DVT and factor v leider do I get tested any help please?? thankyou.

[jowill71]

Hi, My hip op was cancelled a few weeks ago as a tap on the shoulder while going to a walkin centre for ear infection I asked her to have a quick check of my leg whilst I was there. she referred me immediatly to hosp where they found 2 Thrombophebitis in my calf. My grandad sadly passed after 8 heart attacks age 64 and my mum passed aged 43 after her 2nd PE. I have been on clexane now on Warfarin 10mg daily my INR is 3.5 and rising (it was 2.6 3 days before) I am thinking I should get tested for Factor V Leiden as I am scared and also if I have got it if my kids have it too. my son was born with a heart condition requiring open heart. I am 43 this year and all this is worrying as I am afraid.I am also a smoker and have been told not to make any changes?? It has all come as a lifechanging confusing experience as it all started 5 weeks ago. also I have had strange memory loss episodes and I feel tired and fuzzy and get headaches more. how can I help myself get better and should I be tested for this my blood type is A+ many thanks folks..

[Hidden]

Hi Jowill71 and welcome to HealthUnlocked. You certainly have complicated medical circumstances and not for amateurs to give judgement on. My strongest advice would be to stay very close to your GP and any consultants he/she refers you to and be persistent with them; they are the ones with the answers. INR of 3.5 is not abnormal and no worry. I would also be inclined to say that giving up smoking if you can, or at least cutting down as far as possible will help you medically in almost any circumstances. All the very best and do please keep in touch and let us know how you get on.

[jowill71]

Thankyou, I will...although its really hard to see my GP as they are always full and appointments are 2-3 weeks wait. Thankyou for replying.

[Pete-1 in reply to jowill71]

When you ring for an appointment with your GP, remember you must insist to the reception person that your appointment is urgent. You may have no time to be fobbed off. Difficult to tell how these things are going to go.

[jowill71 in reply to Pete-1]

Thanks Pete, have got an appt with a locum on Friday...hmmm wonder how that will go...cheers for replying my post.

[daisyd]

Gosh what a good job you asked about your leg and are now on Warfarin a life saver. I have factor v leidons and also Hughes syndrome maybe worth having a look at their site on here. I take high doses of Warfarin and have to have a INR of around 3.5

I am trying not to say anything about smoking, but you really must give up as an ex smoker I know how hard it is anyway it's up to you.

Wishing you well, sorry if I have worried you

[jowill71]

Hi daisyd,thankyou for your response,hey I gave up last night not smoked since 5.45pm reyyyy although I could murder one right now haha. Am going to try and get appt today. With your condition how do you cope with everyday stuff? Does it take over? Did U inherit it sorry for all the questions but I am curious to know I case I have a disorder. And yes very lucky I asked doc as I was about to walk out of door and due to travel to London for a long awaited hip op. Doc said I have guardian angel!.kind regards jo

[daisyd]

Well done for giving up, I drank loads of water giving me the feeling that it was clearing my body of all the nicotine and spent so much time visiting the loo I didn't have time to smoke.

I believe I have a guardian angel too I had my DVT while pregnant was admitted to hospital and it save my sons life 5weeks later he was born at 1lb 14oz due to clotting in the placenta my son now 33 and has 2 children of his own.

Nobody else has it I think although my dad and his brother both had DVT'S.

I have a very severe form of Hughes syndrome which has affected my brain, so I have had to give up work, I had a heart attack at 51 due to a clot.

There are thousand of people with factor v leidons, I can't remember exactly but quite common. Some of my family members have it, with no problems.

Hughes syndrome tests are not 100% at the moment, blood tests need to improve so Drs are a bit reluctant to do it.

Have a look at the info on their site and if you feel it could be you ask the Doctor at your appointment, after years of no treatment apart from Asprin, I am now on Warfarin, I think if I had been put on Warfarin at the beginning of all my problems, I wouldn't have been so bad now.

Warfarin has helped clear my brain of the fog I was having and will have to take it forever which is good. I have my own coagucheck machine so I can test my own blood, handy for going on holiday etc expensive though

The Diet with warfarin is not a problem, I just try and eat the same amount of vit k a day there are some good lists.

I am more than willing to answer any questions as I really wish I had known about the condition earlier, so if I have missed anything or you want to know anything else please feel free to ask

Take care xx

[jowill71 in reply to daisyd]

Thanks hun thats sweet of you...funny how that tap on the shoulder comes to you eh? seems like you have been through quite a lot...I often wonder now if I have a blood condition if it may have contributed to my son having heart surgery @9 days old. mind you he is an 18year old 6'4 lump of lovelyiness now...anyways waffling...thankyou for your reply and still not smoking

[inHospitalnowScared]

Well done on the not smoking it is a tough thing to do but extremely worthwhile, I went cold turkey from 50 a day so know it is tough but worthwhile.

Hope things are going well.