add that is is possible to be sero negative for Hughes Syndrome/APS and Lupus. I was for years, and then passed most tests. Please follow the advice given here by APsnotFab as it is what I would be saying myself. MaryF

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Hi ApsnotFab, thank you for responding. I thought I was going to see Professor Hunt but I didn't unfortunately, I saw a junior or perhaps a locum doctor. When I mentioned the two positive Lupus anticoagulant blood tests last year, he just said we'll it's negative now. When I told him that I believe I'm still producing clots because I feel them pass through my heart to my lungs, then my lungs hurt when I breathe and I start getting lots of fluid/mucus on them, he said "you must be having palpitations, I think we have a bit of an anxiety issue going on here".

My Rheumatologist said he didnt think I should be on apixaban if I used to need an INR of 3-4 and I mentioned this to the thrombosis team doctor but he just kept saying my APS result was negative.

I dont have a bleeding risk.

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As I thought then! Unfortunately I think you are going to have to get clued up and then dig your heels in as what that person said was unhelpful especially the remark about anxiety. Your the second one today I've heard about who has got brushed off with derogatory remarks which are frankly not good enough. That in itself is grounds for a complaint as they are making generalities about you with no clinical proof!

If your GP is supportive use them. Go to see them and tell them what's happened and state you either want to be referred elsewhere or can they call Prof Hunts secretary and ask for another appointment with her. If you would rather not go back then Guys is the next obvious choice as they all come under the same roof so to speak.

If that's not going to work you will have to complain to PALS and hope they will sort out another appointment in order to rectify the matter. Please let me know how things are going.

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Luckily, you have APSnot fab here to the rescue. I was worried at the late hour in the U.K. no one with her level of knowledge would be awake- and you are indeed in true urgency.

You are now in safe hands with her. My eyes by this time of night here struggle. I don’t know what you call apixiban. So sorry- but all the best to you and I’m so glad you have found this forum. Please stay with us.

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Hi Kelly! Apixiban - Eliquis. One of the new oral anticoags. Now I am going to sleep! X

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I must go to sleep too but thank you both so much for your advice and support! I hope to speak with my cardiac doctor tomorrow who is wonderful and will tell him that I'm not happy to have the operation, until I'm certain that the Thrombosis Team have considered my full medical history, instead of relying on the results of one set of blood tests. I'm also going to do a lot more googling about this seronegative APL. Thanks so much again😀 , sleep well😴

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Hi and welcome.

The advice from ApsNoFab is spot on, great that you are speaking to your cardiac surgeon, is he also at St Thomas? You will definetly need a bridging plan for surgery, so you are right to ask these questions.

I am a patient of Prof Hunt (15 years now). If I can give you direct telephone numbers or more detail within the department then please pm me.

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Hi HollyHeski,

thank you for your offer for the direct telephone numbers, if I get no joy with my cardiac doctor when we speak this afternoon I will definitely PM you. I have had terrible trouble trying to get through to anything other than a message, that tells you that you can't even leave a message!

I have spoken to Johanna a clinician at St Thomas Thrombosis Team multiple times and she was fantastic. She seemed to think that I was going to be one of those patients who test negative for APS but have all the symptoms and so gets treatment for having APS, unfortunately that didn't happen.

I also spoke with another clinician Carl who was also lovely but I still only had a telephone follow up appointment with the junior doctor, who was so flippant and dismissive. I've remembered his name, it was Dr Double, have you heard of him?

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Havnt heard of either, just know the registras & consultants.

Speak soon xx

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Hi leakeadea,

It is morning in Sweden now.

I agree with Kelly in Texas that you are lucky that APsnotFab could "talk" to you before she got to sleep last night! Hope you will follow her advice.

I have our illness with triple antibodies and have had very high bloodpressure together with chest- and heart-pain and now have Pulmonary Hypertension. I also think that you should have a "stronger" anticoagulation like Warfarin with an INR of 3.5 - 4.0. If you have high bloodpressure try to get that down.

Best wishes from Kerstin in Stockholm

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Hi Claire

Welcome to the forum. I’m sorry you’re going through this as so many of us do.

You are not sero negative - you have passed the tests twice so you do have the condition. Any APS specialist will know that. A lot of us go from positive to negative but it doesn’t mean we’re suddenly cured.

You absolutely must fight this one. Here on the forum in the pinned posts there is a list of all the APS specialists we’ve found so far. Prof Hunt is on the list and as you’re under her team then I would do exactly what APSnotFab advised and call her secretary and get an urgent appointment direct with her. If that doesn’t work then try another specialist.

I worry you’re on apixiban after requiring an INR 3-4. I’m on warfarin needing INR of 4 due to arterial problems. I know there’s not been any study of your drug with APS patients yet so it does seem a gamble from my point if view.

Good luck and let us know how you get on.

Kelly x

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Well said!

Kerstin

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Thank you so much for all your responses, it's so lovely to feel supported rather than belittled and patronised, as so many doctors have left me feeling during the past couple of years.

I have checked my blood tests from Aug and Sept last year and my APTT ratio was only slightly raised at 1.26 and 1.22 but in Sept my Haematocrit was also low at 0.338 which I've read is connected somehow to the APTT. Maybe because they were only slightly raised they don't consider the results to be significant enough?

My latest blood tests were taken while still taking Apixaban which was very surprising. The junior doctor I saw said I would have to stop taking Apixaban and go onto clexane injections, then come back to have blood taken for the APS and Lupus tests. After going to speak with Professor Hunt he came back and said that there's a new test they can do while a patient is still taking anticoagulants. Has anyone heard of this?

Maybe I don't have APS but I must have some sort of clotting abnormality or I wouldn't have had multiple DVTs, PEs or TIAs. I noticed on some other posts a Rheumatologist being mentioned as diagnosing lupus and APS based on a patients symptoms and clinical presentation, even though the patients failed the Lupus and APS blood tests. Perhaps I should ask for a referral to see this Rheumatologist??

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Aloha from Hawaii. ..

Sorry to hear of your struggle. ..

Remember, antibodies positive once, always potential for them again.

Prevention mode is the warfarin therapy with INR 3-4.

You haven't got there yet, because of your clots.

I hope you get right doctor.

Aloha,

Kerstin from Hawaii

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The analogy which comes to mind regarding Fluctuating antibody tests--

Remember, the immune system is our body's defense force.

Once a year, on May Day, the Russians parade all their high class military stuff through Moscow. But you don't see the tanks and such on other days. So would that mean that The Russian army disbands every May 2?

( And I have never had a PE- but I can feel when my a fib acts up.)

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I am very sorry to read your account and wish I could say this is unusual for patients to be dismissed, especially women, with the "all in the mind" remark.

Just for completeness: the lupus anticoagulant test has a confusing title. It confuses doctors and patients alike. It is not a test for lupus or systemic lupus erythematosus (SLE), but a complicated clotting test for people suspected with APS/Hughes.

There is a percentage of people with SLE, like me, who also have APS/Hughes.

Please listen to APsnotFab because you need to see the consultant. In future, when you have an appointment at St Thomas, you request to speak with the Consultant. You will have to see the junior doctor, usually a Registrar, although it could be a SHO who is doing a rotation, but insist you speak with the consultant. No matter what is said to deter you, "Keep Calm & Carry On" (WW2 motto in UK) and insist!

If necessary, you may have to make a complaint, but you can also write directly to the consultant, Prof. Hunt. I once had to make a complaint at Moorfields Eye Hospital for the rudeness and dismissal by a junior doctor, who was irritated I had disturbed him and laughed when he told me I had the "healthiest eye" he had seen, even though I was in pain. He missed a nodule on my cornea which Dr Hughes could also see with the naked eye. I received a reply from the Consultant, who apologised.

You deserve to be treated respectfully.

With good wishes,

Ros

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Ros, Thank you so much for your advice and support. My cardiac doctor from St Thomas' hospital didn't call me today as promise, I kept both phones at my side all day in case. He is lovely and I'm certain he would have been rushed off his feet in clinic today and that's why he couldn't call.

The first chest clinic doctor I saw at Guys Hospital was rude and condescending. He left my appointment three times to take phone calls and then after his third call had the cheek to walk back uni the room and say that we needed to wrap this appointment up. It always seems to be the younger less experienced doctors who think they know everything and have dreadful bedside manners. 😕

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Just a quick update...

I took everyone's advice and stood up for myself. I spoke with both my vascular surgeons secretary and my cardiac doctor at St Thomas' about how I was dismissed by the thrombosis doctor, based solely on my recent blood tests. I told them that I couldnt go ahead with my operation, until I was certain that my anticoagulation was being properly managed.

My cardiac doctor was great as always and is going to speak to Dr Karen Breen (one of the top Haematologists at St Thomas' Hospital I believe), in a meeting he has with her this week.

I scanned copies of my head MRI results from 2007 when I had my first TIAs and emailed them to my cardiac doctor, (at least I was told that I'd had TIAs however the results of my MRI were much more complex, mentioning high signal foci in multiple lobes and possible vasculitis?).

I also sent him a scan of a Haematology letter clearly showing that when I was on warfarin, I had to maintain an INR of 3-4 because I had clotted when having an INR of 2-3.

I included a brief history of my clotting issues and neurological symptoms etc and said that I wasnt happy to proceed with the operation to have my IVC Filter removed, until I was absolutely certain that I'm properly anticoagulated.

I'm hoping that once he has shown everything to Dr Breen, that they might do some further investigations into why my blood clots and what exactly happened inside my brain back in 2007.

Thanks again to everyone who responded! Claire😀

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Great news and well done -Dr Karen Breen is very good, always been understanding and knowledgeable with me.

Keep us in the loop to how you get on.

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Holly, I have a question to Claire just under this- I think you had a filter . Maybe you can answer.

Thank you!

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Thank you for your update, Claire! I’ve been wondering how things went for you and hoping they moved in the right direction. I think dr Breen sounds like a perfect fit for you.

With the proper treatment, I’m assuming you will not need this filter. Thexwarfarin shold prevent its need, and I should assume a filter is just a place for a clot to form? Holly ( one of the administrators) might be the one to shed light on this?

Holly? Is this one for you? If you are reading?

I ask because many nurses have asked me this very question, and I always find it a good one, but never have an answer.

Claire, can you find out for us? Let us know from Dr Breen if a filter is useful in APS ( I’m certain not or we would be recommendedvto have them and we never are) and why not ( I’m reasonably sure the answer will be because plateletscwill aggregate around the filter causing a clot) but it would be nice to have an answer to the question since I’ve been asked my many nurses and techs. ( not doctors.)

If you have time, or it just happens to come up in conversation since you are discussing the filter. I know time is limited.

Kelly

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Good question, dont know answer Im afraid, presume with us would aggrevate our APS and cause more clotting.

I have been told we are more prone to clotting from stents, during surgery and post op, as our blood will attack by clotting any alien bodies.

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Hi Kelly,

yes Holly is right it would definitely aggravate the APS.

I've been told that it never should have been put in me, well not a permanent one anyway. They weren't really aware of the complications when they put mine in back in 2005. I'd just had my second bout of PEs having been taken off warfarin six months after my first PEs (first that I know of that is, I've had breathlessness and symptoms of PEs in the past but didn't know that's what it could be) and I had DVTs in both groin's, so it was put in because they said it was an emergency situation.

IVC Filters should be regularly checked but mine never has been and I've been suffering with acute pain above and below the filter since 2015 but the doctors never thought to consider my filter as the cause.

IVC Filters should catch life threatening size clots but not small to medium sized ones. The trouble is that they put your chance of having DVTs up by 40% and that's on top of my having some type of sticky blood issues. They also come with multiple complications like filter fracture, migration, tilting and also piercing through the vein. and

Mine has tilted and pierced through my IVC vein and the lower metal struts are now sitting against my small bowel. On top of that it is covered in scar tissue, so instead of being a filter, its become like a valve which is preventing the returning blood from getting back to my heart. This is causing me to have excessively high heart rates and acute breathlessness on any minor exertion. My heart rate can do 170bpm just trying to dress myself.

I now also have problems with the blood flow in my legs and abdomen due to the amount of dvts Ive been producing and have just been told that I have incompetent veins, with back flow of the blood because the valves no longer work, lovely!

Bottom line is, IVC Filters are like the devil to anyone with sticky blood, never allow them to put a permanent one in you and only allow them to put a temporary one if its an emergency situation.😱

Thanks again for everyone's responses and support, you helped me to be brave enough to stand up for myself. Claire ☺

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I forget to say, re asking Dr Breen, I don't know if I will actually get to see her in person unfortunately however it was the one helpful thing that the 'not so very nice doctor' I saw from the Thrombosis Team at St Thomas hospital told me, IVC Filters and sticky blood should not be put together, not long term anyway. y

My vascular surgeon said the same, they now know that they are not safe to be left in anyone and definitely not safe to be left in anyone who has a sticky blood condition.

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Yes. They used to be called “ bird cages” here. It least in 1996...

My mother had one put in. Of course now ( retrospectively) we know she had APS.

My mother was a multiple clotter- apart from pre eclampsia, she flipped from legs that went to lungs. She also deleloped a large aeortic anyeurism and had it repaired. ( Houston Texas. 1995.) She did not recover well, much to her surgeons surprise. She was 65. She developed clots Post surgury and was put in icu and a clot catcher was installed. I believe she went into mild caps. She just did horribly.

She was never the same. She never really recovered. Dacron was inverted to reinforce the weakened aeortic wall. I’m sure that was terrible for APS. She was put on warfarin temporarily.

Once she came off she had a heart attack and a stroke - and died. -18 months later. I can’t remember how long she had been off warfarin. This was so long ago.

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Kelly,

So sorry to hear about what happened to your mother, it's deplorable that in 2017 doctor's are still taking their patients clotting issues so lightly! 😤

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To the original OP Claire.

I also now test negative for APS but have mainly brain involvement and peripheral neuropathy. I also have EDSIII. Since being moved from Prof Hunt's clinic I have repeatedly been faced with having my treatment withdrawn. It doesnt help that the clinicians dont understand EDSIII. I've nothing much to add as to your particular situation, the advice given here is first class.

The only thing I'd advise is I've found it helps to educate clinicians about EDS as they think its just being a bit bendy!

I use this document as an opener as it has the latest classifications recognised in the UK.

hypermobility.org/help-advi...

Best of luck!

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Jengoldenpig, thanks for your post, its good to meet a fellow EDSer on an APS site.

I'm so sorry you're being let down by the thrombosis team at St Thomas hospital too. I have contacted the Secretary of the neurologist who consulted re my head MRI results back in 2007 and I am asking him to explain exactly what went wrong in my brain back then and why I'm still experiencing symptoms of TIAs and other APS type neurological symptoms too, if I'm supposed to be fully anticoagulated on Apixaban. I've also asked my GP to refer me to him directly.

I'm considering asking for a referral to Professor Graham Hughs too, as when I was diagnosed with eds type 3 in 2000, I had not experienced any clotting issues. I think if I had then my diagnosis may have been very different.😕

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A quick update. I just arrived at St Thomas's Hospital as I'm being admitted today to have my IVC Filter removed tomorrow, yikes!

I finally spoke with Dr Karen Breen and initially she wanted to postpone my operation until I had seen either her or Professor Hughes in clinic. I managed to convince her not to cancel it by explaining that I really can't live with this pain any longer, or be so debilitated by my high heart rates and acute breathlessness. She agreed I could have my op but said she will be coming to see me on the ward today, to make sure they have my anticoagulation bridging plan correct and will then come and see me after the op to make sure I'm on the right anticoagulants going forward. I have brought my medical history notes with me and also the letter I recently received from Professor Hughes stating that given my medical history and current symptoms, he believes that APS is possible.

Fingers crossed they will get the filter out and I will now also be looked after re my anticoagulation.

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Hope all goes well xx

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Thank you HollyHeski.

The filter is out but the surgeon had a major shock when he first imaged it, in fact he said it was the worse case of filter embedding, scarring and erosion he had ever seen. The entire filter, rather than being inside the inferior vena cava vein, had eroded through the vein wall so that the filter encased the vein!

I was in surgery for almost five hours and lost a fair amount of blood but he managed to avoid open surgery and to retrieve it via my veins using three puncture sites, my neck and both groins.

The entire top apex was encased in scar tissue and there was only one tiny hole in it where he was able to pass a guide wire through to get to the filter. All the returning blood from my lower abdomen and legs has had only that small hole in the scar tissue in which to return back to my heart. It's no wonder then that I have been so unwell and in such terrible abdominal pain since 2015 and then house bound for the past year and a half, with excessively high heart rates and acute breathlessness

Apparently my poor heart has been compensating for this lack of returning blood for many years, as the blood flow back up to my heart declined and worsened! With my sticky blood and delicate EDS connective tissues, it was a a disaster waiting to happen and should never have been put in, well not a permanent filter anyway.

My main abdominal vein has been left so scarred and narrowed that he had to insert a stent in it, in order to keep it open and post op I feel worse than I did before.

My lovely cardiac/respiratory doctor Dr Marino came to see me today and explained that it will take my heart some time to get used to the new increased blood flow and pressure and after having a listen to my lungs told me that I also have fluid on them due to being intubated, which is exacerbating my breathlessness and reducing my saturations. At the moment I'm on 24 hour oxygen to help keep my saturations up and to ease the pressure on my heart while it learns to adjust.

I almost didn't go ahead with the operation, as Dr Breen didn't come and see me on the ward the day before when I was admitted as promised and has yet to come and see me post op, which is incredibly disappointing.

It may not have been a her fault pre op, as the ward I was supposed to be admitted to had no beds available and so I was sent to the Simon Patient Lodge, the in hospital hotel instead of being on the ward.

I only went ahead with it because the interventional radiologist who was going to perform the operation convinced me that he was fully aware of my clotting history and as such would keep me on a heparin infusion throughout the operation. He also said that he would keep me on heparin injections post op, until I am seen by the thrombosis team.

He actually showed me the ultrasound images of my operation from start to finish and when I saw that the filter was outside my vein, I was utterly gobsmacked that he managed to get it out, given that he had to collapse it back inside the vein which would have punctured the entire circumferance of my vena cava! He said that he had to apply pressure on the vein for a very long time afterwards in order to stop the bleeding!

My haemoglobin pre op was 9.7 so anaemic and post op 7.4 so very anaemic, so far I've only had IV fluids but hopefully if I eventually see the thrombosis /haematology team, they will arrange for either a blood transfusion or iron infusion to rectify this.

It's been incredibly frightening going through this operation and recovery without the support of the thrombosis doctors, especially as I am feeling what is either blood clots or scar tissue debris passing through my heart and into my lungs, whenever I move around, say from bed to commode. I've also been having head and eye pain, zigzags and peripheral flashes and very blurred vision, in fact I have to say that l feel a bit like a ticking time bomb😮

Today my face was so flushed and burning it felt like I'd exposed myself to several hours in the sun. It is butterfly shaped on each cheek but not really on my nose, so I don't know if it can be considered as the classic lupus butterfly rash. If I can work out how, I might try and post a photo to see how it compares to other people's.

I might have to copy this post to a separate post tomorrow, as I'm not sure if this one is still being followed. Hope that I made sense above, as I don't really feel in charge of either my brain or body at the moment 😖

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Oh wow you really did go through the mill with this. I know you wanted it out due to so much pain - at least now you know why.

How terrible that a very well respected haematologist has not been to see you and take an active role in your care. I wouldn’t think it matters what ward you’re on - you could be easily found on a system!

Take care and let us all know how things go. Hope you’re on the mend soon x

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Yes, it is quite possible

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Ok- it’s me! I’ve been wondering about you!

Woah... ... ...

Good lord have mercy.

Somewhere along the way I missed you got an appointment with dr Hughes- so good- you got to London Bridge.

I’m glad you’ve had the surgery- no more dreading it, Claire. That’s 1/2 the battle. That mental preparation. And.. the first 72 hours Post op. Your about to cross that mark also.

Your really tough two things are behind you.

Now let’s get a thrombosis team in- but it sounds like your team you had really did a good job.

I can’t belive how that was embedded the way it was! Your surgeon really had his hands- literal full! What a talented surgeon!

Don’t worry about responding if you are not up to it- we will certainly understand. Your body sure has a lot to get used to- suddenly.

My goodness...

yes- time for a new post.. titled something like , “IVC : Drama in the operating theatre “😉👍🏻

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