Possible APS diagnosis after late miscarriage - Need advice

[Ashlos]

I tested positive (39) for Anticardiolipin (IGM) on one test. I know I'll need to take another in 12 weeks to have confirmation. I am to see a Hematologist soon, however I am currently trying to conceive and don't fully understand what protocol I should be on - aspirin, injections, etc. It seems this could be a cause for my late miscarriage and with right medicine, could be prevented again. Any advice on what to ask for with doctors - I plan on being my own advocate?

[MaryF Administrator]

Hi there, welcome to our forum, if in the UK, we have a list of recommended specialists, listed under pinned posts over on the right hand side of the forum, also some listed on our charity website across the world: ghic.world/ We always advice our members on here to get levels of D, B12 Ferritin, Folate and Thyroid tested alongside their Hughes Syndrome/APS testing, also listed on the website, (the 3 tests). It is important to have a specialist with full and up to date working knowledge regarding this condition, as each patient is different. I had all my pregnancies with Aspirin and Fragmin injections and I have three grown up children. Do feel free to ask questions. We all learn off each other on here, you will find it a supportive and informative place to be. MaryF

[KellyInTexas Administrator]

My advise is to hold off on trying to conceive until you have a comprehensive picture. You’re Hematologist needs to work in tandem with a high risk OBGYN if this comes out positive.

My feeling is that you absolutely need to be referee to a high risk OBGYN none the less if you’ve experienced a late stage miscarriage already, and my sincere sympathy by the way.

Likely you already are under the care of such an obgyn?

You may need to be on LMWH during and just after pregnancy, depending on your situation.

It’s possible to be sero neg, or borderline ( although 39 is not borderline) as APsnotFab says.

I really would encourage you to wait a few weeks to conceive.

Outcomes really look promising once the blood is thinned properly ! Take this time to heal and prepare yourself. Pending autumn is a “ nesting and preparing “ time anyway- instinctively! 😉

[Sara_A]

Hi, are u going to wait until u see the haem before u try to conceive again?? So that u can get into some treatment first just incase??

There’s a very high chance of a successful pregnancy once on treatment.

I was on aspirin only for my first pregnancy and then for my 2nd I was on aspirin and heparin injections just because they hoped it may make 2nd baby a bit bigger as growth tailed off but it didn’t make a huge difference.

I know it’s hard to wait but it could save u a lot of upset unnecessarily. Hang in there I’m sure once u know if u have aps u will get the right care and monitoring and treatment x

[Ashlos]

Thank you all for responses! So helpful! Upon your rec, I am going to try and see a hematologist that specializes in APS. I also have an appt with a Reproductive Immunologist, so hopefully we can get some answers. I’m 35, so going to hold out for a little until we get a better prognosis.

One more question - in this TTC phase, I did start taking some higher folic acid, and a baby aspirin (in addition to my Prenatal’s). My OB didn’t tell me to take the aspirin, I sorta just started on my own. Will that skew any tests I’ll need to take moving forward if I’m on it now?

[Lauren2121 in reply to Ashlos]

Idk about your aspirin question, but would say to be careful with folic acid. A lot of us are positive for MTHFR variant and should be taking “folate” or a methylated folate.

[Ashlos]

Thanks!! Maybe I’ll hold off on the aspirin, etc. I should have mentioned my first pregnancy went fine (no issues besides a c-section), I have a healthy 3 year old... Maybe that’s why my OB seems to think aspirin will be enough.. who knows. Regardless going to do all the docs suggested.