Any doctors out there that know about Factor 5 blood conditi

Sorry, not a doctor (not a people one anyway). I did a little research on this a looooong time ago, but don't remember much. My sister has it and had to take heparin injections when pregnant (she kept having miscarriages due to blood clots). I was tested but had a problem with S protein or something - I have to take aspirin when I'm pregnant to prevent clots.

So, while I'm not being helpful, you're not alone, I've heard of factor 5 ligand (or whatever), but probably best to ask the doctor who diagnosed you all of your questions or go see a hematologist.

Hi hon...I'm a nurse too. It's scary to see something in the media that links to you.
Being that you have Factor V Leiden means that you have a 5% chance greater than the normal population of getting a blood clot. It's something that's not usually treated (unless you plan on getting or are pregnant) until you get a blood clot. You can ask your doctor if aspirin(helps thin the blood) is a good option for you. Again, as previously stated they need all your medical information and current list of medications that your taking to offer suggestions.
Birth control pills in themselves have an increased risk of developing blood clots as can flying (esp. if you stay seated for long periods of time and don't do any foot flexion exercises.)
It's a genetic thing so your children should probably be tested (esp. your daughter's for planning for future pregnancies).
I hope this helps and that you get the answers you are seeking from your doctor! Good Luck!!!

:flowerforyou:

Pam

Tammy, I suspect that you have a heterozygous mutation (meaning you only have inherited one gene), which means you have the more mild version. Being very overweight can increase your chances of developing a clot just as much as a heterozygous factor v leiden mutation can. So, if you have successfully carried pregnancy or pregnancies to term and are on the pleasingly plump size like me and have managed to not develop any clots, you almost definitely have a mild form. If the specialist you said you saw was a board-certified hematologist, then you should be fine. You definitely need to take precautions when travelling, however, and let doctors know before surgical procedures, etc.

I'm a medical lab tech, so not a doctor. However, you will be unable to use any estrogen based birth control as it will aggrivate the condition. Unless something new is out you're going to have to use condoms and the like. I'm not an expert on birth control but I think there are some IUDs that don't use hormones, so that could be an option. Maybe one of the nurses can confirm that.

Either way, this is something to ask your doctor about.

I am a general internal medicine doctor, not a hematologist and cannot give you specific advice not having a formal patient-doc relationship with you but I have diagnosed the condition and had patients with the condition. I don't see a real need to see another hematologist if you already saw a specialist and have a diagnosis but it sounds like you might just need to communicate a bit better with your current specialist if you have specific questions. You might need to make another appointment if you have a lot of questions. Write then down and be as specific as possible with any concerns you have. Most docs should be happy to answer the questions but sometimes at an initial consultation etc might have been short on time or perhaps he/she wasn't aware of what your particular concerns were. In my experience if you yourself have not had a clot most docs would not treat you with blood thinners at this point. If in fact you do develop a clot and have an underlying risk factor such as the Factor 5 Leiden mutation that would normally be an indication for lifelong blood thinners. It is important that any health care providers know about your diagnosis so if you have surgery or in a high risk situation they would be especially diligent about preventative measures. You would want to avoid situations that would increase clotting risk like birth control pills etc. Also educate yourself about the signs and symptoms that might be associated with clots such as leg swelling, leg pain, shortenss of breath, chest pain etc so that you do not delay in getting a proper diagnosis should you actually develop a problem.