Professor Graham Hughes August and September Bl... - Thyroid UK

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Professor Graham Hughes August and September Blog 2015 (mention of Thyroid and Fibromyalgia)

MaryF profile image
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Please have a read, a lot of us have overlapping disease beyond Thyroid,

BLOG : August and September 2015

Almost the end of September! My apologies to those who follow the BLOG for the late arrival of the August blog. Unfortunately, at the end of August I had to go through abdominal surgery. I know it is something of a cliché, but it is often said that doctors make the worst patients – I certainly fall into that category – so impatient!

On a happier note, last week we had a small party at London Bridge Hospital to celebrate the 10th anniversary of the London Lupus Centre at this hospital. The party, hosted by John Reay, CEO at London Bridge Hospital, included the 9 doctors of the lupus team, the secretarial and nursing staff, and a number of medical colleagues from other specialities. Our 2 V.I.P. guests were Mrs Cheryl Marcus, the Founder of the national lupus charity, Lupus UK, and Lynn Faulds Wood, who did so much to put lupus on the map through her television and other work.

John Reay, in his speech, talked about the historic decisions 10 years ago to bring in highly specialist units such as the Liver Transplant Unit the London Lupus Centre into a private hospital. The Lupus Centre now sees some 400 lupus and Hughes Syndrome patients a month, from all corners of the world – from 57 countries to date.

For my part, working in such a positive and supportive environment has been pure joy. This is head and shoulders the best run hospital I have ever worked in.

Patient of the month

Mrs K.T., aged 46, was referred for a second opinion regarding a possible diagnosis of Hughes Syndrome.

For 6 – 8 years, she had suffered from a variety of symptoms, including fatigue, headaches, slight shortness of breath and some chest pains. She had been previously investigated and no firm diagnosis had been made (her current label was ‘fibromyalgia’! Her sister, aged 40, had lupus, and it was this sister who encouraged Mrs K.T. not to give up.

Finally, she was tested for lupus (negative) and with antiphospholipid tests (anticardiolipin and lupus anticoagulant) – also negative.

Mrs K.T. arrived at the London Lupus Centre armed with a printout of her history. And it was a very significant history : migraines since childhood, cold circulation, pregnancy loss – 1 miscarriage, 1 stillbirth at 8 months. No further pregnancies.

Her more recent history had included chest pains, an increase in intensity of her headaches, and, on questioning, worsening memory problems. Clinical examination revealed mild blotchy livedo (“corned beef skin”) on the arms and the knees. She also had dry eyes and a degree of tenderness in the small joints.

But it was her family history which was so significant – sisters and various aunts with thyroid disease, migraine, miscarriages, lupus, epilepsy and multiple sclerosis – all common enough in themselves, but in this family, pointing towards an ‘auto-immune’ tendency.

But our tests, again, were negative!

Her lupus sister (who came with the patient, also had Hughes Syndrome, including mini-strokes) was on anticoagulant treatment (warfarin) and now free of symptoms.

Negative tests. Brain and other scans normal. Should we treat?

YES YES YES

Firstly, it is unusual to get so many clues in a patient – the clinical history, the physical findings, the powerful family history.

We made 2 decisions. Firstly, to treat, and , secondly to re-test the serum.

Mrs K.T. was started on low dose aspirin with little improvement. We then moved to our “3 week heparin trial” – a self-administered course of daily (low molecular weight)

heparin. An almost immediate amazing response. Disappearance of the headaches, the chest pains and the fatigue.

Two years later, the patient remains well and almost symptom-free on warfarin (Coumadin), with added Plaquenil (hydroxychloroquine) for her Sjogren’s aches and pains.

An guess what – a third (newer) test for Hughes Syndrome – the so called ‘Beta2’ test, came back strongly positive!

What is this patient teaching us?

As always, a number of lessons. The family history is so important. Hughes Syndrome is a major cause of ‘sticky blood’. There are other causes, but a major clue to the diagnosis of Hughes Syndrome is the “autoimmune connection” – patients and relatives often giving a history of autoimmune diseases, such as lupus, Sjogren’s or Hashimoto’s thyroid disease.

The second important lesson concerns the negative tests. As in other autoimmune diseases such as lupus and rheumatoid arthritis, the tests can be unhelpful. In Mrs K.T.’s case, only the ‘newer’ test – anti-Beta2 – was positive.

There are probably many patients out there who have all the features of Hughes Syndrome but who are ‘sero-negative’. Obviously, there is still a need for newer screening tests. For me, the concept of ‘sero-negative’ Hughes Syndrome is one of the most important in the whole of my clinical practice.

Which brings me to the “third lesson” – for doctors. Do not be afraid to treat. If the suspicion of the diagnosis is strong enough, consider treatment. The introduction of appropriate anti-clotting treatment in Hughes Syndrome can be life-changing.

MaryF

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Chrystalheart profile image
Chrystalheart

You've perfectly described me and my family. I'm going to look up Hughes disease. Thank you for posting!

MaryF profile image
MaryF in reply to Chrystalheart

Ok, ok, here you go: hughes-syndrome.org/ and we have a forum on this very same platform, lots of our members are also members on Thyroid UK. On our charity website we have a list of recommended specialists across the UK, come back to me if you need any further help. Also related conditions, which of course includes Thyroid and Sjogrens Disease. There is also this useful film: youtube.com/watch?v=3LXWT6C...

MaryF

Chrystalheart profile image
Chrystalheart in reply to MaryF

Thank you so much, Mary!

MaryF profile image
MaryF in reply to Chrystalheart

My pleasure, I look after the forum with a couple of colleagues over on HSF on this platform. MaryF

MaryF profile image
MaryF in reply to Chrystalheart

Also we have our annual Patient's Day Conference at St Thomas' Hospital on May 18th next year. Come back to me if you need any info regarding any of the above. MaryF

Trixie64 profile image
Trixie64 in reply to MaryF

Interesting for me to see Prof. Hughes - in the late 70s I worked for him as a lab technician at Hammersmith Hospital where he was consultant rheumatologist.

Thankfully, I haven't got Hughes syndrome, but Hashimoto's.

MaryF profile image
MaryF in reply to Trixie64

Great... I will pass that on to him, pm me your name if you want. All the best to you. MaryF

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