Borderline Aps

[Vj1990]

Hey

I’ve had 3 early miscarriages in last year and also have a portal vein thrombosis in my liver (I have also have An autoimmune liver disease but my doctor thinks it’s probably my liver disease causing the blood clot.

Recurrent miscarriage has tested me for APS and one of them was borderline positive. I’m waiting to be retested. Is it possible this could be the cause of my miscarriages ? I’m not sure if your levels have to be high or not .

I’m already on Fragmin for my blood clot (I started this after my miscarriages and I’ve been told to stay on it and take aspirin when I fall pregnant again.

Thanks again x

[MaryF Administrator]

HI there and welcome, are you in the UK? If so we have a list of consultants recommended under pinned posts over on the right hand side of the forum, also on our attached charity ghic.world/ you will find a number of consultants across the world. Did your doctor do all three tests as a good idea to do all three tests. The tests are listed on the charity website. Also it is important to test your Thyroid, also your vit D, Iron and B12. It does sound like you definitely have the disease. You still had a positive result for one test. MaryF

[Vj1990 in reply to MaryF]

Hey , yeah I’m in Scotland .

They did do all 3 tests and only one came back borderline which slightly confused me because does that count as a positive ?

They have already tested for thyroid and all the other things 😃. I’m still waiting on results from them but hopefully I will get them tomorrow .

I feel like it’s too much of a coincidence having all the symptoms to not have it . Also when having 2 of my miscarriages I actually ended up haemmorging both times and needed rushed into hospital in an ambulance is this jist back luck, or can it be related to aps?

I lost so much blood and passed out for ages and wouldn’t come round. That was before I was on Fragmin aswell which is scary.

Xxx

[Lure2 in reply to Vj1990]

I suggest you see a Specialist of autoimmun illnesses who has had patients with our illness. It is a not wellknown illness and few Doctors has knowledge about APS.

Stay on the drugs you have got if it should be APS which it might well be. You can have APS by one positive antibody taken twice within 12 weeks time.

Good Luck to find a Specialist!

[leakeadea]

Hi Vj1990,

do you know which blood test was considered as being borderline, ie was it the lupus anticoagulant or one of the antibody tests?

I'm so sorry to hear about your miscarriages. Like you, I have pretty much all the symptoms of APS and I have also had multiple PEs, DVTs and TIAs. Due to other health issues, I've never tried to have children however I do think that I've had one miscarriage but this was never medically proven.

I've tested positive three times for the lupus anticoagulant and these tests were done when I wasn't on any anticoagulant medication. Because I haven't tested positive for the other antibody blood tests (these blood tests were carried out while I was on anticoagulants meds), my current haematologist won't give me a definitive APS diagnosis.

It's incredibly frustrating not being able to get a definite diagnosis as I'm sure it is for you and that's why I'm really curious as to which of the blood tests you had were considered to be borderline.

Thanks so much, Claire 😀

[Wittycjt]

Borderline? Meaning what... you are either positive or negative, maybe you are Seronegative?

[Vj1990]

Hey everyone I’ve just seen all these messages, I just got a phone call from my gp to say my second batch of tests showed up positive for lupus anticoagulant . I’m kind of glad because I had a gut feeling I had this and I feel like I have an answer for my miscarriages and also my blood clot in my portal vein (my liver specialist wrongly diagnosed me with cirrhosis because the most common reason for pvt is cirrhosis ) then she realised all my mris etc didn’t know cirrhosis . I think she didn’t believe me when o said I thought I had aps xxx