Just learned of Hughes Syndrome. Have... - Hughes Syndrome A...
Just learned of Hughes Syndrome. Have had 2 miscarrieages, 1st at 18 wks when my waters broke & 2nd at 8 wks. could i b a sufferer?
Hi there and welcome, Hughes Syndrome is not always the cause of multiple miscarriage, and it is strong contender. I am sorry for your losses, and may I suggest you look into this with your GP. Have you had any other symptoms, ie migraines etc or any of the symptoms listed on the HSF website - hughes-syndrome.org/symptom...?
If you and your GP suspect this, you can have blood tests, to confirm this, although some people such as myself remain stubbornly seronegative despite having had clinical incidents. Warm wishes. Mary F x
Hi & thanks for your reply. Im luck enough not to have migrane & apart from the miscarriages, the only other symptoms that i have are dry eyes & bad circulation (Cold hands and feet). Im in the process of trying to buck the system whereby investigations only carried out after three consecutive miscarriages and chasing-up a referral appointment with the gaeny consultant.
Hi firstly sorry to hear you news,
I found out I had Hughes due to having a late miscarriage at 16 weeks and previous at 7 and 9 weeks.
As you know its very traumatuc and my case is complicated further with male infertility (on the IVF route).
I was under the care of a hosptial who signed me off after we had the results of the post mortem, which said the baby was perfectly formed by lost due to a infection. At the same time we were waiting for the post mortem I got my GP to refer me to a miscarriage specialist in Coventry. I am lucky as they were very sympathetic, to loose a baby at 16 weeks is very unusual as your know with your loss at 18wks.
The Dr I was referred to tested me for auto immune issues, annoyingly some IVF clinics do test for this but it had never been suggested and I didnt investigate this route as believed we just had male factor infertility issues (ok I am rambling... ). One of the auto immunes they test for is Hughes amoung other things (natural killer cells is also recently believed responsible for many miscarriages). So my suggestion is to try to get referred for fertility auto immune tests, my Dr was very good at doing this due to the nature of our case and its worth pushing if you can to get to see someone who specialises in this area.
You can get these tests done privately but they are expensive, as the list of tests is extensive.
Due to the latest of your miscarriage they should refer you, you just might need to push it.
Good luck
Hi. Thank you so much for your reply. Im am so happy to have stumbled across this site with people who have experienced similar traumatic experiences to my own. At this moment in time, I only suspect that i may have hughes syndrome, it hasn't even been suggested by any of the medical team who have seen me through both pregnancies.
In July 2012, 18wks into my first pregnancy, my waters broke, and since that time we have been asking the question, Why? All test results showed no abnomalities with the baby or birthing products. During the follow-up appointment with the consultant, (only prompted by a second miscarriage and lots of pushing) all he could suggest was that i was one of the unlucky ladies who this just happens to. The hospital's policy is to only investigate the reason for miscarriage after three consecutive occurances, and as you, and many others on this site will appreciate, I want answers now, i want my next pregnancy to have a much much happier ending.
I am learning how to be assertive with appathetic doctors and consultants and will act on your advice and push for answers!
I wish you & your husband/partner all the best wishes in the world your IVF route to pregnacy.
Happy I can help, if I can do one thing from what happened to us that is to help others as well as us.
Have you read this book its an interesting read... by a Dr his view is no miscarriage is unlukcy there is a cause and in your case if the baby was ok and nothing else found something must have triggered it. Micarriages dont just happen there is a cause but finding it can be hard.
amazon.com/Your-Body-Baby-F...
PS There is a lot of information about fertility buy also miscarriage too.
I am keeping my glass ever half full lets see what 2013 brings! x
A woman after my own heart! Ive got a good feeling that 2013 will bring us all we wish for. Cxxx
Hi, at 18 weeks for your waters to break you should have been automatically tested for anything suspicious causing this to happen. Its only 3 early miscarriages that have to be endured before taking seriously unfortunately for many. Maybe you could ask your GP for a consultant referral at your hospital and discuss trying again and finding answers before another attempt - I did this and I found it very helpful in deciding to try again knowing it would be better aided rather than just down to luck due to the heartbreak involved when its gone wrong in the past x
And please ask for high dose (5mg) folic acid if you do decide to try x
Hiya! Thank you so much for your advice. I am quickly beginning to realize that i should have received much more guidance from the very appathetic medics who i have had the bad luck to have met during my two pregnancies.
Can i ask please, why do you recommend the 5mg folic acid?
If the possible solution to my problem was to just take a higher dose of folic acid, why wasnt i told by the health professionals i wonder? Surely this higher dose wont break the bank? At least with your help, i can now speak to my GP and consultant armed with a little bit of knowledge. I think its disgusting that WE have to stear the professionals towards a possible better outcome to our pregrancies. Or am i asking too much from the caring profession?
Cxxx
Again I just want to reiterate emmaj - you have had a late loss and you are entitled to tests. It is only 3 early losses. Please press to get tested. This story also sounds very similar to a lady I know and she actually had Lupus but it took one early loss (8 weeks) one 19 week loss due to PROM (premature rupture of membranes) and one baby born at 27 weeks (who is doing well) before tests were done.
Please please please press for tests.
Anybody with risks of placenta problems should have high dose folic acid - its the building blocks of every organ, and the placenta is the fastest growing,most demanding organ your body has to make, and it does no harm, people who go through ivf have it given automatically in my experience, also ask for cervical length scans so they can see if your cervix is shortening ready for labour early-in which case they may be able to offer you a stitch. I bled with every pregnancy and on the last one i saw a consultant first to discuss my options to try again, and all this was done-it was the only pregnancy I didnt bleed with and i swear it was down to the folic acid giving me a bit of a head start, PROM happened to me and it is awful and i was unwilling to try again without a clear plan. Unfortunately it is down to luck who you see and what they believe,and how blase they are about the whole thing - and how clued up they are. I was under the best hospital for 4 pregnancies and no one recommended this - until i went to a smaller one and it was a lady who trusted my instincts. when at 30 wks i told her my baby would die if left she listened to me and had him out and he would have done we found out afterwards. You should also have scans each week to ensure the blood flow through to the placenta is ok,and to check growth. Take a written plan of what you expect and dont go with a consultant because you think you have to,choose who you feel confident with and have a look at the reviews on here. if you could let us know where you are based maybe we could help more. Im sorry for the long post but i feel very strongly about how our little ones are lost to chance x
I had no symptoms of APS. I just had the miscarriages. The Gyn did a blood test which I tested positive. Mary is right you can tested neg & still have it. I test neg now & have all the symptoms. After I tested positive I became pregnant & was on injections of heparin for 9 mos. I delivered a healthy baby girl. Designer16
