Don’t want to name and shame any medical professional on here but will tell you a story. I was diagnosed with Primary APS after a blood clot in my IVC extended into my 2 kidneys and down into my groin. 3 trips to hospital before the urine tract infection I was diagnosed and sent home with was twice already was reconsidered and I was scanned revealing the clot. Almost killed me however I was lucky. After 5 weeks in hospital and the clot hardening in my IVC blood from the bottom half of my body had to create a new path back to my heart as the IVC vein was now blocked for the rest of my days. 10 years later a haematologist appointment I was told I may not have APS at all. So I stopped taking my warfarin for 15 weeks painful as it was I was determined to do a test clear of coagulants from my blood. I did the test which came back the same as when I was first diagnosed. My haematologist told me that they were still not convinced and have left me now for over a year with no new diagnosis just I’m not convinced. So if I was no longer able to work due to illness what do I tell the benefit dept err I’m having a rare bout of I’m not convinced. Thank you for taking time out to read this
Enjoy the rest of your weekend
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Michaeljenkinson
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I’m really sorry to hear about your history but the good news is that you have not had another clotting event.
If I were in your shoes I would save my pennies and travel (if you’re not close to) to one of the private APS specialists, probably in London. Prof Hannah Cohen is one I’d mention who you could see privately who is a Heamatologist and ran the Trials for anticoagulants for APS. She is also at UCLH on the NHS where they have an excellent APS department that you could get referred to by your GP on the basis of your legal right to have a second opinion.
With your history you are right not to take chances and you should be concerned that you have been taken off warfarin without an alternative and with no explanations.
Just to second Prof Cohen as a great consultant, she and her team have looked after me since summer 2020, my life circumstances are complicated and I spend a lot of time out of the U.K., they have been really supportive. Her role seems to have changed (or at least retitled) and it seems she now only treats APS patients.
I’ve no expertise in the U.S., so can’t help there. On Prof Cohen, if you want to become a patient privately at a distance, then I’d get in touch via the contact on the specialists list here. For the NHS, you would need a GP referral, whether she’d take that remotely I’ve no idea.
My diagnosis was in the midst of Covid, and apart from visits to take (a lot) of blood at the phlebotomy clinic, everything was done over the phone. Getting the diagnosis of a blood clot in your brain and then APS both over the phone is not something I’d recommend to anyone.
I’m sorry to hear your saga. It seems at the moment they are trying to ‘undiagnose ‘ as many APS patients as possible. They seem to be withdrawing anticoagulants from as many people as they can. Why? Has there been an increase of severe negative side affects?
I don’t know about you but it’s not just the risk of a/another blood clot, it is the other symptoms that amplify, the lower the anti-coagulation/INR.
I had to stop Warfarin (now in Apixaban - but that’s another story) but whenever my INR was below 4; I felt ill from my toe to crown. Muscles hurt, energy zero, constant migraines… no more blood clots but I was housebound. No work, no shopping, no housework, no LIFE!!!! Do they not realise that that APS is more than blood clots and anticoagulants are essential to us having any kind of life?
I understand caution is required but come on, don’t we deserve a life- stinted as it is already.
Do search for a doc who has experience treating APS! Blood markers go up and down. Mine have been negative for APS ever since I went gluten free in 2004. But I stay on warfarin and have no symptoms unless my INR goes under 1.7. My internist agrees that with such negative APS antibodies I should have the lowest target INR with no symptoms, but he is reluctant, as am I, to stop warfarin completely. Good luck!
I’m sorry about what you are going through, and totally understand your frustration with the medical profession. My primary care physician will not bother to educate himself at all about APS. Even though I was diagnosed over 15 years ago, after having three full strokes and dozens of Tia’s. I have done a lot of travelling around my province, and paid out of pocket for private health care to be diagnosed, assessed and treated properly. Don’t give up. We are cheering for you.
There are other medical professionals out there who understand you better. Reach out here by letting us know where you’re located and you may end up with a recommendation for a second opinion.
I know it’s really exhausting being your own medical advocate.
I had a pity party for myself on this forum in the past. I felt like a whiner, but it felt good to let it out.
Thank goodness too that I have a psychologist who helped by listening to me. Then educating herself, and finding help for me.
Hi, when my care went wrong, I saved up for a long time and took myself to a private consultant and for my children when they passed the age of 16, it did put my NHS care back on track as I was not getting anywhere at the time. If they have taken you off your medication, they should be monitoring you. MaryF
My titers went negative while in the hospital with a DVT.
”Good news! You no longer have APS!” Hematologist took me off anticoagulants three months later.
Fortunately I had a very good rheumatologist who fought my corner, he a GP continued my warfarin, and sent to to the London Lupus Centre for a specialist consultation to ascertain / verify APS diagnosis and establish care . ( my INR had been set too low.)
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GP reluctant to refer.
Red lumps on leg. 
Recently diagnosed with Primary APS
I AM NOT SERONEGATIVE!
