Professor Graham Hughes' Monthly Blog July 2016

BLOG : July 2016

A month of highs and lows. After the awful, grey June, at least the weather brightened up. Lows included the terrorist outrages in France. After the lorry massacre on the Promenade de Anglais in Nice, I emailed my colleague, Professor Eric Rosenthal, Consultant Rheumatologist in Nice (and a former research fellow). He and his family had left the fireworks and promenade only minutes before the attack.

At the end of June, I attended the opening of the new “Graham Hughes Autoimmune Disease Centre” in Madeira, Portugal. Such an unexpected honour and a wonderful 48 hours in the presence of Dr Jorge Martin and all his Portuguese colleagues, as well as a large group of patients with lupus and Hughes Syndrome.

Our own medical highlight in July was the annual London Bridge Hospital “Ten Topics in Rheumatology” 2-day meeting. Two hundred attendees and the crème-de-la-crème of medical researchers and speakers. The best ever! Our keynote speaker was Dr Jane Dacre, President of the Royal College of Physicians, and a practicing rheumatologist.

On the subject of international collaboration, the 14th International Symposium on antiphospholipid antibodies is planned for later this year…...in Istanbul. The organiser, Dr Doruk Erken, must be tearing his hair out trying to find a ‘safer’ venue. I wish him well – such an important meeting.

Patient of the month

Recently, I received an interesting letter from one of my Hughes Syndrome patients. It began: “Dear Prof Hughes…….No more fractures!”…

Mrs F.D. a 46 year old civil servant, was diagnosed with Hughes Syndrome after a long history of migraines, cold circulation, balance problems, and at least one D.V.T. Blood tests were positive for antiphospholipid antibodies. She had been treated with aspirin, apart from the 6 months on warfarin, following her D.V.T.

An odd feature of her illness had been the tendency to unexpected bone fractures – mainly in the toe bones (metatarsal fractures – often known as ‘March fractures’), but also at least two rib fractures. She had been investigated for osteoporosis and for calcium-related problems – nothing abnormal found.

A year earlier, she had started to suffer from shortness of breath. Oxygen levels wre slightly down, but otherwise both lung and heart tests were normal.

At this stage, it was decided to switch Mrs F.D. to warfarin. After some weeks, warfarin control was stable. The patient felt better – no shortness of breath, no headaches, and…..”no more fractures”.

What is the patient teaching us?

Many colleagues think of Hughes Syndrome as ‘blood clots and miscarriage’. However, it is clear that the symptoms can be varied and widespread. “Sticky blood” can, quite obviously, affect any organ, including the heart (angina), the gut (abdominal pain after eating), and, in the case of Mrs F.D., the lungs, for example, from multiple small pulmonary emboli.

Could “sticky blood” affect the oxygen supply to the bones? Most certainly, and in our clinic, over the years, we have seen hip problems, wrist problems (bone necrosis) and, yes, unexpected bone fractures. We first reported a link with metatarsal fractures back in 2004. Dr Shirish Sangle was the first author of the paper (Ann Rheum Dis 2004, 65, 1241-3), which reported on 27 patients with Hughes Syndrome and metatarsal fractures.

Since then, fractures have been reported in other sites such as the ribs – and indeed, we have seen many patients who, over the years, have suffered a number of fractures.

What could be the possible reason? Most probably impaired blood supply and nutrition to that bone. (Another hypothesis brings in impaired autonomic nerve supply to the bone).

And would anticoagulation – leading to loss of ‘sludging and better blood supply’, be beneficial? One would think so – Mrs F.D. certainly thinks so.

There is another lesson to be learnt – how many of us when seeing a patient with suspected Hughes Syndrome thinks to ask “have you ever had an unexpected fracture, for instance in the foot”?

My own hunch is that Mrs F.D’s fractures will open a whole new area of study in orthopaedics.

MaryF

30 Replies

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  • Thank you Mary!

    Interestiing as always!

    Kerstin

  • Yes a blog from the very best! MaryF

  • THANKYOU Mary very interesting. It seems APS can affect different people in different ways. Maybe my stomach problems are from APS. I'm tested for everything else and only found diverticulosis and polyps so far. In the blog I noticed a connection with stomach issues. Maybe need to be investigated more by APS dr instead of gastro. A new idea anyway. THANKYOU again much appreciated

  • My stomach has greatly improved with the total removal of gluten! MaryF

  • Same for me but there is the issue of "stomach angina" which is pain felt about 30-45 minutes after a meal when there is a compromised blood supply to the digestive system which is trying to digest the meal just eaten.

  • Yes my son had that, it improved greatly on Aspirin. MaryF

  • Mary I've removed gluten take probiotics done everything people have here has advised. Even drink kefir which has helped some. Being gluten free hasn't helped my stomach but I did lose 13 pounds. That also could have been due to my thyroid medicine being increased don't know. Tried going dairy free too no help for my stomach. If I could somehow solve my severe constipation I think I would feel better. But nothing helps not even warmed up prune juice which always worked before. I take magnesium and that seemed to work for a while then stopped working. My food seems to sit in my stomach and stay there. THANKYOU for your reply

  • Which Thyroid medicine are you on, as unfotunately most have gluten in the fillers, yes really they do! Also Levo does not work for everybody. The D102 gene test shows if you are converting the Levo, which is synthetic T4 into T3. NDT, Natural desiccated thyroid is prescribed to some patients on a named patient basis only, this helps act as evidence. MaryF

  • Hi Mary I am on synthroid. Was nauseous for about 3 months every morning. Maybe that's the answer. Unfortunately they only test TSH which was below 1 last time tested in June. They raised it because I told him I didn't feel that great. Painful joints constipation back etc. I asked him why after I started the synthroid it seemed to relieve those symptoms but now they are back. Within a week after higher dose joint pain went away constipation was a little better. I really had to convince him to raise it. It worked. He wanted to put me on a new medicine for neuropathy as I tested positive for that with nerve testing. I refused and said I think I need more thyroid medicine and it worked. I am not a diabetic so don't know why I tested positive for neuropathy. I am from New York in the states so blue horizon I believe is in the UK. I don't know if there is a private lab here in the states. I could find out but never heard of one without a Drs prescription. THANKYOU so much for your reply. You are very kind

  • There are doctors in the USA who prescribe alternatives to the medication you are on, Mary Shomon is a good person to read about online, as is Hypothyroid Mom! All over in the USA in the meantime if it is good enough for her etc etc: hypothyroidmom.com/presiden... Incidentally she also has a blood clotting condition, I bet she has Hughes Syndrome/APS! MaryF

  • Hi Mary I thought the same thing when I read it. My dr feels the same as most of NDT. I did feel him out about in June. His answer was the dosage is not as reliable as synthetics. He is brainwashed like so many others all over the world unfortunately. I have been in Canada on my home away from home on the RIDEAU CANAL. thanks to the British it exists. Was built as a defense against the USA as a series of lakes to bypass the St Lawrence river in case of another war after 1812. Thankfully it was never needed and became a national park in Canada. I have a cottage on one of the lakes the Big Rideau. I live here in the summer I love it. When I get home I will see my dr. Again and try to find out if maybe it's the fillers in synthroid. My dr who treats my stomach woes even said I investigate what's in it. I so appreciate your help. THANKYOU so much for your replies.

  • I have recently been in exactly your situation. Tried everything, went GF - after 2 years of issues. Even had colonoscopy. Then thyroid meds changed because at last they could see that despite constant increases in dose nothing was happening. Was put on NDT and within 3 days ALL stomach issues stopped and I mean all! Not only am I sure that there is gluten in the fillers in the synthetic Levo but also I had a RT3 test done which showed that I was simply not getting the medication into my cells so you end up with too much T4. NDT has both T4 and T3 so if you need T3 which it sounds to me like you do, this medication is a perfect way to get it. NDT IS stable it is a pharmaceutical product so perhaps do some homework on it to show that before seeing your Dr again. Good Luck!

  • THANKYOU so much will do.

  • Also rather than relying on the TSH test I do all these privately, via Blue Horizon: thyroiduk.org.uk/tuk/testin...

    MaryF

  • Ask your HCP ( health care practitioner) if you can use pericolace. I use it and find it keeps me very regular without problems. "Knock on wood". I actually substitute Walmarts brand no problems and very cheap! Hope this helps you. Be well! I take one tab every evening and usually go by the next afternoon.

  • THANKYOU so much will try it

  • Let me know if it works for you. My fingers are crossed, Cindy in NJ, USA

  • Will do we are neighbors. Long Island New York. Babylon. Thanks so much appreciate it

  • How did your sis make out with her chest pain? Is she still in the hospital?

  • Who is your APS specialist?

  • Not her heart thank God. I think it's either stress or APS related. She takes care of husband with alheimerze and a disabled son. She really can't take care of herself like she needs to. I need to retire and help her out I'm old enough to do it lol. Thanks so much for asking.

  • Interesting. Thank you!

  • Thanks for this Mary. I have been having non stress related spinal fractures for over 10 years. I have 10 fractures, between thoracic and lunbar vertebrae and noone has checked the cervical but I have gone from 1.72 m to 1.63 m or the equivalent of 5 ft 7 1/2 to 5 ft 4 1/2 and I'm just 61 have been on warfarin since 2000 following pulmonary embolism and wasn't diagnosed with APS until I finally asked my GP to send me to St Thomas' as my Home town Heamatologist wouldn't allow me to increase my INR from 2-3 , 3-4 to deal with the Brain fog . Even now this guy was trying to change me from warfarin to new drug and I refused saying I would prefer to see what Dr Breen said who in no uncertain terms wrote that due to requiring the higher INR I must remain on Warfarin. Thank God for the specialist.

    I have just recently had a stress related fracture caused by my wheelchair rolling sideways and I fractured right upper arm and left elbow. And my osteoporosis/endocrinologist has started me on Teriparatide a daily injection to help bone growth. So I shall show him Prof Hughes blog, it may be of some interest. Good luck to all APS people

  • I am sure your consultant will be very interested! MaryF

  • Very interesting read, thank you, CINDY IN NJ, US

  • Hi Mary Can u let me no what date in 2017 the one day conference is on and where. I am usually away but want to make sure I attend this one. How do u register.

  • HI, contact Kate Hindle at the actual charity, she my know the date already, but if not can give you some ideas of the possibility. MaryF

  • Came u let me have Kates contact details please as I definately don't want to miss it. Many thanks. Pauline.

  • You can either contact her on here, KateH or by email: hughes-syndrome.org/about-h... Best of luck. MaryF

  • Thank u so much Mary have sent a mail.

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