Please help, newly diagnosed and scared!

Hi all I'm so scared with my results stating I have tested positive for lupus anti coagulant after suffering two miscarriages, one at 19 weeks last May! I have read up on this and read it can be named aps syndrome or Hughes syndrome and read the risks of developing clots to heart/lungs/brain etc yet my consultant stated I would only need treatment when I next conceive but not otherwise?! I don't understand this at all, surely I should be on blood thinners as a precaution whether I'm pregnant or not! I feel so confused and frightened and would really appreciate hearing from anyone else with same diagnosis xx

10 Replies

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  • Hi and welcome, you have made your way to the right forum, where are you located? Also I am wondering which hospital you are under as we do have a list of recommended specialists. hughes-syndrome.org/self-he...

    Not everybody needs anticoagulants, (thinners), outside pregnancy, I am only on Aspirin myself plus a couple of unrelated drugs. It is crucial that you get the right assessment for you with your medical consultant. I am sorry about your losses, many women on here have had the same, but with the right care and treatment have gone on to have successful pregnancies. It is better and safer to have a diagnosis than not to. Your doctor will help you through this, and you can also ask us questions. It is a good idea to monitor your symptoms, but it is a balance between over thinking it and not bothering to think about it, we all find some middle ground in the end. If the appointments feel daunting, do take somebody you really trust with you to be another set of ears.

    Best wishes to you, please don't be too worried or frightened, it is much better to be diagnosed early on.

    MaryF

  • Hi and welcome to this site,

    First of all I want to say that I am so sorry for your losses!

    I understand you are confused and frightened also. I have APS and Lupus Anticoagulant in high titres. I got my 2 girls before they discovered my APS. In a way you should not feel frightened as it is good that you get a diagnose. I do not know if you have been tested positive twice. Some people go for a long time without a diagnose also with symptoms which is not good. Some "only" have miscarriages and no other symptoms.

    At first we do not have so many symptoms perhaps, but for most of us later on, more symptoms show up. APS never goes away but it is treatable and that is good if we are treated before the clots, the PEs or other symptoms show up.

    Three things are important:

    Get an APS-Specialist! That is exstremely important as so very few Doctors know about APS.

    Get anticoagulation as we have too thick blood. We feel much much better after that and can avoid clots etc etc. I started with Baby-Aspirin and perhaps your doctor suggest you do that. I do not know. Aspirin is not an anticoagulation drug though.

    Try to read as much as you can about APS. Look at this charity website. Much info there and stay on here and ask our wonderful memebers also. I have had no miscarriages. Look at hughes-syndrome.org

    You will no doubt have answers from other women who have had miscarriages. But please do not be afraid. If you have a Doctor who knows APS he understands and will help you. Where are you from?

    Try not to be afraid. Easy to say but difficult not to be. It will be ok you will see! Stay on here!

    Best wishes from Kerstin in Stockholm

  • Hi Lisa, sorry to hear about your losses. It's just awful that women have to go through at least 2 losses before they test for this. I had 2 mc before I was diagnosed and then went on heparin and aspirin for a 3rd pregnancy. They waited until I was approx 6 weeks and could see something on a scan but unfortunately I also lost that one to mc. After that, I was advised to start the meds earlier, from a positive pregnancy test. At the moment I am 15w2d on an IVF pregnancy and am injecting every day and taking aspirin. I feel very positive about this pregnancy and hoping it all works out now. Along with Hughes, I also have low thyroid and low amh, which also affect fertility.

    I asked to be seen by a haematologist as a follow up to the pregnancy loss clinic. Like you, I wondered if I should be on aspirin even when not pregnant. He went through my history and asked things about my family history of clots, my day to day life, do I sit a lot for work, have I taken many long haul flights, was I ever on the pill and had I ever had a clotting incident. I do sit a lot, was on the pill for many years and have taken many flights, all without clotting incident. So he concluded that pregnancy is my trigger for aps and I would not need anything outside of pregnancy. As others have said, Hughes can behave differently for different people. You may not need anything outside of pregnancy but at the very least, try to meet a haematologist or aps specialist who can make this call for you. They have made a follow up appointment for me in a few months, so at least I feel like I am being monitored now.

    I think I will also be tested frequently during my pregnancy, although I haven't met my consultant yet to confirm this - will finally see her tomorrow! I do know that I will be scanned more frequently than normal and have had several early scans. Oh and the other thing is they prescribed high dose folic acid, which I've been taking since 2014 in anticipation of becoming pregnant.

  • Hi Lisa, sorry for your losses. I just wanted to share you are not the only who is LA positive without treatment. I am in the same situation. Our son was born at 33 weeks, and after that I was tested for APS. Make sure you get two tests to confirm. Because I never had any other clotting incidents and I am otherwise healthy (they did check quite some other things alongside APS) I was given the advice not to take any meds or aspirin. Only if I would get pregnant again I would have to take medication from six weeks, or if I would ever go on a long flight I would have to walk a lot, or if I would ever have to stay in bed for a long time during ilness I would need medication, and very important, I had to stop using the birth control pill and never take it again (and also I could not use any other hormone anti conception). Best in your situation to check with a specialist, but for your reassurance I wanted to share. I have been on a long flight already in the meantime (18 hours) and walked a lot and had pressure stockings on, just to be on the safe side. Sorry for any grammar mistakes, English is not my native language (I'm in the Netherlands). Best of luck!

  • Wow I'm overwhelmed with all of your replies and feel so glad I have found this fab forum! I was in such a state Friday after diagnosis and it was my second test to confirm diagnosis, that I didn't know where to turn but luckily came across this forum. I hope you are all well, I plan to see a specialist and get advice on my situation but glad I'm not the only one who isn't on meds and are ok xx

  • Hi there. Firstly, sorry to hear of your losses - I had a similar experience and was diagnosed with Lupus Anticoagulant. I do not take any medication normally and I am lucky as feel absolutely fine. I do take aspirin and heparin in pregnancy though, you must use the advise you are given from your specialist but for me - heparin was the key. I need to take it as soon as possible. When I did, I had a totally normal pregnancy and a healthy daughter 18 months ago after several traumatic losses. I have learnt from several specialists that heparin is particularly effective against Lupus Anticoagulant. For me it was a miracle drug. If you need any support don't hesitate to get in touch. I'd be happy to help or give advice. Good luck. Catherine

  • Aw thanks Hun, sorry only now seen your reply. I have seen a haematologist and been told that I don't need to be on treatment unless pregnant which still worries me slightly. It's so promising to hear of your success and gives me hope so thank you Hun! I have been told I need to be on aspirin from 13 weeks pregnancy as well as clexane injections. Is this the same as heparin?? Xx

  • Hi Lisa, starting at 13 weeks sounds late to me. My mc were all earlier than this, around 7-9 weeks and the first time I was on aspirin / heparin, I didn't start until 6 weeks when they could see something developing on a scan. The aspirin / heparin didn't work and I lost that one at 9 weeks (although it may have been a different reason to Hughes). After that they revised their recommendation and told me to start as soon as I got a positive test. This was at about 5.5 weeks. I think other women on here have had similar guidance to start from positive test.

    I would just question this with your consultant if I were you.

  • I was on aspirin from 4 weeks pregnant or when I first get a positive test. Aspirin is different to heparin/clexane. Aspirin helps the placenta while clexane helps protect you.

  • I was advised aspirin and clexane from positive test at 4 weeks by obstetrician but haematologist started aspirin after ovulation before i was pregnant and successful same cycle. Another obstetrician told me that there was no problem starting aspirin before positive tests. "The sooner the better" he said! I think some aps sufferers seem to need the aspirin to aid implantation from what I've read. I think all when these things are started vary widely but doesn't seem an issue to start asap from the information I've been given/read. Other than aspirin can possibly delay ovulation maybe . Hence starting it after ovulation. It's so difficult when given conflicting info tho. I think the truth is. The evidence isn't there.

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