Advice after miscarriages

[Tlove]

Hi all, I am so happy to find this forum. I was (cautiously) diagnosed with APS after 2 miscarriages and no children yet. I say cautiously because I have yet to have the follow up test but my anti-cardiolipin antibodies were quite high and the consultant in the pregnancy loss clinic was pretty confident this is what I have. I got pregnant v quickly after my second miscarriage and was put on 75mg aspirin (which I had started to take myself anyway), high dose folic acid at approx 4.5 weeks. They had to wait until scans before they would put me on heparin so I started this at about 6 weeks. The follow up scans showed the baby was developing but it was a week behind my own dates, which I was sure of. Sadly, I lost this pregnancy at about 9 weeks, having seen a heartbeat the week before. So now I have had 3 miscarriages and still no child. I am not sure what to do next, I have read that steroids could help in the early weeks and also that vitamin D deficiency is found in patients with APS. I am just wondering if anyone has tried adding either of these to their prescribed medication and what kind of outcome people have in this situation. The doctors told me to come off the aspirin as I'm not pegnant anymore but if I'm planning a pregnancy again, surely I should still be taking it?!

Apart from the miscarriages, I don't think I have any other symptoms of APS. I live in Ireland and have been thinking that maybe it would be worth a trip to London to one of the specialists there but I am not sure what extra they would do as the blood tests are the same. Are there any specialists in Ireland that anyone knows of?

Thanks for your help!

[Tlove]

Forgot to mention, I also have hypothyroidism but I have been taking Eltroxin for the last couple of years and this is pretty much under control now with frequent blood tests and adjustment as necessary. The dosage was increased during my last pregnancy. Before this diagnosis, it was difficult to get pregnant but now it seems like I have no issues since my 3 pregnancies occured in the space of a year.

[MaryF Administrator]

Hi, it is very common to have Thyroid problems with Hughes Syndrome/APS. Currently there is very little cover in your area for specialists with knowledge of Hughes Syndrome/APS. Perhaps a trip to London Bridge would be a good idea, as they would then be able to guide a local team. Best of luck and sorry for your losses, you are in the right place on here, many woman share a similar history to yourself. MaryF

[Tlove in reply to MaryF]

Thanks MaryF. I called London Bridge, they were really helpful. I think I will wait for my follow up blood test to be done here and then look into making an appointment. The blood test is quite expensive so if I can get that done before I go I think it would help. Luckily my in-laws live near enough to London so at least I will have accomodation covered!

[MaryF Administrator in reply to Tlove]

Do literally all the tests, get your GP to help, and explain you are going ahead to get an appointment, get D, iron and B as well as Thyroid and all the general blood tests done, you will save several hundred pounds. MaryF

[Butterflywings]

Sorry about your losses. I have lupus and APS and so want a child, I misscaried may last year, I recently had Rituximab to try get me into a remission period for the lupus and I was recently been told I can ttc again in new year. I am on aspirin for the APS and will go on heparin once I get a positive test. I am also on hydrochroquine, steroids 5mg and azathioprine which I have been told I will stay on when pregnant. I think speaking to a APS specialist so they can help you plan for a pregnancy would be a good idea. Wishing you all the best I know what it's like to want a family but have barriers in the way we just need to break those barriers down. Take care

[Hopingforababy]

Hello and sorry to hear of your losses. I had a still birth and two miscarriages prior to diagnosis. Ten weeks ago I had a healthy baby girl. I saw several specialists and did a lot of research. I firmly believe that heparin is the key, I took it from conception and had a normal pregnancy. I took aspirin when I got a positive test. I saw Raj Rai at St.Marys in London privately. Best £160 I ever spent. I am positive for lupus antibodies not cardiolipin. My point really is don't give up!!! See a specialist. You will get there with the right treatment x

[Tlove]

Hi all, sorry It's taken me a while to reply to you all. I just wanted to say thanks for your messages. It gives me hope that I will eventually have a good outcome. I had a follow up appointment with the pregnancy loss clinic in Cork and they are taking the APS diagnosis seriously even though the only test I was positive for was the anti cardiolipin. They will start me on the heparin from a positive test next time so fingers crossed it works this time! They will also refer me to a haematologist so there might be more tests they will do.