Hi all I’m after some advice please. Here’s my story..
I am now 45 years old and basically I had 3 normal pregnancies/normal births between 1995-2001. In 2013 we decided to try for another baby from 2013-2015 I had 3 miscarriages. I was referred in July 2016 to a Obstetrician & Gynaecologist and then a Haematologist - after numerous tests I was told I had IgG anticardiolipin antibodies at about 8pglu and IgM anticardiolipin antibodies in the 30s and that I also was positive for a lupus anticoagulant - firstly can anybody clarify what this actually means??
I was told that I basically had Antiphospholipid Syndrome and told this would be the reason for my miscarriages, I was told to take low dose Aspirin and in the future if I did want to continue trying for a baby I would have to have start on heparin as soon as confirmation of pregnancy, but then there was no guarantee that the pregnancy would end successfully. We decided this wasn’t for us and decided to leave it and call it a day and that perhaps we should just be grateful for what we had.
During the last 18 months I have developed several different ailments/symptoms that resemble those of APS and feel my health is not as good as it should be and I am convinced it’s down to this. I’ve been back to my GP a few times with regard to certain issues and they fob me off and tell me that Antiphospholipid Syndrome is only prevalent during pregnancy. After my GP telling me I was wasting NHS time!! she finally agreed to refer me to a clinical Haematologist in May this year - I had 1 blood test and was told that it was negative for lupus anticoagulant and that the anticardiolipin antibodies are persistently positive at 47GPLU and 17MPLU and they would suggest an obstetric Antiphospholipid Syndrome and that basically I would only experience problems if pregnant - however I hadn’t been pregnant for almost 12 months after initially being tested and diagonised!! So that surely contradicts what they are saying?
Can you have Antiphospholipid Syndrome that’s only a problem when your pregnant and not generally - and can it just go away?
I would really appreciate anybody’s views or knowledge on this as I am at my wits end with it.
Thank you xx
Hi, it would help both your and your GP if you had a referral to one of our recommended consultants, which are over on the right hand side of the forum under pinned posts. You need a consultant who fully understands the condition, not half of it. We usually ask our members to make sure their Thyroid, B12, folate, ferritin and vitamin D are tested, and be aware that thyroid testing is not great in the UK, a lot of us order our own private tests. The Trio of disease is often Hughes Syndrome/APS, Sjogrens and a Thyroid problem. I enclose this useful paper and the charity website:
the-rheumatologist.org/arti...
ghic.world/
I had dvt's during my first pregnancy, I was then not told about Hughes Syndrome/APS and it took a lot years down the line for me to work it all out plus my other conditions which have now been verified due to passing tests, alongside the obvious symptoms.
MaryF
Hi Mary, thank you so much for your reply - my symptoms seem quite minor given many people talk about collapsing lungs, DVT’s and strokes!
I suffer fatigue, some days I can feel quite normal and other days I’m SO tired! I suffer with a lot of headaches and more migraines than ever before and suffer with brain fog-my memory is not as sharp as it was and probably should be! My immune system is absolutely pants if I catch a cold it lasts twice as long as my families do and then normally goes onto my chest and I end up (eventually) being given a course of antibiotics which is never normally long enough and then I have to go back for another course, or if not within 2 weeks I seem to get reinfected!! I’ve stopped having the flu jab as coincidence or not I can guarantee I have cold/flu within 2 weeks of having it.
I get pins and needles in my hand and into arm.
I get blurry vision - the vision in my left eye has deteriorated in the last year (not massively but it has been noted as a sudden change) and recently I have developed ringing in the left side/ear, a hearing test shows deterioration in my hearing in the left ear, again quite a sudden change. Do these sound like symptoms other people may have experienced? What I don’t want is to get to the stage where something major happens in order to finally get recognised as so many others have done.
I hope I’m not going on too much. Regards Leisa X