Diagnosis

Hi there,

I have just had my third miscarriage confirmed. My first was at 9 weeks the others just over 5 weeks. I'm feeling very low and at a loss to understand why. The clinic mentioned Hughes syndrome as a possibility after this miscarriage but we're reluctant to test. I do also suffer from migraines. I want to push for testing and wondered if there were any genetic links? I know my mum also suffered from recurrent miscarriages, she doesn't like to talk about it but I know she had injections daily to keep me. if anyone knows of genetic links this may be enough to convince my Dr, I'm not sure I can go through another loss.

Willow

13 Replies

oldestnewest
  • Hi Willow and welcome.

    Where are you from?

    Why won't your clinic test from Hughes Syndrome/APS?

    You really do need to discuss this with an APS consiultant.

    Best wishes.

    Dave

  • Hi there and welcome, and first of all sorry to hear of your losses, you are not alone with this, many women on this forum and indeed their partners have been through these losses. The clinic is definitely going down the right path, especially as you clearly have migraines also and the history with your family. Where are you located as our charity website here, has lists of specialists in the UK, your GP could refer you to one, however some of do go privately to London Bridge. I suggest you email your doctor and any consultants you are under, (email to their secretary's email addresses marked for them, include the Hughes Syndrome Foundation website, drawing their attention to the list of specialists and the blood tests and also remind them of your family history. The clinic needs top urgently test you. You must take your most trusted professional friend or relative along to your appointments at this difficult time to be your patient advocate, after you have sent the email. Many women on here go on to have successful pregnancies with the right medical support.

    hughes-syndrome.org/self-he...

    hughes-syndrome.org/about-h...

    hughes-syndrome.org/

    Also email them this film:

    MaryF

  • Hi Willow

    I totally agree with my colleague Mary's advice.

    Dave

  • Willow I'm very sorry for your losses.

    It's understandable that you feel low as you are grieving for your lost babies and the dreams you had for them. Do you have someone you can talk with about how you are feeling? Perhaps write your feelings in a diary as that can help too.

    Having lost 3 babies and having a family history of miscarriage you are more likely to be offered testing and it would be good idea to have that done if you plan to try again. Its a simple blood test which is repeated again a few weeks later. They will test for APLS but its also a good idea to get tested for FVL as well and MTHFR as well as they are also causes for miscarriage. They can test for all at the same time.

    When you know what you are dealing with you can work with your doctors to create a treatment plan so that you are in the best position for a successful pregnancy should you try again.

    My heart goes out to you and I wish you all the best on your difficult journey.

  • Nothing I can ad to the wonderful advice from above but to say how sorry I am and hope that you get your tests done from a good APS specialist soon so you can know where you are. This condition is thought to be genetic however we are not there with the testing yet. Many people find that it runs in their families especially with other similar autoimmune conditions.

    Please also make sure they are testing your thyroid which also can run along side Hughes with Sjogrens but Thyroid can also cause pregnancy issues. Another reason to go to a good specialist who will get all of this. Good Luck and please keep us updated. X

  • Im so sorry for your loss,and understand how youre feeling. Im sure after 3 miscarriages you automatically should be tested and investigations in to this anyway. I would push to see a consultant via referral from your gp before embarking on another pregnancy. I was unable to commit to another pregnancy until we tried something different - i couldnt put myself through it again. I would ask about testing for hughes - the test costs 35 pounds which is nothing. i would also ask about 75mg aspirin and high dose folic acid and get that in to your system for a good couple of months before trying again,and get a clear plan with a consultant for another try. I dont really know what it is that gives us the drive to keep trying but we do,and you will find the strength to do it again - and im sure with a bit of help you will have a bundle of joy in your arms next time. Especially with family history you should certainly be under guidance from a consultant - best of luck and I hope you start to heal soon as best you can xx

  • Thank you so much everyone for your replies! I feel much more confident about speaking to my GP now and am certainly armed with information! I'm in Scotland and was told they only tested for more than 3 miscarriages, hopefully with this info I can convince them to test now. Thank you so much everyone you have been unbelievably helpful, I have an appointment with my GP this week so will keep you posted

    Willow

  • Do come back to us if you need more help! Best of luck with your new information and quest for help! Best wishes to you. MaryF

  • good luck for gp appointment,so sorry for your losses, 1 of hardest pains to bear with family history and sytpoms and your own loss more than enough for testing and treatment. sending you gentle cyber hug do post how you get on if feel able.your in right place for support.

  • Hi Willow3, I'm so sorry for y our losses. It's very sad I know. You're grieving and I pray for comfort for you and your husband. I don't know about the genetic link, but if you go to www.Hughes syndrome. org (I think) you will find a lot of info there. My son has 'suspected Hughes', You can also go to the London Lupus Clinic as it's run by Mr. Hughes himself who discovered it. You should get a lot of help there. Maybe you could even get your GP to refer you there since you've had so many miscarriages. Hope you get answers soon and feel better. Lyn

  • I have Hughes and was diagnosed at 37 weeks pregnant. The entire pregnancy I had migraines and lots of flashing lights in my eyes. I would push for the testing.

  • I'm so very sorry for your loss. I remember that pain very well. I had a dozen miscarriages over 8 years before I was diagnosed with APS (Hughes in your neck of the woods). That was almost 20 years ago and not much was known. A doctor told me to take a daily baby aspirin and to do Pregnyl shots once a week for the first trimester (Pregnyl is basically the pregnancy hormone, HcG, and is sometimes given to women when there are miscarriages for unknown reasons even though it is officially approved as fertility drug and not for pregnant women). In any case, I now have 5 (!) children all these years later. One is nursing as I type. I hope you get answers and better things around the corner. Sending many hugs.

    ~Alicia in Minnesota

  • Hello everyone,

    Thanks again for all the wonderful advice! I have now had a few appointments with my Dr and have finally been tested, I'll get the first results in 2 weeks, I'm hopeful this will be the start of a solution, whatever the outcome. Thank you again for giving me the courage to ask the right questions

    Willow

You may also like...