Graham Hughes' July blog 2013

Another British weather record. "The sixth hottest July since records began in 1659"! Wonderful. A month of unbroken sunshine.

London is packed with tourists. The river cruise boats which ply up and down the Thames outside my window at London Bridge are doing a roaring trade. The sun really brings the best out of this glorious city.

Early in July, we had a weeks holiday in Kent - in St Margaret's Bay, the small coastal village where I used to do a GP locum each summer ('Tales of a Flying Doctor'. Hughes GRV. Hayward Medical Press).

This month saw two new booklets on Hughes syndrome. Three years' worth of my monthly 'Patient of the Month' blogs have been put together as a book, thanks to the generosity of INOVA, a biotech company in America. They plan to give all doctors attending Hughes syndrome and lupus conferences free copies. They are also providing our charity with a number to sell. Kate has the 'blog books' which are on sale for £5 on the charity website:

By coincidence, another small book has just come out - "Hughes syndrome - highways and byways", produced by Professor Khamashta and myself, and published by Springer (ISBN 978-1-4471-5160-9). This pocket-sized book is aimed at trainee doctors, health care workers and patients. It summarises in brief 1-2 paragraph form, eighty or so features associated with the syndrome - each section also including a guide to further reading.

Patient of the month

"I've got my life back."

Of course it can be tempting to give more space to successes rather than to failures, but this month's (and next month's) "cases of the month" are too important to miss.

Mrs R.B., 35, had recently got married. She had worked as a high-powered solicitor in an international finance company in the City of London.

For over twenty years she had been prone to migrainous headaches, but for the past 4-5 years, these had become more frequent. Over the same period, she had become fatigued, achy, prone to forgetfulness - and concerned about the future. She felt that her job was at stake and even contemplated putting off her wedding to her long-standing fiancé.

Needless to say, the two medical labels "depression" and "fibromyalgia" had been suggested. Fortunately her GP, and subsequently a consultant psychiatrist, had agreed that depression was not the diagnosis.

There were other symptoms - intermittent stomach pains for example. It was this latter symptom which led eventually to treatment success. She was seen by a gastro-enterologist, Professor David Silk - an outstanding physician, who suspected autoimmune disease and referred her to me.

On examination, she had two tell-tale findings - bone dry eyes on tear testing and mild livedo (blotchiness of the skin). The blood tests supported the two linked diagnoses of Hughes syndrome (migraines, memory loss and possibly the abdominal pains) and Sjogren's syndrome (dry eyes, dry mouth, fatigue, aches and pains).

She was started on the classical pair of treatments - aspirin (later changed to Plavix) and Plaquenil (a quinine derivative) for the Sjogren's.

Three months went by before I saw her again. "Thank you doctor. I've got my life back". The headaches, the aches and pains, the fatigue - gone! The silly memory problems - gone!

And, interestingly, the tummy pains - gone (something I see not infrequently in my Hughes syndrome patients).

One wonders how many patients with similar histories are out there, losing out on diagnosis - and on treatment.

23 Replies

  • I wonder just how many patients you have given their life back to Prof? I know I owe mine to you....what would we do without you? xx

  • I am the old Lure now called Lure2. I read Sticky Blood Explained by Kay Thrackray 2011. It was diffucult to read!! On page 55 I understood that I had APS and I had to do what the doctors told me: Start warfarin. I got my Life back!


  • Me too, but still have blips. Now i know what i have, i try to manage my day to day routines.xx

  • and the despicable attitudes towards myself and family ended once some genuinely careful medical opinion and common sense entered the equation! Also it helped unlock the medical mysteries of my wider family, alongside my own research. Mary F x

  • I tried the link for the book, but it does not seem to work. Maybe some part of it has been omitted ?

  • Hi, I think it must be the fact there is a full stop after the php extension. Try this:

  • Although I would not say I've fully got my life back my condition is much easier to manage with a diagnosis, unfortunately a lot of damage had been done to me, but the diagnosis certainly saved things from getting worse.

  • Your sense of humour remained intact with some advanced capabilities! MaryF x

  • Here in the us they are still with you are depressed and have fibromyalgia. The aspirin isnt tolerated and i have the stomach problems that many talk about but the doctors here dont listen. I wish i could get my hands on the booklets to bring to them. I cant even work because of the joint pain migraines and fatigue.

  • Hi - our charity produces over 25 factsheets about APS, perhaps you could print out the relevant ones to help fight your case?

    I personally can't tolerate aspirin after being on antiflams as well - I take clopidogrel instead and have no problems at all now - throwing up blood isn't much fun is it?! Maybe you could ask for an alternative?

  • And in the US as well as here, still thyroid issues with autoimmune are not picked up.. clinical symptoms are often ignored, even though it goes hand in hand with Hughes Syndrome a lot of the time.. and once again those 'tests' which are supposed to form part of the diagnosis, are the only thing looked at. I have lost count of the amount of people so far who have turned out to have thyroid issues having been told for years they have ME, or are depressed or have Fibro, which of course some people have for other reasons. Mary F x

  • I absolutely agree with this. I have had two years of hell being told I have got all sorts of other conditions but after being sent to an Endo who knew what he was doing by Prof H so was up on APS, finally the right thyroid meds are making a difference. My GP told me my results were fine! I will say no more!

  • Well having had such a spat in the first place and well armed with information about the culture out there towards patients and medical staff over thyroid issues, I went privately via a private testing lab, and also a private GP who is now a nutritionist, so glad I did... funny as soon as i was on the staff the giant heart palpitations I experienced in the evening, went away...within two weeks! We all have to be our own detectives, it seems that many patients these days are not examined! Mary F x

  • Yes I had to go private too. The NHS are letting down Thyroid patients terribly, mainly because they insist on sticking to TSH reference ranges that are something out of cloud cuckoo land and dont tell anything useful about what is actually going on with the patients Thyroid!

  • Unfortunately this is happening even if patients go privately. The regime around thyroid testing is governed by the medical regulators and in the pocket of big pharma! Also so many patients do better on the natural desiccated thyroid preparations but many GP's are loath to prescribe them due to the culture they can land themselves in! Mary F x

  • Dr Sarah Myhill who is a GP specialising in fatigue runs free T3 free T4 and TSH blood tests through the post.Her website makes compelling reading on thyroid issues(google Sarah Myhill thyroid).

  • Yes also group support via Facebook. Mary F x

  • My Endo has told me that due to a new published double blinded trial released a couple of months ago in the USA on NDT which was probable carried out to discredit it but actually turned out very credible, will mean that the FDA will licence NDT again over there and we will follow suit! The very fact that respectable Endos have read this and are commenting as such means that a sea change is coming.

  • I wish I could get to DC Hughes- my problems with this very unstable INR'S have been so missed understood , they try to group people here and it can't be done . I am a rear duck -all my specialist have agreed- I am the exception to the rule - jet you are way out there - you are a unique patient- you are the most medically complex person and patient I have ever seen in my career -. it seems to be my pcp's that don't get it and they took away my Dc. Chou that we had gone so far with . I need some hard fact's of people like me that will have to blood test every 3 day's for the rest of my life{ won't be long with whom i'm dealing with now } just because I go a week and stay in my range doesn't mean I will be there in 3 more day's example 2 week's ago now --- Monday 2.7 Wednesday 9.1- where would I have been in 5 more day's if I hadn't of gone to battle over it. It's a battle that with all my other things I am losing . maybe Dc. Hughes can send an article that we people do exist and put an end to this constant battle . I read an article once that stated just this BUT have been unable to find it again. that is what I need-----------------my ongoing nightmare. But with out the help I have gotten over the 4 years { my anniversary is Sept 1 st , my roommate Mary's birthday also, god rest her sole . } is coming up and I don't know what I would of done with out this site and all of you in it that have been with me all the way with help and understanding - with the utmost of compassion-- for this I will be for ever grateful and indebted to -- god bless you all from the bottom of my heart ( dc's say I do have one -- just ask Sheena or Suz - ] fore with out them in particular I may not even be here, god's honest truth.. thanks again to all

    shaky- confused , not to skinny anymore , soon to be flipper again, not to tall,--------------------------------- JET

  • Jet, a suggestion. Could you get your Doctor to write to Prof Hughes at London Bridge with the specific questions on treatment queries they have? He is very good and I'm sure if he has the time will reply. You can get the contact details from the web but I can give you his secretaries email details if you want them.

  • I am curious as I have been very recently diagnosed with Hemiplegic migraine but I also got diagnosed several years ago with antiphospholipid and I have been on 300mg Aspirin daily (built up from originally75mg) ever since. I get the impression my version must be fairly mild and was picked up on as a result of investigating a pretty severe mystery illness 6 years ago.

    I joined the forum as I don't really know much about it and now am intrigued by this possible connection with migraine. I understand my Hemiplegic Migraine is quite rare. Is there a possible connection? It gives me stroke like symptoms which can strike at any time and for any length of time, which with the benefit of hindsight is similar to my original mystery illness 6 years ago and other 'mystery ailments' over the years

  • Hi - I've also been recently diagnosed with hemiplegic migraine and was treated at an excellent stroke unit in Winchester. After speaking to the trustees here (at the HSF) I think that, although hemiplegic migraine is rare, it can be considered as being linked to APS.

    The HM completely paralysed me down one side and my speech went for a day - one doctor wanted it listed as a stroke/TIA, but the way the symptoms came on, I believe it was definitely HM. They kept me in the stroke unit for three (long!) days but my speech and writing ability had bounced back quite quickly - the walking took about a week. I had an appointment a month later, double checked the CT and MRI scans with them and was happy there was no lasting damage and agree it was HM.

    I get a lot of aura with mine - which I know now to take notice of and get away from work asap! Luckily the severe pain only comes after a full attack.

    The National Migraine Centre are very clued up on HM so please have a look on their website or give them a call:

  • Wow! It's great to finally to talk to someone else with similar. My illness 6 years ago manifested how you describe except it started with a really a high temperature and then went into the paralysis down one side. Lost my speech and writing ability etc etc. I had lumbar punctures etc but I have a family history of brain haemhorrage and blood clotting so I think that is also a route they were going down alot. I was in hospital twice in a month, kept in for three days each time. In the past I have had suspected thrombosis because of an arm going dead too and I have had my leg give way, or loss of balance, repeated unexplained loss of speech or numbness down one side of my face. But what threw them as I understand it was it effects both sides of my body so it took a long time to figure out and a lot of MRIs. I have asked my GP if this can be anything to do with my being ambidextrous which might sound random but who knows with the way neural pathways work? I will try to contact the migraine clinic. Thank you Kate

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