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Sticky Blood-Hughes Syndrome Support
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Great article - written for Thyroid UK for their quarterly 'Harmony Magazine' by Professor Graham Hughes

Thyroid’s “fellow travellers”

In a recent issue of your magazine “Harmony”, a correspondent in the Q & A section wrote, “I have been diagnosed with under-active thyroid. I still have lots of symptoms even though I take 50mcg of thyroxine a day. Can I take any supplements on top of this that might help?”

If your continuing symptoms are aches and pains, fatigue, ‘scratching’, dry eyes, migraine, memory loss, balance problems – take note.

As you know, thyroid disease, especially underactive thyroid, is recognised as an “auto-immune” disease. – and autoimmune diseases run in families. Many of these families have histories of other autoimmune disease.

Two of these conditions commonly – probably very commonly – accompany thyroid problems. These 2 conditions are Sjogren’s Syndrome and Hughes Syndrome.

Sjogren’s Syndrome. Henrich Sjogren, a Swedish eye doctor, described a condition which included dry eyes, dry mouth and rheumatic pains. Sjogren’s is now recognised as being due to an overactive immune syndrome. The clinical picture includes vaginal dryness, bladder symptoms (recurrent cystitis) and aches and pains (commonly given the unhelpful label of ‘fibromyalgia’). It is a common condition especially in women over 40.

And yes, it is commonly found accompanying a thyroid diagnosis (especially Hashimoto’s).

Hughes Syndrome: Recognised 30 years ago, this is another so-called autoimmune condition, called “sticky blood” by the media. The cumbersome medical title we gave to the syndrome 30 years ago is “Antiphospholipid syndrome” – APS – as the condition can be detected by a simple ‘antibody’ blood test).

The condition appears to increase the risk of ‘sludging’ or even clotting of the blood, leading, for example, to DVTs (vein thromboses).

Two organs appear to be especially vulnerable to “sticky” blood. Firstly, in pregnancy, the placenta. Sludging of the placental blood supply leads to poor nutrition of the foetus, to miscarriage and even to late pregnancy loss – Stillbirth.

Hughes Syndrome is now recognised as the commonest, treatable cause of recurrent miscarriage – some women having suffered a dozen or more miscarriages.

The other organ particularly affected is the brain. Perhaps the 2 commonest ‘brain’ symptoms of Hughes Syndrome are migraine – often severe and dating back to childhood, and memory loss – sometimes mild – but occasionally bad enough to lead to worries about Alzheimer’s.

Other ‘neurological’ features are pins and needles, balance and visual problems (frequently misdiagnosed as ‘multiple sclerosis’). In extreme cases, patients can suffer TIAs (transient ischaemic attacks) and stroke – indeed, one study found that 25% of young (under 45) women with stroke tested positive for Hughes Syndrome.

Of course, the impaired circulation can affect other organs – the heart (angina), the limbs (clots and “claudication” – pain the calves on walking) – the gut (“gut angina” – tummy pain after a big meal).


Hughes Syndrome is now becoming recognised internationally (at an international conference in October, 600 clinicians and researchers met to update knowledge of the condition).

Thyroid’s fellow travellers – Important to recognise?

Both Sjogren’s Syndrome and Hughes Syndrome can and often do, respond well to treatment

Sjogren’s – in particular the fatigue and aches and pains, often respond surprisingly well to an old fashioned medicine – quinine (the agent used is Plaquenil – a safe and widely used medicine).

Hughes Syndrome usually responds well to treatment of the ‘sticky blood’ – with either baby aspirin (75mgs once a day) or with heparin (now widely used in Hughes Syndrome pregnancy), or, in more severe cases, with warfarin.

The results have been spectacular – the pregnancy success rate in Hughes Syndrome, previously less than 20%, is now over 90%.

And one of the most satisfying results is the disappearance of migraine attacks and the improvement in memory loss, seen when simple anti-clottng treatment is started.

So, Q & A lady, don’t just think Thyroid or ‘supplements’ – ask about Thyroid ‘fellow travellers’.

For further information (including the monthly ‘blog’ “Listen to the patient”, contact:


Graham Hughes

The London Lupus Centre

London Bridge Hospital



17 Replies

Thanks Maryf. Good to print off and keep. My Mum gets very confused when I try and explain what I have so will be able to give her a copy too. xx


Good news! MaryF


Thank you Mary!



You are most welcome. MaryF


Thank-You Mary. x


Hi I've written on this website of my diseases but not all as it's a long list. I'll make it short

In 2004 Polyglucosan myopathy

2005 APS diagnosed by Prof. Hughes

2006 I had nodules in my thyroid glands, my right gland and ½ of my left gland were removed.

Sjogren’s syndrome 2007

I take Plavix, Euthyrox for Thyroid glands. I was on Plaquenil for 6 weeks lost my appetite and weight but the worst was I stopped sleeping and couldn't take it. I have fatigue all day and pain in my thighs and arms did anyone try something else specially for Sjogrens as Quinine might cause macular degeneration which we have in our family. It would be very helpful of any suggestions.


Hi, Is Professor Hughes still looking after you or somebody else. Whoever is looking after you in terms of your rheumatologist needs to sit down with you regarding Plaquenil and have a chat about it with you. You need an expert opinion on that, as it may be ok for you to take. If you don't have an APS specialist please remind me/us where you are, as you do need one. MaryF


Hi Prof. Hughes referred to a colleague I'm seeing Dr. Khamashta London Lupus Centre, six weeks ago he put me on Mepacrine had some side effects but was able to tolerate it more than Plaquenil but it affected my eyesight and had to stop, that's why I was asking if there is another medication. I live now in Lebanon but travel to London every couple of months as all my doctors are in London and they have been doing research on me at St. Mary's since 2004 as I have Polyglucosan in the intestine and till now found only 5 patients in UK, some of my doctors Prof. David Silk and Lord Prof. Ara Darzi so I'm looked after by the best specialists but I'm a very rare case, anyway I have to contact Dr. Khamashta and see what he suggests. Thanks for enquiring Dalalf

1 like

Yes, I see what you mean, Professor Khamashta is definitely the right man for this job! Please let us know how you get on. Thank you for providing so much detail, we all learn off each other and it helps me to read this also. ps, I can't tolerate Plaquenil either, it makes me very ill due to severe allergic reaction, however it suits my daughter beautifully. MaryF


The research on me hasn't finished yet so I'll be posting more when they publish it as I will be getting a copy.


Great, thank you, I look forward to reading that, keep as well as possible. MaryF


Can u please tell me what Polyglucosan is! I've had intestinal problems most of my life! I also have Another Blood Disorder Allred Polycythemia Vera/PV! In 2010 only 65,000 people had it in USA!! It's weird cuz it's also come from Jack2 gene as does APS! My PV is Nick named sludgy blood! I have thick blood for both diseases & also was told recently by my APS SPECIALIST that wen I lost my left leg from blood clots spewing from my heart Downto my leg, toes and foot, that I had CATOSTROFIC APS/ CAPS! In book written by Kay Thackray called STICKYBLOOD, she says CASP SO RARE THAT THERES HARDLY ANY RESEARCH ON CAPS! So I'm a rare bird too and I can't for the life of me understand WHY! Good luck my dear! Godspeed


ncbi.nlm.nih.gov/books/NBK5... and I looked at this one also to see the relationship with B12 deficiency. As you know I always suggest to people with the mix of autoimmune disease to check their levels of iron, B12 and D, regularly alongside any other testing such as Thyroid. MaryF


Wow thanks so much for the information you sent. Very enlightening.


Thanks so much for your reply. Very enlightening.


Thanks so much for your reply very enlightening.


Thx Mary! Very interesting and amazing Doctor so blessed to have this site and to live close to NYC, where a DR. DORUK ERKAN happens to be a researcher, professor, and a Rheumatologist, whom sees Patients at HOSPITAL FOR SPECIAL SURGERY! Plus so any of my fellow comrades who live in NY or anywhere in USA or England! It's for everyone! He also answers questions on a blog or Facebook!! If u just put in His name many sites with much of the latest info will come up for you to choose! Mary im just outing this for YOU AND ALL APS SUFFERERS! My sister Nanny 23 has been doing lots of research to help me and we just found out Her sister-in-law has Sjogrens! There is also a clinic for APS there wit All types of doctors who specialize in APS! An amazingly knowledgeable site! Thank you Mary and all my APS COMRADES FOR ALL YOUR HELP! You've all been so kind & informative to me and Nanny 23! God Bless Y'all!!! I hope I can"PAY IT FORWARD," to anyone who needs the help! Thx again& GODSPEED!!!


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