What caused your blood clot, did you ... - Anticoagulation S...

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What caused your blood clot, did you have a clotting condition i.e. thrombophilia, surgery or other risk factor?

warfarin1 profile imagewarfarin142 Voters

Please select all that apply:

27 Replies
Impatiens profile image
Impatiens

You didn't include AF in your list - this is high in the list of causes of strokes

qbuster profile image
qbuster in reply to Impatiens

Exactly the comment I was going to make.

Well spotted Impatiens and of course you are correct AF is high on the list. The main aim of the poll was primarily looking for other causes that are not high on the list. But we do need to know about any cause's of blood clots but can only put eight questions on the poll.

I would appreciate everyone's help by doing what Impatiens did and inform us by making a comment. I will email the mediator and see what else we can do to improve the poll!

qbuster profile image
qbuster in reply to

But surely if you leave out one of the most common causes then you are reducing the value/accuracy of the survey because AF patients - like me - won't answer the questionaire?

Of course, some might respond via the 'No apparent cause' option but then that wouldn't be accurate (because after a stroke related to AF, then most victims will know that there was a 'cause'.

This gap in the design of the poll is born out that approaching 50% of your respondents (45% as I write this) are 'No apparent cause' - my guess is the chances are that most of those are AF.

You have only got 12 votes so far - why not add AF as another condition? I will skew the result slightly but not nearly as much as it would leaving AF out.

qbuster profile image
qbuster in reply to qbuster

Sorry, I meant to add that if you only have 8 questions, then replace the one about cancer or immobility. I suggest these risks because they are just the sort of condition that the patient would expect to report as 'Other condition' and you will have less comments to filter as a result.

in reply to qbuster

Hi qbuster

Thank you for your comments, which are greatly appreciated. It was my mistake not to include AF and have contacted our mediator to correct the poll and they have approach healthunlocked why we can't have more questions rather then remove any questions.

Once again, I apologize to all AF members but please continue to complete the poll until we can resolve the problem.

pucc1n1 profile image
pucc1n1

I had DVT 10 years ago and all fine and nothing until August 2012 when out of the blue, couldn't breath and diagnosed with massive PEs. However, was aware that 70% of DVT suffers do have a re-occurence, but sometimes just rights itself.

in reply to pucc1n1

That sounds like another poll to find out how DVTs or PEs members have had. Any suggestions?

pucc1n1 profile image
pucc1n1

When my INR is too low, I get a prescription for Clexane - a low molecular weight heparin to prevent further clots which I inject myself in the stomach.

in reply to pucc1n1

Hi pucc1n1,

An interesting solution to a problem everyone has who are on anticoagulants that need an INR test, is why are you dropping below your therapeutic range and becoming subtherapeutic. The main reason people drop below their therapeutic range is that they are left too long between INR tests. If you send me your INR test dates, your INR results and your therapeutic range i.e. 2 to 3 or 2.5 to 3.5 I will enter them into my excel spreadsheets and work out the percentage you are in range and also your therapeutic time range, how well the anticoagulant is working. Please email the information to peveshome@btinternet.com in any format and is totally free.

pucc1n1 profile image
pucc1n1 in reply to

Hi Firemansam

We are already in touch as you kindly altered the Excel spreadsheets that you sent to me as my therapeutic level is 3 to 4, so bit higher than most.

Thanks.

Redneck1 profile image
Redneck1

I am not sure that I should be in this poll, but will leave you guys to decide whether I have got it right or wrong. I had a MI in April and as a result ended up with a single stent. Nobody actually advised me of the underlying cause but common sense tells me it was high cholesterol coupled with a lack of exercise arising from the need for a total knee replacement (which has gone on hold as a result of the MI, the classic "Catch 22" situation) Latest news is that my knee is due for replacement in Feb 2013.

Hi Redneck,Yes, you are in the right community box and we do offer a free leaflet on "Knee Replacement" at anticoagulationeurope.org under publications. If you do not have access to a computer or you have any problems finding the leaflet then please telephone 020 8289 6875 and ask for further guidance.

You don't say if you are on any anticoagulants or anything about your heart attack i.e. myocardial infarction (MI) except the stent but it's good that they have booked you in for Feb 2013. The important thing is to understand the need for a risk assessment for blood clots when in hospital and the free leaflet will explain this in greater detail.

Please keep us informed of your progress.

Rassociates profile image
Rassociates

I would only add that although mine was a spontaneous bi-lateral PE it was thought the most likely cause was excessive annual mileage (70k+) in an automatic car as the clot eminated from behind my left knee. Specialist advised that no driver should go longer than 2 hours without a break and a walk even if round the services car park.

Hi Rassociates,

Thank you for the advice something I'd not heard of anyone getting a blood clot while driving an automatic car but not surprised as we know that long periods of sitting or lying around are at a higher risk of a blood clot.

Donnac70 profile image
Donnac70

I developed a DVT following an operation on my hand. I was on the pill at the time. I was prescribed warfarin for 6 months and when I had finished this course, my doctor suggested some blood tests in case there was an underlying cause. I was diagnosed with Factor V Leiden, which is a hereditary blood clotting disorder. My family didn't know this existed and have also been tested. Its been hard coming to terms with this but I'm pleased they can now take preventative measures to stop any future occurrences.

I was on the pill for a long time and its widely known that thrombosis risk is much higher when taking it. The pill wouldn't have been prescribed if it had been known that I was carrying the factor v gene. I wish there was a test available to girls to check for clotting disorders before prescribing the pill as it is such a high risk medication.

in reply to Donnac70

Hi Donnac70

That seems good advice that before you go on the pill you are tested for Factor V Leiden and something that need further research.

Donnac70 profile image
Donnac70 in reply to

It would be great to remove high risk women from being prescribed the pill but as it would involve a genetic test, I think the testing costs would outweigh the benefits. I think the pill is handed out too easily without exploring the implication to the woman or the NHS. I hope a test becomes available in the future.

in reply to Donnac70

Hi Donnac70

Your concern about women being prescribed the pill was sadly highlighted in the Daily Mail 24 Nov 12 "DVT kills teenager who took the Pill to cure acne". Hours before her death, she had gone to an out-of-hours surgery with "knife-like" pains in her thigh. She saw a newly-qualified locum GP, who excluded DVT as a cause and give her antibiotics instead, and told to see her GP within two days if she was not feeling better. Sadly, once again it's too late.

ACE has already highlighted the need for more education for patients, nurses and GP's if we are to avoid reading these type of headlines. We only recently read PBirt story about the lack of anticoagulation knowledge by one orthopedic hospital after surgery. Members who have read my blogs know, I always recommend patients going into hospital for any medical procedure to discuss their warfarin therapy, especially after the procedure. Read PBirt excellent written story "Anticoagulation and Surgery" if you need convincing.

tracey13 profile image
tracey13 in reply to Donnac70

Hiya, I was diagnosed with factor 5 leiden 17 years ago after the birth of my 2nd child. I finished treatment and was told. The increased level of estrogen caused the clot.

I had a previous 2 clots to this 6 years before this one caused by they pill and my first pregnancy.

So in all I've never ever had any follow ups in 17 years.

Last month I thought I had another clot in the same leg but convinced myself I pulled a muscle. I flew home from turkey totally past myself. I took two asprins and wore flight socks.

That day I went to hospital I was shocked to the fact I had one massive clot from my groin all the way down the thigh to my knee.

I'm now on warfrin for life.

I suggest anyone with factor 5 who have had a history of DVT should go for check ups.

It's a simple d dimer blood test.

My father and his sister have got factor 5 leiden they have never had any bother they are in their 70s now.

I'm now 45 years old it's early day only been on warfrin for 12 days so they trying to stabilise my inr levels.

ELCgirl profile image
ELCgirl

Hi, How do I vote on this poll? Do I just leave a comment. I had DVT and PE then it was discovered that I have factor V Leiden (homo) two faultiy proteins. Life long warfarin user now. And the rest that goes with it!!! Support stockings, drinking lots of water, eating correct foods, regular blood tests, don't sit still for long periods, etc.

Hi ELCgirl

Sorry for not getting back to you sooner but have been out of the Country. If you don't fall into any of the question then just leave a comment please.

speacock36 profile image
speacock36

I was on depro Vera injection for birth control and they said it could be because I have the brca1 gene. After reading about the injection which I was on and off for 14 yrs it states to take caution with people with this gene. Nobody told me!

Pvrgirl profile image
Pvrgirl

Yasmin birth control and sprained ankle

Sunshinegirl00 profile image
Sunshinegirl00

Was told my two blood clots in Kung were caused by Ovarian cysts which were diagnosed as cancer but after radical hystertomy was diagnosed with severe endometriosis

Sunshinegirl00 profile image
Sunshinegirl00 in reply to Sunshinegirl00

*lung*

sjanee11 profile image
sjanee11

Had an ablation that contributed to the clot