ET and Factor V Leiden

[Anne2751]

Hi everyone I am still looking to see if anyone on this forum has the same as me. I have been diagnosed with ET in June but I also have Factor V Leiden which is an inherited genetic blood disorder Which causes clotting. I am trying to get any information as to how it affects the ET if at all.

Thank you

Anne

[Nickthedevil]

Hi Anne I have no experience of this but Jerrymohler posted a day ago and mentioned he had Facor V Leiden. Best wishes, Karen

[Anne2751 in reply to Nickthedevil]

Thank you Karen x

[katiewalsh]

Sorry, I'm not.

[Molly_v]

I am the same, I'd be very interested in information too

[Anne2751]

Hi Molly. My haematologist has said that he doesn’t really know how it will affect me. As they are both thrombotic this puts me at higher risk of clotting etc. I wish that I could see professor Claire Harrison for some proper advice. Please if you get any information would you share it with me. Xxx

[Molly_v in reply to Anne2751]

I am due to see Professor Harrison soon, I will let you know what she says.

Best wishes x

[Anne2751]

Hi Molly I was wandering whether you had seen professor Harrison yet? Also could I be cheeky and ask how you have managed to get an appointment. Xx

[Rachelthepotter in reply to Anne2751]

If you want to see aproh Harrison. ask your local haem to be referred to her . Thats all I needed to do earlier this year. NHS gives you the right to a second opinion. The agonising bit for me was then trying to contact Guys to find out if they’d got the letter and then finding out when the appointment was. No one answered phones, answer machines were full. It was awful . Then came ordeal by receptionist when I got there. And then my local haem hadn't heard anything back when I saw him 6 weeks after the appointment. . “Not a dicky bird” was his sad response.

However, what I now know can work well in terms of just finding out whether you have been given an appointment and if so when is to contact the PALS department and ask them to find out for you. I did this on my husbands behalf when he was getting a similar blank wall at out local hospital trying to find out when his endoscopy appointment was. It worked a treat.

Its such a pity that a world class haematology team has such poor admin support. It causes huge ammounts of stress and frustration.

Worth it in the end. The clinic has been moved to the Tabard annex which has more space, and the waiting area makes it easier to chat with other people who are also waiting.

Best of luck.

[Molly_v in reply to Anne2751]

Hi, yes I saw Dr Harrison a couple of weeks ago. I got my appointment with her as my haematologist had contacted her for advice on managing pregnancy and ET. I think you can probably ask your heamatologist for a referral/ second opinion? If you do get the opportunity to go to Dr Harrison's clinic it is really worthwhile, she is such a lovely and incredibly knowledgeable lady.

I did ask about ET and factor v leiden, from what I remember I don't think there was a definitive answer on increased clot risk from having both conditions (but we were talking in terms of pregnancy). I'm sorry I'm not the best at remembering what was said in appointments, I'm usually quite stressed about them so it tends to be a bit of a blur! I really do need to write down or record what was said.

I really don't want to give you any misleading information so maybe ask your heamatologist if they can contact Dr Harrison to ask the question for you?

Best wishes x