Is Aspirin Enough?

[Moon_Shadow]

Hi there. I was diagnosed in 1999 after recurrent miscarriages. I also have Factor V Leiden and Protein C or S deficiency (can't remember which one :/). I am on 75mg of Asprin daily (which I put myself on!). I have had 1 DVT in my lower leg. I get all the symptoms of Hughes eg. Foggy brain, Fatigue, Vertigo, etc. etc.. I took Heparin and Aspirin throughout my 2 subsequent pregnancies but now I feel like I've just been abandoned. I don't see a Consultant and no-one seems interested in how I'm doing. I would think things have changed over the last 14 years! I don't particularly want to be on blood thinners but I do want to feel 'normal' and not have to worry! Thank you for your time. :D. Dawn

[MaryF Administrator]

Hi, If I were you, I would go to to your GP, (try emailing your GP's secretary with the charity website details: hughes-syndrome.org/ - drawing attention to the list of consultants that can be accessed, send this a few days before your appointment marked for GP's attention).

It would be better if a consultant with a working knowledge of the condition re assessed you, only they can really decide what you should be on, however I expect from reading through the various member posts on here, it will give you an idea that perhaps to push for more detailed care is a good thing, as the condition can change over time! If you get nowhere with this approach, there is always the private route, many of us also have had to attend London Bridge for help, or indeed other consultants from the useful list on the charity website. Best of luck and let us know how you get on. MaryF x

[Moon_Shadow in reply to MaryF]

Thank you so much for your reply Mary, I've decided I'm going to the doctors this morning. I'm so fed up of all the symptoms. I'm taking my husband with me because I am too soft and won't insist. he he. Thanks again. x

[MaryF Administrator in reply to Moon_Shadow]

If you possibly can, quickly write up your symptoms in bullet points, as the appointment will fly by, and it is easy to forget something. Also print out the list of symptoms from the charity website, and also the page for the professionals to contact! Also provide them with the link to to the website written out. Let me know if you need any more information. It is great to have your partner there as an advocate. I did this for somebody locally recently, (not for Hughes Syndrome), but something else equally serious and the results in their improved care was almost instant. MaryF x

[Moon_Shadow in reply to MaryF]

Mary, why is London Bridge so good at diagnosing and treating APS over other options? Thank you. x

[MaryF Administrator in reply to Moon_Shadow]

It is about choice, if you have a GP who does not feel the need to refer on the NHS, or perhaps you are under a specialist who does not fully understand the condition, at times patients do attend the facility you mention, to shift the block in their care.

Many patients on here have very good NHS treatment and many who work at London Bridge also work in the NHS. If

you have a GP who has a good listening ear and good diagnostic skills, and you can very articulately spell out how unsafe it is for you not to be referred swiftly, then they should be helping you. If however they do not, then it may help to do so. I attend appointments at London Bridge and also on the NHS, it is crucial with my extended family pattern, that for myself I have covered all options. You are in a good position, as you already have a diagnosis which is half the battle over.

Bottom line here, regarding London Bridge if you have a block in your care, you can self refer, due to it being a private hospital.

Good luck, let us know how it goes. MaryF x

[Salty]

Hi Dawn, I did Prof. Hughes' "heparin therapeutic trial" (which your physician can find in the medical literature) for similar symptoms with great improvement and a bit later when things worsened added plavix and now have no symptoms. I have never had a thrombosis. Despite your symptoms which will likely respond to anti coagulation, It would seem appropriate for you to be on lifelong anti coagulation given your multiple clotting abnormalities and history of DVT.

[Moon_Shadow in reply to Salty]

Thank you so much, I booking an appointment with my doctor today and I'm taking my husband with me so that I won't be fobbed off!!! I've woke up with dizzyness/vertigo this morning and I'm supposed to be going a lovely walk in the forest with my friends and I'm so fed up! xxx

[lonewarrior]

Hi there,

I have Leiden V, activated protein resistance.

Firstly you should have had a six months course of Warfarin for your first DVT

After 3 years clot free , you return to the same level as if you had never had a clot, if you do have another then they will place you on warfarin for life

I had a clot in my calf that broke off and collapsed my right lung, 13 years ago, because of the pulmonary I was treated with Warfarin for 12 months instead of the usual six, I had no further episodes till a year ago when I got a clot in my groin, ( same side as the others) I am now on warfarin for life.

Secondly aspirin is used to treat arterial clots, we have had venous clots, totally different , do not self medicate with aspirin, hoping it will stop a venous clot forming.

What happens with Leiden V the blood starts to clot but their are no brakes to stop the clot getting larger ( too large) it is protein c that does this , and we have an activated resistance to it.

Just take life normally and don't worry about clots, if you have three clear years the risks go back down to those if you hadn't had one.

You know the symptoms of a clot , ( its a pain you don't forget) if you get any then please return to the docs at once

Don't take aspirins at the same time as warfarin, one thins the blood and is used for strokes ect one stops vitamin k making clots Warfarin is not strictly a blood thinner it is a vitamin K antagonist.

I was treated at Sheffield by Professor Preston who was the worlds leading authority on Lieden V at the time, he developed the tests for it , all my family carry it and I have passed it on to my two sons ( you cannot be tested until you are adult) out of 6 siblings only 2 of us have had any trouble, both caused through immobility.

You should have a card , just to let them know at hospital in case of accident , immobility ect that you carry Leiden V.

Please don't worry, and just carry on with life, you may never have another clot, if you decide on another child they will as a precaution give you low weight molecular heparin as a precaution.

Otherwise live life to the full , and don't worry.

I am on warfarin for life, after clot in calf, lung, and later groin, all caused by immobility .

this is probably why you have had no explanation, they will see it as your cured for the first clot and after three years the chances of another revert to those as if you had not had one ,

My father and his father has the factor , both had no clots at all.

Don't worry, just live life to the full, and enjoy