G.P today to request testing for Hughes syndrome

Good morning 😊

I'm diagnosed with polycythaemia and fibro myalgia, but the more I read about Hughes the more I feel that this is what I have. I'm going to ask my doctor to test me.

A new symptom has appeared and I wonder if it's also linked...I have had three nosebleeds in the past four days. The start with what I can only describe as brain freeze but in my right eyeball, then a short but heavy bleed from my right nostril. My eye is watering constantly and feels a bit stingy. Does anyone else get this?


7 Replies

  • Hi daisy.

    Good luck and let us know how you get on.


  • Hi

    Your nose bleed can be nothing (viral related) or something that may be serious. Hope your GP has checked your BP and thats all normal. I suggest u go and get seen in A&E/ENT team esp. if concerned that it might be APS related. Good luck x

  • Thankyou for your replies. My g.p. thinks they're being caused by a clot in the top of my nose and that I'm long overdue another venesection. Conveniently I had a bleed there so she could see what was going on first hand. Re Hughes she dismissed it as I've got three children.

  • That's what I thought. My youngest daughter is 19, I did have a miscarriage 15 years ago but have had no pregnancies since. My g.p. hadn't heard of it, she just Googled. I'll speak to my haemo about it when I go for my venesection.

  • Have you seen your CBC results? (Complete Blood Counts). What was your hematocrit? My spouse has polycythemia. They try to keep her number down at 46. The nose bleeds can be a symptom of polycythemia. My wife would get those for no reason when she was in her 20's. It's the body's way of trying to get rid of too much thick blood. How do they treat it? Typically with blood letting, aka phlebotomies.

  • I had a blood test on Thursday, the results won't be in until Wednesday as it's Easter weekend. RBC will definitely be high, I recognise the symptoms now. I have been being treated with venesections (phlebotomies) but haven't been to haemo for some months, I think I just wanted to feel normal but simple fact is I'm not so I'll have to get used to it.

  • Hi Daisy82,

    I wonder if you did ask your lovely GP for a referral to Birmingham? You talked about that 5 months ago. But first perhaps you should be tested for it by your GP. I have heard Mary talk about high costs if doing it at a hospital but i may be wrong as I live in Sweden with our other rules re our Health.

    Wait with your daugher till you know if you have APS yourself. We have a lot of  "cousins" like SLE and Sjögrens to our APS. Fibromyalgia is sometimes not Fibromyalgia when a knowledable APS-Specialist (usually a Rheumatologist) hear our symptoms. Only an Expert of APS knows what to look for re symptoms and how to treat us.

    Best wishes from Kerstin in Stockholm

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