Sticky Blood-Hughes Syndrome Support
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Differences in care - an experience shared

Over the last couple of days my eyes have been opened to differences of opinion within the medical profession when it comes to an aps diagnosis.

I'm currently 35 weeks pregnant. I'm taking a low dosage of Fragmin, combined with aspirin. Prior to my pregnancy, I experienced 5 miscarriages, pre-term birth, a retained placenta caused by clots as well as a myriad of odd symptoms (poor circulation, pins and needles etc). Whilst both blood tests for aps came back as positive, they fell within the lower grey area of positive. Luckily, given my history and results my haematologist surmised that I have "probable aps" and has treated me as an aps patient. Subsequently, I'm now further in my pregnancy than I've ever reached and am at the point of discussing birth plans (an induction at 38 weeks has been advised).

Yesterday, we visited a different hospital to explore the possibility of having our baby outside of our catchment. We met with a haematologist. Perhaps rather naively we assumed he would simply follow the care plan as outlined by our current consultants. He completely disagreed with my diagnosis, claiming that my blood results were not high enough for an aps diagnosis despite being outside of the normal range. My history wasn't enough for a confirmed diagnosis either and if we were to have the baby at this particular hospital, the pregnancy would be allowed to continue with labour commencing naturally and they wouldn't recommend Fragmin injections afterwards. Essentially he was totally dismissive and said "you do not have aps".

I am so very grateful to have found a haematologist that listened to me, that has considered the middle ground and for getting me this far in the pregnancy. Needless to say, we will not be having our baby at the other hospital. We met with our current haematologist today, discussed our experience and he even apologised for what happened with the other consultant, stating many haematologists are too rigid when it comes to a diagnosis. He reiterated his reasonings for my diagnosis and I left the appointment feeling that I have the best person looking after me.

I just wanted to share my experience. I am startled at how two different haematologists can be so opposing with the same set of results. I guess if nothing else, it highlights the importance of finding the right person for your care.

5 Replies

I am so sorry you have had this terrible attitude, and unfortunately this is not uncommon, thankfully you have the right one to return to, of course you need some after care. I myself was on fragmin for 6 weeks or more after each pregnancy and during also. My two sisters also. I must say even if you have been treated in hospital for Hughes Syndrome as a Sero negative patient with a history of multiple clots and a classic history, the rigidity of these professionals seems to allow no room for common sense at times! There was even a reluctance with my own case to fetch my rather telling and historical notes from St Thomas' archives! Good luck for you, and well done in standing your ground. Mary F x


Sigh! I really really hoped that the medical fraternity was moving forward but in the last six months I am getting so depressed with all the stories such as yours and others with patients having their dx taken away, medications stopped and being discharged from hospitals.

Its all very well having opposing medical opinions but when it is about a condition that could result in life changing disabilities or fatalities then its time for medics to start squabbling over these opinions and put their patients interests at heart.

There are guidelines BUT those guidelines are meant to be used as GUIDES. Doctors are supposed to apply them against a patients individual clinical history and present symptoms. If they do not feel confident about veering away from the guidelines then they should refer them on to another Doctor but they should not just stick rigidly, despite all that is in front of them, dismissing what is obvious and putting that patient at risk. They have a duty of care to their patient and it is up to us to constantly remind them of that!

Again, and I find myself doing this far too often, Im so sorry that at such a worrying point in your pregnancy you have had to endure such an ignorant experience. Thank Heavens you have a Doctor with knowledge and down right common sense! Hang on to him! Good Luck and we hope to hear your good news soon! x


Fantastic news that your pregnancy is going so well.

We find this in New Zealand as well.

Derek's Rhumy recommended his INR be 2.5-3.5 but preferably in the 3's and doesn't want his INR drop below 1.8 without Clexane because of the high blood readings of APS.

But when Derek had to use a Hospital in another area for surgery last year, Haematology Dpt didn't actually look up the records that were availalbe, (and screamed major clotting disorder), but told the surgeon/anethatist that Derek simply needed Hepron 12 hrs before surgery, and then start him back on warfarin and clexane post surgery.

Derek was just under a GP for his APS before surgery. He is now sort of under a Rhumy who thinks that stopping the warfarin for a week, caused everything to happen BEFORE surgery. Which means that not covering him with Clexane when they stopped his Warfarin was a high cause of the CAPS, and of his now permanent ongoing issues with no Adrenal Glands.

For some reason some of these people seem to think that just because they have been to university to study a few books, they are GODS, and should never be questioned.

We even had a Rhumy that had never met Derek, or read his notes, tell our GP during a discussion, that our local Rhumy was wanting to have his INR too high, and that the policy of 1.8 being the trigger for Clexane was too high as well. She made recommendations to our GP without any authority, simply because she knew the GP personally.

Sadly, our GP listened, and is happy with a lower INR, and now I have to convince Derek that he should keep himself above 3.2, not be happy with 2.5-3 as his Dr seems happy with.

At least is not just an English issue I guess.


Congratulations on making such great progress with your pregnancy, you must be so excited now to meet your little one.

My own experience at my local hospital wss such that within the Haem team, one consultant was adamant that my history should be taken in to account and that I should be looked after by St T and post St T debacle, the other said there is not a consultant in this world that would agree to anti-coagulate me with my (recent) blood results!

Fortunately Prof Hughes disagreed and my local Rheumy recommended life long Warfarin. Even the same hospital can give you differing perspectives on the luck of the draw in who you see. :(


I am so glad you and your baby have the best person looking after you!

I wish you all luck!



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