Question regarding hughes syndrome

Question regarding hughes syndrome

I was diagnosed as being positive for a blood clotting disease, ( clot too much ) following multiple late stage miscarrages.. I was told nothing to worry about unless I am pregnant, this was 17 yrs. Ago I have no info on what it was called.. but upon reasearching this I think it may be a match.. except I was tested one time.. my kidney specialist who ordered the test stated that like a 20 was positive and I came back 27 I believe... most of my doctors look at me like I'm crazy and don't really seem to believe me.. and one even s aid blood clotting has noyhing yo fo with miscarrages.. well , I know this happened ( the test) and my husband was also present.. I feel compelled to state this anytime I am in the er or surgery situation... although I fo not know tge exact name or have any info on the pisitive test or diagnosis... I don't really know what my question is...just looking for info, suggestions, and symptoms

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  • Hi there and welcome, where are you located? These are the blood tests which you need to do, preferably at the hospital as you don't want the samples hanging around for collection do to being a bit time sensitive. hughes-syndrome.org/about-h... If you do have this, which is very likely, you need a specialist to guide your GP, somebody with the entire knowledge of the condition, no half of it, we have a database of recommended specialists across the UK. If not in the UK, I/we will still endeavour to help you. Other blood tests needed are Vit D, B12 and iron, plus a full Thyroid

    panel.

    You will find by exploring the link I have sent you, some very useful information on the charity website.

    MaryF

  • Any in Northern Ireland?

  • Unfortunately no, many try and get their GP to refer to London, St Thomas' Hospital or self refer to London Bridge but this is private and costs, but if you get your GP to do the relevant blood tests it does keep costs down. MaryF

  • Hi I was diagnosed with hughes syndrome (a form of lupus) after two miscarriages ( real name for syndrome is antiphophilopid) I was told this could be a contributing factor to my miscarriages and that I would be prescribed blood thinners if I become pregnant, they said I would have 80% chance of carrying a baby. Ask your gp for a lupus blood test.

  • Autoimmune diseases can be tricky to diagnose and treat. The more systemic the disease, the harder these things are. and APS is a systemic disease because the circulatory system goes everywhere.

    Blood values can fluctuate. A lot. I've been cooking this morning, so I'll use a cooking metaphor.

    The immune system measures certain activity levels in the blood. When a certain level is reached, the immune system heightens its attacks. Say -- when the cup reaches the one pint level. Some days the thing you are really allergic to, or the " part-of-you" thing your immune system has mis-identified as an enemy, is only at the half pint measure.

    But then you go to the salon for a hair cut and breath in all those fumes. Then a person with a bad cold sneezes right beside you. And that bus reeking of diesel fumes roars past. And now you cup of antigen levels is overflowing, and the blood work that was negative yesterday is now positive and you're ripe for a clot!

    Now since pregnancy involves hosting another being with a lot of DNA which is not yours, and since your immune system is also being extra careful during pregnancy, we are more likely to form clots and be diagnosed during pregnancy. It's like that immune measuring cup is always 3/4s full so it won't take much overfill it.

    And indeed some patients do indeed only experience APS issues during pregnancy. But not all! And many doctors only expect to see " standard" APS symptoms of DVTS, PEs, heart attacks or mini strokes. But the circulatory system goes everywhere and the issues which provoke your specific immune system may cause your immune system to make its attack on blood found elsewhere. Hence the importance of consulting with an experienced APS doctor.

    I would suggest reading up on APS, finding a recommended APS consultant, but also reading up on autoimmunity in general. Nothing has been proven yet! -because the interactions are so very complex! But my belief is that the fewer chemicals I am exposed to the less likely it is that my immune system will get pissed off by something and go on a " collateral damage be darned!" attack.

  • Hello,

    I see by your picture that you may live in Oregon?

    If so I do also and I have been diagnosed with APS and Lupus non specific and have gone through the ringer to find the answers and anyone here in OR that really knows anything about the complexity behind this disease.

    If you would like, you could message me and I will send you contact info for doctors that I currently go to in OR.

    I too had many miscarriages as a younger woman and an ectopic that burst. Only to find myself with a "blood disease" that caused DVT's and PE and hemorrhaging in India that led to almost my own death twice now in my lifetime.

    It took the Oregon doctors so many years to diagnose, even after all the current episodes this last time in December 2012. I am now on Warfarin and agree this is the correct drug of medical assistance for my life, it keeps me here on this planet, I truly believe that.

    I also have a self monitor machine and a strict regime that I adhere too most always with the occasional holiday diet woops.

    Message me and I will give information for docs if you are in my area

    Best of blessings to you on this journey, there is hope and there is support on this site if you lean in and listen to those here. I have learned so much, so much and found a strong support here on this forum.

    Becca

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