Hughes/Antiphospholipid Syndrome and others

[TinkerbellesMum]

After the miscarriage thread it would seem there are a few of us, which I would expect with the chance of having this disease, that have Hughes or something similar. I thought a place where we can share our experiences, swap injecting tips, ask questions and generally be a support to each other whether it is in pregnancy or just living with it.

I'll start by introducing myself and my disease.

I first got pregnant in Feb 05, I miscarried at 8 weeks with what was thought to be triplets. I was advised that I wouldn't get a period till my body was ready to start again and I could try again when ever we were ready. We got pregnant on my first cycle.

At 20 weeks I went into labour. A&E at a different hospital said it was a UTI and sent me home (I'm well aware of how dangerous a UTI is, that if they had followed procedure and got a gynaecologist or obstetrician to see me I wouldn't have been in the situation I was in next day). The next day I went to the theatre (long story!) there I collapsed and was taken to the hospital where I gave birth shortly after. My daughter (Lily-Hope) was born alive and died when she was three hours old. They hadn't worked on her because she was too young, they gave us the time as a family to hold her and be with her until she died.

I was approached the next day about a post mortem. I told them she would not have survived birth and lived for three hours at 20 weeks if there was something wrong with her. I said that I felt I was the problem and if there was something to know they would get their answers from effectively doing Lily-Hope's post-mortem on me! They said that was their thoughts and that they had to ask as it was my choice.

Over the next three months I had several lots of blood taken, 9-11 vials a time, some I joked looked like Tabasco bottles! When I was 5 weeks pregnant with Tink I had the final results. There were pages and pages of results, tropical diseases to STD's! Everything was negative until one of the very last things they tested for - Antiphospholipid Syndrome, I use Hughes Syndrome because it refers to Prof Hughes who has the best research on it, there is a drive to get it recognised across the board as it's proper name and it's easier to say.

I was started straight away on Aspirin, but had to fight for Heparin as they said my levels were too low for the Hughes to be a problem! It took me three "second" opinions to get someone to agree with me that it obviously was a problem or I wouldn't have lost Lily-Hope and we didn't want to not try everything and risk it happening again.

Tink came at 31 weeks, not because of the Hughes, but because of having lost two pregnancies early before. She has done really well since and I'm very proud of her.

I have since discovered I have Raynard's (which I've been trying to get them to admit for years) and TIA's. I'm also getting pins and needles in my arms and legs which is currently being tested. Of the random symptoms a lot of people get I get the fuzzy headache when not on Aspirin, I have a sensitivity to shop lights and car indicators and I have a rash over my cheeks like I've eaten something I'm allergic to. I also believe my weird form of dyslexia is connected.

I thought I'd bump this as I posted it late so people may not have seen it if they were looking for new posts.

Oh good idea for a thread.

Im Julie, 26 yrs old and I was diagnosed with Factor V Leiden in 2006.

Heres my history

sept 2000, late miscarriage at 22 weeks Went through it alone, was only 18...

April 2002, gave birth to DS1 9 weeks early, due to pre-eclampsia. Day after he was born I had a stroke and was in ICU in a coma for 10 days then I finally got to meet my tiny boy

After my boy I had 5 early mc's mar 05 @ 5 weeks,aug 05 @ 6 weeks, Dec 05 @5 weeks, Jan 06 @ 6 weeks, all theses ones I managed to pass naturally. Mar 31st 2006 I had to have a D&C because passing naturally just wasnt happening, shortly after D&C I had loads of blood taken...

May 2006 (roughly!) I got pregnant with DS2, I rung epau before I even told DP, I still remember my first HCG results where 221 They told me whilst I was there that I had FVL and would need aspirin and heparin (was already on aspirin)

5 weeks along with DS2 I started to bleed. Threw my injections to the back of a cupboard, refused to go the hospital I had given up I couldnt do it anymore... Fast forward a week later I woke up at 7am feeling very sick and dizzy, somehow managed to get to the bathroom to throw up and next thing I know DP was picking me up off the bathroom floor. I can remember vividly how bad my boobs where hurting and i kept saying to DP its cruel! He took me to A&E and we had a scan they found a heartbeat !!

I bled on and off till 20 weeks then. Had a doppler scan at 24 weeks which told me i was 85% risk of getting PRE E again. I didnt, However it wasnt without problems! My waters started leaking at 30 weeks so i had weekly growth scans from then until he was born by ELCS at 38 weeks

Jan 08 - shock BFP, hadnt felt right DP ordered me to put my mind at ease and take a test, didnt for one min thing it would be positive. It was, things went wrong from the off. I had scans weekly, 4 weeks they said it was a section scar ecptopic, around 6 weeks they told me Id lost a twin, around 7 weeks the other had gone too, then at 10 weeks they said it was most likely a molar pregnancy. I was ironically taken in for my D&C on 31st march 2008. Came home same day, two days later I took ill, DP found me curled up on the couch after rushing home because I wasnt answering him on skype or email or the phone he took me to hospital and Id contracted a womb infection

it gets suckier. Its been 4 weeks tomorrow since my D&C I am still bleeding, its still not over, they took me in for another D&C a week after my first. Now they have found a mass/tumour on my uterus wall I am waiting to go in for an MRI but they dont have any idea what it is. Preg wasnt molar, HCG has fallen back down to 6 from 222,000 it was at 7 weeks. I would be coming up to 19 weeks on fri and its still hanging over me. I cannot grieve for this little one (or two?) till its all over.

Despite all this I am pretty sure we want another baby in a few years providing my bots dont get messed up by this tumour thing

bots = bits

Sounds like you've really been through it. That's why I started this thread because women with these conditions on these boards usually have. I'm also hoping we could be spotted by someone, plant a seed in their head and save babies.

I hope you are feeling, at least physically, better soon. I always think the worst thing is having to go through the after symptoms, it holds you back from moving on from that day.

Did they tell you that you would bleed because of being on the Heparin/Aspirin? I bled everytime we had sex (which quickly became not often because of that) and when I had to have a TV scan - I had quite a few.

Have you had prepregnancy councelling? It might be worth them leaving you with a stash of needles so you can start them on day 14 or 28. Some women are so bad that they can't waste time waiting for an appointment before starting the injections.

I'm waiting for my appointment as they said I can't get pregnant again till she's 2 and that's coming up! I'm worried what they're going to want from me as I spent a 2 or 3 months in last time and that was without expecting her to be premature! At least they know I don't have IC so I won't need to be tested for that this time.

Can I just say you all have my sympathies for the very tough time you've had. I don't have Hughes, but I'm posting this because since one of my children was stillborn (36 weeks) I've been in contact with a number of women who have, and I've been shocked at the lack of awareness. A friend of mine suffered a number of mc and stillbirths and was never tested for Hughes - in fact when she raised it with her GP he asked if she had any idea how rare it is and brushed her off. She paid privately for a blood test and it was positive. She has since had several healthy children due to treatment with Heparin during pregnancy.

I wish you all the best with your treatment. I just think its sad that some women may be suffering unexplained mc and stillbirths/health problems due to a lack of awareness by GPs.

If it's not too late tell her to tell her GP it's 1 in 500 (0.02%) without relatives or 1 in 10 (10%) with relatives - but you never know if you have relatives - and we cause 1 in 10 pregnancy losses (I say that over m/c because we count for all losses up to term).

MS is 0.0015%
ME is 0.2%

Hi there

I am still waiting for my MRI but I did see my consultant this week and she is gonna run a whole other series of recurrent mc testing Just to make sure nothing was missed the first time.