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Sticky Blood-Hughes Syndrome Support
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Lupus Anticoagulant query

Hi, I wonder if anyone can help?

My GP recently ran blood tests to look into my ongoing issues of tiredness, headaches, skin rashes etc, as per my previous posts. ANA and RF came back normal but lupus anticoagulant came back ‘weakly positive’. I am aged 45 with no history of clots, but my GP referred me to rheumatology as they weren’t sure of the significance of this.

When I saw the rheumatologist he said he didnt know why had run that test anyway and said it doesn’t need to be repeated as it was only weakly positive. Is this correct? I thought it was standard to repeat it after 12 weeks? Or should I just accept what the rheum has told me.

Thanks in advance!

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Hello, Chris!

We are very glad you have found us-and I hope we can help you understand journey to answering questions and being a supportive family of sorts to walk with you in along your journey should you need to embark on the next phase.

Firstly,

I encourage you to get a comprehensive overview of the anti phospholipid Syndrome, or Hughes Syndrome as it is also named, after Graham Hughes, who first described the syndrome in 1983.)

Please click on the following website:

ghic.world/

Additionally, it really is imperative to seek out doctors that are specialists in APS.

It is very clear that the Rheumatoligist you saw is not a specialist is APS. I also must say I think your GP is proving out to be a much better Rheumatoligist than the Rheumatoligist your GP sent you to! ( you’ve got a lovely GP. Please share the ghic website with him/her.)

There You will find a link to these doctors on this forum on the right hand side. You will find that generally rheumatologists and Hematologist are the mainstays of the Antiphospholipid Syndrome. A Rheumatoligist will the fist Specialist consult in most cases.

Also, please make sure you mineral levels and thyroid functions are up to speed in your system. Admins have posted APS specific values under a specific section here for quick reference called ,” Pinned Posts.” ( off to the right on a lap top or scroll to bottom on a mobile.)

If you state where you live, others will come on and tell give you lots of tips and pointers.

Many find they do need to have one private consult initially to get the proverbial ball rolling, get the diagnosis firm, get it sorted straight right off the bat in an expedient manner- then transfer done and dusted to the nhs under the same consultant.

I personally recommend London Lupus center if you are near London- even Devon area- travel to London.

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Thank you for your reply- I could travel to London, but only having had one weak positive result I’m not sure I’d get anywhere. Now the rheum has said it doesn’t need retesting I doubt my GP would be willing to test it again.

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Well, you and your GP must decide yourselves after studying the information provided by Dr Hughes on the website provided. There are even sero negative cases of APS. I’m sure you had a look at the website?

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Additionally, it would not be your GP who should test your APS panel again moving forward. It would either be Rheumatoligist or Hematologist, but in your case, with your Rheum symptoms, as far as I am understanding them thus far, it would fall under Rheumatologist.

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We have to take two positive tests within a 12 weeks time to get a diagnose of APS. You can also be diagnosed only by symptoms and some are also negative to the antibodies for a very long time but still get a diagnose as to their symptoms typically for APS. Therefor important to get a Specialist of autoimmun illnesses!!

It does not matter if you get only one or all three of the antibodies positive. It does not matter if it is weakly positive they should do the bloodtests all the same. People can be zero-negative.

They need to do a bloodtest for Cardiolipinantibodies, Beta-2-Glycoprotein 1 and finally Lupus Anticoagulant.

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I think your GP was concerned about systemic autoimmune disease, and this is why he sent you to the rheumatologist. It is true that they usually do not run that test until lupus is diagnosed. On the other hand, some rheumatologists do the anti-cardiolipin and lupus anticoagulant tests, at least in the U.S. where doctors have more liberty, when lupus is suspected. My anti-cardiolipin was low positive before the ANA. You should discuss with your GP the assessment of the rheumatologist. Do you have neurological symptoms? It is very confusing, I know. Would be good to get the total picture. Others here can help you if it was APS the GP was specifically concerned about. Good luck with this. And feel free to ask questions. KH

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Kay, I have found in the USA, it is very dependent from physician to physician ( even among specialists) if they run the APS panel or not, and more importantly, if not, why. Often if we form DVT’s ( like me) the Hematologist is running the panels also.

I’ve had my Rheum run them on Monday and the be moderately positive , and my Heme run them 4 days later ( I though he was just drawing mineral and homocysteine leveles but he also threw in a APS panel) and they were negative!

A very Savy Rheum knows once tested positive twice in a row positive, it can ,” count against you” if you go negative.

They are in a catch 22 themselves knowing they are enslaved to the revised Sidney ( Myakis) revision of 2006. On the other hand, if antibody titers are rising, it may ( or may not in some anecdotal) point to the need to tweaking treatment, or at least keeping a closer eye. My Rheumatoligists in the States and in London for example, have had this very discussion with me.

It’s really patient dependent. The key here again is to have an APS Specialist who can navigate these subtleties.

Once you get a firm diagnosis, with all specialists singing from the same song sheet- all cc’d to each other- it doesn’t matter anymore what those silly tests do. ( I was lucky mine were positive- mildly so but they did flag positive twice in a row 12 weeks apart) - and I got a large DVT the very next week and was hospitalized and was started on warfarin. But- it was not easy sailing until I was sent to a true specialist to set my INR higher and get myself truly sorted out.

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My point was that it is not always part of the initial lupus work up. There are guidelines for testing. That is why the rheumatologist was concerned that the GP did the test. It just was not clear what the GP was looking for. With her headaches, though, maybe she could go directly to an APS specialist. Confusing.

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Oh, yes. I see your point. I agree.

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But, as you say, she has enough symptoms, plus a positive APS test- so she absolutely need to go to an APS Specialist. They are Lupus Specialists as well, and Rheumatoligists by stock and trade, so she will have three levels of protection.

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Yes, it just was not clear whether the GP was looking for lupus or APS. I really do not know what most rheumatologists do at consultation. Mine ran the VDRL over thirty years looking for the antibody. I think definitely after lupus is diagnosed rheumatologists tests for the antibodies. That is one concern about lupus patients who are treated by internists. Studies show they do not run the tests. It will be interesting to know what an APS specialist says about her. If my experience is any indication, low level antibodies can do damage. K

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Yes, I also started with low, mildly positive results and got a huge clot. I was already loosing my vision and had lost many pregnancies. I had already almost lost my life to severe ITP in infancy. ( 1971.)

I’m also positive to the phospotidylserines.

I think the bottom line is she has the website, and a specialist Rheumatoligist in APS will understand lupus and APS. I think she will be covered now.

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Complicated illness, right? You have really been severely affected. Interesting that you started out with low positive results. That is why doctors have to take things in context. A low positive in one patient is different from in the next. I am not familiar with the antibody you mentioned. Did they have to send you to a researcher to find it?!

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No, some Rheumatoligist have access to these test kits. Eliza assay or Avise panel. Dr Hughes called them ,”additional antibodies.”

They all basically belong to the same group of pro thrombotic antibodies, according to my aps specialist neurologist.

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Interesting. I have heard of the Avise panel. I wonder why they aren’t using that more on difficult to diagnose patients.

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It’s not criteria. It’s helps doctors understand larger pictures.

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I read your earlier posts. I agree with the others that your best bet would be to see an APS specialist. The rheumatologist seems to have ruled out lupus. You have headaches and fatigue and maybe others symptoms you are not thinking of. The rheumatologist may be correct in the strictest sense. But many people have symptoms with low level Anti-Phospholipid antibodies. You may find treatment helps your headaches. K

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Thankyou so much for all your replies! It really means a lot. Sorry for the delay replying- headache!

Anti-cardiolipin abs haven’t been tested. My rheumatologist, who is a really nice guy, and specialises in lupus, feels that I do have an autoimmune process going on, but not lupus or anything else serious.

He has suggested improving my diet, taking omega 3 and vit D, and he also suggested giving me a Depo-medrone injection and possibly treating me with hydroxychoroquine. He said it’s not chronic fatigue syndrome or fibromyalgia, particularly as I have psoriasis.

Some of my other issues are IBS, some joint pain, eye issues- dry, irritable eyes, and I have an issue with my eye muscles not working together properly so I have a prism in my glasses. My optician described it as double vision but I don’t actually see double, and the rheum dismissed this. I also don’t have a history of blood clotting. I did mention I had primary infertility- just took a long time to get pregnant, but went on to have 3 children. I did have a placental abruption with one pregnancy and there were clots behind the placenta, but no idea if that is relevant or not.

Oh it’s all so tricky. No wonder people just give up and put up with feeling like crap all the time 🤔

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As APS go hand in hand with both SLE-Lupus and Sjögrens and Thyroidea-illnesses very often, we need a Specialist who knows what antibodies to look for if other autoimmun illnesses are suspected. They often look at a spectrum of different bloodtests to get help to distinguish what is what.

Autoimmun illnesses are very difficult to diagnose and to separate one from another and therefor we had better get a very knowledable Specialist of autoimmun illnesses to begin with.

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Thanks- that’s what I though I was getting with this rheum- but he seems keen to just dismiss most of what I tell him. I did come away feeling I was making a fuss about nothing. 😞

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May I ask have you tested some sort of drug to thin your blood?

I understand that your GP and Rheumatologist have not suggested Warfarin or some anticoalation-drug but perhaps you could try 75-100 mg of Baby Aspirin per day (there are coated ones I think in your country to prevent the stomach) and see if your symptoms of joint-pain and eye-issues etc will improve. Then you can tell that to your future Specialist. Take the baby-Aspirin after you have eaten.

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I may do that- it’s worth a try. Thank you so much. I really appreciate you taking the time to help.

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A bit of an update- I asked for a copy of the blood tests the rheum ordered, and received them today. Despite him telling me Lupus Anticoagulant didn’t need to be tested again, it was tested again, and came back ‘Lupus anticoagulant detected’. I don’t know whether he had forgotten he requested it, or just chose to ignore it as he’s decided it isn’t relevant.

Unfortunately this was done only 7 weeks after my first ‘weakly positive’ result, so I doubt it would count towards a diagnosis as they need to be 12 weeks apart.

I was thinking of emailing the rheum and pointing out the second positive result, and pointing out that I have severe fatigue, migraines and have had a placental abruption in the past. Bad idea?

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It’s not a bad idea, it’s important information.

The original criteria from 1999 only required the tests be 6 weeks apart, I believe. It was the Sidney revision of 2006 where it was changed to 12 weeks apart.

Your Rheumatoligist still may be a stickler, in which case I do feel you really need a second opinion. A placental abruption can be a part of APS, can it not?

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Yes, I have read that placental abruption can be part of it. I think I will email him, then if he still dismisses it, then I agree I need a second opinion with one of the APS specialists.

Thankyou Kelly 😀

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You are very welcome, and I wish you the best of health in your journey!

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