Hi I'm a 30 year old female with a recent central retinal vein occlusion which is apparently very rare. my ophthalmologist is being thorough but I want to take my health in my own hands so to speak. My 1st Anticardiolipin bloods came back at igm 9.9, second came back at igg 10.7. The rest were very low. According to Hughes foundation these would be taken a closer look at if they were taken there, however here they (or anybody) doesnt seem to ring any bells, except me after digging !!?? They did say a syphilis test came back mild positive which turned out to be clear after a specific test...(very scary) so that's weird too. I don't know if the Ophthalmologist has taken these results as abnormal or not, he has sent me to a rheumatologist to check for lupus but don't think it's that.....any advice please, I do think this is a little unnerving and not a fluke...are these results not right?
Anticardiolipin levels?: Hi I'm a 3... - Hughes Syndrome A...
Anticardiolipin levels?
HI there, yes to the advice already issued above, and if not in the UK, we can probably point you in the direction of help, via other patient's success with tracking down care. It is important that you see somebody who has good working knowledge of this condition. MaryF x
Hi all, thank you for your replies. Should I take your advice to see an APS specialist to mean that those igg and igm results ring some Bells? The hospital who took them have a 0-10 range which they would see as 'just' normal however on the Hughes site they'd be considered abnormal am I correct? (combined with my retinal vein occlusion)
I am under an ophthalmologist, have just seen a rheumatologist who is doing xray and a brain mri.....who do I ask for referral would it be one of these or my gp? I am in the UK, Tyne and Wear.
Thankyou
You can ask your GP to refer you .
Hi and thankyou, is it an easy thing to be referred to a specialist or do Gps tend not to do it easily? I do have a lovely GP but sometimes I feel like I'm a nobody trying to tell a somebody what to do!...that's why I feel I need to know if those blood results seem off or not so that I can be confident I'm not clutching at straws.
I suggest emailing the practice marked for your GP's attention with the charity website, pointing out the list of consultants they can refer to and why you need this: hughes-syndrome.org/ in particular highlighting this link: hughes-syndrome.org/self-he... Try sending a few days ahead of a planned GP appointment. It has worked for me and many others. MaryF x
I am also a 30 year old female back at the end of August I had a branch retinal artery occlusion in my right eye. It was actually my Ophthalmologist that first suspected Antiphospholipid Antibody Syndrome in me. When I had the first testing done I remember my titters of Anticardiolipin were very high, I do no remember what the values were though. My PCP was already suspecting I had a clotting disorder due to some other symptoms going on but this sort of tipped us in a direction. My Ophthalmologist said its becoming more and more common to see retinal occlusions and eye related problems in APS patients.
Hi jp83,
I have had several small clots with vertigo, amaurosa-attacks (you can not see on one eye for some minutes), doublevision, Auras. When I started warfarin 2 years ago they disappeared.
Could you discribe your eyeproblems a little more? . Many of us have had "eyeproblems" and can perhaps recognize some of your symtoms.
Hope you get it sorted out. Kerstin in Stockholm
I have been diagnosed with a central retinal vein occlusion which means I have a small clot in the central retinal vein in my right eye. This caused episodes of intermittent blurs and light fogging over my vision and often morning reduced vision which would improve over the day. This has since improved and on taking photos the ophthalmologist also sees improvement. The initial suspicions were APS but this has not been really taken much further...
Can anyone confirm if I am correct that these igm/igg blood results would be classed as needing further investigation please? Otherwise I may be viewed as flogging a dead horse if I don't have groundings for referral. Thanks everyone.
Hi jp83,
We are no doctors but the above people know this illness very well and have the illness themselves. I have been on this site for some time and I think you should trust them and find an APS-doctor as soon as possible. It is your life though........
Good luck from Kerstin in Stockholm
Thankyou Kerstin I understand, Im just trying to determine if the reason people have kindly advised me to see a specialist is because they think my blood results are suspicious?
Thank you all, it's just very hard to go into the Dr's with confidence as obviously I don't know if my instincts are on track xx
Hi there, im sure ive read a few times that false syphillis tests are a pointer of Hughes, eye problems are one of the symptoms, and it was my IGG levels that were up to get a diagnosis x
Yes I have read that about the Syphilis tests..it was very scary to believe you may have syphilis and then think you may have to explain to your partner you may have passed it on....all very uneccessary as Dr didn't explain anything to me properly. I actually took myself to the gum clinic uneccesarily too...it was quite traumatic actually and I was disappointed that the gp let me leave believing I could be infected. Never mind x
The antiphosolipid will make you have a false possitive sypillis test.Your tests are right, some times your tests will say negative,doesnt mean you don't have it it goes into like remission. I
I've actually just had another letter today from the ophthalmologist who was repeating the Syphilis test just to be sure....and it has come back again false positive.....in his words this is reassuring and can sometimes happen...a natural occurrence.....he means in term of 'dont worry you don't have syphilis ' ( I already know this) but is missing the fact that my first test showed igm of 9.9 and the second test which my rheumatologist did showed igg of 10.7 and obviously isn't making the APS link as he's more concerned with settling my worries over syphilis. Obviously after looking at the Hughes site these results seem off to me, but I can only presume that because they aren't 'high' in terms of that specific hospitals ranges that they think there's nothing to worry about.....I'm taking myself down to the Dr's tomorrow to show him the info, I just worry that I'm 'looking' for there to be something wrong y'know?....x
Yes the tests can go up and down. I have had all the 3 tests positive every time for 12 years but many here have no test positive and have the illness all the same. The SYMPTOMS are very important. So please see an APS-doctor and tell him about your eyes.
My grandfather had a syfilis test positive and all thought he had syfilis! Poor him. He died before I was born in 1944,.
We all here have had to fight for the doctors to believe us. Most doctors do not know what APS is. You have come to the right place on this site anyhow! We understand.
Please let us know how you manage. Kerstin in Stockholm
Thank you Kerstin, I have now realised that the bloods don't always mean anything, after reading through this forum....I am going to see my GP tomorrow and if I get no further I will go private to St Thomas'. Thank you
That's very kind of you Kerstin, thankyou for your thoughts. I will happily take myself back in to the gp with some educational leaflets etc once I get some answers. I am hoping a possible diagnosis for myself will help a cousin who is suffering debilitating migraines....i believe there are a lot of suspicious things going on within the health of some of my family which I would like to shed light on. x
Ok, been to see GP, lovely guy but stupidly I wasn't as forward in asking for referral as I should have been and he would like to refer me back to the rheumatologist. I doubt this will make any difference as the rheumatologist has already stated in a letter that my APS tests are negative. Yet the letter from the ophthalmologist states the Syphilis test has came back AGAIN as false positive but that he's reassured that I don't have Syphilis, they are missing the fact something is triggering these false positives though!.... My gut tells me that's not normal and that there's something going on, they've all stated how rare it is to have retinal vein occlusion at my age. I think I may just ring to book a private appointment with Dr Hughes or one of his colleagues as I doubt I'll get much further in the time it takes to see rheumatology again. Does anyone know of how long wait lists are? Do I need a referral letter from anyone to get a private appointment...? Please say I don't....
You can telephone and self refer, you may get a cancellation slot! londonlupuscentre.co.uk/ I was lucky and got a sudden one for my own brother. Take any paperwork and recent tests you have along as it is all very relevant and will help things along. MaryF x
Thank you Mary, I hope you don't mind me asking but did you pay on making the appointment or was it on seeing the Dr?
It says on Hughes Syndrome website that you need a referral from GP?
East Coast US....Hospital for Special Surgery New York CIty/RHeumatology Department.....is excellent referral link..
actually have ongoing research projects on APS....
Central US: Mayo Medical Center has excellent referral service and links to Specialists
I have retinal occlusive issue(s) - not sure if Syphilis test is done for checking Lupus these days if I am honest? (and that is a question lol) I am looking at this as Devils advocate as I am in a similar situation.
My Igg came back mildly positive. But when I looked at the foundation site, this could only mean one could have cancer, infection etc. I still have two minds about seeing an expert. I cannot say my retinal occlusive disease is definitely from Hughes. Symptoms look deceptively similar and I have levedo R etc etc etc.
It is difficult as the main page of APS foundation page doesn't say much about this "seronegative" Hughes?
Another thing is, don't mean to go off topic...but I hadn't had any miscarriage which seems to be a dominant feature for women?
I ordered the transcripts this afternoon so will see. x
That is a great suggestion. x
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