Hi everyone. I am here today because I was just recently diagnosed with APS. Triple positive with high levels.
This is hard for me to accept and I am very emotional over this. I am 25 years old and being told that I’ll have to be on blood thinners for life, and that’s the only answer they can give me. Any words of encouragement or advice are greatly appreciated as I’m not doing well with this. Thanks in advance!
Hi and welcome, yes it's very daunting at first, this condition may take you time to get the right levels of anticoagerants for you, but it is very manageable.I too am triple positive with high levels, so you are not alone. For me, I went over 20 years without diagnoses, which is where the damage occurred.
So hopefully, getting your diagnoses young, having a good specialist to work with you, (do you have one? ), you will learn a lot on the way and become knowledgeable to your own body.
Just take one step st a time, share with us your concerns, signs and symptoms, we can then share with you our experiences, which hopefully in turn will give you reassurance and confidence to deal with this.
I'm in the UK, you also have my admin colleague Kelly in America, who will also be a great help to you.
Again welcome
Hello, and glad you’ve landed here, and we well do our very best to help you.
Where are you located?
I’m here in Ohio!
Oh I’m absolutely clueless about Ohio.
University of Michigan has a great Rheumatologist center- and specialist APS research and clinicians.
That would be the nearest specialty center to you. ( Dr Jason knight and his team.)
The main thing now is to keep you diet very consistent … and greens very steady.
You will get the hang of this soon.
It is a very life changing diagnosis- so do het the best care you can right away so you start it off right. That’s so important- getting the best doctors looking after you. It will put you in a better state of mind.
We are here for you!
Do you know if there is a clinic that specializes in APS in Wisconsin? My daughter has high triple positives and currently is not being seen by anyone who specializes in APS. She is 40, found out she had it after losing her first baby at 6 months and much research by myself (thank god for the Internet in that regard). She almost died. Subsequently had a baby while giving herself heparin shots twice a day. We are so thankful for that miracle! She does not want to go on Warfarin, uses aspirin daily. Would love to find a good specialist for her. Thank you. Vicki
Hi
I have the same condition and honestly understand some of what you are feeling I felt vulnerable for the first time, worried about a future I couldn’t control and when I was first told I had to be on warfarin I cried… then when I collected the tablets I put them on the side I gave them dirty looks every time I walked past them haha
I have been on warfarin for 4 years and now and honestly I look at the tablets now and feel grateful.. grateful I know I have the condition so that my risk is reduced.. grateful for science that the tablets are an option. I carry on a normal life that just had the added job of managing any appointments and managing my medication ie I have a tablet reminder app on my phone and I use one of the daily tablets boxes. Routine helps me. I even now am able to think there are worse conditions I could have so more ways to be grateful.
I know you won’t feel any gratitude right now it’s all a lot to take in. Take your time to process and come to terms with it even if that means a few therapy sessions do whatever you need and come here and ask questions as often as you need.
First: I wish I had been diagnosed when I was in my 20s. I had to endure DVTs (with permanent varicose veins) plus dozens, (DOZENS!) of mini strokes which has lead to a loss of my sense of smell, visual problems that took years to resolve, and a fear because I am now at higher risk for Alzheimers.
I was diagnosed in 2021 and have been on warfarin ever since. Yes, it was (and still is) annoying that with that being on warfarin means I have to memorize which foods have blood thickening (Vitamin K) ingredients and which have blood thinning ingredients. Based on concerns given by my doctors, I had to give up potential high impact sports such as mountain biking and I never followed my dream to learn how to ski. But I still hike and walk (a lot!) And my health is better then most people in their high 60s,
One suggestion: I too was once a triple positive. Then, quite by accident, I found I have celiac. Since going gluten free (in 2004) I have aged backward so that now I have more stamina then I did when I was in my 20s. This becomes apparent when I am hiking up steep trails I have visited since my teen years and march past all those fallen trees and rocks where I used to sit and pant while I caught my breath.
Sorry that you are forced to join our "club," but consciously joining the club is better than suffering the consequences of not realizing you are in the "club." As mentioned above, we are all here to help each other. Feel free to question, or muse, or rant. We are all here to support each other!
Cheers!
Hi Gina,
Interesting to read. I would like to know why you think you are now at higher risque for Alzheimer?
Merry Christmas Gina!
Kerstin
You no longer have triple positives?Do you attribute that to going gluten free?
I don't know what to attribute that to. But Dr. Hughes has noticed a correlation between gluten sensitivity and APS. But my essential thrombocytosis ( high white cell) which went away after going gluten free would mean that they white cell count went down as the red cell count went up. that might've played an intermediate factor.
I prefer to say that I am on thinners until there is a cure.
I welcome to a very supportive, (almost club), we all learn off each other on here, please do not feel alone, it really is better to be diagnosed than not to be, there is a lot of signposting to specialists on here and also useful information, you will feel better once you have questions answered as many have been in your position and it is a shock when you first find out, hopefully over time you will feel informed and supported, best wishes to you. MaryF
HI Tsmig And Welcome . you have got some excellent advise already from the best . So welcome from a 13 year vet here . also a Triple Positive person. live here in N. H. get my Vitamin K from a pill 100 mcg daily .It is just easier for me with all other issues i have . many people here to talk to you . Jet
Finally I can tell you that I am also triplepositive with very high titres all the time. I did not like to start Warfarin as that was known to be a rat poison here in Sweden.
The Specialists wanted me to try Warfarin and finally I did. How stupid I had been as
Warfarin has been my lifesaver ever since. But it took some time to get to the correct INR which for me was an INR between 3.5 - 4.0 to be without symptoms.
Important is to have a Specialist.
New to this syndrome and trying to learn
I am new to this aps world
New to Hughes Syndrome 
New here...anyone from Ontario? 
