2 early miscarriages, sub-chorionic haemorrhage, lifelong migraine, but negative test result

[Rigamorph]

Hello all! First posting today, wondered if any of you had any thoughts. My brief history: migraines 'diagnosed' in childhood, no other symptoms until TTC, first pregnancy miscarried at 7.5 weeks, 2nd pregnancy confirmed normal at 8 weeks with heartbeat but SCH, miscarried a week later. Decided to go privately for a consultation but tests quite expensive so decided just to start with APS test as history of migraine. Got the result today, all it says is 'Antiphospholipid antibody' = 2.54 (0-10) so negative but does not say which antibodies have been tested. (That is literally all it says). Surely they should have tested a variety (LA, aCL, glycoprotein etc)? Also shouldn't it say whether it was IgG/IgM etc? Could it be a cumulative 'total' count?? The lab used was one called TDL in the UK. Does anyone think it is worth going down to London to have the full medichecks blood test which tests all of the aforementioned antibodies? I am in North Wales. Thanks!

[Rigamorph]

Just rang the lab, told it was just 'phospholipid IgG'. Sounds to me like I have only been tested for one of the several subclasses. In which case not enough to rule out a diagnosis of APS??

[Yllek in reply to Rigamorph]

Hi and welcome

I'm sorry to hear of your losses. You definitely need all the tests done not just one. I would contact your gp and tell him which tests need to be run. Anticardiolipin , lupus anticoagulant and beta 2 glycoprotein.

I've had multiple losses and I'm only positive for lupus anticoagulant so I know it's important to test for them all

Good luck

Kelly

[Rigamorph in reply to Yllek]

Thanks Yllek, that's what I thought. Sorry to hear about your losses too Don't want to seem awkward or pushy but its my body, and my (potential) family at the end of the day. It was a repro specialist that ordered the test, but I got the impression its mainly an IVF specialist. Recurrent miscarriage with 'normal' fertility (we conceived quickly both times) is probably quite a different issue.

[Yllek in reply to Rigamorph]

I've been the most awkward and pushy patient on the planet - but we have to be !! Keep on at the drs, get the tests and answers you need and deserve x

[Lure2]

I suggest you call the Doctor who got the answer from the lab?

What is important is if you have relatives with the symptoms from HS/APS as it can run in families and also if you have other symptoms than migraine.

Ask your GP if he thinks it is ok if you try Baby-Aspirin as that is ok to use when taking the three bloodtests for HS/APS. That could also help with the migraine and some other neurological symptoms.

Please let us hear how it goes for you!

Best wishes from Kerstin in Stockholm

[Rigamorph in reply to Lure2]

Thanks for your reply, my mother has always had migraines as well. My father died of a stroke, but he was also an alcoholic. My grandmother has had two strokes and renal infarction, but she also has atrial fibrillation. So the clots could just be coincidence. No history of infertility in the family.

Going to contact some local APS specialists and see if they think its worth doing the other tests.

Thanks for your support!

[Lure2 in reply to Rigamorph]

I think you have a family-history there!

I can tell you that some of us are sero-negative for some time and later perhaps positive. Even so we have the illness and it can be diagnosed from a family-history or by symptoms. A Specialist of HS/APS knows these rules.

I keep my fingers crossed for you that you will find an Specialist of autoimmun illnesses. There are very few of them and I am not sure where you live. In England it should be possible to find one but in the US is is more difficult.

We have learnt here from own experience that knowledge is power! The most important thing is to find a Doctor who really knows our illness. He knows what to do.

Especially if you two want children it is important to see that Specialist.

Kerstin

[Wittycjt]

I agree with Kerstin. I think you have a familial history. Sero- negative may be you! Good luck.

[Rigamorph]

Thanks everyone, I have contacted a doctor listed as both repro/gynae and APS specialist, less than 90 mins drive from me. Covering all bases in case it could be some other cause I don't know about! Will let you all know how I get on, could be useful for other people in my situation.

[Wittycjt]

Good for you, way to be proactive, I look forward to your follow up post