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Sticky Blood-Hughes Syndrome Support
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No doppler scan offered !

I went to my local walk-in centre yesterday where I was escorted round to A&E due to experiencing chest pain, breathlessness, swelling of the abdomen and extreme dizziness. My pain was made worse if I breathed in deeply or lent forward so I wondered if I had a clot and thought I needed to get it checked out.

I hate going to the hospital because of the long waiting times but I were eventually called and were wired up for an ECG and bloods were taken. I explained I have autoimmune dIseases of which are now many and that I am Aps positive and medicated with clopidogrel.

The Dr felt my abdomen and stomach and announced he thought it could be my pancreas or gallbladder and that he would like to do some xrays. I tried to explain it was not that sort of pain and I wondered if perhaps I had a clot and would it be possible to do a doppler scan as the pain was more around my heart area.

I was told there were no main arteries around the area that they were xraying and they did not have facilities to do a doppler scan and that I would have to see my specialist about getting one carried out ! I explained I am in a crisis now and surely the hospital were able to carry out a doppler scan and went on to ask how the hospital dealt with DVT's ? That's a different department came the reply.

I tried to inform him that with Aps we do not only get clots in main arteries but can suffer with many micro clots anywhere in our bodies. He reassured me my ECG was normal, xray showed nothing on my lungs and bloods had shown normal pancreas and gallbladder function. My white cells were ok and this showed my antiphospholipid syndrome was under control, that's good I said..........you can go home he replied.

I am still swollen, very uncomfortable and non the wiser !

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Hi Jillmo,

What INR are you at when you feel those symptoms? Have you asked your Specialist to be sent to a Cardiologist to do ev an Echocardiography with doppler on lung and heart. Do you have high bloodpressure also?

Kerstin

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I am not on warfarin Kirstin I am on clopidogrel.

I was seen in cardiology earlier in the year where they carried out various tests ie: echo and a ct scan. My blood pressure is a little high but not high enough to be medicated.

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As Kerstin said, is your anticoageration in control? From memory your not on warfarin?

The walk in centres are not set up for extensive testing, they are extended GP services, usually run by very experienced nurses, paramedics.

I'm sure if the doctor you saw was concerned he would have referred you to A & E, where you could have had a dopler, but this may not show up anything as he said. I think an ultra sound exam would be useful for you.

If your pain is tolerable, please speak to your GP to organise testing?

If it remains and gets worse then go to your A & E dept.

The good thing though with the walk in centre is all your tests results will go to your GP and if anything unusual is picked up your GP will advise you.

Hope you feel better soon x

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I was escorted from the walk in centre around to the A & E dept where they carried out the tests. I were told by A & E they did not have the facilities to do doppler testing !

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Hi, a couple of years ago, I had an agonising pain in my leg, I measured the swelling and knew what was going on. I went to my local hospital, waited over 5 hours, to be told my d-dimmer was raised but they couldn't organise a dopler for a few days!!

I agreed with the doctor to come back if pain remained or got worse.

I went home and self medicated by increasing my dose of clexane. I sent an email straight away to my specialist, as like you I know my body!

My specialist is 200 miles from me so not always easy to communicate.

Two months later I got the dopler and was told I had done everything I could, there was damage/bruising but no clot.

Follow your instincts, if you are deteriorating and getting worse go back to A & E otherwise get your GP to organise further testing.

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No point in going back to A & E if they do not have the facilities to carry out the relevant tests to see if I have a clot.

It is all very well to wait to see a specialist or our Gp's but as we all know that wait can be lengthy......a wait that could cost us our life.

Its damned ridiculous.

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I seem to remember you had a similar situation with swollen abdomen in the past, what was the cause of that, did they tell you?

If this situation does not improve you must go back to A&E as Holly says. Different days different Doctors and different perspectives.

Just so you know when I had my PE the pain and breathlessness was relieved when sitting foreword not worse.

Have you been seditary over the weekend? If you have a flare coming from tender points in your back or shoulders or perhaps more likely you may be suffering a condition called Costochondritis, have a look at this link:

mayoclinic.org/diseases-con...

If you think this is likely you need pain killers and rest till it subsides but if it gets worse go back to A&E.

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I have just had a look at your link and indeed it does say swelling. Costochondritis is a possibility.......if I can pronounce it I will ask my Dr to check it out. Hmmm cost- o- chon- dritis think I had best ask utube how to pronounce. Thanks Lynn.

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Hi Lynn,

I see you have changed my name from Jilly to Jolly of which I am not at the moment. The swelling at the time your mentioning was caused by the attempt to anticoagulate me with the warfarin and heparin.......hence it was stopped and I were put back on the clopidogrel.

No way am I going back to A & E it was like a mad house with people stuck on trollys for hours in the corridoors, I was shoved out of the cubical's four times to be moved else where.

What I am feeling as lean forward is a pressure up in my chest but it was the dizzyness that frightened me I thought I were going to hit the deck.

I would have thought Aps positive check for clots........simple. ( NOT )

I did wonder about costochondritis but would this cause swelling ?

Apart from going to my son's at the weekend for lunch I did nothing out of the ordinary........I came home early because I were feeling unwell.

I am baffled by it all and havn't the energy to run around like a ruddy headless chicken to get no further forward.

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Please keep an close eye on yourself, and do go back to hospital, gallbladder problems are rife with poorly medicated thyroid problems, also the Liver can cause problems in the form of Budd Chiari Syndrome, not saying you have this, however you will have to keep going back regardless of the wait, I know it is awful, but at times we all have to do this, myself also recently. My water retention was totally extreme until I started on my NDT Thyroid medication, and also made sure that all deficiencies in my body were treated, including Iron, ie folate, ferritin, D, B12 etc etc. MaryF

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I hope you are feeling better now Mary after your trip to A&E.

This damned condition is no joy.

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Any nausea with it?

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Hi Kelly,

Nausea, dizzy and 'very off balance,' my chest hurts with certain movements and is still swollen, very shaky and very hot. Breathlessness and pressure in my chest.......it's horrible but I must add I have a long standing diagnosis of fibromyalgia.

I think Lynn hit it on the head with the possibility of Costochondritis !

I had read of this condition on here and looked it up but until Lynn mentioned it I didn't give it a thought.

I am going to a muscular skeletal clinic tomorrow so I can mention it to them to see what they say. It's not nice what ever it is and the swelling is making me feel like a telly tubby.

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Did they not do a blood test for d dimer?? That’s the test to check for a blood clot? If it’s raised then they may go on to to a Doppler or scan I believe

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They did blood tests but not sure if they did a d dimer !

They said my white blood cells where in order so not sure if that is what you mean by a d dimer.

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So sorry for your awful experience in A&E! I have been thru so many horrendous experiences myself and so know exactly how you feel about not going back. I will do all I can not to go to A&E because they just don't have the experience to deal with complex patients like us.

The reason I've responded is because I have been experiencing very similar symptoms these last few days. Chest pains and pressure, dizzy, nauseous, shaking hands, balance problems etc and I've had swelling in my abdomen on and off for a very long time.

I've been wondering for a while now whether I have cardiac syndrome X. There are times, sometimes multiple in one day, when it feels like someone has put their hand inside my chest and are either squeezing my heart and/or lungs so that the blood just isn't able to flow through them. I get awful chest pains and pressure and I'm still breathless even with my oxygen on.

With cardiac syndrome X, you can have spasms of the small blood vessels of the heart and I think it is possible that this is what I'm experiencing. At the end of the day my abdomen can be so swollen and I think this is because fluid builds up in my body because the blood flow to my heart and lungs is so compromised. I also get very hot and feel a hot burning pain in my abdomen when my INR is low, which I believe is caused by micro clots.

What you're experiencing is also super similar to how I was after my angiogram and right heart catheter recently. I had to stop warfarin and have Fragmin injections before and after and when I was discharged and got home I became acutely unwell with very similar symptoms to yours now. My symptoms didn't subside until my INR got above 3.5. With my APS diagnosis finally confirmed, I now know that I was experiencing micro clots and omg do they hurt and make you SO incredibly unwell!

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Oh, I forgot to answer your question to me on that- I just remembered that. I’m sorry.

Yes. I was hospitalized ( admitted From the A&E to an in patient stays in the actual hospital ) with cardiac syndrome x in mid February in Austin Texas. Your symptoms will be Undeniably cardiac!

For me it did not leave me with any questions...

Jilly’s Symptoms don’t sound like this to me-

(But I did have a question about ileus for her. Sometimes with ileus it impaired the ability if my diaphragm to move correctly... that’s why I asked her about nausea.)

I think her predominantly “chest” presentations make chostocondritis sound more likely- she’s right. She knows herself and her own body.

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Wow you are an absolute mine of information Kelly thanks so much, we seem to share so many similarities too. I didn't know that illeus can restrict the diaphragm, that's really helpful too!

I get such a swollen tummy, usually always worse in the evening. I've put it down to fluid swelling due to my completely messed up circulatory system and poorly working lungs but I'm guessing really.

I just had an angiogram and they said my main arteries are fine. Before the test, I asked the cardiologist who was doing it, whether she would be able to tell what state the micro vessels to my heart are in, given that I produce micro clots and have been throwing up sprays of smaller and micro clots for the last fifteen plus years. She told me that they weren't looking at the small blood vessels in this test, only the main arteries. It really did make me wonder why I had to go through such an invasive test, when they couldn't even tell me if the smaller vessels are okay. 😲

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I don’t know that the diaphragm is involved directly per se... I just know when I’m in ileus, taking a full breath is not possible and really increases the nausea- and feels like the diaphragm can’t fully expand.

My heart checked out fine- just my INR was 3.5 by vein. Too low. Just “ Prinzmetals angina”- Vaso spasms due to sludging blood.

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Do you mind me asking what your symptoms are when having the vaso spasms. I apologise if I've asked you about this before but my brain just doesn't retain anything anymore.

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I’ve had cardiac syndrome x since 2001, it’s more often called microvascular angina now my cardiologist tells me. The squeezing feeling seems a little extreme for csx but certainly sounds as though you need checking for cardiac problems. These are good and reliable sites about csx

bhf.org.uk/informationsuppo...

rbht.nhs.uk/patients/condit...

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I have seen a cardiologist and indeed do have a couple of issues but nothing too serious. When I visited Guys Hospital earlier this year I asked about cardiac syndrome x but to my surprise the reply I got was which one there are many ! :-(

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Thanks so much for the links.

I probably didn't explain it very well but I don't actually feel a squeezing sensation, it just feels like my heart and lungs are really struggling to work, like having a band around the top of my chest. I get chest pains and a feeling of pressure when it happens and I usually have lots of fluid on my lungs afterwards too, which then has a knock on effect to my breathing, so I'm even more breathless until I'm able to cough it off of my lungs again. It's such fun!😵

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I think my issues are possibly costochondritis related.

I am going to the hospital tomorrow so discuss my chest pain with the clinician. As for the swelling of the abdomen my goodness there are times when I feel I shall burst.

I havn't been able to control my body temperature for years and have noticed I no longer sweat under my arm's ! I suffer with sjogrens and have put the over heating down to that......who know's what is doing what because we seem to have an array of different things going on.

I think you can see a clearer picture when on warfarin with the INR readings but unfortunately I am unable to take it. So many of us seem to be battling with our health at this present time it makes me wish I had a magic wand so that I could give you all ( including myself ) better health.

At least we have each other to talk to when in a crisis or just to let off a bit of pent up steam. :-)

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Ditto to the body temperature issues and as I said above, my tummy swells so badly that like you, it feels like it might burst, I call it my Santa tummy!

You're absolutely right about how incredibly important it is to have the help and support from everyone on this site, I think we'd all have lost the plot by now, if it wasn't for the support we get from each other 😭!

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D-diner tests are not completely accurate if you have APS. It’s something to do with having an illness which makes us liable to clotting. You may need further tests.

webmd.com/dvt/what-is-the-d...

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Thank you for sending the link on D-diner testing it was something I personally had not heard of and shall take a look at the link you have kindly sent with interest.

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That's really interesting, thanks for posting this. I've had multiple PEs and dvts but never had a positive D Dimer blood test result (taken at the time I had the clots), now I know why!

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