Weak lupus anticoagulant? In need of help

[Oliversmum]

In the past year I have miscarriaged twice before 10 weeks.

Before these miscarriages I had my son without complications other then repeatedly swollen legs. After I gave birth something in my body differently changed I didn't even get a period until 10 weeks after I delivered - which was very unlike me. (I was not breast feeding)

After my second miscarriage I begged my gp to do some tests and she done a basic clotting screen. My APTT came back prolonged 39sec (35sec is top end of normal). This was repeated a month Later with the same result. I then asked to be tested for lupus anticoagulant results as follows:

27 june

Lupus anticoagulant screening test 1.23 (1.16 is top end of normal)

Confirm test SCT method 1.1

5 July

Lupus anticoagulant screening test 1.3

Confirm test SCT method 1.23

Everything else was within normal range other then:

IgA 3.6 g/l (top end of normal is 2.8g/l)

Was referred to a haematologist, who has done my :

FBC

APTT 1.3

JAK2MPL

CMPL Exon 10

Cardiolipins

B2GPl

All normal other then my APTT and she writes to tell me she has not found any anti phospholipids antibodies. But she has not tested for lupus anticoagulant?????? PLEASE CORRECT ME IF IM WRONG! As I'm am not sure what some of the tests listed above are.

I returned to my gp to be retested for lupus anticoagulant results are:

6 oct

Lupus anticoagulant screening 1.23

Confirm with SCT method 1.20

I would love to hear some opinions on these results as I am preparing for the worst outcome from this meeting. I don't have much faith in this haematologist. I'm thinking that I will have a fight on my hands to be heard and get the treatment that I want for a successful pregnancy.

Many thanks in advance

[Oliversmum]

Sorry should have mentioned I have prominent livido, issues with short term memory and fatigue - I am only 29.

[Ozchick]

Lupus anticoagulant and Anti Phospholipid Syndrome are the same thing-AKA Hughes syndrome. Are you in the UK or US? Sometimes different countries use a different reference range (or call the tests another name) but-you can be weak positive or seronegative and still have APS. Worth scrolling across and reading Prof Hughes blog for this.

In view of your history of M/C's I would find an APS specialist to see and get proper advice.

Your GP should be able to at least explain the relevance of the other blood tests that were ordered for you.

[Wittycjt]

Are you in the US. Have you asked your OB-GYN to test for Antiphospholipid and if positive does he or she know enough to be able to guide you?

[Wittycjt]

Treat you? Best of wishes.

[Oliversmum]

Thanks for ur reply. I'm in the UK London. As far as myself and GP (family dr) are concerned I have APS but she needs the consultants say so to give me heparin in my next pregnancy.

The consultant that I am seeing is supposed to specialise in APS in pregnancy. In our first meeting we did not have my blood results as they were not sent over correctly. We discussed my history etc and she said depending on my results in my next pregnancy we would try aspirin and if that didn't work, we would try aspirin and heparin. At which point I started crying at just shut down really. They took bloods at this meeting as mentioned above - but I can't see the test for Lupus anticoagulant.

I want to be ready for a fight with this next meeting as I'm so ready to try again for a baby. But I really want the best chances of successful pregnancy. Which would mean heparin and aspirin. Not half measures.

I really don't know what this consultant is thinking?

Is there any issues in giving heparin?

Sorry for the long post

[Sara_A in reply to Oliversmum]

I think generally if there has been the 2 positive lupus anticoagulant tests they don't test again.

I have lupus and aps and for my first pregnancy I only had aspirin which I've been on for several yrs then my 2nd I had aspirin and heparin. I think they could atleast put u on aspirin as that shouldn't have any effect if not needed? Why don't u ask to see a different haematologist it's ur right if u aren't happy. It's the IGg. and IGm antibodies i think they are looking at.

I'm so sorry u are going through this it's a very difficult frustrating situation and I hope u get some answers and can continue with a healthy pregnancy X

[Oliversmum]

Thank you Sara. All I want is a healthy pregnancy.

Might I ask why heparin was added for your second pregnancy?

[MaryF Administrator in reply to Oliversmum]

Make sure your attend any appointment with your most assertive and articulate, friend, colleague, neighbour or relative, and photograph your Livedo Reticularis in case it goes away, also write your medical history and family member history in bullet points, to help you at the appointment, you will need to be very firm. Best of luck, let us know how the appointment goes. MaryF

[Oliversmum in reply to MaryF]

Thank you.

I will be very firm indeed with this consultant. I feel very stuck and need to move on with my life.

On my last visit I saw the haematologist assistant who did not seem to recognise the lupus anticoagulant test and only focused on my lack of cardiolipin antibodies.

I will insist that the results that my GP has gather must be taken into account.

My apt is on the 20th of this month. Praying I am heard.

[Sara_A in reply to Oliversmum]

Let me know how u get on at ur appointment if that's ok? I'd just be interested to see what they suggest.

My rheumatologist used to include my obstetrician in his letters etc. I had same obs for both pregnancies so she understood everything (also had a loss but not to do with the aps and she was great thru everything)

[Oliversmum in reply to Sara_A]

from our first meeting I think she's going to suggest aspirin only. But I am so concerned it won't b enough and a further miscarriage or worst stillborn is the result. I'm planning to ask her out right for the heparin. Do u know of any reason that they r reluctant to give heparin other then the osteoporosis?

[Sara_A in reply to Oliversmum]

I think it's steroids that cause osteoporosis not heard of heparin but I could be wrong?

I suppose if u didn't really need the heparin (didn't need ur blood to be thinned) there would be the potential risk of a bleed if say u did miscarry for another reason?

I had aspirin only for first pregnancy and definitely had aps and was ok. But definitely ask her what her reasons are u can't have it. It's such a scary thing, until that baby is in ur arms, and other pregnant people don't always get that.

Ask for another opinion and repeat tests until U are happy not them. It's not them who have to go thru it X

[Oliversmum in reply to Sara_A]

That's exactly it; the fear, the pain and the want to hold ur longed for baby. I just want to have the best chance possible. I've had 3 positive LA tests now, but all conducted by my GP. Haematologist only seem to be interested my ACL results for some reason. That's what I can't get my head round. Google can't answer this either.

[Sara_A in reply to Oliversmum]

I think it's the anticardiolipin antibodies that cause the blood to clot but that's just my understanding from what I've read. And I think it's the IgG that's the more concerning one that's what my rheumatologist told me last wk anyway!

I'm really not being much help, I'm trying to tho because I don't want anyone to go thru that again it's the worst thing ever X

[Oliversmum in reply to Sara_A]

I do appreciate your efforts. Even if you don't have the answers that I'm looking for. It's easier to understand what someone is saying when you have felt it yourself.

Will let u know how I get on. On Thursday x

[Sara_A in reply to Oliversmum]

Yes good luck, and remember it's all about u and if u aren't happy get another opinion it doesn't hurt! X

[Sara_A in reply to Oliversmum]

I think it was because my first baby was born at 5lbs 12oz so the obstetrician thought it might help to make baby bigger. I'm not sure it had much affect as she was only 6lb 1oz. I had them both at 38wks as they wouldn't let me go too far and regular growth scans showed growth tailing off. Both are fine tho X