Sticky Blood-Hughes Syndrome Support
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How do we get our GP's to refer us to the correct specialist!

I am now 65 and have had polio since a baby. I had 1st PE at 24 after birth of my son. I had 5 miscarriages and 2 more PEs followed by 13 DVTs . Was put on Warfarin for life - before 3rd PE and many of the DVTs. Had total Hysterectomy with ovaries removed at 28. Have had constant fatigue and most of the symptoms that others have related to.

My GP diagnosed osteo-arthritis at 33 and advised living in a warmer climate, which I did for 10 years. Returned to UK in 2000 and quickly became very unwell - could hardly drag myself around and spent days at a time in bed. Was staying with my daughter so she took me to see her GP - one of the best I ever came across - she asked me to write down a full medical history for her and after reading it all took numerous blood tests. She diagnosed Antiphosphilipid and Lupus coagulant and CFS. My BP was 201/100 at that time and she referred me to Lane Fox Unit at St T. There they also diagnosed Obstructive Sleep Apneoa and a heart murmur. This all happened during 2001/2. Later diagnosed as Type 2 diabetic. Following a balloon insertion to lose weight in Feb 2012 had kidney failure and diagnosed with fatty liver. I still attend Lane Fox every 6mths and the Sleep Centre every 3mths but at no time since my diagnoses have I been referred to anybody to help me cope with all these issues. I was last year diagnosed with Fibromyalgia (only because nobody knew what was really causing all my problems). I have my INR checked every couple of weeks but only by a finger prick - haven't had a venal since in hospital last Feb. They also said I was Vit D deficiant and put me on ADCAl 2 daily and a one a month tab.

I am lucky that I have a wonderful friend who lives in and cares for me but some days I just want it to be all over, but then I think of my children and don't want to leave them. I keep myself occupied when I feel up to it by designing and knitting baby and doll outfits but the symptoms don't go away and I struggle daily.I take huge amounts of pain meds including 600mg Gabapentin 3 times daily and Fentanyl patches, tramadol and others, as well as many other meds including the Warfarin (40 years now).

What I can't understand is why am I not referred to somebody who understands how these illnesses work together and how can I lead a better life. When I asked the GP for a referral to somebody who could tell me exactly what situation I was in now I was told they have been told not to refer people!! For all I know I could be taking totally wrong meds - maybe some of my conditions don't need meds now whilst others could be getting wrong ones. Can anybody help me overcome this feeling of helplessness. Sorry to pour all this out but I really can't cope with it any longer.

3 Replies

Hi there, You need to print out the relevant papers for your doctor and take them along, and also you could take details of the expertise on Hughes System within the hospital. Please be aware that Thyroid issues and Sjogrens often go with Hughes Syndrome, so having your thyroid checked out is also a good idea. Or you can book an appointment privately at London Bridge Hospital, some of us do that instead of or as well as. Mary F x


Thank you Mary, how much does it cost to do private as I am unable to work? I did a very detailed report on every illness, operation, hospital stay from birth to the end of last year but was told that people of my age often get symptoms from the problems they start off with - and was just offered higher doses of my meds. I currently have 15 different meds daily taken either two or three times. I am sure there must be a way to reduce these meds or even have them changed for ones that would work better for me. When I was at the Sleep Centre the lady doing the overnight testing said I had a big thyroid problem and she could tell that from just looking at me and the way my neck looked? but my GP doesn't agree and won't do the test.

I have been visiting a Pain Management Clinic for the past 3 years where they did acupuncture, tens and other massage type things but nothing worked so they put me forward to a 6 week PM course which was very useful, but the Specialist I was seeing at St T recommended that they give me something like Condusive Behavioural treatment?? I had no idea what that was but when I attended the Pain Clinic in January I saw a new dr as mine has retired. I took along this full list to him too and asked him could he help me. He sat a few moments and then said NO. I was dumbstruck and asked him why and he said I had to try to learn to relax and spent the next 15 mins telling me how to relax!! I came away feeling so rejected and like there was going to be no way forward.

I go to St. T and Guy's on a regular basis even though I live 50 miles away, but nobody has ever considered referring me either to Dr Hughes department or the Lupus centre. I really want to talk to somebody who understands what is going on and can give me positive advice on how to move forward. Just a few weeks ago I had a diabetic blood test and my GP has now added statins to my meds. He said my cholestrol is too high and I stand a higher risk of stroke or heart disease so need to be on them. Surely you just can't keep adding new things without checking on what is going on with everything else.

I do thank you though for taking the time to talk to me and if you know any way I can get an appointment to attend either of the clinics I would be extremely grateful



Hi there, in order to be referred to St Thomas either to Professor Khamashata, Professor Hunt or Professor D'Cruz at St Thomas Hospital, you would need a fresh referral from your GP, lean on them and convince them. Otherwise Professor Hughes only works privately over at London Bridge, as does Professor Khamashta and Professor D'Cruz who are there as well as at St Thomas.

You can self refer to London Bridge.. take any test results you already have for your blood and everything else. It is the test which cost the money so much. Also the appointment fee. Thyroid issues are notorious with Hughes and frequently missed GP's. I went to London Bridge due to years of dire treatment.. and it did help.

So St Thomas:

London Bridge, (private):

Also papers:

oh and this: as it is relevant and so often missed by teams, and also GP's:

Best of luck

Mary Fx


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