Sticky Blood-Hughes Syndrome Support

My trip to London :-)

Firstly i would like to thank all that steered me in the right direction, if it wasn't for stumbling across this site i wouldn't have received a firm diagnosis.

What a lovely compassionate gentle man Prof Hughes is, not only did he show great interest in my case he listened to what i had to say.

He tells me i am classic of what he referred to as the patient of the month ! He diagnosed

Together with my thyroid issues i now need a bit of fine tuning he told me.

I am now awaiting results of a DNA test taken today, results will be given on Friday together with a follow up appointment.

I have come out of the consulting room feeling as if i have achieved something today.

Thank you all so very much as i can honestly say i had given up hope, i can only say to fellow suffer's is dont give up. Jillymo xx

15 Replies

I never doubted that you had it, and with your Thyroid issues treated alongside your Hughes/APS you will find your head becomes a little clearer, well done on your own unstinting efforts to push forward. It is lovely to get feedback. MaryF


It is the head issues & lethargy i find so frustrating, my thyroid is in a mess.

The Prof spoke of a site with a patient of the month, would you know what he was referring to ?

Yourself, Lynn & Dave have been a great help to me, i cant thank you all enough........i suppose the next thing to do is read up on Aps and how best to manage it, if my head will allow me to do so. Many thanks Mary x


Professor Hughes writes in his blog every month about a patient of the month, all his blogs are on here loaded on as I receive them, and also they are on the Hughes Syndrome Foundation website. You will get a lot better with the correct medication.



Your words are music to my ears, i do hope so Mary. x


Well done Jill.

Dave x


Yes Dave i could jump with joy just at having an answer after all this time, years & years of hospital visits i have endured often coming away in tears.

The other Prof we see told me i was on blood thinners just as a precaution there was no mention of Aps or a firm diagnosis of sjogrens.

I'm aware they are not nice illnesses but now i know what i am dealing with.

:-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) Ho ho ho Merry Christmas.

Now i can tell all those bolshie consultants that implied it was all in my head

I TOLD YOU SO xxxxxxxxxx


You can indeed.

Dave x


We all feel this mixture of huge relief and anger when we get our dx. Im not sure what some Doctors expect us to do, flop on the floor and and cry hysterically! When we have been through what most of us have and thought that we were going mad, to have somebody take us seriously and actually confirm something we have long since suspected is a relief not bad news as some feel it will be. Id much rather know what Im up against as Im sure we all would and in the end we make better co-operative and informed patients who will cost less to this awful failing health system of ours. Well done for sticking with it and as you say now you just have to learn what you can - I learn new stuff every day and it all helps manage how I cope when new things come out of nowhere.

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My emotions are all over the place Lynn with as you rightly say anger and relief, years of pent up frustration has been released.

I wont to scream i told you so why didn't you listen to me, i was so bloody desperate.

Once i get over the tears & get on the correct medication i shall be able to take in more knowledge of this condition, my head is all over the place at the mo.

It was only last month i saw a Prof in Bath i challenged him as to why i was on blood thinner's he replied it was just a precaution.........yet he had the positive results of Aps in front of him.

I had no choice other than to stick with it not only for my own well being but for my son's.

This illness is a real challenge to say the least, i now pray for a little bit of recovery with the help of Professor Hughes and what he calls his fine tuning.

Slowly but surely i will get there then perhaps i can help others as you have helped me.

I can do nothing more than say a very warm but wet with tears thank you. x

P.s hows the gout ?

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Didn´t I say that you should have a wonderful day when seeing Prof Hughes.........? It sounds like you had it. So happy for you.


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Thank you Kirsten........It was nice to get results at last. x


So many of us can relate to your struggle toward a diagnosis, and then rejoice with you, in echo of our own joy, with --finally! -- a diagnosis. Which is NOT to say that we "enjoy" being sick, but just like every other human being, we do want acceptance and validation!

Well done!

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It is most certainly not something to rejoice about Gina, but once we now what we are dealing with it somehow makes it easier to accept.

Did you feel this overwhelming relief when you were diagnosed together with anger for all the years of suffering........mine were many ?

Jillymo x


Yes! I certainly did feel a combination of anger and relief! Anger accentuated by; 1, my original GP's office had been throwing away the positive blood work coming in from tests various ER docs and specialists had ordered; and 2, having so many medical professionals dismiss me as an attention-seeking nut job who was obviously faking symptoms.

(Because, well, gee -- if a patient presents with symptoms we don't understand, it must be because the patient is either crazy or looking for a reason to sue us! Don't ya think?)


Hi Gina,

I have suffered the same experience over & over again, i was aware something was wrong in my teen's, i'm now 63.

In the early years many of these illnesses had not been discovered, i can appreciate that.

A lot of it is down to lack of knowledge of this type of illness, so rather than admit they dont know they push you away's all in your head or your depressed, i could have had many anti- depressants had i have chosen.

I was referred to by one consultant as a waste of time & hospital money........I found this written in my hospital notes, it was no wonder nobody was taking me seriously. I took him to tribunal & one my case, in hind site i should have sued the swine. :-) He was my endocrinologist & rather arrogant in the consulting room with female patients.

I found the lab was refusing to do my blood the test's, they would just kick them out, as you say it is crazy. It is us that should sue them for damned negligence.

My son had what is called a synacthen test done months ago, because he was 'very' poorly he could not attend his appointment.

His wife phoned the department to inform them he would not be able to attend so now they have removed him from the clinic !

He has now got to go back to his Gp to be referred back to them, what ever is happening within the NHS.

I feel not only angry but bitter for the way i have been treated.....or not treated more to the point. Grrrrrr

Jillymo xx


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