I previously inquired about the endoscopy procedure and APS patients on anticoagulants on the risks of bleeding. Thank you very much for all the positive advice, which helped to allievate my fears. The results of the procedure confirmed I have Barretts oesophagus and Fatty Liver disease. I would like to know if anyone with APS/Hughes have similar experience and if these conditions are in anyway affected by or attributed to the APS/Hughes. My concerns are around how future consultants deal with my APS condition while treating these gastrointestinal conditions
Are any one aware of connection betwe... - Hughes Syndrome -...
I have both. However I just read something that drinking pop can increase your chance of fatty liver. Over the years I have had my share of soda pop.
Hi, the relationship loosely seems to be with Hashimoto's DIsease, it is seen a lot the acid reflux, and regarding the fatty liver disease this is often seen in patients who have untreated or badly medicated thyroid conditions. We urge our members on here, as so many with Hughes Syndrome/APS seem to have Thyroid conditions, to check out their Thyroid levels beyond the one size fits all TSH test which is normally the only one done by the hospital and GP surgeries, sometimes they do throw in and antibody test for Thyroid. The trio of disease as written about frequently by Professor Hughes' himself is Hughes Syndrome/APS, Sjogrens and a Thyroid disorder. Also be aware that a medication often used to suppress the acid often blocks your absorption of B12.
When I test my Thyroid, (and it did not show up for years on the TSH test), I save up and do a very detailed panel which accurately did show that I had a Thyroid problem and also what to do about it.
Unfortunately some patients get labelled with a 'Fibro' diagnosis and proper tests for the above have not been done.
This is a short article written by Professor Hughes for Thyroid UK's quarterly magazine, some time back.
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:
ghic.world/ and The London Lupus Centre – londonlupuscentre.com.
The London Lupus Centre
London Bridge Hospital
I also enclose this as it is a good read: the-rheumatologist.org/arti...
I also forgot to add in that a lot with Hashimoto's due badly on a diet containing gluten and some also with dairy. I am not dairy free, but I am gluten free, completely and before each meal of any size I have a table spoon of unpasteurised cider vinegar which has helped me immensely alongside taking probiotics. MaryF
Thank you all for finding the time to respond to my query, I am touched by the advice and information. I believe I probably a good candidate for having Sjogrens Syndrome and Thyroid problems, as I do have all the 'multiple sclerosis' type symptoms, memory loss, migraines, regular falls due to daily cramps in my legs. I often worry that I am developing Alzheimer's when I leave my cooker on and drop off to sleep because of sleep apnoea. My mother has vascular dementia because of a stroke some years ago , the prospects of me following suit is very real.
I had hoped that my new GP would have taken my diagnosis of fibromyalgia seriously such that I would be given a review and test for other similar related conditions, however as he cannot recognize APS/Hughes syndrome as a condition requiring monitoring I am having to educate myself such that when I am given new and challenging diagnosis such as Barretts and fatty liver disease I can at least go with relevant questions when seeing the consultants for the first time to remind them about APS/Hughes, to take this into consideration when considering treatment. I dont drink eat very little meat, lived as a vegetarian for most of my adult life, However I have server allergies which include, wheat/gluten, fish, dairy, latex and chemical substances. Therefore having a healthy diet is very challenging.
I have noticed since my GP denied me the Plaquenil since joining his surgery that my fatigue, aches and pains is unmanageable and I end up having to spend most days in bed. I have now found a private clinic locally who has given me private prescriptions for the medication that was denied me, they have offered to carry out a Thyroid test for me but will consider contacting the London Lupus Centre until I am able to find a new GP willing to treat my medical condition and make the necessary referrals to the respective clinics for a review of my disabilites.
Thanks once again to every one for their invaluable advice