Hi Everyone,

I'm hoping someone can help me, my mum has APS too and we have just got back from A&E. We went there as the GP had diagnosed my mum earlier as having pheblitis on her left leg. She has had pain behind her knee all day.

We went to A&E just to be sure its not a dvt, they did a blood test, D Dimer I think thats what its called and that was raised. They also did an ultrasound of her left thigh but not her left calf. They said they didn't need to scan the calf as clots in the calf are nothing to worry about. Does this sound right to you?

19 Replies

  • It sounds like there may have been some superficial clotting in the smaller veins which perhaps accounted for the raised D Dimer. Your GP was spot on so that was good. Not sure about the comment about the calf though but Im wondering if this is a misunderstanding. A deep vein thrombosis is in the calf where as Phlebitis is superficial clotting in the veins and perhaps this does not occur in the calf veins.

    Anyhow here is an article about Phlebitis. I hope she feels better soon.


  • Thank you for getting back to me, this was my confusion too. We went over to a&e to rule out a dvt in the calf, the hospital doctor felt a tenderness in the calf and wanted to be sure, so put mum in for an ultrasound but then the lady only scanned the thigh!! Really don't know what to think but its reassuring that the d dimmer test can be raised in phlebitis too.

    Thanks again, really appreciate it X

  • I had a similar incident myself earlier this year and ended up in the Acute Medical Unit of our local hospital. My pain and swelling was lower leg. New hospital protocols dictate that they now only scan from groin to knee. If a clot has travelled north of the knee there is a massive risk jump up to it causing problems with your heart/lungs/brain. Therefore if there is nothing found in that area it's consisered to be much safer. If you're mum is on anti coagulation meds they probably deemed ok to send home. Hope that helps?

  • It really does thank you. But it hasn't take away the worry she's only taking aspirin and was meant to start heparin but the nhs being the nhs its taking forever to sort things out. She saw a GP in her practice yesterday who diagnosed the phlebitis and explained all of this to him and the increasing worry of not being on heparin. His reply was, I don't know you, your not my patient!! She's really not well so I'm off to see her own GP this morning to see if I can sort something out.

    It's scary how they don't appreciate the seriousness of this condition. Thanks again X

  • Can you get your surgery to give you an email address, address the email to the GP's secretary marked for the urgent attention of the GP, include the link to our charity website, and say that with the Christmas break coming up, the responsibility of helping your mother with scanty hospital staffing is a real worry, could they please help speed up the implementation of the heparin being started! Most surgery's will give you and address for clerical staff! Mary F x

  • Hi, i don't want to alarm you but in 2004 I had pain in my legs and an ultrasound was done on my ankles to test the circulation and I was told everything was ok. After nearly 4 yrs of pain and loads of different tests i asked for a 2nd opinion with the circulation and had another ultrasound. This time they did it from the ankles to the groin. After which they got me in quickly for an angiogram and found a clot in both legs. It was, by this time , too late to do anything about them and I lost both legs below the knee. In answer to your question "is this right" I would urge you to go back if your not happy.

  • Yes I agree with this! Also my comment above yours, push the GP, and also go back to hospital, I would take not chances if not happy. MaryF x

  • Thank you for your advice, I took the new GP leaflet with me and left it there hopefully she reads it!! She contacted mums consultant about starting the heparin but he wasn't there, he'll be back Monday, fingers crossed mums on it before Christmas, Thanks again Xx

  • I am very pleased to hear this, and thanks for the feedback, have a great Christmas. MaryF x

  • Thank you so much for replying, I'm so sorry for what happened to you thats awful. They have said if the pain persists for another 5 days they will scan again and if its only thigh to groin, we will pay private to make sure, thanks again Xx

  • Thank you so much for replying, I'm so sorry for what happened to you thats awful. They have said if the pain persists for another 5 days they will scan again and if its only thigh to groin, we will pay private to make sure, thanks again Xx

  • Hi I honestly don't want to worry you, but I had Phlebitis and was on medication for it (Not anti-coagulants or aspirin) It got a little better, then a few weeks later I got a DVT in my leg that went to my lungs, it was after this that I was diagnosed with blood clotting issues, then later tested positive for APS. If you/your mum are not happy I would go back to GP as someone else has mentioned the break for the holidays is coming up soon. Just because this happened to me, does not necessarily mean it will to any one else, but I felt I should mention it. Please keep us all posted. X

  • Thank you for responding, so sorry about what happened to you. Really hoping things get sorted for mum next week, hopefully she'll be started on heparin and if pain persists and not happy with the scan we'll definitely pay private, with everyone's experiences I'm not prepared to take the chance, thanks again Xx

  • Don't want to alarm you but I had a clot in my calf which nearly lead to me losing my leg, if your mum should get any strange feeling in calf like heaviness go straight back to A&E

  • Thank you for replying and your advice, we will definitely go back to a&e if things change/worsen, thanks again Xx

  • I echo what Lissylou said above about the NHS protocol.I recently suspected I had a calf clot and had two NHS scans but neither investigated the smaller calf veins where I had my previous two dvts.It was only when I went private that the scan was detailed enough to establish that I was fine.My advice would be to go to your nearest large A & E on Monday(no point going at the weekend as the scan department will probably be closed-mine was) complaining of worse pain and plead plaintively with the scanner to go below the knee for the reasons mentioned above by Mary.Of course the ideal would be to go private but I appreciate not everyone has the resources or insurance cover to do so.At my A & E they took my INR which I had also done (i waited three hours for that!) and said that the d dimmer test was worthless as it might be influenced by a slight knock against furniture and a negative reading would not be definitive.

  • Thank you for responding, it seems a crazy protocol, mums GP said they do this because of false positive clots in the calf? How do you ever diagnose a clot in the calf then, crazy!! Because of everyones experiences we will definitely pay private especially as its just before Christmas, again crazy that everything shuts down for 2 weeks!! Thanks again Xx

  • I think it's disgusting that you are being forced to pay for treatment that is rightfully yours. You should just go back to A &E and insist it's rescanned and demand that you go home with the heparin. The Haematology department should never have sent you home without it to start with as they would have been called by A&E to advise on dose when you went last time. They have a duty of care towards your mother and rather than spend your money I would make them do their jobs. I feel quite cross for you that she is being treated so badly. Tell them you intend to complain to PALS - that will wake them up!!

  • Thank you for caring, I agree with everything you said but my mums just had enough of fighting and at the moment can't being doing with the hassle of the nhs anymore. It is a sick joke, we are no further from last week, thankfully leg isn't as painful, GP has contacted her consultant in London but nothing!! I hope we hear something by the end of the week, if not with the' xmas shut down' we will pay private and hopefully get something sorted in the new year. Fingers crossed for a drama free Xmas Xx

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