Blood test results confused!!

[Anyac81]

Hi all just a quick question about the blood test to diagnose Hughes

I've been poorly a while, I have scle and fibro, and positive d-dimer pretty much all the time, sooo anyway, after a trip to hospital with suspected pe, they talked about possible sticky blood syndrome

I had the blood test, and they said I need it done again in 12 weeks as the Lupus one was positive (I know this has nothing to do with lupus) just a confusing name! And the other two (I can't remember the names ) were both borderline?

What does this mean? Should I be concerned or is it likely I don't have Hughes? They didn't offer much advice to be honest 😳

Any thoughts greatly appreciated

A.c x

[Anyac81]

Hi thank you for the information, it's all very confusing! The hospital gave me a few shots of fragmin and I did feel much better for a few weeks, The hospital sent me to the Rheumatologist in the end, he didn't seem all that interested to be honest, I'd like to see a autoimmune specialist for the lupus/ and other issues but my Gp won't refer me, I'm not sure how much a private consultation would be? I'm in West Sussex, uk

I know my vit D is 20, pretty low I think? I don't know if Ive had my thyroid looked at? They are very cagey at my Rheumatologist appointments, I get fobbed off a lot unfortunately 😐

A.c x

[Wittycjt in reply to Anyac81]

Are you at least on low dose aspirin now?

[Anyac81 in reply to Wittycjt]

Nope, I will ask my gp, I've heard lots of people take a low dose for various reasons x

[Lure2]

You have had excellent answers from APsnotFab!

I wonder when you are going to take the second bloodtest for Lupus Anticoagulant and the other 2 antibodies they test for HS/APS, as if they put you on Warfarin it is not possible to take the second test for LA (Lupus Anticoagulant) .

I also think you have got HS/APS especially as you felt much better after the shots of Heparin. I can not understand why they took them away because on Heparin it is possible to take all the second bloodtests included the LA. Heparin is an anticoagulant.

Stay with us. It is good to get a diagnose and you need a Specialist as soon as possible as APsnotFab suggests.

Best wishes from Kerstin in Stockholm

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I just sent a screen shot of some old blood work results to the email for Doctor Hughes on his blog site and the wonderful man actually read them and explained them to me... I couldn't believe it! Maybe you could do the same. Who better to get an explanation from than Graham Hughes himself? My doctors all said "borderline" as well. Which confused me too.

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Since we are on this subject and I am in a similar situation. Do you know of any Hughes Specialists in the US in Ohio I could check out. I am near Dayton which is closest to Cincinnati or Columbus as the two biggest cities I could reasonably get to. Cleveland is a very far drive for me 6 hrs.