Sticky Blood-Hughes Syndrome Support

Doctor is Useless!!

Hey everyone!

So i am 22 years old. My mum and my aunt both have hughes syndrome. I have had all 3 blood tests done all three came back slightly abnormal but they are saying i don't have it? The only reason i know they were abnormal is because i looked at the screen then had to ask!! What does this mean?

I have all over body aches and pains had a terrible pregnancy in 2011 with my son, was told i had sticky blood then. I need some advice people they keep telling me there is nothing wrong but i know there is. No one is in this much pain and discomfort for no reason....

Despite a detailed explanation of hughes and family history off my mother in America they still won't do a thing.

What do you all think?

5 Replies

Hello Jadie and welcome to our forum.

What you are going through is not unusual, unfortunately.

Go to the HSF website and print off lots of information and give it to your Dr. and ask (demand your rights if necessary) to be referred to a specialist; Kate at the HSF will be able to help you with suitable consultants in your area.

You could have aprivate consultation with Prof Hughes or one of his team at the London Lupus Centre but you will have to pay for that. If you would like that then you can phone them for an appointment, speak to Kim, she is very helpful.

Let us know how you get on and thank you for setting your location; that helps us to help you.

Best wishes.



I have tried all that they just keep telling me its all in my head. Emailed the Hospital in London and had a message back which i also gave them and they didnt do anything with they ordered the tests but then never gave me the results... what is the point?

I am miserable with all this pain


Hi Jaide - When you say you have tried all that and emailed the Hospital in London etc etc, could you explain which Hospital it was please? Was it St Thomas or was it the London Lupus Centre which is a private Hospital where Prof Hughes is.

If it was TheLondon Lupus Centre then you have paid for your tests and are entitled to them so you need to call them and ask for them to be sent to you. I actually dont think it is that Hospital because they are very efficient there and I would have expected them to have made an appointment with a Doctor there who would have been very understanding.

Im assuming therefore its the Louise Coote Lupus Unit at St Thomas. I had the same problem with them not sending me my results and apparently its because I didnt specifically tell the Consultant I wanted the results sent to me...dur I thought he knew that!!

So you will have to call the Consultants secretary and ask for them. It costs nothing.

As for them telling you its all in your head, well thats totally unacceptable. No matter if you have Hughes or not, clearly you have pain so that is just really disgraceful and I urge you to make a complaint to PALS. Unfortunately many of us have had to go through this and in the end had to go to the London Lupus Centre to see a Doctor privately to get the care we need and then take that back to our GP locally.

Good Luck and let us know how things are going.


I would make an appointment with a rheumatologist or a hematologist (blood specialist). It is important to know that you can be seronegative, which means the blood test won't show you have it. I have a doctor who researches APS and he has told me that APS runs in families. I had blood tests several times throughout the years and nothing showed up. It took me 30+ years to find out what my problem was after I had several small clots on both lungs. I have a friend who is seronegative, but she is being treated for APS. She had pre-eclampsia when she was pregnant and almost died. She also had an abdominal blood clot. She is being treated with Coumadin and Plaquenil now. Plaquenil helps with the pain and adds some protection against blood clotting. You have to be your own advocate. Bring someone else to the appointment with you. Let us know how you do. Good luck.


Hello Jadie

I second everything that APsnotFab has said.

Really good luck and best wishes and let us know how you get on.

Dave xx


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