Desperate need for a good consultant! - Hughes Syndrome -...

Hughes Syndrome - APS Support

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Desperate need for a good consultant!


Firstly hi to all members. Hope your all keeping well.

As for me I was diagnosed in 2005 with Lupus Anticoagulant, never really understood the condition and because i felt reasonably well at the time of diagnosis thought it was all a fuss about nothing.

My how things have changed. I now feel mostly unwell experiencing calf pain and swelling, pounding in my right ear, chest pain and breathlessness, high BP, and I'm anaemic. I feel tired most of the time and frequently pick up infection.

I've had a still birth and miscarriage in the last two years and I'm now totally fed up. My gp surgery is rubbish and offer me no help at all. The consultant I saw during pregnancy just told me to loose weight as if it's a magic cure and would just like to see a consultant that specialises in this field so I can get some sound advice and further diagnosis/treatment if required.

I don't mind where the consultant is located or even if I pay privately. I'm just desperate for good medical advice on this. Any advice is welcomed so please please please post away.

Many thanks

14 Replies

Hi Dee,

I also have Lupus Anticoagulant. I've had two miscarriages and a still birth. May I ask were you on aspirin and heparin? I would recommend Raj Rai at St.Marys recurrent miscarriage unit in London. He was excellent - I did pay to go privately but wasn't too expensive in the scheme of things. I'm sure you could also get a referral from your GP.

I also see a haemotologist during pregnancy for regular blood tests. Are you on medication long term?

Best wishes



Hi sorry to hear of your troubles, firstly here is the link for our charity website: Lots of information on there including a list of specialists in your area: I suggest you email the charity link to your GP via their secretary's email address, the symptoms are fully explained within the website and here is the list of specialists.

It is clear that you need a referral, if you come up against a complete lack of help some people do self refer to London Bridge:

Lots of people on here have been through similar and feel better once they get their medical care on track. MaryF

Hello Dee and welcome

My colleague, Mary, has already given you some good advice and some links.

Where are you from?

Best wishes.


Hi, I have also Lupus Anticoagulant which is one of the 3 or 4 antibodies there are pointing to APS

I totally agree with the others. Two things: Get a diagnose. Get an APS-doctor. There are few of them.

Read "Sticky Blood Explained" by Kay Thackray. (Perhaps you can buy it via the Foundation here on this site)

Stick to this site which is extremely good.

Good luck from Kerstin in Stockholm

Aww thanks guys for all your advice. I will certainly be checking out those links Mary F.

Hi Catherine I was on heprin and aspirin during pregnancy. When I realised I was pregnant I stopped my warfarin which I read is dangerous in pregnancy. But at that time I hadn't seen the haematology. Midwives yet so hadn't started the heprin aspirin regime. I was almost 6 months pregnant when they realised the baby was too small. And that's really when the close monitoring started but by that time the placenta had already formed clots so there was nothing anyone could do.

Researching more I'm finding that as long as you receive good care many women do go on to have successful pregnancies. But for me I'm battleling with my weight so won't try again until I've lost as much as I can.

Hi Dave I live in Manchester.

Hello Kerstin I really don't know much about specific antibodies. I was told about lupus anticoagulant and raised D-dimer at the time but I think if I can see an aps doctor I can ask further quetions now I know a little more about the condition. Again Many Thanks for all the advice its appreciated.

Mary has given you good advice. You do need a specialist in this condition. I travel from East Yorkshire to London, to see Prof Graham Hughes. Hope you have some success in finding the right care. Best wishes Bernadette.

Thanks forthe advice Bernie very much appreciated. I have started looking for a consultant, I was told Dr Hughes is booked up now for the foreseeable. He must be good. Best wishes Diane

He is, but he has collegues who are very good at the London Bridge Lupus clinic. Good luck. Bernie

I was really really overweight too and managed to loose a fair bit but still not at my goal weight currently. Don't give up. I'm currently 30 weeks pregnant and all looking good at present after starting the treatment super early. (Like 3.5 weeks pregnant)

I really wish you the best with it. Get good advice from all angles.

That's really good 30 weeks you must be so excited. I hope your feeling well too.

Are you under Dr Raj Rai presently? And how did you lose the weight? I must admit I'm finding it really hard dont know where to start with dieting lol.

I am excited but still really worried something will go wrong. I lost identical twins at 30 weeks so it's brought back memories- although that was a complicated pregnancy for other reasons such as shared placenta. I'd struggled with my weight pretty much since teenage years. I went to slimming world and lost 5 stone but still have some to go. It is hard but I found it a really good plan to stick to and it's so healthy that you can continue even in pregnancy.

I'm not under Raj Rai now I just took his advice about starting treatment really on trying to conceive and then I'm under a haemotologist and obstetric unit at hospital. After a scan at 23 weeks looking at blood flow from me to uterus they sort of down graded me to slightly lower risk so just growth scans now. The first few weeks of a pregnancy with Lupus Anticoagulant are vital as it specifically affects implantation so heparin helps this as blocks the antibody - according to the consultant. Our poor twins were doomed from day 1 unfortunately as I didn't know I had this condition and the pregnancy was plagued with problems. I had 2 miscarriages on heparin and aspirin but I didn't start taking them till a few weeks in- that I believe is the difference!

I guess the proof will be in the final outcome.

Hi Catherine I'm really happy for you, stay positive every pregnancy is different you will be sucessful this time as things are already looking good. Is there a plan to induce you early? My last pregnancy they told me at the beginning that the consultant wouldn't let me go full term.

Wow 5 stone that's amazing. Do u know what difference it makes losing weight if it does anything to the level of antibodies in the blood. I didn't really understand why the consultant was so insistant on me. Losing weight in the first place.

Were you advised to start heprin/asprin before conception? And before you conceievd did u need to have blood test done to determine how active the antibody is. I was told last time that I needed to continue on warfarin until I was booked into the heamatology clinic. They advised that it wouldn't harm the pregnancy if I stopped wwarfarin before I got to 6 weeks. Then I saw a doctor in early pregnancy who said its contraindicative so the information they give I find isn't consistant and in the end I just felt unsupported.

I also called the london lupus centre to enquire about what the consultancy would include. Speaking to the secretary I said I was diagnosed with lupus anticoagulant, she said that's a test not a diagnosis. What?? Is she right I've always thought that was the name of the disease.

Anyway look after yourself I'm wishing you all the very best Diane.

Thanks Diane. I'm being induced at 38 weeks or earlier if necessary. I started the heparin at 3.5 weeks pregnant.

I don't know about the affect of weight on the antibody - I read on the NHS website that obesity can a play role but who knows but as I was overweight was high risk of clots regardless of any sticky blood so figured I wanted to reduce my risk once I knew I had the condition.

I'm not on medication normally but I know that could change in the future. Will wait and see. I had 3 positive tests for Lupus Anticoagulant and that plus my obstetric history gave me a formal diagnosis of APS. But no other clots or symptoms yet. I think this condition affects in different ways and can change over time.

I have tests with haemotology to test levels of the antibody in pregnancy to see if on right dosage. I definitely think you should see someone who is a real specialist in this field for everyday life and for future pregnancies as there is lots of contradicting info out there. The list on the website as on the above post is really good. I hope you get some answers.

Thanks for all your advice. And again best wishes to you and your family.

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