PE symptoms?: Hi, I'm new here. I'm just... - Anticoagulation UK

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PE symptoms?


Hi, I'm new here. I'm just trying to get an understanding of PE symptoms.

For the past few weeks I've been having some calf pain that I initially put down to muscle cramps. Recently, though, the pain has increased, although no redness, no swelling are present.

I went to the hospital A&E twice already, they measured the calves, did an X-ray (fine), measured the oxygen saturation (fine), did a d dimer test (negative) and sent me home saying that it isn't DVT not PE. I did say that I have moments when I'm not breathing too well and I have a dry cough, though not persistent but they put that down to my pericarditis (that's another story but suffice is to say that the hospital believed I have pericarditis but my cardiologist says I don't, so I'm not sure what applies really).

The calf pain continues - both calves. Today I've tried to do a bit of housework and I got breathless and coughing like crazy, plus a bit lightheaded. I feel so tired as if I haven't been sleeping for days, which I did.

To me this really sounds like PE but I can't get these people to believe me! I know that it is difficult to diagnose in the absence of the obvious swelling, redness in the calves and in the absence of sharp pain in the chest. I do have some chest pain, but it is more central and diffuse, though I get some sharp stabs once in a while in the upper front left of the chest.

My questions are:

- what symptoms made you go to the doctor, which then got you diagnosed with PE/DVT

- how did you get the doctors to take you seriously?? Which doctors did you go to? I've been to the GP and she measured my calves (no swelling) and my oxygen saturation and concluded no PE but said if still worried to go to A&E. I've been there twice and they keep sending me home but the symptoms aren't going away!

Am so worried and don't know what to do. Any ideas?

24 Replies

My PE was discovered incidentally whilst I was in hospital having an unrelated test. The symptoms came on very quickly - I felt dizzy and nauseous and passed out. I was fortunate in that I was already in hospital and so they had to investigate. I did not have any calf pain or swelling nor any chest pain.

The initial investigation was a d dimer blood test which came back positive. I was started on blood thinning injections and warfarin. However, the definitive test was a lung scan which I had a few days later. This confirmed the presence of multiple small blood clots in my lungs. As the reason for this has never been fully established, I am on lifelong anti-coagulants at present.

As your d dimer test was negative, it doesn't sound like you have PE but this can be difficult to diagnose. From what you say it seems as if most of your tests are negative, so not sure what else you can do at this stage.

Hope all goes well.

I am very lightheaded too, which is worrying. I'm also breathless but on/off, not continuously.

As it happens I was in hospital on Christmas day for something else and they did a d dimer then and an xray and they were both fine.

I understand that the likelihood of this being a PE is low but I'd feel better if someone would just do a doppler ultrasound to check.

Thank you for your response.

I went to my GP because I was very breathless. I had had a cold and put it down to that and hte possiblity of a chest infection. I had also had a nagging ache in my calf but it was just like aching legs really, there was no swelling or change in colour. The GP made some calls and sent me straitght to A&E. D-dimer was positive and further CT scans confirmed it. They kept me in hospital for a week and I'm now on Warfarin.

Hope all goes well for you.

I'm impressed with your GP - when I saw mine she just measured my calves and my oxygen saturation and said I don't have a PE.

I have episodes of being breathless but it isn't continuous - a few hours, then it goes away. I'm lightheaded though, which isn't pleasant.

Thank you for sharing this.

I had no pain in my chest or leg. My dvt started as phlebitis which was painful on standing after sitting...... no redness. I was out of breath and had a dry cough.

Was the breathless continuous? Mine seems to be on exertion mainly.

GP can't understand why I believe it could be PE but she can't explain why I can't breathe. She attributes the coughing to flu.

No on exertion. When I was walking and talking at the same time. Or walking up even a small hill when walking my dogs.

You definitely need a d-dimer blood test and possibly an ultrasound.

That's how they found mine.

Purpletop in reply to Lbcannata

I had the d dimer test and was negative. As I have no swelling, no redness,etc, they won't be doing an ultrasound. They are saying that's muscle pain, not DVT. Fingers crossed they are right.

I had no symptoms for my PE which was shown up on a CT scan when I had my DVT in groin. Symptoms for DVT was heaviness and pain in area and swollen legs. Ask for a respiratory test and CT which was the only scan that showed my DVT/PE. Hope this helps.

Purpletop in reply to jackdaw50

It does, thank you. Getting someone to believe that my pain in my legs is due to DVT is another matter. They keep saying it is muscular and the d dimer test is negative, so no other test is necessary, they say.

I do not understand your doctors. There was such a simple test to see if you have DVT in your legs. The test has several names:, ultrasound of the veins in your legs, Doppler test of the veins in your legs, this shows DVT (blood clots in deep veins) automatically as they are doing the test. Is it possible they did this test on you and you were not unaware that they were doing it? If they did this test and its negative, you do not have DVT.

Purpletop in reply to mozelle

No, they refused to do it because the d dimer test was negative and my legs looked normal, I.e. No swelling, no redness, no heat. Crazy, I know, but there's nothing I can do but go privately, it's getting ridiculous.

The first time I had DVT in my leg it was behind my knee in the popliteal vein. I had come out of a cast because of a fracture and my leg was red and hot. They sent me to the emergency room, they did the Doppler and the next thing I know I was admitted and I was hooked up to an IV with heparin and put on coumadin and was in the hospital for 5 days.

2 years ago I was diagnosed with three blood clots in three veins at the same time in my right leg, my leg was not swollen, not red, and not hot, but a doctor who was treating me for a foot problem told me to see a vascular doctor because I was experiencing some pain in my leg. The legs don't have to be red or swollen when you have blood clots. If you are that sure that you may have a blood clot I suggest seeing a vascular doctor and he will do the Doppler. Good luck

Hello Purple, I thought I had written your posts. I'm in exactly same situation as you. Did you get anywhere with tests, are you okay?

Purpletop in reply to stargazey

Hiya, Star. In the end I paid privately to have a Doppler which was negative for DVTs. I then saw a lung specialist - privately again - who said that he has seen people with PEs and negative d dimer and he organised a VQ scan for me. I haven't had that, however, because in the meantime my cardiologist suggested that I should be tested for autonomic dysfunction - because at the same time with my calf pain I developed heart-attack-like symptoms, been to A&E many times with shortness of breath and chest pain but all tests were fine and doctors had no idea what's wrong with me.

Autonomic dysfunction (which could be secondary to lupus, and I have lupus) can cause these symptoms, including calf pain. The autonomic system deals with the regulation of blood pressure so if that's out of whack, then the blood tends to pool down instead of being adjusted to bathe the upper body and the brain (hence the dizziness, breathlessness, etc).

So now I'm in two minds whether to have the VQ scan because I don't want to add more radiation to my body, I've already had 9 CTs and 2 nuclear injection tests in the past 3 years. Unless is necessary. And no one can tell me if it is necessary, all the lung specialist says is go have the test and we will see.

Are your calves the only symptom?

Hi Purple, you sound like me in that you research everything thoroughly. Doctors don't like people like us. I've been misdiagnosed so many times in the past that I've got very sceptical about GPs add the NHS cutbacks into the mix and we are where we are - frightened and frustrated in equal measure. I can see where you are coming from re another CT scan. ive paid privately for various consultations in the past. I coukd write a book. Because if the misdiagnoses I have developed health anxiety, a GP a few years told me she thought I could have MND because of twitchy legs. Then told me I was very anxious! Paid to see an MND expert who did EMG and he was able to put my mind at rest.

I started having calf niggles about three weeks ago. Didn't take much notice at first, my leg felt hot but skin was normal, then a lot of pain. Asked GP who just looked at my leg and said "paraesthesia". Calf pain got worse so on Wednesday I saw another doctor who examined my leg, said no dvt but took a blood test. Yesterday he told me the result was 68 and the threshhold was 230 so no chance of a dvt. So why don't I believe him. I live in depths of West Country but there's a Private Vein Clinic about 30 miles away, £180 for a leg examination and ultrasound. I feel breathless but I'm sure that could be anxiety. I do have irregular heartbeat but no afib and take nothing for it. BP all over the place but usually normal, constipation, bile reflux, etc. Like you I have chest pain on left but doesn't feel bad enough for A&E.

Fed up scouring the net looking reassurance by GP hasn't given me. He wouldn't be happy if I went back and asked for referral to Vein Clinic. My leg hurts less when I walk and more when I lie flat and put pressure on calf, mist of the time it feels weird. I am getting obsessive and don't like it. When I phoned NHS DVT clinic they said they would not do ultrasound with a normal D Dimer test, like they told you.

What's a VQ scan, so you have to pay for It yourself?


Purpletop in reply to stargazey

I do understand the concern, only too well. A VQ scan is one where you get to breathe a radioactive gas and then sit still till some pictures are taken, then get injected with a radioactive substance and again, pics are taken - it takes about 40 mins, I think. It has fallen out of favour with doctors since the advent of CTPA (CT pulmonary angiogram), which is a full CT with the added 'pleasure' of having a contrast inserted at the latter part of the CT scan. The latter offers more precise images and can identify all kind of other stuff happening with your lungs. But the radiation exposure is very high, unlike the VQ scan.

No one offered any of these to me on the NHS because of the negative d dimer and lack of apparent symptoms such as tachycardia. Ultimately they take a view based on cost: how many people do we save if we use this expensive scanning.

I don't think I'll go and have the VQ scan (organised under medical insurance) - i've had enough radiation in the past 3 years and I'm not entirely convinced that it is a PE. Even if I have the VQ, the results are not 100% and if they are borderline I will have to take a view whether I take Warfarin directly, to make sure, or have a CTPA to get a clearer picture. None of these are appealing to me.

I do think that the more we try to find answers, the less answers there are available and the higher the risk of secondary problems, such as increased risk of cancer from radiation.

I have lupus and i'm on immunosuppressants for it. Not only that lupus reduces the capacity of the immune system to repair cellular damage but if one adds immunosuppressants that reduce the activity of the immune system anyway, then the ability of my body to repair cellular damage due to radiation is severely impaired.

I, like you, went to have the doppler from my own pocket, only here in the South it was £400! And they don't do the hip, which sometimes can cause clots. But at least they checked the area in pain and it was clear. For me the concern was more about the inability to breathe and the dry cough that I get when I do a bit of activity. I don't know whether that's because of the autonomic dysfunction or asthma or PE. The calves have now resolved on their own.

I'm sorry for not being able to help with the decision. I know how it is when we're trying to prevent a critical issue and there's no proper way to do it other than wait and see. I'm hampered by my previous exposure to radiation but otherwise I'd have had the VQ scan to make sure. But we are all different, of course. I'm not advocating one way or another.

Let me know how you get on!

Hello Purple, well I went back to GP today, showed him the blue vein in my calf where the pain seems to originate from and he said I had Thrombophlebitis. Definitely not dvt as dddimer was negative. Gave me cream to rub on four times a day. Get home, Google, says Thrombophlebitis should always be investigated with ultrasound, also DDimer in this condition is also raised. Mine isn't. So none the wiser, I suppose I'll go on for another few days in pain before I go back again. I really don't trust doctors, I was in and out in 2 minutes flat.

I don't like the sound of the VQ scan that's your decision, sometimes you feel you can't do right for doing wrong. Radiation is not good. I am very stressed, very worried and in quite alot of pain and very conscious that I have consulted a doctor three times in two weeks with this problem and still no nearer to a solution. I wish I had private health care.



Got an appointment on Thursday morning to see a vascular surgeon privately. He will examine legs and do doppler ultrasound. Vascular surgeon should know what's what.

Purpletop in reply to stargazey

Yes, they're the best placed to assess whether it is a plebitis or DVT. Good luck and let me know how you get on.

Hi Purple, I didn't go to private appt because I read a review on the doctor I was going to see and it was so bad I couldn't face it. "Blunt, arrogant, rude, didn't listen, got nasty when asked about second opinion"one star for listening, one star for attentiveness and one for trust. I'm too sensitive atbthe moment to deal with that. Saw usual GP who rubbished phlebitis diagnosis. Took another D Dimer which also negative. I told him I might go to a and e but he advised again, recommended 111 ha ha! Just been on local news that a and e is stacked out and thry are queuing to get in. Our wonderful NHS! I'm beginning to nit care what's wrong and let nature take it's course.

So doing nothing at the moment,  leg pain increasing, also twitching and numbness showed up to the party. Now I'll be worrying about Motor Neurone as well. Not doing anything about it for the time being apart from staying away from Google. I'll drive myself nuts. Doesn't help living alone though. 

Could get appt with another vein doctor at same place next week or ir could spend the £180 on a new rug for my sitting room. I hope you have a happy Easter and are able to put your worries away fir a while.  The internet is curse as well as a blessing.



Purpletop in reply to stargazey

If it's that painful that you can't put the foot down without yelping, I'd go to the vascular surgeon, particularly where you now have numbness. That numbness can be caused by so many things that aren't as drastic as MND, so try not to lose sleep over that likelihood just yet. 

Have a lovely Easter!

Hi , I am a 47 yr old female. it started with a shortness of breath one day. then one evening while dozing on the couch, it felt like some one was covering my nose and mouth at the same time and I couldn't lie flat! also, I had a tightening & swelling in my left leg that was happening off and on. I went to the emergency room and one Dr said that I was very healthy but probably had sleep apnea?? I was a little overweight but not obese. So then the next shift changed and I got a lady Dr who ordered a blood test and if it comes back negative, then you have blood clots! Surprised?? yes, 4 of ask your dr about the blood test for blood saved my life...hope this helps!! good luck!@

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