Anyone know of a specialist pregnancy unit that deals with Hughes?

hi, after 3 miscarriages I have been diagnosed with Hughes and Factor v Leiden, We are planning to get pregnant as soon as my thyroid is sorted (another unrelated problem lol) but I'm worried about my care? I had to pay privately to go to st mary's in London for my diagnosis as my local hospital tested me negative, i also had lots of tests about 7 years ago (before any m/c's) and nothing was found. I'm worried my local hospital will not know the signs of problems with the pregnancy, can anyone recommend a hospital i should be referred to, does anyone know anything about the Liverpool women's hospital? Thanks

Kim

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  • Hey Kim,

    I had 4 m/c and was diagnosed with Hughes and subsequently tested negative ever since. The only intervention that resulted in my daughter's birth was a hematologist who had a brain, and put me on Heparin and aspirin throughout the entire pregnancy.

    I'm not in England, but apparently, London Bridge Hospital is the answer, if you have funds allowing: Professor Khamashta is the specialist in APS (and sero negative APS) so he may be the person to ask to see. Him or Professor Hughes will definitely give you a diagnosis and advice. The frustrating thing about this disorder is that the antibodies are often sneaky and don't show up every time....hope this helps..

    Sive

  • Hello there, and firstly Professor Hughes thinks that it is often the case that thyroid issues go with Hughes and also sjogrens. I can see that other members will need to give you some advice re your local area - which if I am right must be Liverpool. Hopefully very soon you will get some more localised information. At times St Thomas' will guide a local hospital as to your care, and in this case it would appear that perhaps St Mary's will do this, if that is where you had your diagnosis, however St Thomas' have the expertise and are good at handing on advice further down the chain, wishing you the best of luck with your planned events... and more people will help I am sure. Mary F x

  • Hi, really sorry to hear your news but echoes what many of us have been through on here.

    The best place to go is St Thomas Hospital in London. Prof Khamashta as far as I know looks after people with pregnancy and Hughes. Others on here may suggest others but St T's is the centre of excellence for Hughes.

    You can see Prof privately at the London Bridge Hospital if you did not want to wait for a referral. Thyroid problems are not unrelated to Hughes and many of us also have thyroid antibodies too including me!

    You may like to go to the main HSF website where there is lots of information you may find helpful.

    HSF recently had a patients day were there were all the specialist who came to talk to the patients about the recent advances in the condition including pregnancy.

    Good Luck with your plans, I know it all seems overwhelming but you will soon be in safe hands. Getting a diagnosis is half the battle so someone at St Mary's was on the ball. You will find lots of support on here too :-)

  • If you go on Liverpool Womens Hostpital website than gynae than miscarriages it gives information on whats available. I know a couple of woman who have aps and have had babies at the womens hospital.

    Hope this is useful

    sharon xx

  • Just re-read and spelling is really bad sorry!!!!

    sharon

  • Sharon is right about the Liverpool Womens hospital - it would be much more convenient for you as your next pregnancy will be classed as high risk and, from my experience, that means having scans every two weeks so the journey would likely be too stressful and exhausting for you.

    The best places in London which focuses on miscarriage are run by Prof Lesley Regan at St Mary's Recurrent Miscarriage Clinic in Paddington, London and St Thomas' APS Pregnancy Clinic. If you do decide to go to London ask to see Prof Beverley Hunt and although Prof Khamashta is wonderful and a brilliant APS doctor, he is not a haematologist which Beverley is - this means she would be more equipped to deal with your Factor V Leiden too.

    Do not go near London Bridge Hospital unless you have BUPA health insurance which covers high risk pregnancy (never come across it in my life but you never know!) or you are extremely well off - this is a private hospital only and they do not really deal with pregnancy all the way through. If you are willing and/or able to make the constant journeys to London, you would be better looked after at Tommies but I would still with Liverpool.

    BTW - it's likely your thyroid is connected as autoimmune conditions tend to cluster together and thyroid and APS is quite common.

    Hope this helps!

    Kate

  • Thank you everyone for your responses, it's so nice to hear from people who know what they'r talking about, I have been to Prof Lesley Regan's clinic and saw Mr Raj Rai who diagnosed me, we had to pay for this privatly as my local hospital told me that there was nothing wrong with me, but i knew there was something wrong, this is the reason i'm really concerned that when i am pregnant they won't pick up on any warning signs and i would prefer to travel to Liverpool every two weeks which is about an hours drive away then take any risks. Thank you for pointing out that my thryroid problem is related, i didnt realise this, I only got diagnosed over a week ago, so this is all new to me! :)

    I've read that people with Hughes are sometimes told not to have babies because of the risks? has anyone ever been told this? And has anyone ever come across people with Hughes and Factor V before? Mr Rai said it was quite rare? and does this mean im at higher risk??? Thanks for your help everyone!!! Sorry about the 50 questions!!

    KiM XXX

  • hey!

    I have a 5 month old after IVF and was diagnosed with hughes 2 years ago.

    I was seen by Prof Khamastra (please excuse poor spelling) at St Thomas'

    I am not local to London but was seen a couple of times to go through meds, if i had any problems i would ring them and always get excellent advise and swift help as my local hospital had no dealings with APS.

    All my scans (I had weekly ones) were done at my local hospital with all my doctors corresponding themselves.

    I would day if you can be referred to London then go for it, Without them I wouldnt have my son I am sure of it.

    Back at St Thomas friday to see Dr sanna to discuss meds from now on, such a fantastic team!

    I hope that this has helped a little!

  • Ive got factor V leiden and APS and recently had baby. Factor v leiden is relatively common. Lots of people have the gene without knowing.xx

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