Due to mention of 'Thyroid' - Professor Graham Hughes November 2014 Blog

Professor Graham Hughes November 2014 Blog:

November 2014

November is true to itself – rain and dark skies. Fireworks lasting for weeks – Lucy, our Schnauzer, frightened to go out alone.

A number of our London Lupus Centre team travelled to Boston to present papers and posters at the annual American College of Rheumatology meeting.

For me, two other meetings in November proved memorable. A Midlands GP meeting in Northampton/Wellingborough attracted 300 GPs - a good opportunity for me to spread the word about the impact of Hughes syndrome in general practice. The meeting was held in an aircraft hangar – a ‘first’ for me – stimulating and enjoyable.

The second was a one-day meeting in Barcelona, an international bringing together of colleagues working in the field of antibody testing. Specialised, but so, so important in the widespread testing of antibodies in medicine – including antiphospholipid antibodies in Hughes syndrome.

Finally, good news on the ‘awareness’ front. This year, the international journal LUPUS published a special edition (volume 23, no.12, 2014) on Hughes syndrome – selected articles following the 14th international congress on antiphospholipid antibodies, held in Brazil in 2013, an unforgettable meeting of like-minded experts, brought together by Drs Roger Levy and Yehuda Shoenfeld.

For those wishing to delve deeper into the science of the antiphospholipid syndrome, can I strongly recommend this publication: lup.sagepub.com/.

Patient of the month

A patient’s journey.

Mrs S.L., aged 53, was referred by herself. That is to say she had seen a number of specialists and no firm diagnosis or treatment had resulted.

As a teenager, she had regular migraines, bad enough to be referred by her GP to a neurologist. A diagnosis of migraine was made and a trial of anti-migraine drug followed.

In her early 20s, she developed ‘glandular fever’ – a sore throat with neck glands. This illness “knocked her out”. She became listless with aches and pains, fatigue and sleep disturbance. In addition, she developed a cold circulation, affecting both the hands and feet.

The headaches continued and she found that her balance wasn’t perfect.

She was investigated by her GP, but her blood tests were normal. On this occasion, she saw a different neurologist, who arranged a brain MRI. Normal.

A new problem appeared – she found that she was slightly short of breath – even on relatively moderate exercise. There was some chest discomfort. She was referred to a cardiologist who found, on cardiac echo, a slightly leaky heart valve. No special treatment needed.

All along, the headaches continued and life was made more difficult by her aches and pains. A diagnosis of ‘fibromyalgia’ was added. A new drug was tried –Tri-imipramine – but this made her mouth and eyes very dry and was stopped.

Then came the ‘Eureka’ moment. Her sister, Jill, who lived in Scotland, came to stay. Jill had been diagnosed recently with Hughes syndrome and was doing well on aspirin. The symptoms were similar.

Here we go ………. the internet!

Mrs S.L. and her husband did their homework. It all seemed to fit.

She went back to her GP who was excellent. He confirmed to knowing next to nothing of Hughes syndrome (“I only know that it is a cause of recurrent miscarriage”), but was prepared to learn.

Mrs S.L. was referred to our clinic at London Bridge Hospital. The blood tests (mercifully) were positive. I say “mercifully” because so often they can be ‘borderline’ or even ‘negative’ despite the clear history.

Mrs S.L. was started on baby aspirin – with some improvement – not one hundred percent, however. We next prescribed my ‘heparin trial’ – a 3-4 week course of low molecular weight heparin – a course of daily injections designed to assess any response to such anticoagulant therapy.

The result was spectacular. No headaches, brain ‘clearer’. And, interestingly, a disappearance of the chest pains.

One year later, on daily warfarin tablets, with an INR ratio of 3.5, the patient is back in this world. A clinical success!

What is this patient teaching us?

Many lessons.

Firstly, Hughes syndrome (‘sluggish blood supply’) can affect many organs, notably the brain and the heart.

Secondly, these patients often gravitate from clinic to clinic, seemingly getting nowhere.

Thirdly, migraine is an important symptom of Hughes syndrome, something the world of neurology is now appreciating.

Fourthly, (and discussed in previous ‘blogs’), two other conditions are often associated with Hughes syndrome – Sjögren’s syndrome (dry eyes and aches and pains – ‘fibromyalgia’) and hypothyroidism (a ‘lazy’ thyroid).

Finally, in this patient, the tests were positive, helping the diagnosis. But they can be negative. Listen to the patient! The clinical diagnosis carries far more weight than the blood tests.

Professor Graham Hughes Lupus Centre

London Bridge Hospital thelondonlupuscentre.co.uk

MaryF

13 Replies

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  • Mary that was a very heartwarming post and you have contributed highly to spreading the word about Hughes Syndrome.

    Well done.

  • and Professor Hughes always investigates his patients for signs of Thyroid Disease!... Mx

  • I think most of our members might be asking to see Professor Hughes to get a diagnosis.

  • If only all rheumatologists would look at the Thyroid, so common with autoimmune disease. MaryF

  • All of the Consultants should be on the look-out as it is so common but they are ignorant about the thyroid gland.

  • Yes... I have chosen not to bother with seeing an Endocrinologist... and have gone my own way, beginning to react very well to Nature Thyroid....and I prefer seeing Dr BDP! MaryFx

  • I am glad, Mary, that you're doing well on Nature-throid and are seeing Dr BDP. I think he's been unwell for the past few weeks.

  • I shall be putting a get well card and a box of chocolates in with my diaries to be posted this week-end! MaryF

  • Thanks for posting, Mary. Refreshing to hear of an eminent doctor who advocates listening to patients and doesn't consider blood tests to be the beginning and end of a clinical diagnosis.

  • Thanks for the article MaryF I have Hughes syndrome and Sjogrens but did not know they are related

  • Yes indeed, I encourage all our members over on Hughes Syndrome Foundation forum on this platform if suspecting Thyroid issues to join this one, and of course vice versa. MaryF

  • How apt this posting is of what Professor Hughes explained to me yesterday, he spoke of what he referred to as the big three

    Thyroid anti bodies

    Sjogrens

    Aps

    He told me i was classic of this posting, he went on to add that i also have a lazy thyroid.

    I have lost all faith in my endocrinologist whom is now trying to stop my T3, it gave me great pleasure to inform him this morning that Prof Hughes wants me to carry on taking it.

    The Prof also noticed amongst my many blood test results that i had taken with me my

    vit D was rather low........i'm hypoparathyroid & take calcitriol to replace the vit D that my body is unable to store so i was rather surprised to hear it was low.

    This i also mentioned to my endocrine consultant this morning.......this was his reply.

    The vitamin D result i have was 58, which some would say was low, but i think it is probably OK.

    It is of no wonder i have lost faith if my health is based on PROBABLY.

    If it is OK why do i feel so damned ill i sent as a reply...........no answer was received back.

  • You are making great progress, and you may have to push for the dosing, with whichever medical professional you trust the most! This forum is the best place to be for your Thyroid and associated problems and do familiarize yourself with the charity pages for TUK also. I have learnt loads of here and continue to do so. MaryF

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