Factor V leiden and ET

[Bohus]

Hey everyone!

My hematologist told me that I not only have ET but that I also am Factor V Leiden positive. I have googled this but cant figure out what it means for me. Does anyone know anything about this?

[Aneliv9]

Maybe is the Jak2 mutation?

[Chaz1]

Googled it to have a look - which can be a risky game for info.... Anyway probably not easy to get a response unless someone else has the same mix as you. Factor V leiden appears to be a rare inherited condition which increases your risk of clots, ET obviously also increases your risk. Did you get diagnosed after a thrombosis? And are you on meds? I would assume, but only from what I've googled that even if you came under the low risk for ET - ie no previous thrombosis, under 60, platelets below 1000 - your heamo would probably still look at some sort of meds to control potentially both to help keep them on a happy level. This is only what I've garnered from the internet. Does sound like you have a rare combination so really important to talk with your Haemo & specialist nurse with any concerns. Obviously we are all here to support but our medical info will be slightly different. I've not looked but might be a support group for the factor v leiden as well so you can have both sides help. Be interesting to know how many have the same combination as well. Best of luck & health

[Applesnpears]

Hi, The link below seems to be a good guide to this condition from a reliable source. Its also mentioned on the NHS information website.

It appears the risk of getting abnormal clots with Factor V Leiden greatly depends on whether you have one or two copies of the mutated gene. You need to discuss this with your haematologist and how it might interact with your ET.

ghr.nlm.nih.gov/condition/f...

[Bohus]

Thanks for your responses! My hemo doesn’t seem to worried about the combo. I am on aspirin only. However I did have a clot last year. This scares the crap out of me. At first I didn’t think to much about the Factor V Leiden but now I am beginning to think that maybe I shouldn’t be in the low risk group at all...... I will try to study this a bit further now. I got both diagnosis at the same time and the focus was only on the ET diagnosis......

[tracey13]

I have factor 5 Leiden I've had three DVTs basically any increased levels of estrogen thickens your blood and makes it clot.

So during pregnancy and taking a contraceptive pill heightens the risks of a clot which I have two clots one from pregnancy and one from the pill.

My third DVT was from flying so I'm now on blood thinners for life .

I still fly I just wear my flight socks and drink plenty of water .

Tracey

[kiwibird37]

Hello everyone,

I have Leiden Factor 5 heterozygous, only one gene instead of two. Nine years ago when I had my son he was 2 months premature as I had preeclampsia. After that, they did a thrombophilia panel and found the Leiden Factor 5. I've always has slightly elevated platelets.

May 2017 my 11 year old daughter was diagnosed with Acute Lymphoblastic Leukemia and 3 months later I was diagnosed with ET Jak2 positive. Platelets as high as 699 and 3 months ago they were at 600. Currently take a baby aspirin.

I often wonder how these are all related and if she inherited the predisposition for Leukemia. Docs say they are unrelated and she is negative for Jak2. I believe stress can make these conditions worse because my platelets rose to a high during her peak treatment. Oh I am 48 and no clots. My daughter completed her treatment and is doing well.

Thank you all for sharing. It is comforting to hear others getting along with this.

Barbara

[Jlah in reply to kiwibird37]

Hi Barbara. I hope your daughter is recovering. 3 generations on my mums side have jak2+! I wish they had tested my sisters and I when my mum was diagnosed- it may have helped me to avoid a stroke last year. Also 47. Jacquie x

[kiwibird37 in reply to Jlah]

Hi Jacquie,

So sorry to hear about your stroke. How you doing now? Any diagnosis for MPN?

That is one of my biggest fears. I've had moments of feeling unclear and foggy and always reach for the aspirin.

My daughter is doing well. Finished treatment this past September after a 2 year fight.

Barbara

[Purple478273 in reply to kiwibird37]

Hi Barbara. So glad to hear your daughter is doing well. That must have been terrifying. My father had ALL and I can’t imagine they are not related either.

I would love to know if you had preeclampsia with both pregnancies or just one. Did you have HELLP? No one seems to have a good feeling about risk factors for me for a second pregnancy and while it’s a ways off, it’s been on my mind.

[kiwibird37 in reply to Purple478273]

With my daughter now 13, she was a month premature, my water broke, no preeclampsia with her ( I was 35). She was a vaginal birth but had a short umbilical cord. I believe from clotting too soon. Wish someone mentioned that I should be checked further then.

With my son, 9 now, (I was 39) was having blurred vision and severe swelling. went to get checked and they found high blood pressure and sent me to ER. Elevated protein and liver enzymes. Delivered within hours. It's such a blur I do not recall if I had HELLP but I think so.

So happy to have the great medical care and my son is doing very well.

Good luck to you!

[Purple478273 in reply to kiwibird37]

Thank you for sharing! Yes, HELLP is short for Hemolysis, elevated liver enzymes, and low platelet count, so your elevated liver and your protein level would’ve been caused by that. It’s a serious condition that involves platelet malfunction and I’m very curious if it has any connection to mpn’s. There doesn’t seem to be a lot of literature on it but I’m hard-pressed to believe that there’s not some connection. I’m glad you had good medical care and your son is doing well. My 2 lb, 10 ouncer is now 7 pounds

[Purple478273]

Hi there! I have both. Calr+ ET and factor v. My hematologist doesn’t think it’s a significantly concerning combo and intends to treat as if it was just ET, but did have me on 12 weeks of lovenox instead of 6 weeks postpartum due to an increased risk of clots. I just had a preemie in October born 2.5 months early due to severe preeclampsia and HELLP. I have a follow up with my specialist at Hopkins in a month and I intend to ask about the combo of ET and Factor V, and also about HELLP because that has platelet involvement as well. I will share any info she provides.

[Purple478273 in reply to Purple478273]

Also - she has me on aspirin only, although I’ve been on lovenox for a year due to fertility treatment and pregnancy. I just stopped that recently since I hit the 12 week mark.

[Bohus in reply to Purple478273]

Ok I hope it works out for you. Please let me know if you learn anything new regarding the factor v+ET combo. I am a bit worried.... Are you heterozygous or homozygous Factor v?

[Purple478273 in reply to Bohus]

Hetero. You?

[Bohus in reply to Purple478273]

Yes me too.