Hi everyone! After suffering a missed miscarriage and 2 chemical pregnancies, I had bloods done. The test came back positive for LA. I unerstand a further blood test needs to be carried out to confirm. I've asked my GP to do this and they've said there is no need until I fall pregnant again. We also went to see a fertility specialist who has sent us away and said come back in 6 months if you aren't pregnant. I asked him about aspirin and his words were "don't bother" so my question is has anyone went on to have a healthy pregnancy without taking aspirin? Should I self prescribe the aspirin as the gp and specialist don't seem to have any interest? Any help or advice would be much appreciated 😊 x
Should I take aspirin? : Hi everyone... - Hughes Syndrome A...
Should I take aspirin?
Some of us (including myself) start on 75 mg enteric coated aspirin once a day on a full stomach, usually while we have waited for a diagnosis. It is best though, if you have the right medical care. I really suggest if you are in the UK you take a look at our list of specific specialists under pinned posts over on the right of this forum. You need your GP on side to enable a referral to one in your area, It would make their life easier as well as yours.
it would be best if they did the second blood tests so you have more help with any planned pregnancy. I also suggest that you have a good old look through our charity website: ghic.world/
I also suggest you email your GP, via his or her secretary with the list of specialists, you concerns and the charity website.
MaryF
I suffered 2 miscarriages after my first child. On a whim, my OB prescribed baby aspirin once a day which I took throughout my pregnancy. He also prescribed progesterone that I took until I was 3 month along. I had a healthy baby girl. 10 years later, I was diagnosed with a mild case of APS. My doctor thinks the aspirin is what made that last pregnancy viable. Maybe it was coincidence but I would definitely seek other opinions.
You really need to test positive again before pregnancy as they need to plan your pregnancy and by the time you get the results it might be too late to save that pregnancy.
I had 2 miscarriages before being diagnosed and then took aspirin from positive pregnancy test (as taking before can cause miscarriage) for my third pregnancy which ended in a missed miscarriage at 14 weeks. I then had a fourth pregnancy that ended at 8 weeks while on 75mg aspirin. Taking aspirin while pregnant gives you a 40% chance of live birth but taking aspirin and Halton takes the odds up to 80%.
Due to NHS guidelines as the baby in my missed miscarriage had died at 10.5 weeks I technically hadn’t had a second trinloss so heparin would not be prescribed.
I paid to see Dr Raj Rai at St Mary’s in London where I had a TEG test which proved I needed 150mg aspirin and 5000 units of heparin. My fifth pregnancy was successful and I had a beautiful full term girl.
Look at the Hughes charity website and see your GP again. If you are near a specialist please ask for a referral.
Wishing you all the very best
Would you be willing/able to tell me more about the TEG test? I asked my specialist about it but he had no idea what I was talking about, and I wasn’t properly informed. Thanks so much in advance and congrats on your rainbow baby!
Of course it is a more sophisticated way of testing the thickness of your blood. There are only four of these machines in the country or there were 4 years ago and you need to put your blood directly into the machine so you have to book time on the machine and need to be there in person to perform the test you can’t send a sample down to test.
Based on these results they determined that 75mg of aspirin was not enough and they add the fragments in as studies show it gives you a much higher chance of success.
It cost me about £450 for the tests and the consultation which I really didn’t think was bad at all!
I believe Liverpool women’s also has a TEG machine. Then there was one in Scotland and one in Ireland. Depending on where you are in the country another may be easier to get to.
Wow. That’s incredible! Exactly what we need, right? I live on a small, rural island so I’m sure I would have to travel to get this test... I’m a US citizen, I wonder if they have them there. Thanks so much for enlightening me!
Thank you for your help everyone. I just feel so let down by my gp and the specialist. I was so happy when we were referred to the specialist and then he just sent us away with no help. I will ring the gp and ask for a 2nd blood test. We have contemplated going private and I'm now thinking this may be the only way we get help. Thank you. I will have a look at the list and speak to the gp about that also. Thank you all so much for you help xxx
I am newly diagnosed with APS after two positive blood tests following a MC at 11 weeks [one MC after 10 weeks OR multiple MCs at any week, and two positive blood tests (must be 12 weeks apart) result in a diagnosis].
My research from medical journals informed me that baby aspirin (81mg) post-MC is helpful with conception - there were higher rates of conception post-MC in the year following the MC with daily baby aspirin (there is an article to back this up, but I don’t have the link at the moment). That said, the research demonstrated that aspirin alone doesn’t *maintain* the pregnancy. If you have APS you will greatly increase your odds of carrying to term by adding LMWH injections. My specialist advised to continue taking the baby aspirin throughout the pregnancy as it can help mitigate preeclampsia. The evidence does not support adding in steroids for better outcomes, but everyone is different. Some women who have difficult conceiving have reported easy conception starting the LMWH injections on day 7 of their cycles. Also, specialist told me that he won’t let his patients carry past 39 weeks as the baby is perfectly viable at this time and each day in the womb is a risk to mom and baby.
In my experience we really have to advocate for our care. I asked my RE to test me for APS about a year after I had been trying to conceive with no luck, my intuition was guiding me to this diagnosis. He refused. Said I would present differently, I tried to get him to change his mind but couldn’t. I eventually conceived two years after starting my journey, only to lose my baby at 11 weeks. I asked to be tested again and the RE told me, “no, you need to have 2 or 3 more miscarriages before we test for that”. I demanded the blood work and told him I would pay out of pocket if needed, that it had to be done, that I couldn’t endure another loss without knowing if I had APS (I really feel for those who have had multiples.. what a nightmare!). If I hadn’t demanded, who knows how long it would have taken for proper treatment. Point is, keep speaking up for yourself and listening to your intuition.
Best wishes to you on your journey!
Hi Heidi
So sorry for your losses-I’ve been there too and it’s so hard. It sounds as if you’ve been referred to the wrong type of specialist. Rather than a fertility specialist I would ask for a referral to a recurrent miscarriage clinic or obstetrician/gynaecologist. This should be done after 3 losses (your chemicals count as losses) and the test does need repeated 12 weeks after the first-not whilst you are pregnant!
The standard protocol for most people who test positive is aspirin upon a positive pregnancy test and then low molecular weight heparin (eg clexane) once the pregnancy is confirmed via scan around 6 weeks. I had 3 losses and am now 36 weeks pregnant following this procedure. Aspirin alone is often not enough for someone with AS.
Again I would push for a referral to a recurrent miscarriage clinic. If you are in the uk and are near someone on the specialist list then even better. I’ve recently transferred my care to someone on the list and the difference in their understanding and support is amazing.
Best of luck in the future.
Hi, I had two miscarriages, first one was less than 10 weeks and I didn't even know I was pregnant so it went un-noticed until I had 2nd at 10 wks, this was put down to my blood group, A neg and OH is O pos, I was given anti D immunoglobulin and sent away (incidentally this triggered an ongoing allergic reaction to beef products ie: gelatine), a further miscarriage then my fourth pregnancy which was 'officially' problem free but I was generally unwell, very bad livedo, my arms and legs were virtually purple and towards the end I suffered from undiagnosed pre-eclampsia, baby was born 4 wks early and was 5lb. I then had a 2nd miscarriage before my second daughter was born, she was small all the way through my pregnancy, hospital kept telling me I must have my dates wrong, I was drinking 10 pints of milk a day to try and put weight on the baby!, She was also born 4 wks early and was even smaller than the first after a panic when her heartbeat stopped during the birth. So to answer your question i did manage two successful pregnancies without any medication but it took me another 15 years before I was officially diagnosed with APS. I had researched my symptoms and was sure I knew what I had and put myself on 75my of Aspirin before results of the second test as I knew it wouldn't do me any harm.
Where are you Heidi