Advice on tests results please

I have just had my test result, my consultant is not sure if my anticoagulant clopidogrel would have made a difference to the results.

APPT/PTT.LA ratio was increased

IgM Anticardiolipin positive

C3 is high also C4

Lupus and Anti Phospholipid Syndrome is being questioned.

Can anyone tell me if Anti Phospholipid Syndrome is the same as Hughs and APS ?

I'm so confused with all of this. Jillymo

16 Replies

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  • Hi there, one and the same, those names, as said before, it is vital that our Thyroid, Vit D, Vit B and Iron is checked and optimal. Best wishes. MaryF

  • Thanks Mary,

    I'm off to see my consultant in Bath tomorrow and just wonted to get things straight in my head.

    Would taking my blood thinner made any difference to the lab results ?

    My thyroid results were ok so my endo tells me.

    Not sure if the vit were done or iron, what is optimal ?

    I shall ask for these to be done tomorrow. Jillymo

  • Just ask your GP to do Vit D, Iron and B, they will talk you through it, and also explain the results. MaryF

  • I will do that Mary, thank you for your help my head is all of a swim at the moment so i cant think straight.

    I'm wanting answer's now as i just cant cope with this curse any longer.

    Jillymo x

  • Hi Jilly

    As I understand it, if your IgM (Anticardiolipin Antibodies) test is positive and has been before too, then you have APS (Antiphospholipid Syndrome)/Hughes Syndrome.

    Who are you seeing at the Min Hospital, I saw Prof McHugh last week, I've seen him and his registrars too, before.

    Let us know how you get on.

    Best wishes.

    Dave

  • Hi Dave,

    Nice to hear from you, what with my son's issues i have not been on the site for a while.

    The trauma of him did'nt do my health any good, in fact it really brought me down.

    I'm seeing Prof McHugh in the morning. I have emailed him a summary of results i'm intending to take with me to London when i see Prof Hughes.

    Going to see Nurse Brown was a good move she has come up with some positive results, the high C3- C4 not that i fully understand what that entails !

    It does look like i have Aps..........it's no wonder they shorten it to Aps what a mouthful that other word is i cant pronounce it. :-(

    When you have your blood tests should you take your meds on that day ?

    I find the prof hard work nurse Brown was so relaxed and easy to correspond with.

    I hope things are ok with you. Jillymo x

  • Lupus is the illness. Lupus Anticoagulant is an antibody that alone,if positive twice, is evidence of APS. APS is also called Hughes Syndrome, Sticky Blood and Antiphospholipidsyndrome.

    If you are on Warfarin the test for Lupus Anticoagulant can give a wrong answer. I have been positive several times before I started warfarin but they do not test me nowadays for that antibody. The others Anti-cardiolipin IgG and IgM and anti-Beta2Glycoprotein 1 can be tested when on bloodthinners and give, as I understand, a correct answer.

    I suggest you buy" Sticky Blood Explained" by Kay Thackray. You can buy it on Hughes Syndrome Foundation charity website. Iti is a very good book about APS. She has APS herself.

    Good luck tomorrow!

    Kerstin

  • Hello Kerstin,

    Although i have had two boarder line lupus results i have not had a positive result but i have always strongly suspected Lupus in regard to my poor health.

    It was some years back 2011 when i lost the sight in one eye for a few minutes, i was told it was an ischemic attack and put on aspirin due to sticky blood. At the time i was on HRT supposedly to support my bones, it was nothing to do with the menopause.

    I had been on it for many years but it was instantly stopped when they found i had sticky blood, i wasn't even weaned off them !

    The aspirin was damaging my stomach so i was taken off it but my sticky blood was not rechecked, i often asked why it was not rechecked but my voice was falling onto deaf ear's.

    At that point i had not heard of Hughes or APS in fact i wasn't even aware i had a mini stroke, nobody had explained anything to me.

    It is only recently the blood thinners have been reintroduced.

    Many years have gone by, i have been seen by various rheumys but they have all pushed toward my fibro myalgia and ignored my symptoms of Lupus including the obvious and prominent livedo rash.

    Is it normal with sticky blood to have this awful fuzzy, dizzy head together with a fullness blocked sensation in the ears, it's driving me to distraction.

    I will purchase the book you have mentioned, not that my brain is capable of taking any knowledge in at the present.

    I will post any positive new's after my appointment tomorrow.

    Keep sending that luck. :-) Jillymo x

  • What you talk of sounds to me like APS, not Lupus (the other illness near connected to APS). I lost the sight in one Eye and I have had Livedo Reticularis. I have APS with all the antibodies and take warfarin.

    We are no doctors here and it is difficult to know what is what (not even the doctors know) but I am so glad to hear that you are going to see Prof Hughes. Well done!

    Take the med as usual if they have not said something else!

    Best wishes and please let us hear how it goes!

    Kerstin

  • Hello Kerstin,

    Today's appointment was in Bath but i cant say i am any further forward.

    I found the prof hard work, i did manage to persuade him to do the relevant

    tests requested ready for when i see Prof Hughes on the 8th of December.

    I'm aware your not doctors on here but at times the admins on here are more knowledgeable than many of consultants i have seen over the years.

    I shall now have to wait and see what the tests taken today show up.

    Sorry to hear you also had an eye problem, it was quite frightening at the time of it happening i was stood in a shop at the time.

    Take care

    Jillymo x

  • I am so happy for you that you are seeing Prof Hughes!

    I think it could be good if you could read that book before you see him especially if the blood it positive.

    Now you have to wait for your bloodsamples Yes many of the doctors do not understand this illness. We have it and it is so important that we tell our symptoms to others.

    I have no doublevision, no Vertigo. I can read and write here. I have not lost my vision in my right eye either since i started warfarin more than 2 years ago. We have to thin the blood to feel good and no doubt some of us have more sticky blood than others.

    Take care and be back any time you want to.

    Kerstin

  • I'm pleased to hear you have not lost any of your sight, i do get the double vision and the vertigo but like yourself no loss of sight.

    It has been a pleasure corresponding with you i will let you know how i get on in London.......i'm sure prof Hughes will get to the bottom of my ill health.

    Jill x

  • Yes, all 3 are the same disease.

  • Hello NanaPam,

    Thank you for your response. Jillymo

  • Jillymo,

    Your brief lost of eye sight is known as AMAUROSIS FUGAX in medical syntax.

    It appears as though a grey blind has being drawn down over a window

  • Yes it was just as you described Maple, it was like a curtain being pulled across from my nose to the outer edge of my eye followed by a slight headache and nausea.

    Mine was a black blind with a slight gap at the very edge of my eye, it was the most strange sensation. Jillymo

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