Anticoagulation UK
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Advice wanted

Ten years ago I had two DVT's in my right leg at the age of 28. No long haul flights, no bumps, no medical problems. Blood was fine, was on warfarin for standard 6 months and Ive worn knee high compression sock every since. In 2015 I had a scan because my leg swelled up like a clot again, it found no incompetence in my deep or superficial veins. Two months ago a vein became noticable and dr said 'varicose veins' put me on Naproxen, it did nothing. I asked to be referred to Vascular Services at local hospital.Last weekend my leg became very itchy, sore, red patches, swollen etc and I went to walk in centre,told ive got cellutitis which will need investigating and prescribed Fluxocillian. Got letter from dr today to say hes not referring me to Vascular services as I have post thrombotic syndrome and nothing can be done. My swelling has gone down but my vein is very sore and painful, do i go back to drs? Advice would be great.

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Or consider a private referral to a vascular surgeon.

If you are in the uk I doubt you would qualify for NHS referral

There is no good treatment, but psychological factors and worry are common

thrombosisuk.org/downloads/...

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My ankle is now stiff. Im going to try and get appointment tomorrow, plead if i have to. This isnt right, its getting worse pain and itchy wise and I need it checked out especially as im working Saturday. Thanks for reply.

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Don’t know where you live, but it sounds like your doctor is useless.

In Scotland you would have been referred.

Definitely consider changing doctors and maybe even taking legal action against your doctor.

My doctors refer me to specialist with no problem.

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I'm sorry to hear your story. I'm really interested as it is almost exactly what I have just gone through. I am 6 months into treatment of multiple PE which came from nowhere. I am taking Apixaban which seems to have a trail of this type of story attached to it in online forums. I changed my GP and a course of Naproxen and antibiotics have sorted out the incredibly painful foot and ankle I experienced. My GP considered Gout and tested my blood for it? There was some evidence but not definitely gout.

I'm sorry I can't offer you any other advice. For the moment I am fixed, but I will watch this topic for updates. I should mention that this all happened at the same time as a coronary stent fitting. Again that was totally unexpected. I had been a fit and well 57 year old, eating healthily and exercising in the gym regularly. Quite a year so far !

Good luck with your ankle and leg. I will keep watching this column and pass on any developments if they are helpful.

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I did get referred to Vascular in 2015 and had a duplex ultrasound however they said although there was some old thrombus there is nothing to be done and should continue with the sock. I have managed to get an appointment with another doctor tonight for my painful ankle and itchness all over, it was a bad night, couldnt sleep. I feel silly but i need to know if im ok especially as my work tomorrow includes a lot of standing.

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I hope things improve soon for you. Standing without walking is not good either, the blood tends to pool then. They do sell medical grade compression pantyhose

That may be helpful for some. Please be sure any garment you buy is approved by your Dr. Office. If this is PTS then they shpuld be helping you get on more comfortably. Also, give you info on what to expect.

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Hello. In my opinion post thrombotic syndrome can cause troubles. That being said I would want to make sure that the limb is clear of infection and there are no occlusions. Cellulitis is serious. I think you need that vascular specialist to consult. From your end if you can walk and swim it can really help. Aslo, it has been my experience that sitting must have the limb up. Vascular surgein explained to me that the damage done from some clots to the veins leaves the area congested. Some cases need new paths made, this is a very specific to case thing though. Please remember stockings lose compression after 6 months. I found medical grade compression soft socks way more effective for me. Good luck and always get suspected infections checked out.

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Ive got another antibiotic as it turns out my itchy is due to allergic reaction to fluxomillian and ive now got co-codemine for the pain. Not to drive or wear compression sock till swollen ankle has gone down. Im going to work tomorrow but ive told them whats happening medically. I'll see how I go.

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You need to see a vascular doctor and have them check ur veins higher then just your leg. I'm no doctor but I had A crushed iliac vein caused by May Thurner syndrome maybe have them check higher. Either way you need a new Dr, it sounds like this dr is just throwing medicine at you without trying to determine the cause.

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I have another problem now. Sunday night my foot swelled, ankle painful and top of foot very painful, sole of foot intensive pain. Cant walk on it. Asked for dr callback today, different dr but useless all the same. Have an appointment with another doctor tomorrow but in excessive pain regardless of whether my foot is up or down. Please please keep your fingers crossed that they do something. I was unable to work yesterday and today. Feeling very tired and low x

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Finally last week i saw another doctor who phoned MAU at my local hospital. I was admitted last wednesday and came out yesterday. Finally had my vascular test and IV antibiotics for severe cellutitis. I was pretty fed up by the time i was admitted, over 3 weeks i had 3 different types of oral antibiotics, many painkillers and spent a fortune on prescriptions. I also saw 4 doctors, been to the walk in centre, spoke to a dr on the phone as well as an emergency. This all could have been avoided if the right treatment was given earlier. I had to miss 4 days work, money for Christmas and now have a canula in my wrist for IV antibiotics for tomorrow at home by a visiting nurse. Annoyed, yes i am. My own doctor hasnt even enquired how i am, a large pack of medical notes will be coming his way and I hope he properly reads them and digests them, because he told me I was a worrier and nothing was wrong.

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The hospital said my leg needed to be clinically reviewed following my cellutitis drama. I had an appointnent on thursday-3 weeks after finishing my IV antibiotics. My dr was useless, hadnt read my hospital notes, i had to tell him what happened. This time though he wasnt prepared that I had brought my brother and sis in law to the appointment who asked lots of questions. He didnt like that at all. He didnt know anything. We asked for referral to London hospital. Finally yesterday got appointment text from St Thomas' with an appointment 7th Feb. Will be changing drs and now got more antibiotics as foot still puffy and ankle bad.

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Turns out that the hospital didn't think it was cellulitis but they treated it as such. I waited for my doc to say 'well if it wasn't cellulitis then let's find out what it is' but he didn't. Hopefully when I go to St Thomas's maybe I might get some clearer ideas of what's going on. Either way I will be under a specialist which is what I've wanted since 2007, since my original clots. I know GPs are under pressure but his response to how I was feeling physically and emotionally was poor and thank God I have this site and all you lovely people.

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Hi, have just seen you post, I had a DVT in December 2016, my GP said it was cellulitis, I told him it wasn't as I had one of those from a horse fly bite and it was definitely different. After 3 visits to GP who just kept pressing all over the swelling in my thigh saying I don't know what it is really !!!! After 3 different antibiotics didn't work, I took myself off to A&E to find it was a DVT. Even after 12 months my upper thigh is still sore and all down the leg I now have loads of veins which weren't there before. I am convinced it wouldn't have got as bad if I had been sent to the hospital earlier or went myself and not trusted him. I recently asked for referral to vascular for pain etc but was told it is not done on NHS anymore, so will have to go private. I have recently changed doctor due to many problems and will be asking new GP about St Thomas's as to be honest not sure where to go in UK private as you never really know if they are all qualified. BUPA would be best so will have to wait and see. I have one really clear leg and one really veiny knobbly one, not a good look

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It was actually this site that told me there is a specialist unit for vascular at Guy & St Thomas' hospital. It is very easy for a GP to refer you, there is a form on the vascular page. My sister in law told my doctor she would pay for me to go private to get some more investigation. I looked up a clinic at Guildford but it is expensive. Definitely get your GP to refer to Guy and At Thomas'. I will let you know how the appointment goes next week. I am convinced that we should be monitored closely after having one or more clots. I had to do all the chasing. I didn't get the vein Doppler, the deeper ultrasound until 2015 when my foot and leg swelled again, 8 years after original clots and suprise suprise all the damage (irreversible) has been done. My leg is horrible, my foot is always red and purple, it makes me very upset. There definitely needs to be better aftercare regardless and counselling because my confidence and self esteem has been damaged too. Good luck and stay in touch.

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Hi, thanks for that, I did keep looking and eventually found it. I will be asking my new GP, my old one just said go private. Like you I did all the chasing and asking for checks etc. I was told at the time in A&E "oh, that will be cancer then" and then was just left to go home. So I became extremely upset and anxious, burst into tears in the GP's office and he arranged all the scans etc that I should have been automatically given. So I agree better aftercare. is necessary. My lower leg above ankle is purple and when I wear socks it leaves a ring around my left, although ankle not swollen. My lower leg feels like it is burning but GP just says, "oh it is hot" but offers no solution. I think the cellulitis and DVT has just done so much damage that my leg is struggling with blood supply etc. Please keep in touch and hope all goes well next week.

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Do you know what? I'm glad someone told me about Guy and St Thomas'. I went yesterday for my first initial appointment and it sounds silly but the consultant actually listened to me. He didn't questions what I was doing there, he let me say what I wanted to say and I felt good afterwards. He looked at both legs front and back and said yes I have post thrombotic syndrome but I also have venous insufficiency. He ordered a full blood count to be done when I was there, 7 vials of blood taken to check everything including thrombillia (which I haven't had done since 2007) and the next step is I will get an appointment to return for two scans, one an MRI which will look at my veins in my whole body and another in depth scan. Then when the results are back, a team which includes a haemotology professional, a surgeon, a radiologist and everyone involved in my care will sit down and look at my case and we go from there. I told the consultant the one bug bear of everything since 2007 is you get labelled as a worrier, people drip feed you information but no one checks up on you. Finally with a sense of relief someone is taking me seriously and willing to investigate. Will let you know what happens next...

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I've had blood taken to test my blood again, an MRI and a vein ultrasound. Very detailed and now I am waiting for an appointment with the consultant to find out the results. I had a MRI on a Sunday and the vein ultrasound two days later. Thank you Guys and St Thomas' hospital for all your care so far.

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I have received a pack from Thrombosis UK about raising awareness of Clots. I shall be attending the patient information meeting in London on Thursday 24th May as I feel I'm still left in the dark. I'm still waiting for my results from my scans. Be good to meet others and no longer feel alone.

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