Hey everyone, usually a lurker but I'm actually looking for advice. Bare with me, a bit of history have had 4 miscarriages, a stillbirth and ectopic pregnancy just recently, multiple pe's 2017 with 3rd miscarriage and diagnosis of APS in 2018. Have 2 living children as well. Anticardiolipin Igm testing was low positive and was tested quite few times after diagnosis and although low, the highest reading being 28 lowest 17 at the time they started me on aspirin 75mg. After my usual haematologist apt the locum consultant thought I should be on thinners for life so I was referred to the national coagulation centre in Ireland and the consultant there says I dont have it and wants to take me off the aspirin now. He has repeated the test but will need done again after 12 weeks. I also clotted in my arm a superficial vein few weeks before I saw him. I was in hospital due to ectopic at the time. They believed the canula caused it as the other arm was going the same way. I was admitted twice so different arm used for canula second time. I am a little apprehensive about this and havent seen my usual haematologist to get her take on it. I know the lab criteria says it should be 40+ and he is working off Sapporo guidelines. Any guidance or similar experiences from people would be appreciated. Thank you for taking the time to read this.
Reversed diagnosis: Hey everyone... - Hughes Syndrome A...
Reversed diagnosis
If I were you with that history, I would NOT come off any anticoagulants and would seek a second opinion even if it means travelling.
Antibodies come and go and many of us do not have high antibodies let alone positive ones constantly. What do they want you to do keep proving to them that you have it by risking your life with further clots?
I hope you find a specialist you can work with and who you can trust.
Thank you star13, I did say to him do they not wax and wane and he agreed but he still said i dont think you have it and dont need medication. I have to drive 3 and a half hours for this appointment and back in October for more bloods. He doesnt trust my own hospital labs!!!! He is one of the senior consultants there and I had spoke with the junior who in turn spoke with him. I asked the junior about the fatigue and she said running after my family would prob be the reason as she doesnt think its associated with APS and the clotting in my arm was because of a foreign body (the canula)!!
I know what Id do if I had to travel 31/2 hours to get that sort of treatment! You can get to London in that time and see someone whose opinion you can trust! I hope you can get to see your original Heamatologist. Id write to their secretary or email them and explain what's going on and ask if there is any way you can be seen. I know going private is expensive, but sometimes it's the best money you can spend to get an opinion and treatment plan that can get you in the right direction. In most cases Dr's will say "who was it who put you on that?" and when you give a respected name they won't argue with it - they may disagree but they won't change it.🤗
Hi, I think you need to follow your gut reaction and yes get further medical advice. With your history and especially clotting on an anti platelet aspirin I would be questioning why your not being put on anticoagerants? You need to try and see your original consultant or seek an APS specialist, our tests results can go up and down but you need reassurance that your treatment is the right course for you.
Tests results alone are only part of the diagnoses, history and symptoms also count.
Hollyheski thank you so much for your reply, I really hope I see my own haematologist before I see him again, she may not agree with him at all seeing she diagnosed me. She had planned to see me in few weeks but no apt yet.
My diagnostic APS numbers have also dropped into what one hematologist called "boring" ( IE normal.) But my very knowledgable internist believes ( and I agree) that dozens of MRI substantiated mini strokes is enough! I remain on warfarin, though we agree my INR goal numbers should be as low as possible without symptoms. I am very fortunate as I have a" tell." If I wake in the morning and the back of my head feels a bit numb, that means my blood is too clotty. Autoimmune reactions (and numbers) fluctuate depending on what pathogens, or undiagnosed environmental sensitivities one is exposed to. My APS plinged to " boring" after I discovered a gluten sensitivity. But I remain on warfarin. I have had enough scary mini strokes! Good luck! And do get a 2nd opinion from a doctor who has experience treating APS!
Hi GinaD, thank you for your reply. I live in Ireland so I'm not sure if we have anyone that is very knowledgeable in APS. I'm sorry to hear you've had mini strokes. That is interesting although maybe scary when u can feel your blood is too clotty. I just have a feeling my numbers will be low and he will just suggest I come off medication. I dont think I will listen to him anyway will consult with my own consultant especially after hearing the advice and experiences given here
I was very interested to read that going gluten free affected your test results. I have definitely felt much better since I did that. I am also very interested in your comments about pathogens and undiagnosed environmental factors and would be interested to know of any information you have on that. I have a hard time with chemical products with strong smells. Cleaning sprays, perfumes, antibacterial soaps I am also affected by air quality particularly the levels of particulates. Thanks for explaining this. It helps make sense of my experience.
Dr. Hughes himself noted a strong correlation with APS and undiagnosed gluten sensitivity. I also had a bunch of reactions to a whole string of drugs and day-to-day cheminals ( like Brillo pads,) It was a suggestion on this site that I may be also allergic to polyethylene glycol ( aka PEG.) When I offered that theory to my excellent internist, he responded," That explains so much! Yes, you probably are allergic to PEG. There are many variations of PEGs, so we can't really test for it. But you might start looking at labels because PEGs are in so many things." I think the most obvious clue to this allergy was my anaphylactic reaction to Miralax and Dulcolax which I took before what was supposed to be my colonoscopy. (Cancelled due to my anaphylactic shock.)
I also profited from following a diagnostic elimination diet, monitored by a Cleveland Clinic nutritionist. Turns out.. I am also allergic to cashews. Cashews! Who knew? Certainly not me. You might explore seeing if there is a nutritionist who might help you explore an elimination diet protocol to identify food sensitivities. The diet is annoying and hard to follow. Requires commitment. But the end result of identifying and so avoiding food " triggers" is well worth it. Yes, I'm getting old, but as far as energy levels are concerned, I feel better at 68 then I did at 28!
hi. I had to fight to stay on warfarin. I had a hematologist that wanted to take me off of it years ago. I switched to a different doctor. My gut was right to fight, as I have had clots in my eyes and a softball size aneurysm in my left renal vein half filled with clots since then. The vascular surgeon said I would have died, if I was not on warfarin, as I would have thrown a clot out of it. That was 12 years ago. I am so blessed
Trust your “gut” not the doctors. Keep advocating for yourself.
I think you need another opinion, it does not sound as if this member of the medical profession understands this disease. If you can't get hold of your original consultant, ring his PA, get their email address and write an email to that address, marked urgent for the consultant and put in bullet points what has, and what is happening to you. MaryF
I was diagnosed with APS 10 years ago I am in Ireland. My Consultant had me on Warfrin for 8 years and worked extremely well. I then had usual follow ups and because my readings for APS was so lo after 3 tests, he put me on Asprin, which I was delighted with, but with the warning that APS never goes away 100%. So will still be monitored. All the time on Warfrin and Asprin never a bleed. Recently developed AFib. and the Cardiologist put me on Rivaroxaban....which I saw through here is a definate no no. I have had 6 bleeds now in my mouth, assuming dome part of my gums and am terriffied. Told my GP, told my Rheumatologist, who said he woud write to the Cardiologist, who is across the hall. Sent an e mail to the Cardiologist myself, outlining my serious con erns about this. A full week on, nothing. Have flu at the moment, and am terrified every time I sneeze I will start a bleed in the mouth or somewhere mote serious. If I dont hear anything by lunchtime I will phone.....it is dreadful to be this frightened by a drug u should never have been given in the first place.
So sorry you are experiencing this. I have a similar issue currently. So many people seem to have to deal with doctors who dont know enough about this condition and are using classification rather than diagnostic criteria. I agree that going private to one of the top specialist, someone recommended by other patients is a good plan , if its possible for you. It shouldn't be necessary but there is a real failing here in the NHS unless you can access someone good locally. It is worth a letter to your original specialist if you feel they are a doctor who is empathetic and knowledgeable. I find that getting things written down in advance has bern helpful.
Please let us know how you get on.
Ann
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