New here, but worried : Hi recently... - Anticoagulation S...

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New here, but worried

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Hi recently diagnosed with DVT, GP is not doing tests for cancer as suspects it was my HRT. I do not feel happy about him just assuming it is this, especially as have just read that 1 in 10 new DVT's is due to a cancer which you do not realise you have. Has anyone here with a DVT had the tests and everything was clear. Thanks

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I had a pe in sept my second & I have been tested for cancer & all clear , push for tests if you are worried though

Emma xx

in reply to

Thanks for reply, I will ask for tests. Did they know what caused yours?

in reply to

First one was having a baby , second one was unprovoked said I may never no , looking into clotting disorders x

in reply to

Thanks, it is really worrying when these things happen out of nowhere, I shouldn't have googled causes of DVT x

in reply to

I've been terrible googled everything now scared the life out of myself , it's hard though isn't it x

tracey13 profile image
tracey13

I've had 3 DVT IVE GOT factor 5 leiden it's a blood clotting abnormality

in reply to tracey13

Thanks for quick reply. Ouch one was bad enough not sure I'd want anymore. Will talk to GP about my concerns. Teach me to google !!

tracey13 profile image
tracey13

My husband has a blood cancer too so we are a right bloody pair x

tracey13 profile image
tracey13

When I had my last dvt in Aug 2015. I should of seen a consultant urgently with it being my third clot.

After the warfarin nurse told me I would get an app quickly as she referred me. After waiting almost 4 months my own gp rang the hematologist secretary to find out there was no referral done!! So I'd waited 4mths for nothing.

When I finally got to see the hematologist I was in agony she asked why I wasn't wearing compression stockings I told her I'd not seen noone and ambulatory care where I went didn't offer any either.

She was very annoyed as she said I should of been wearing them soon as my swelling went down.

It then look another two weeks for the hematologist to write to my gp so they could prescribe the stockings.

My gp was so concerned he sent me to see a vascular surgeon who then diagnosed post thrombotic syndrome. He told me a blood clot of this size should of been extracted within 12 days of diagnosis.

It took from Aug 15th to October for the hospital to send a letter to my gp there was no way on earth my blood clot was going to be extracted.

Nice guidelines state these stockings must be worn to prevent post thrombotic syndrome.

I don't bother wearing the stockings as I've already got the post thrombotic syndrome.

I had a CT SCAN to rule out cancers this scan showed a cyst on my ovary, so then I needed an mri scan.

All turned out the cyst had shrank and no further action needed.

I went through 6 months of hell. I was on the sick for 4 months. I had anxiety I went for counselling, it got to the point I trusted noone.

I still have a lot of discomfort now. I've flown to krakow in Oct last year I was a bag of nerves.

I'm taking rivoxaban daily for life now.

The care I received was appalling. I sent a letter of complaint in to the director of the hospital. They just all cover each other up.

All I will say is don't sit back push for tests!

Ontop of all this going on we found out my husbands blood disorder was actually a blood cancer.

We are both lucky to be here and we've put the last two years behind us.

Tracey

in reply to tracey13

Hi just noticed this post, I got away lightly then I think, you poor things. I spoke to GP today, my husband came with me to complain about the lack or care given regarding my DVT, no follow up, no advise, no nothing and the misdiagnosis in the first place being told it was cellulitis. When I said the A&E doctor said "that will be a cancer then" she was horrified and said she understood my anxiety, but in her opinion and I trust it, my bloods show nothing sinister at all. She said HRT in the early stages causes a lot of DVT as does being overweight, which I am a bit, also sitting down, which I do in an office, all these things can contribute and saying about cancer was totally wrong. I am able to stop blood thinners in 2 weeks, luckily only needed them for 3 months, scared to be on them and scared to come off, if you know what I mean. Flying is ok if you drink a lot she said and move around so I should be alright in the summer. Good luck to you both, take care

tracey13 profile image
tracey13 in reply to

My sister is a sister in our doctors surgery she couldn't believe all the lack of care. She written letters of complaints for me.

Is this your first dvt?

Nice guidelines says to be on permanent anticoagulants after a 2nd dvt.

I knew 18 years ago I had a blood disorder after my daughter was born the tests came back with a diagnosis.

The nhs is a shambles noone talks or passes info on.

I had 4 months of hell.

Take care

Tracey

in reply to tracey13

Hi, thankfully my first, although I did have a phlebitis and cellulitis in the same leg in the calf, so always felt the leg was a bit off, it is badly veined and the other one is not. I posted about my visit to my GP yesterday, I specifically waited for her as she has retired and comes back occasionally, but she actually listens and ask questions rather than grunting, I was in with her for 25 minutes not just 15 and she called me back later and talked some more. Instead of feeling like I was about to die with cancer I now feel hope that things are going to get better. I have to stay well for my son who is off to Uni in October and I so want to be there for him as he grows up and at 57 have lots of life left in me yet. Take care

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