Hi everyone,
I've tested positive for aps. The doctor said it was at 1.4. I have no idea what this means? Would anyone know what the 1.4 means? From research all I can find is it could be the INR? But what does that even mean? The Dr has put me on 75mg aspirin daily. I'
Whoops hit the post button. We are trying for a baby and after 3 miscarriages wondering if 75mg is going to be enough? Any help will be very much appreciated 😊
HI, he/she was probably testing your INR. If you are trying for a baby with your history of miscarriages, you need more than Aspirin, most of us have had Fragmin injections or similar. If in the UK we have a list or recommended specialists over on the right hand side of the forum under 'pinned posts' area by area. This will not only be better for you, but better for your GP, also here is our charity website which also carries some specialists, please look at both. ghic.world/ Welcome by the way. MaryF
Hi thanks for your reply. I was referred to assisted fertility clinic but because I'm 27 he just sent me away for another 6 months. I asked about aspirin and the specialist said don't bother. I wasn't happy with this so I spoke to my Dr again who said to take aspirin daily and was shocked the specialist hadn't even suggested it. I feel at a loss. What sort of specialist do you think would be best? Do I just ring the Dr and ask them to refer me? Thank You xx
You need to look at the specialists in your area and show them to your GP, ad the charity website, they clearly need to become more knowledgeable about this disease, a good GP who was informed would refer you to the correct obstetric team to give you the correct support in pregnancy. MaryF
Thanks for your reply. I'm currently just taking 75mg of aspirin. I'm going to look into being referred elsewhere. To be honest I really need to change gp as mine are really useless and very unhelpful. Thank you so much for your help I have made a note of everything you have mentioned and will talk to the Dr about it. Thank you xx
Hi thanks for replying to me. Yes it was the lupus anticoagulant that was positive. I was under the impression that I needed another blood test to confirm but the Dr said I will just have another test when I fall pregnant. Honestly they are really rubbish! Congratulations and I'm so sorry for your losses. Did you just take 75mg of aspirin? The Dr has told me to start taking it asap while we are trying as he said if I start after bfp it could be too late. Do you suffer or did you suffer from any symtoms of aps? I have suffered things for as long as I can remember but just put it down to bad circulation or not drinking enough water. Thank you for your help xx
I started aspirin after I fell pregnant but that’s not best practice. I didn’t know back then that I had APS. Although I have 3 children my final pregnancy did end with a placental abruption (thankfully my daughter is ok) so I would advise finding a knowledgeable Obstetric Dr who can help you.
From what I was told recently it is unwise to test for LA whilst pregnant as the pregnancy hormones can affect it - I can’t stress enough how you need a Dr who really understands the condition and can give you the best advice.
Unfortunately I ended up having a spinal cord infarct (stroke), several TIAs (mini strokes) as well as a whole range of other symptoms and complications. I’m now on warfarin and immunosuppression drugs to keep my symptoms under control (not always possible!).
Good luck.
Kelly
Hi,
As I understand it and like MaryF says the Doctor was probably testing your INR. Most people have an INR of around 1.0.
If you are not pregnant at present I suggest you take that second Lupus Anticoagulant-test as they need it taken twice with 12 weeks between the bloodtests to get a diagnose of APS. Also if you start warfarin later on you can not take the second test for LA.
Best wishes from Kerstin in Stockholm
A haematologist and a rheumatologist who both understand APS is who you need to see.
Tips:
Prepare yourself an A4 folder tgat you keep up to date and include the info below and hospital letters. Add dates to everything.
When you go please take someone with you to make sure you ask all u need to and who can jot down the answers & responses.
Ask them to clarify things you don't understand. It's ur life u need to understand.
Prepare well for each appointment - sit down and write s list of questions. Type them in order of importance. Have three copies one for the specialist, one for u, on for ur supporter.
Print off an A4 sized body outline, mark on it every symptom you have even if you think it's unrelated. Take a copy for the specialist. (Including emotions, sleep pattern, depression, concentration...)
Type up a table of medications, (even over the counter & herbal & vitamins) their doses, when you take them and the reasons. Take a copy for the specialist.
All this will really help them and will save so much time having to do it all at the appointment. Especially if, like me you get emotional!
After the appointment write up ur notes and file them.
Don't forget to listen and thank them if they are doing their best.
I have to take Warfarin and Asprin and sometimes Clexane too. Warfarin is the only thing that protects against clots in arteries and veins so the new meds aren't useful for us.
Find out what to do when pregnant & trying for a baby re APS. I thought it was Clexane/Fragmin.
Ask for B12, iron, folic acid and Vit D blood tests as well as the usual autoimmune screening. If ur GP can do that that's great then you can take the results to ur appointment. (Keep a record of results in your folder)
Take ur folder to all appointments for reference.
I hope this helps. Keep fighting u will get there. Good luck 💋
Hi Heidi - how did your DR's come to the APS dia. I mean have you had any clotting going on or any other symptoms - Your 1.4 is your INR count when i assume you had your blood draw - now depending on any other problems such as clotting - migraines - or any others listed on our documents on here which can be found in the bottom of the GHIC page - select Antiphospholipid on the above head liner Then scroll down to the boxes and actually start reading all that material as you need to understand this info yourself so you can better identify with you Dr. - ZIs your Doc. knowledgeable of APS if not check the lists available on here . also we have a SUPERFABULOUS crew on here that would be more than happy to assist you Although we are NOT doctors and can't treat you we can help you thru all the processes that do come along with this disorder . Like I said YOU need to learn this yourself as you need to be your own advocate dealing with APS .. There !! any questions after reading ALL material we are here for you . Have a great day . C & J
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