DVT - is this to be expected? - Anticoagulation UK

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DVT - is this to be expected?

Spacecow
Spacecow

Hello everyone. I'm three weeks post diagnosis for multiple clots from lower leg to abdomen. This is the second time I've had this. The first in same area 17 years ago due to pregnancy. I'm on apixaban and feeling very tired. Yesterday was the first day I didn't have to go for a nap. Today I'm feeling like trying to do a bit more. I've just made a meal, mainly sitting down, and am out of breath, heart pounding and sweating. I've tried to go for a walk a couple of times and maybe managed 200 - 300 metres before the same sypmtoms. Is this to be expected? I don't remember the same issues first time round.

I did go into A&E a few days after diagnosis as I felt very breathless (I also have asthma). They did CT scan and no sign of clots in the lung. I now appear to have been labelled as overly anxious, which is very annoying as I spoke with GP three times before eventual diagnosis at A&E and was told each time it to worry it wasn't a clot.

I've no planned follow up until end of July with hematologist, so any experiences of recovery time from DVT would be welcomed. I'm due back at work on Tuesday after a month off but not sure how I will cope. Thanks.

7 Replies
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I would phone 111 for advice, you are definitely not well, sometimes we have to stand up for ourselves doctors are not always perfect, definitely don’t go back to work yet

Terry2407
Terry2407 in reply to daisyd

Agree this does not seem right I had a pulmonary embolism went in hospital given heperin monitored a couple of days left hospital straight back to work been on warfarin 11 years occasionally tiredness is an issue I put that down to age

I honestly feel your pain . The anxiety after a DVT is terrible as I've had three DVTs now .

1st from the pill

2nd one from pregnancy

3rd on from flying

I have a blood clotting abnormality called factor 5 Leiden .

My last DVT was in 2014 it was from my groin right down my thigh to behind my knee . Since this last episode I've been to A&E 3 times with suspected DVTs even though now I'm on rivoxaban for life it doesn't mean I won't get another dvt.

I'm 50 next month my first clot I was 18 2nd I was 26 and this last one I was 44.

My GP always says don't ever doubt another clot always get checked out.

You should be on blood thinners for life now you've had two episodes of clots.

Will they investigate what the causes are for you getting clots.

Have a read up on factor 5 Leiden ! It's increased levels of estrogen that clots my blood.

I found out after my second pregnancy and got a diagnosis.

My dad has it too he didn't know it was only through my diagnosis my parents had to be tested out.

Good luck and don't be fobbed off as over anxious.

It so scary having a DVT or any clot.

Tracey

Hi I had a DVT in left leg. Pulmonary embolism Mass . I’ve had one scan, when it first happened . 18

Months ago . Stuck

Me on Apixaban for life. Never seen a Haematologist. Im69 . They don’t seem to be interested .

Perhaps you need more time off. Do you know why you got the clot? Take each day as it comes. Change your anticoagulant. Edoxaban/rivaroxaban instead?

Thanks for the replies all. I went back to GP last week and she did send me into hospital for check and signed me off work for another week. Chest x-ray was clear and they had no concerns. I feel I have a bit more energy now.

I don't know why I had the second clot. First one put down to pregnancy and queried anti phospholipid syndrome but after further checks was told I didn't have this. I'm hoping seeing hemotology will help as GP admitted being clueless, but from what others have said maybe not. I'm expecting to remain on anticoagulants. I will ask about alternatives then if still feeling wiped out. Thanks.

I had a pe Mass and DVT the same time. I was put on injections for 3 months, now on Apixaban for life . This happened 20months ago. I’ve never been called back to check lungs . Said I was lucky to be alive . So that was that . My leg swells up, ankles , and I’m only small. So what is the answer

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