Sticky Blood-Hughes Syndrome Support
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Professor Graham Hughes' March blog

Another record! The coldest March for 50 years! It's nearly a year since the UK's drought warning and it hasn't stopped raining since. Let's hope Easter brings a change!

Earlier this week, my colleague Professor Munther Khamashta excitedly showed me a report taken from a recent American Academy of Neurology meeting. The headline was "migraines linked to heart attacks and blood clots". The study involved 27,860 women and showed that women with migraine (with aura) had a higher risk of thrombosis including heart attacks and strokes.

The authors had not measured aPL (antiphospholipid antibodies) but all readers of this monthly 'blog' will know that the link is clear. For years we have been publishing articles suggesting that Hughes syndrome is almost certainly the link between migraine and stroke - a potentially treatable and preventable link!

Easter tends to signal the start of the lecture season and this year is no exception. Coming up we have a number of GP meetings here in London Bridge Hospital. We also have the world lupus meeting in Buenos Aires next month. I won't be going but three of our team from the London Lupus Centre will be there. Just a reminder: our annual Hughes Syndrome Foundation Patients' Day meeting is at St Thomas' Hospital on Wednesday 15th May (for details please visit:

Patient of the Month

Hughes syndrome is capable of affecting every organ of the body. Some features - pregnancy loss, brain involvement - are well recognised. Others are less so. For example, the gut.

Mr. P.T., a 56 year old office worker, was referred by Professor David Silk - a good friend and an eminent gastroenterologist. Professor Silk had, over the past several years, referred a number of patients to me with bowel problems (particularly constipation and abdominal discomfort) in whom he and his colleagues had demonstrated "neuropathy" - a malfunctioning of the nerves supplying, in this case, the gut.

Interestingly, we found that a number of their patients also had features of an associated auto-immune disease - most commonly Sjogrens syndrome (an overactive immune syndrome, leading to fatigue, aches and pains), and sometimes other 'auto-immune' problems including thyroid problems and Hughes syndrome.

Mr. P.T. was found to have positive antinuclear antibodies (ANA), but negative antiphospholipid tests. He did, however, have features of Sjogrens syndrome, and suffered from frequent migraines, one of the hallmarks of Hughes syndrome. He also had a sister with Hughes syndrome.

Normally, I would have considered a trial of low dose aspirin, but Mr. P.T. had once suffered indigestion on (a higher dose of) aspirin. The alternative was clopidogrel (Plavix), a medicine similar to aspirin in its beneficial effects on 'sticky' platelets.

Eight weeks later, Mr. P.T. returned for follow-up. "Hard to believe". Almost complete improvement in the bowel symptoms.

Is this just a fluke? Time will tell - both for the patient and for those of us studying and trying to help our patients.

If indeed it does prove to be a genuine effect, my best guess is that it is secondary to an improvement in blood flow to the gut - and to its vital nerve supply.

7 Replies

Thank you I was just wondering when a new one was going to come out!


The gut connection comes as no surprise to me. As soon as I was put on Fragmin my 40 year problem with Haemorrhoids despite surgery and pain after eating completely disappeared and I too was told it was because of improved blood flow.

Its interesting he was seronegative for Hughes and yet had the clinical symptoms plus associated autoimmune picture - like so many of us including myself. there MUST be another antibody that fits us....I just wish you would find it to make our lives that little bit easier ;)


Oh I know professor David Silk! I used to work with his horses!!! seems strange when you see someone you know come up on here!!! a good man!! who does understand autoimmune diseases!!although at the time I was in the UK I did not have mine!!! shame really as I know he would have helped me! x


I used to get a lot of lower abdominal pain but since being on Clexane this has pretty much disappeared.


Your blog patient of the month is of interest to me. I am a 61 year old lady with Hypoparathyyroidism, Under Active Thyroid & FIbro Myalgia.

I was diagnosed with sticky blood some years ago & was given the option of warfarin or asprin, i chose the latter.

I like the patient you call patient of the month was taken off the asprin due to gut problems but my blood has not been checked since to see if it is still sticky !

I have suffered with constipation for years until my motions stopped completely from passing,

I now have to take laxatives every night. I must add i also have IBS & diverticulitis, a very sore gut & raised inflammation showing in my blood.

I find it interesting that this patient has shown great improvement by taking the blood thinner

what an exciting result.

I was partly tested for Sjogrens a few years back but consultant did not pursue with it !

I now have very red sore eyes & have to use lubricating drops....Awaiting a hospital appointment for this.....but also i have developed a very dry mouth so much so i was awaking with blood in my mouth & on my pillow, for this i have been given a saliva spray.

I am awaiting to see a Gastro Consultant have you any advice of what i should tell him in my consultation that might help with diagnosis ?

For my Para thyroid problems i am seeing a consultant in Oxford ( Prof Thakkers Clinic )

at the Churchill Hospital. It is now obvious a secondary illness is going on & i'm desperatly

seeking a diagnosis.

I have taken note of the tests you have mentioned & the blood thinner that is easier on the gut. I shall watch out for your future mailings, keep up with the good work you may just may solve a lot of our problems. :) :) :)


Jilly - google Prof Silk and you will find some of his research stuff which explains about IBS and the different types etc. Whats interesting is that he does not mention any connection with IBS and autoimmunity (Celiac) or Gluten intolerance but there was a mention of food intolerances as a co contributer to symptoms tucked away on his link to their IBS support groups website. I was interested to see a link to Fructose which is a suspicion for me and something that I had not considered up until now.


I was diagnosed with Hughes syndrome following many sero-negative tests, but have had a positive test with the Anti viper test. I have had constipation since I was a child, I had one migraine with aura at the end of night duty, have memory problems when my INR is below 3. Have a pale optic disc and double vision, have balance problems and was thought to have MS at one point. It has taken since 1990 til 2012 to get a positive diagnosis. So keep going to the appointments, and tell people what is wrong.


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