I am new to this site, six mos post broken ankle and resulting dvt, just diagnosed with APS

[Sandrapanda]

Six mos. ago I was post five IVF failures and had selected an egg donor, and was ready to start my family. I never miscarried but just had no implantation. But then I fell, broke my ankle and was in the ER ten days later with dvt in 3 veins of my left leg. I was put on coumadin and just got off two weeks ago. They did a hyper coagulation panel and found now that I have APS. I am in shock and am scared. I know the dvt is resolved b/c my ultrasound was clear, but I am now to see a hematologist and determine if I must go on blood thinners for life. I am almost 43, and am heavier than I should be. I have interstitial cystitis (also auto immune) but never anticipated this was not just some fluke thing. My left leg still hurts from the resolved clot...it throbs and my ankle is quite painful still despite the break being healed. I feel like this is all just some nightmare. Our egg bank will not likely let me continue with their guaranty program ( they promise a live birth if you pay a higher fee) and now my whole life is turned upside down. I have an identical twin who has none of these issues...what the heck happened in my case? So weird. I hate coumadin...it gave me terrible headaches every day...and my INR was all over the place every week. I had a high dose...10 mg every day. Is it possible the blood test was wrong? If I had a dvt that came with a broken ankle and wasn't spontaneous , does that mean I must take warfarin for life??? I am devastated and seeing the damage this diagnosis can cause is just so scary. I am also hypo thyroid and losing weight is so incredibly tough...it was darn near impossible before I was injured and now is even tougher. If there is anyone in Massachusetts USA that can help with a recommendation for a good specialist, I would welcome it...also just to share info. I am just so confused at how this has happened.

[Silent1]

I am post diagnosis almost two years but I knew I had something autoimmune for ten, but doctors blew me off, until I broke my ankle and ended up with a clot that could have killed me. They ignored it for three months and now have I have post phlebotic syndrome in my right leg. I never got pregnant alone either. I had to use IVF. I had a hard time with the long term blood thinners at first. It was mostly right after my clot happened. I was sick and week a lot, but I think that was due to my broken ankle, my cardiovascular health and the fact I am obese. Funny thing was I had last a ton of weight and I broke my ankle running. Stay with the thinners. My 47 year old brother died from a blood clot two years ago. I am so scared that will be me. I am in the oncologists office waiting to see what he thinks about the thinners. Docs do not recognize this disease all of the time. I need a specialist who is knowledgable about APS. Keep looking looking for one too. Do not give up. Any chance you can use a surrogate? I wish I had the money for one too, but know I am lucky to have one of my own. I will keep you in my thoughts and prayers.

[Sandrapanda in reply to Silent1]

Hi there...again - so sorry for your loss. I could look into surrogate...just not sure if we can afford it. Step by step I guess.

[MaryF Administrator]

Hi there, you have landed in the right place, and I see that APsnotFAB has answered in full, and also filled you in on seronegativity, although she herself ended up with a positive test result in the end, which is an example of how crucial it is to be careful with diagnosis. Believe me it is better to have a diagnosis than not to. Things will calm down a little and please stay with us on this forum as you will find many others in the same situation. Many members on here are from the USA also so can help with localized knowledge and there is also this: apsaction.org/ The information on our charity website is also very useful: As are the books available for sale through the charity. hughes-syndrome.org/

MaryF

[Sandrapanda]

Thanks to all who have replied. it helps a lot to know that things will calm down, although I feel so overwhelmed at the moment. I was able to get an appointment for March 13 with a Dr. at Brigham and Women's in Boston that has experience with APS...and my GP is trying to get me an appointment with a hematologist in the next two days.

I will have to look up what seronegativity means, as well as all the testing names...I am not yet that far along in my studying. @Silent1...I am so very sorry for the loss of your brother. It sounds like you have educated yourself though and are well on your way to making sure you get the right treatment so that you can avoid such a thing. Again thanks for the support...you are a bunch of very strong people and I hope I can exhibit the same kind of fortitude.

[Lure2 in reply to Sandrapanda]

I am sure you can. Stay on this site.

My very best wishes to you from Kerstin in Stockholm

[Sandrapanda]

So by way of update...I went to see a hematologist/oncologist who knew some things about APS. She apparently has treated people that had it during pregnancy. She advised that when I fell and suffered a DVT my blood test for 15.5, but after 6 months on Coumadin, and once the dvt was resolved, they retested after two weeks off Coumadin and my was at 42.8. She said this is what sparked the concern and possible dx of Hughes. She was perplexed by the test results though b/c she advised she would have expected them to be high while the clot was present, and lower 9but still out of range) for after the clot was resolved. She advised they would repeat the test, an then test me again in 12 weeks...but did not want me on aspirin or any other thinner in the mean time. This concerned me b/c if it is likely I have Hughes - aren't I in danger of getting another DVT? The diagnosis with me is apparently more difficult b/c although I went through IVF and had 5 failed attempts...I had no implantation, so no miscarriages. The clot came after a severely broken ankle, and some estrogen treatment for a mock cycle that has finished up a few weeks prior...so there is no way to know if I would have suffered a TIA/clot or miscarriage absent the broken ankle and so I am otherwise asymptomatic. She was unaware of the 3 tests mentioned on this forum and told me that if I am positive for the lupus anti-coag then I will be diagnosed with Hughes...she said it only takes being found positive for one test to be properly diagnosed. I had to ask for all three tests (anticardiolipin; the lupus anticoagulant and the anti-beta2-glycoprotein1) and she conceded and said she would ask for them as well. I am very confused right now...how will they know if I have this syndrome if I only test positive for the Cardiolipin Ab, IgM? And could there be other reasons why that is so elevated when my DVT is shown as resolved in two ultrasounds? I am scared not to go on thinners, but also scared that I will be diagnosed with something I don't have. I am likely to be kicked out of my egg donation program as a result of this diagnosis, and in addition, as I am near 43 and not in great shape, I am scared to get pregnant if diagnosed. is it worth the risk of another clot/miscarriages/pre-eclampsia? She says I am likely to suffer these, even while on heparin.