Waiting on my results but what a pala... - Hughes Syndrome A...

Hughes Syndrome APS Forum

10,351 members10,539 posts

Waiting on my results but what a palava trying to get tested.

Leelaked77 profile image
6 Replies

I read the article in the Sunday Mail a few weeks ago and alarm bells started ringing for me. I have 2 confirmed miscarriages & believe prior to this have had at least one unconfirmed, which I had put down to an unusually painful period. I also spend several days in hospital last year being tested for a suspect DVT & various other issues. I spoke initially to my mum who is a nurse and she agreed that my case was strong but suggested talking to my GP. Unfortunately, my GP was not very clued up on Hughes and asked if I would contact the local Early Pregnancy Unit for some advice before testing. To say I was disappointed with them is a very big understatement, they fobbed me off saying I was too young to have this ...... since when is age a big factor? I had done my research and this affects all ages. Also I am 34 so biologically, I am not very young at all. Thankfully, my GP was on my side and had looked up the tests involved. I've had bloods taken and am now waiting for the results. If I am not positive, it means then I can rule it out, which is peace of mind as well. One of my friends had late losses and was testing for this not too long ago but Drs found out hers was another genetic type issue. I would hate to think women are out there suffering loss after loss without being educated about the possibilities.

Written by
Leelaked77 profile image
Leelaked77
To view profiles and participate in discussions please or .
Read more about...
6 Replies
MaryF profile image
MaryFAdministrator

Hi there and welcome, I am glad you had a chance to see the article, even though it was and is very sad. The theme of fobbing off is common, and we are currently trying to change such dinosaur attitudes. Hoping you come across the correct attitudes very soon. Mary F x

Squeezer profile image
Squeezer

Hello there,

Good for you in having the strength to pursue this! Make sure that your blood tests have been done within the timescale they need to be because a delay can apparently give unreliable results.

Also, if the tests are negative and you don't find another answer then you may be one of the 20% or so who test negative but still have Hughes.

There are lots of people on this site who are far more knowlegeable about it all than me and have helped me with answers recently so I'm sure others will offer more support and advice to you :-)

The very best of luck to you!

H x.

Kimmichelle86 profile image
Kimmichelle86

Hi i got discharged from hospital after 3 m/c's and was told it was down to bad luck, In the end i'v paid privately to go to st marys in london, and my results were positive! and i have factor v leiden (im 26), dont let them fob you off, unfortunately i think it is a case of battling with the health system!

keep your chin up xx

Rhian21 profile image
Rhian21

After 2 MC's tests began ! I did not know anything about APS at this stage ! MC number 4 and 5 were horrific as the Dr's didn't have a clue what was causing them or cared very much for that matter, during this time apparently an APS test was carried out and came back normal but the Dr's did not tell me about the illness. I found out through researching on the internet and asked to be referred to St Mary's hospital (early MC centre) just after my final pregnancy (number 6) which was an emergency ectopic hemorrage. These MC's happened over a time span of 10 years. St Mary's tested me positive APS in approx 20 min !!! I have had positive and negative tests since. Had I listened to my local NHS advice..I'd still be trying and loosing babies 4 years on from that ectopic. I trusted my own gut feelings and didn't stop questioning until I got definite answers ! It was amazing to be diagnosed with APS as it answered so many questions about my well being since childhood..for example kids used to make fun of my funny rash all over my legs at school, I was having terrible migraines, and constantly giddy ! Its sad to think that a simple aspirin could have saved me the loss of 6 potential babies. I consider myself to be very lucky as pregnancy number 2 was full term and according to St Mary's miraculous considering I didn't receive any medication at that time !

It saddens me to see other women go through several MC's, and prefer to take their Dr's advice..blood test negative=no APS. I am living proof that this is not the case ! Trust your instinct and I wish you all the luck in the world x

Leelaked77 profile image
Leelaked77

Thanks so much guys, glad for the extra support x

jessielou profile image
jessielou

Hi hon

I'm glad you found the article and have pushed and have had tests!! I'm afraid a lot of us have experienced similar difficulties along the way, but just have to persevere.

We are trying to spread awareness and educate our gp's as we go along, but is hard to get them to listen. My gp's practice are getting there slowly, the nurses are great!! Thank goodness!!

It's a tough journey to diagnosis sometimes, but we will help as much as we can with info and support.

Take care gentle hugs love Sheena xxxxxx :-) :-) :-)

You may also like...

Back in hospital trying to get proper testing...

little as it felt like I was stroking out. They refuse to test me forAPS. I will try to get my theme

New to APS - Trying to Get Pregnant

thinners to start, because I'm young and because I'd only ever had one clot and I had a number of...

Waiting on Lupus anticoagulant results

they can cause DVT's but I have also had 8 early miscarriages in the past and last year I had...

How long did you wait for results?

question wondering how long you had to wait for results once you had seen a rheumatologist? I was...

Getting tested for thyroid

been many posts on here related to thyroid issues and testing. I just emailed my doctor about some...