Low Blood Platelets with Hughes Syndrome?

I just wanted to ask has anyone else got Hughes S. and suddenly got lowered platelets? I,ve got this now, and the g.p. says they will just do odd blood tests to see how it goes. Well thats o.k. but I want to have some dental treatment, and as I,m on warfarin(20years), what should I do, will it right itself? I lightly knocked my hand 3 days ago, and that has still got a fair size bruise,so how have others coped.? I don,t do things by halves, having already got an enlarged heart that beats irregularly, so it,s a bit of a worry. Many thanks.top_hole.

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  • Hello first of all, as Professor Hughes often reminds us, please see his latest blog. Thyroid issues often go with Hughes and Sjogrens and can at times slip through the net with unreliable blood tests... ie your heart status currently! Re the platelet situation: This can be common in both Hughes and Lupus or a combination of both: I include a medical paper for you, I hope this helps. Let us know: springerlink.com/content/g7...

    Mary F x

  • My doctor always puts me on Lovanox 5 days before I have any kind of surgery. Alway quit taking coumadin that 5 days before. Then the day of surgery I take nothing. Next day you start taking coumadin again and also the shots of Lovanox for next 5 days and by then the coumadin is fully charged in your body. Much luck to you and hope you find someone that can help you!!

  • hi Top_Hole

    Here is the latest approved copy for the HSF new website still being written - hope it helps:

    •low platelet count

    A low or reduced platelet count, known medically as thrombocytopenia, is the most common blood related disorder found in Hughes syndrome patients.

    Platelets are tiny cells that circulate in the blood and are essential in the formation of blood clots to control bleeding. The average life span of a platelet is ten days, but when they are lost from the circulation faster than they can be replaced from the bone marrow where they are made, the platelet count becomes low.

    The platelet count in the circulating blood is normally between 150 and 400 per mililitre of blood. Some Hughes syndrome patients can experience a mild form of thrombocytopenia in which their platelet count is usually between 90 and 120. This slightly reduced platelet count does not tend to cause any problems other than a tendency to bruise easily.

    However, in rare cases, the platelet count can fall to dangerously low levels (usually considered less than 50) that result in a condition known as immune thrombocytopenic purpura (ITP).

    ITP was formerly known as idiopathic thrombocytopenic purpura as the underlying mechanism was unknown (idiopathic), but it is now recognised as an autoimmune disorder in which the immune system attacks and destroys the platelets.

    The main symptom of ITP is spontaneous bleeding. On the skin this takes the form of red or purple pin-prick spots known either as purpura or petechiae (depending on their size, purpura being larger) caused by bleeding under the skin. Bleeding from the nose and gums is also quite common, while rare symptoms can include bleeding from the eyes, ears and stomach.

    Paradoxically, this means that people with ITP and Hughes syndrome can have problems with excessive clotting and excessive bleeding.

    For more information about ITP and the treatment available, please visit the ITP Support Association: itpsupport.org.uk/.

  • I am answering this late but figured it would help. Before I was diagnosed with APS I was diagnosed with ITP. i went to the ER one day when I was bleeding from any part of my body blood could come from. When I got there my platelets were at 60k. I was told if something wasn't done I would be dead in 12 hrs. They transferred me to another hospital by the time i got there I was 40k. I was given steroids and a depo shot. It took a lil while to stabilize. I stayed in the 100k for about a year then I was diagnosed with APS. Just this past month my platelets have been going up and down. At one point I was down to 96k. I know when they are down because my heart races, I have crying spells, panic attacks, bruising just by touch literally, and I will have an actual period. I had to have a uterine ablasion to stop my periods because i was practically bleeding to death every month. So now my diagnoses is ITP, APS, Fibromyalgia, and Depression. I am only 32 I have 4 kids and trying to manage this has proven difficult. I hope this helps.

  • Hello dear, I have just had an e.mail from you, and I am really sorry but I honestly can,t remember what I wrote about that relates to your letter, but I have written to health u. several times, sometimes to reply to other e.mails. I have had some of the things you mention , like panic attacks , but that was a long time ago, I,m 70 now. please tell me if I can help, I,ll be only too pleased to reply, from top_ hole.

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