My sister tested positive for anticardolipin

Hi My sister tested positive for anticardolipin! She will b retested in 3 months! She has a thyroid condition and tummy problems too! Does this mean she has APS! I want her to start on baby aspirin as a precaution! Doc said will retest in May! We are very upset, but knew my mom had it! I'm so sorry for my sister and I'm sure, Mary u will hear from her soon! Why do we both have to have it! Her blood clotting factor was normal! That don't mean anything I don't think! I feel like I gave it to her! I'm beyond words! I'm sure my Mom did have this! Many miscarriages and blood clots at an early age she had! Alway something going on with my poor Mom too! My mom had shots to keep my sister and I inside! I was a DES BABY ANDalready had cancer of cervex at age 27! I expect her to test positive in May cuz the fact that she tested positive now and I have same, I'm concerned! She's never had a blood clot tho! So maybe she will b one of the lucky ones and NEVER get a clot! It says that in "STICKY BLOOD," Book by Kay Thackray! Anything you can tell Nanny 23 and me will help! Her B12 was good!

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  • Hi yes, and keep testing, and she will probably be told to take Aspirin, with your strong family history, which of course came from your mother in this situation. MaryF

  • Ok thx so fast Mary! My sis had low dose aspirin! Her doc knows nothing about APS and said he'd look into it! Yea I believe that like a hole in the head! He'll forget wen she walks out the door!!! Shud she take whole aspirin as precaution or baby aspirin!

  • I/we can't advise on medication, it is beyond our remit on here, however I myself take 75 mg of Aspirin - (baby Aspirin),

    one in the morning on a full stomach and one in the evening, however I have had clots in the past, I know some people just take one a day, but she has you to keep an eye on her. MaryF

  • I agree with Mary. Dave

  • Its very possible that your sister will test positive in the next test and with the strong family connection will be diagnosed with Hughes Syndrome. However just because she is, does not automatically mean she must think she is suddenly going to get symptoms if she is symptom free at the moment! So far she is ok and there is a vein of thought that some ladies are only at risk when they are pregnant but this is such a new condition that its difficult for them to know for sure because those dx whilst pregnant in the early 80's when this disease was first being discovered would only now be in their 50's and possibly not got to the age when a return of symptoms like strokes may appear. So perhaps they cant say that for certain just yet. Those put on Aspirin are probably being protected and as more knowledge comes about then we will all benefit.

    So I would not press any panic buttons and just carry on as before. Its good that she knows she has a thyroid issue so that can be treated. If she has stomach issues then cutting gluten is a good idea or even before she does that get tested for CD first and then cut it. Thyroid and Hughes can go hand in hand with Sjogrens as a trio. Thyroid disease is also linked to CD so you can see the links to autoimmune conditions. Not everyone has them all but its quite common to see it together.

  • Thank you so much! What is CD? I know about Sojerns, but not CD! I'm being bad and have put off bein tested for Sojerns, but now because I'd my sister I'll b sure to get tested! My sis and I bit lost our sons and she has had Breast Cancer! She had lobular in one breast and ductal in other! She's almost sorry she got tested! I forced her to and went with her! Thanks to all of you we were able to bring the tests the doc shud take! She's exhausted all the time and has had a pain in her stomach for years, undiagnosed! I've asked her to ask her doc to check other organs for where that pain is coming from! I'm so glad she is symptom free! Any help is greatly appreciated! Bless u beautiful lady!

  • CD is Celiac Disease. Its linked in with Thyroid Disease but prof Hughes always would tell his patients to stop eating Gluten as it can help with symptoms. Also Gluten is a general inflammatory agent so anyone with autoimmune conditions or tendencies would be advised to avoid it especially if they have stomach issues. I would however ask to be tested for CD BEFORE stopping eating Gluten because you have to be eating it in order for the test to work. They can do blood tests to look for antibodies, also if you carry the genes but the gold standard tests are the biopsies which will involve doing a scope....sorry! It is good to know if she does have CD though because not only is it important from the gluten side but CD can cause other issues if not dx like non-absorbtion of nutrients which can then lead to other issues like anemia and osteoporosis.

    BTW I feel I must clear up my picture on here. It is an avatar so not of me (I wish it was) but of a famous british actress called Joanna Lumley - she is indeed beautiful. She starred in a british sitcom called Absolutely Fabulous or Ab Fab for short. If you notice my name on here is a take off of that geared to APS which is why I use her picture. She is a hilarious character and I just thought it would bring some fun, just as Mary's photo is of another TV character called Mrs Slocombe from a sitcom called "Are you being Served", which was again hilarious!! These can all be found on the BBC. You should take a look they would brighten up a boring bad day!

  • Oh wow that's Hilarious! You and Mary are very funny! I laugh alit too, so I don't cry! Lol... I joke about loosing my leg! The call me Ilene now (I lean) or Peggy! I find it breaks up the part where people feel uncomfortable and don't know what to say! I say it and it breaks the ice!!! We must keep our sense of humor in all this or we shall go CRAZY!!! Thank you for all your input! INSO very upset about my sister, but am glad she knows now and can take much needed precautions! She won't get like I did! I will make sure she doesn't!!As Mary says, she has me to look after her and for sure I will!!! GODSPEED!!!

  • Hi Debb,

    Already written to your sister. If she has stomach-problems the double doze of Baby-Aspirin, 2 x 75 mg, could perhaps be a little too much. I took only 75 mg and my Hematologist tried the double doze but it did not help at all. We are all different of course. Take it with food!

    It is good that you stick together and help eachother.

    Kerstin

  • please try to stop "stressing"...I was diagnosed with APS at age61...."factor"(never remember what this number is called on Lab test) was 25.(anything above 10 means + APS)...25 according to my Rheumatologist is on the "low side of sticky blood"...prescribed 4 baby aspirin a day and a year later added Plaquenil......tests my blood every 90......so far so good 6 years later....."factor" ranges 9-11 feel great and have never had a mini stroke

  • eating a teaspoon/tablespoon? peanut butter can prevent upset stomach...also re: baby aspirin....its the "filler" that can be low quality...try Bayer or Pharmacy brands....I never buy anything I ingest at a $1 store...

  • Good advice! I know my sister will b ok! She's never had a clot! It's genetic and I'm positive my Mom had it! I'm glad now she knows so she can take preventive measures! Thx again! Are u from USA Luisa?

  • Hi Debb,

    You know what; I do admire your spirit!!!

    Love from Kerstin

  • Awe thx! I think I get my strength from all of you! Although now I'm kind of overwhelmed with having RA/Rheumotoid Arthritus! Dr. ERKAN wanting me to get genetic testing cuz he said I have a lot of hereditary issues! Luisa said its only bloodwork and gives them a baseline! Not sure I'll do it! Wen I get overwhelmed I do nothing, but put it away for a bit so I can get strong again and rejuvenate my mind and body! I'm suppose to go to 4 different docs then put all those reports together and go bak to him and work on a plan for me! I never expected for him to say how complicated I am! I knew I was complicated, that's why I've been dismissed by so many doctors! I just figured he was the answer to all my issues! Unfortunately real life doesn't work that way! I guess I was just dreaming or having this super positive moment that all wud be just fine! It'll just take me a bit to invest this all and come back stronger! My brain on overdrive now! It just needs a slight rest!!! Thx for having faith in my spirit!!! You r greatly appreciated!!!

  • I think you should trust this Specialist because I do believe he wants to help you and have the power to help you also. We have heard from others that he is very capable. Let him take bloodsamples if he wish. The hospitals do research on us especially if we are unusual cases.

    He will as you say, send you to other Specialists (he can not know everything himself) and collect their answers and finally he decides what symptoms that have to do with your APS for example. My doctor do the same. I have a lot of Specialists who help my APS-doctor with exams and Scans etc etc. I stay with my own Specialist of APS and feel secure.

    When he have the facts he is able to give you the right drug. Hold on to him.

    Hope I am right with what I have just said but I think I am.

    Kerstin

  • Yes u areKerstin! I'm just overwhelmed and hibernating and don't want to know anymore about me right now! Everytime I c a new doc I got a new disease! It I go thru genetic testing, I'm just opening a can of worms! In 2 weeks I may get past this state I'm in and move on, but now my body and my brain have to go into what I call shutdown mode!!! It's my way of rationalizing what happening and what I'll do! I just want to lay in bed and shit the world out! I'm sure many others have felt this way at some point in their lives! I'll keep in touch here because it's only place to go that truly understands! Love you all!!! GODSPEED

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