Sticky Blood-Hughes Syndrome Support
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Education

Can someone suggest the important points about Hughes that I can tell my GP? I am interested in the thyroid tests and the three conditions that goes with Hughes (like thyroid)? I plan on seeing my doctor and getting firm with him today because I seem to have been left out on the back burner. He still has not booked me in for another visit with the specialist and it has been six months since the first and only visit. I need help from that specialist now, not a year from now. Thanks

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If you are in the UK, make sure that your GP refers you to one of our specialists off the list of recommended specialists, you can find that over on the right hand side of our forum under pinned posts, if you scroll down. There is no point being referred to somebody who only half understands the conditions.

Your GP needs to test your D, B12 and Iron, plus Thyroid, however your GP will probably only do the TSH which is highly unreliable, most of us who question our symptoms do private testing which is far more detailed and accurate. Your GP can also test you for Sjogrens Disease, if they are being thorough they may add in other tests which act as inflammatory markers.

Some of us opt to go privately and self fund the odd appointment at the London Lupus Centre, which has helped get our care back on track, some also take along to the GP appointment their most articulate friend, colleague, neighbour or relative to back them up.

I bought all my GP's books written by Professor Hughes, same for my children's Paediatric Department.

Your GP needs to also know that people with Hughes Syndrome/APS often require a higher INR.

MaryF

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The three antibody tests your GP needs to do (at the hospital) are:

anticardiolipin aCL

Lupus Anticoagulant LA

Anti beta2 glycoprotein1 anti-B2GP1

The two other conditions that run with Hughes, making the Big 3 is Sjogrens and autoimmune Thyroid Disease.

Many of us can also have other autoimmune conditions like Celiac Disease or RA.

Its important to make sure your Thyroid tests are done properly including the two thyroid antibodies, FT3 and FT4. Add into that Ferritin, B12, Vit D too.

Ive just done mine on Medichecks who group a lot of these tests together to make it cheaper. Ive also noticed they do the Antiphospholipid tests above as a group of 3. So if your GP refuses and you can afford it then perhaps thats an option.

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Thanks for your fast response and I have made notes to take with me. I live in Ontario, Canada. I have a specialist in London, ON who diagnosed me as LA but never got to go any further so thank those who have replied. By the way I read some postings from a couple of years ago about tiny blood spots on the skin. As far as I am able to discern these may be linked to Hughes, is this correct? Thanks

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Can you post a picture? Where are these blood spots?

It is impossible to diagnose even with pictures. Please note: Only a doctor can diagnose you. The information given is simply for information and not any attempt to diagnose.

Petechiae/blood spots: Petechaie, or blood spots, are round, red spots that occur as a result of tiny blood vessels called capillaries bursting under the skin. They are flat to the touch and can sometimes look like a rash. They are caused by a range of things, including injuries, straining and sunburns. It can be caused by a blood clotting disorder.

Thrombocytopenia (THROM-bo-si-to-PE-ne-ah) is a condition in which your blood has a lower than normal number of blood cell fragments called platelets (PLATE-lets). Platelets are made in your bone marrow along with other kinds of blood cells.

Easy or excessive bruising (purpura)

Superficial bleeding into the skin that appears as a rash of pinpoint-sized reddish-purple spots (petechiae), usually on the lower legs but can be anywhere on the body - I have on my leg, arms and chest.

There are other symptoms in severe cases.

mayoclinic.org/diseases-con...

(with pictures)

Many patients with SLE (systemic lupus erythematosus) have thrombocytopoenia. Usually, this is nothing to worry about, even if the platelet count drops to 80,000 - unless one takes a large knife to oneself. The usual count is between 150,000-450,000. My count was 80,000 taken just before my last spinal operation.

This is from Guy's and St Thomas' on Immune Thrombocytopenia:

guysandstthomas.nhs.uk/reso...

My recommendation: take a picture or better still, take yourself off to your doctor and get the reassurance you need, which may include blood tests.

Sometimes you may need a special or specific blood test in order to get an accurate platelet count because the platelets can stick to one another. Your rheumatologist can recommend this test if necessary.

patient.info/health/immune-...

With good wishes,

Ros

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That is great that they are doing them, news to me, and great for those who have doctors not listening. MaryF

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For the first time EVER I am at a loss for words. I actually feel like I am suppose to be low class or something by the way Dr. Kovacs ,(specialist) who says he "will probably do nothing" for me. He has said he will no longer see me because I missed 2 appointments, that I wasn't aware I had.

I don't know if I have the right but I feel angry, rejected and just plain upset! This is my body and I don't want to have a stroke or get worse or anything that comes with this illness. I got a copy of his consultation which says in part ,......

"Problems

Arthritis

Previous Roux en Y surgery

Postoperative mesenteric thrombosis with query pulmonary embolism, anticoagulated for twenty two days

Postoperative bleeding after nernia surgery

Elevated PTT with positive lupus anticoagulant .

She had previous obesity and had surgery for that. Postoperatively she had a mesenteric thrombosis and embolism according to her. Although she was anticoagulated in hospital, so I am not certain". (He then goes on to mention the hernia surgery and how I wasn't told about the blood while on the OR table but he adds that .....) "Which is fairly odd."

"On exam she appears well. There is no significant swelling of her legs today. She is not dyspneic.

This lady has divergent things going on as potential explanations for her high PTT. She has clotting and bleeding and has lupus anticoagulant ........ I would also investigate her for bleeding and other causes of high PTT. I am going to get an ultrasound of her legs to see if there is evidence for venous thrombosis in the past. I will see her in six to eight weeks to review all the results and decide what to do after that, which is probably going to be nothing."

My GP does not know what to make of this so he won't do anything except do the thyroid tests you told me about . He asked me to check with this group to see if anyone knows of another hematologist in southern Ontario who works with Hughes or if any one on this list lives in my area as well.

I don't know if I am reading this the wrong way but it feels like he doesn't really believe me and doesn't think I need any treatment. The three grand daughters we are raising feel strongly on my value at least to them. Just frustrated and don't know what I should do.

Sharron

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Go to APS-support.org.uk. You may find. This information there, good luck

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I checked that page and did not find anything for Canada

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Also I cannot read the pages since they all come up with "unable to read"

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APsnotFab can you assist here? This seems she may be in a dangerous way? Thanks

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