Blood Tests

[motorbike]

I have only had one blood test , that was April 11th . They said I had DVT and PE Mass . They said carry on for 6 months on blood thinners, Apixaban . Not sure what is going on. They said I have to get on with life. Also I am lucky to be alive . I am of course feel if I’m in the dark.

[Hidden]

See if you can make an appointment with your GP, if only on the phone, to ask what is going on and what you should/shouldn't be doing/expect/not expect, etc. Make a list of questions before you have the appointment, so that you know what you want to find out. Your GP should know whether you are under the care of a haematologist, and if so, who.

[motorbike in reply to Hidden]

Hi Thank You . My Doctor who I have never seen said I need not see a Haematologist to after I finish the Apixaban.

[Hidden]

It's when you feel in the dark is when you feel terrified.

After I had my clot in December I was terrified as I didn't know what was going to happen which I feel makes things worse than they need to be and when you don't know your mind races to the worst possible outcomes.

They gave me the medication when I left the hospital but not a lot was explained in terms of aftercare and what to expect.

I have complained about the poor communication though but I don't think anything will change with that.

How's things now?

[motorbike in reply to Hidden]

Hi yes that’s what happened to me . Went in as emergency . Box of injections,, which I could do. Then they said my own GP will take over . Just wait and see after the 6 months of taking apixaban . Thank you

[Hidden in reply to motorbike]

I finished my 6 month course last month but I asked if I can stay on rivaroxaban for a bit longer as I am frightened of having another clot so my gp wrote me out 3 months worth of prescriptions for them and said we will review how I am doing in 3 months time which was a fair deal.

[EDBrae]

Unfortunately it seems that there is very little support with conditions like this in comparison with other illnesses or health problems.

[motorbike in reply to EDBrae]

Thank you .

[Smythian]

Hi Motorbike

Your experience is, unfortunately, all too common. However, your clotting episodes are significant and potentially life threatening.

Apixaban is one of the family of NOACS (Non Vitamin K Antagonist Oral Anticoagulants) that is regarded by the majority of Haematologists as being the best, and safest on the market.

The others are Dabigatran, Rivaroxaban and Endoxaban.

I am on lifelong Anticoagulation and taking Apixaban, with no side affects at all. I can advise that, post an episode higher dose of 5mg twice a day, the therapeutic dose is 2.5 mg twice a day.

You will need liver function tests twice a year.

The very best of luck to you!

[motorbike in reply to Smythian]

Thank you . My Mum died age 37, her sister41 they both died of blood clots .Nights are the worse . My leg goes down, and I think that’s good . However I walk, and up it comes again . I thought exercise would be good . However I’ll carry on taking the Apixaban. Thank you so much

[Nancylm2015]

You NEED to see a Hematologist. Especially if you have a family history! One of your doctors should order a genetic blood screening after you discontinue blood thinners.... many of the tests are inconclusive while taking blood thinners. With my first clot, I had the same treatment---lovenox injections (I was pregnant, so they assumed it was related to my pregnancy) and once off the injections (after 6 additional months), my doctor ordered all of the testing to rule out genetic blood clotting issues (Protein S, Protein C, Factor V Laden, etc.).

I agree with the other responses here---you should definitely contact your doctor-- be a squeaky wheel!! You have to demand response, unfortunately, otherwise they assume you are satisfied with what little info you have (which is very distressing, I know).

I hope that you get the support you need! It is very stressful and scary, and often times there are no answers. I have had every test currently available and they have no reason for my secondary DVT (13 years later). I do have a genetic reason, but it hasn't been identified by the medical profession to date--- and so I'm a "blood thinners-lifer" now-- at a younger age, unfortunately, and with no real answers.

Stay strong--- sending you my best wishes for healing!

[Hidden]

Make sure you do see a doctor you cant just quit after 6 months and hope for the best so make sure you see a dr, even if one said you don't need to you really do.

[motorbike]

Yes I will . I thought they just wouldn’t , just give you 3 months of Apixaban . That’s it . I will in September ask again . Thank you for reply