Pulmonary Embolism Support Group

Sharon,

You're under great care with Craig; he's one of the best.

Here is some info regarding elevated FVIII:

http://www.fvleiden.org/ask/32.html

I'm not that knowledgeable about
phosphatidylinositol (PI) so will have to do a little research with Dr. Moll to see what patient information may be available and get that info passed to you.

How high was your factor 8? I was at 151, but since the cut-off for normal is 150, they were not concerned at all and took me off of warfarin. I don't know anything about PI...I may have been tested for that..I will have to look back at my screening results.

take care,

Nancy

Hi Tom,
Oh thank you so much! I can't tell you how much I appreciate the info. Ironically on the way home from Dr. Kessler's today I was telling my husband about you because I learned about Factor V Leiden from you and was saying to him I wondered if you knew Dr. Kessler. Small world. He is seriously the best thing that has happened to me in months. My former hematologist was clearly not the best fit for me and I am so relieved to have Dr. K . In my very first meeting with him I already learned more than I had in the last 9 months. Today was the follow up to discuss all the genetic testing he said I should have had done originally. Thank you so much for asking about PI for me.

Nancy- My Factor viii was 363. I didn't even know much about the range until looking online tonight. I don't know if that is helpful to you, but I wish you the best!!

Thanks again so much to both of you. Have a great 4th of July!

Sharon,

The elevated Factor VIII, as Nancy had mentioned, may or may not really mean anything in regards to having a clotting disorders. My son, who is heterozygous for FVL, had elevated Antithrombin III but it didn't equate to him having ATIII.

I had asked about PI1, which I was told is actually PAI-1. Not a lot of data is out there on it and whether or not to be concerned about having it is undecided.

Sorry I don't have more to offer.

Next time you see Craig, tell him Tom Hogan from NATT says hello. Last time I had corresponded with him was several years ago when a young medical female sailor from the Navy contact me about having 4 PE's and 5 DVT's since bootcamp (over a period of 2 years). The oral contraceptives were the root of this. She was being medical discharged by the National Naval Medical Center in Bethesda. I had asked if he would be able to get her in soon then later in hopes of saving her career. Unfortunately the Navy medical discharged her before it happened.

Craig is also a friend of my clot doctor, Dr. Sam Goldhaber up in Boston.

Hi Sharon -I was thinking maybe you were speaking of PAI-1 instead of PI-1. I am homozygous for both PAI-1 (4g/4g)-the worst polymorphism combo for this one, and homozygous for MTHFR 677. So I too have not 1, but 2 clotting disorders. PAI-1 was hard to find info on. Since I have 2 plus I have had a PE with no origin determined, I have been advised to remain on coumadin for life. What did your new Hematologist recommend?. The MTHFR 677 alone is not one to worry about, however, when you add the other one on plus the fact that you have already had a clotting event , it majorly increases your risks for developing further clots. I was told that it decreases your body's ability to break down clots as effectively as someone who doesn't have it. It also makes you more prone to both venous AND arterial clots. Info given to me by a genetic counselor. Believe it or not, I had never seen a hematologist until last week after I asked for the appointment from my PCP.(been doing this for almost 2 years now) I am glad you are finding some answers and have found a good doctor to trust in. Not an easy task! Blessings, Teri

Hi Sharon

I too had a slightly elevated factor 8 -167 but it has never been mentioned to me that this has a genetic cause.

I was told it is the result of the a clotting problem rather than the direct cause. Its more a matter of finding out what has caused the factor 8 to be raised.

I will investigate this when I see my heamotologist next.

Take care

Kate xx

Hi everyone,
Thanks so much for all the info. My husband took notes but we didn't get the spelling of the PAI-1 and I'm still waiting for copies of the paperwork from all my testing so we weren't sure how to spell it all. Rather than calling/emailing my doctor all the time I thought I would see what you all knew about it all. :) So thank you so much!!!

I should have probably clarified in my original post, but I was rushing since we were leaving town for the weekend and I was panicked and anxious to learn more. I learned from Dr. K that having PAI-1 and elevated Factor 8 are in fact both genetic factors. For me he explained that one decreases my body's ability to break down clots and the other increases my chance of having clotting.

Tom- I will definitely tell him hello for you. In my initial appointment we talked about potentially doing a symposium together due to my line of work, so I'm hopeful we'll get to do that.

Teri- thanks for the info. Dr. K said I do not need to be on anti-coags for life, especially since I had major abdominal surgery and took oral contraceptives so we know what brought on my ordeal. I will however have to take lovenox every time I fly, and would need to take them if I ever have surgery, major trauma, cancer etc. Pregnancy is also very risky and we'll need to figure out what to do on that front next. I'll keep you posted on what I learn from him in hopes it might help you too.

Kate- I was definitely told that elevated Factor VIII was genetic and in fact mine is super high. I don't know if being super high makes a difference, I didn't ask as many questions as I should have and will likely need to follow up. I'll keep you all posted.

Thanks to all of you. Hope you all had a great holiday weekend!!

Sharon