Anyone with DVT not related to flying, sitting or cancer

Hi, I am new here, but recently had DVT in thigh, no long flights, fairly mobile, walk everyday. Cancer was mentioned at hospital then dismissed and HRT given as the cause. According to NHS website 1 in 10 of all people diagnosed with a DVT out of the blue will have an undetected cancer. My GP not checking for this, so as you can imagine I am in a right state of anxiety and wondered if anyone else just had one with no cancer proven, just one of those things as they say.

[daisyd]

I would look at the site on here for sticky blood

[Hidden in reply to daisyd]

Hi Daisy, I will. It seems odd that during last year my ferritin has been high and that causes thicker blood so maybe somehow connect.

[tracey13 in reply to Hidden]

My mam has hemochromotosis her ferritin levels are so high she's waiting to see a consultant on 7th March. Her brother also has this he needed venesection to bring his ferritin levels down.

Tracey

[Hidden in reply to tracey13]

Hi spoke to GP today and she was great, she went off and spoke to a blood doctor about my worries and called me back, mine is not really too high only 250 instead of 150 max, so not hemo which would be in the late 100's or 1000's she said that the range they give does not take into account, age, height, sex, weight etc and that I am at the top end of normal for my age and not to worry. She said drinking makes it worse, which I hardly do also weight places a factor and I could do with losing a bit. I think also that hemo runs in families as I was told if it got worse and was that all my family would need to be checked. Tareena

[kazmoonpepper]

Hi I've had 5+ dvt and 2 pe it took me years to prove it was hereditary and that I had 2 mutant genes that both produce blood clotting. Nobody has ever mentioned cancer to me! I have pain 24/7 now but no one knows quite what to do with me as left leg is so damaged inside i feel the blood pulsing which is painful in itself let alone the daily swelling and constant limping which has bought on back and hip problems so they just dose me up with painkillers which make your head slow lol. Anyway sorry for going on a bit please if you want to know anything I will try and help.

[Hidden in reply to kazmoonpepper]

Hi, thanks for reply. I think the link to cancer is new thing. The NHS Nice report was 2012 and it mentions there about it. I just googled Dvt and cancer. It was mentioned to be whilst in A&E getting treatment, but when I said I was on HRT said it was that, which I do not think they should have assumed without tests. My mum had a DVT and her sister has ulcers and really bad legs. Both my sisters do also so maybe mine is hereditary. I am sorry to hear you are in a bad way, the pain is horrendous with just one DVT. Lumps disappearing now but still sore when I press. Take care

[Nina_noo]

Hello Tereena, I am very new on here and I have been reading your post and replies. I am just 7 days post dvt pelvis diagnosis and have had very little input in after care and advice on what I can do to help my self , apart from rest and elevate my leg (which I have been doing). There is no history of dvt in my family, I am fit, don't smoke and drink very little alcohol, yet find myself with a dvt. I am a clinical massage therapist, and totally gobsmacked by the lack of proactive care advice given on my discharge from hospital. Now I have a little more energy, I will be visiting Google scholar to see if any sensible research has been written on post dvt care. Ithink all we can do is push for answers to our questions and be very proactive in our own rehab. All the very best, Nina.

[Hidden in reply to Nina_noo]

Hi, Nina, I am going to GP this week as I have to come off apixiban in 2 weeks and it clearly says on leaflet DO NOT STOP TAKING AS YOU COULD HAVE A STROKE so clearly I am not happy about being left in limbo. I also feel like a ticking timebomb as not sure if you were told in hospital 1 in 10 people with unexplained DVT will be diagnosed within 6 months with a cancer, sorry to scare you, after just over 2 months I am getting really panicked as I was not offered the tests that NICE has recommended that NHS conduct, ie urine check, blood tests, x ray and scans on stomach etc along with a mammogram. Were you offered any of these. My A&E consultant told me I needed them and then said "oh tell you what just stop taking HRT it is probably that", I am getting so worked up about the fact that they just assumed it was that. Will post after GP visit on Wednesday as I am seeing one of the more mature lady GP who I trust. Hope you are feeling better, I don't know about you but I was quite emotional and upset about having to take blood thinners, not sure why but was just a worried about all the problems that they can cause. Take care

[Nina_noo in reply to Hidden]

Oh Tareena, there seems to be very little information made available for people in our position. I was fortunate in the fact I have been ct scanned in my chest, abdomen and pelvis. It seems to me unless you push or raise questions about things, you are left to manage by yourself (except for the bloods and anticoagulant tests). Like you I have been very emotional and fearful, mostly because of not knowing how long I will be off work, exercises that are safe to do, do I need support stockings etc. This alone causes more stress and dis-ease, on top of the initial problem. I have started doing my own research and reaching out to medical friends to try and find answers and help, and I will post them up on here for you and other people who share are health problem. I'm also visiting the doctors tomorrow, with a list of questions that I want answered. All the best for Wednesday, Nina.

[Hidden in reply to Nina_noo]

Hi, good to hear that you got the tests, did you have them the same day? I was offered them and then told do not worry it is probably just HRT. Luckily I have had the usual age related mammogram and smear test within the last 6 months, but I have the appointment on Wednesday and my husband is coming with me so that we can insist that I have CT scans. I will be bringing up the NICE NHS recommendations and see what happens. I am so fed up with it all as the reason for the appointment is to see if I can come off blood thinners, I was told 3 months, but nothing else. I was off work for 1 week as my colleagues are all super heroes who never take time off and I felt guilty, but it was agony, to be honest I just carried on as normal, no support stockings as I was not offered any. My DVT went from behind the knee and up to the middle of my thigh, it felt like a little line of cocktail sausages moving up my leg. It is now just over 2 months and they are virtually gone, maybe a little lump here and there if I press and the odd vein has popped up along the way. I was given absolutely no advice whatsoever about exercise nor stockings but will be clarifying this on Wednesday.

[Nina_noo in reply to Hidden]

My first ct was done on my 2nd day as an inpatient to rule out a p.e. the other two were done on the 5th day in hospital. All were negative apart from the obvious clot in the pelvis. The way I'm still relying on crutches and the level of swelling, I wouldn't be able to wear my uniform, and can't stand for more than 20 minutes without feeling exhausted. Good to hear your husband is going with you to the doctors, it's always good to have some support. Wishing you a good outcome, Nina.

[Hidden in reply to Nina_noo]

Hi, I cannot imagine the pain of a DVT in the pelvic area, it was bad enough on my leg. I was in A&E for about 10 hours and then had to go back for a couple of days for scans and injections into stomach, then thinners for 3 months, sounds like I got off lightly. Will let you know how I get on after my appointment, Take care and hope you feel better soon. Tareena

[relkcam]

I had a similar issue, developed a DVT with no apparent cause. Finally found a specialist who had me take blood draws to test for Factor V Leiden which is a prothrombin gene mutation. Also test for prothrombin gene mutation heterozygotes. Each alone increases risk of DVT, if both the risk is nearly 4X having one.

[Hidden in reply to relkcam]

Hi, thanks, I will mention that when I see GP on Wednesday. I seem to remember my mum having one, but she is now longer here to ask. So maybe something gene related.

[Hidden in reply to relkcam]

Hi, I was exactly the same the hospital could find no cause. I had one DVT in the left groin and PE in the lung in 2015 and was on Warfarin for months . When I stopped taking the Warfarin after 18 months I have recently had another DVT behind my left knee and have been on rivaroxoban for 4 weeks but my left ankle is still swollen. I have an appointment with a blood consultant on the 31st March, I will let you know how I get on.

[Hidden in reply to Hidden]

Hi, I am going to see GP in the morning to try to get some answers, I have just been left so do not know what I am supposed to do. I am also concerned about coming off apixiban in case I get another one, but scared to stay on it for the other reasons it brings. My iron levels are high, it is always flagged up but no tests are ever carried out, may all be connected will ask tomorrow.

[tracey13 in reply to Hidden]

My ankle was in agony after my DVT. I had post thrombotic syndrome the pain was terrible.

It's eased off now however, my leg still throbs and it's like a dull period pain in my leg.

Tracey

[Hidden in reply to tracey13]

I know the pain was incredible in my thigh, my son who is a rat bag and 18 so should no better getting touching it and trying to kick me under the table at dinners times!!! I thought I was going to pass out. Mine developed on 2nd December so over 2 months now, the lumps have all but gone and it is not painful unless I press it quite hard. Coming off the blood thinners in 2 weeks which is a relief and spoke to GP today who said chance of another once is pretty slim now that I am off HRT. Take care

[tracey13]

I've got factor 5 leiden blood clotting abnormality the increased level in estrogen causes my blood to clot. So pregnancy and taking the pill both triggered off a DVT!

Last dvt I got was from flying as with this blood disorder you shouldn't sit for long periods of time. Also you should have a tinzaparin injection before flying over 3.5 hours!

I'm now on permanent medication benefit versus risk.

Tracey

[Hidden in reply to tracey13]

Hi, good to know you can get an injection when you fly, I was worried about booking a holiday as I will not be on thinners in the summer. As mentioned to lolm above I have high iron in the blood, maybe connected will find out tomorrow when I see GP about coming off thinners, although coming off does worry me?

[tracey13 in reply to Hidden]

It's worth mentioning hemochromotosis to your gp.

Read up on it.

Luckily I'm a carrier I don't have the double gene.

Tracey

[Hidden]

Really good to share our experience's of these worrying health issues which strike indiscriminately to both sexes with disregard to age and in some cases lifestyle. Seems to be more ladies on the forum, which is fine however do ladies have a higher percentage of DVT's / PE's? Anybody got any advice of how much walking / light exercise you should be doing in the first 3- months after a second DVT occurring.

[Nina_noo]

I agree, it is good to share our stories and be heard. Since being on this forum last, I have been to my gp, whom is very good and supportive. I felt listened to and now less worried. Exercise and rehab was high on my agenda and have had a request sent to receive some physio from my local nhs. There seems to be very little information about specific rehabilitation and return to fitness post dvt (especially pelvis dvt, of which I have). Being a clinical massage therapist, I am very keen to learn more and get information out and available so people in our state of health have at least something to go on and help reduce fear and anxiety surrounding this very painful and scary experience. So far my advise is, continue to be proactive in your healthcare and don't be afraid to ask questions, and if in any doubt get in touch with your gp. Nina x

[Hidden]

Hi all saw my GP yesterday and went through everything, she was really great and listened. According to her the link with cancer is very rare and she was horrified it was even mentioned, the fact that I was on HRT was a major factor as it causes a great many DVT's as does being overweight, guilty as charged. She also said that I only need to take my blood thinners until the 3 months period is up, which is good news and that flying is ok as long as you drink loads, NO NOT ALCOHOL and keeping moving. She did say anything about stockings or not exercising, to be honest it felt less worrying speaking to her because it came across as though they are very common. Mine was in thigh and behind knee, so things may be different with groin one. Also mentioned iron and she went off and spoke to a blood specialist and called me back and said that the levels put down in the clinics are widely off and do not take into account, age, weight, height etc. She said therefore not to worry as she is not. Today I feel much happier and feel inspired to lose some weight and get myself healthier.

[Nina_noo]

That is good news Tareena.

[Bagger03]

I too had a dvt in my leg ,went to my lung, put me on xarlleto, but when I first went to hospital Dr in ER gave me a CT Scan to check for cancer, thank God nothing, still could not tell me why I had bloodclot.My specialist told me the compression socks are a scam, they don't work. I really don't know, all I know is when I wear them they irate my legs.

Bagger 03

[Hidden]

Hi Bagger, I still wish I had be given CT scan to check because 4 months on I am still waiting for something awful to happen, had I been scanned I would not be worrying. I often wonder about the tights, surely something that tight cannot be good squeezing your legs. I have not been told to wear them, just keep on with blood thinners for a bit longer and take if from there.