Sticky Blood-Hughes Syndrome Support
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Why do I feel like I've got to have a major clot before they'll treat me?

I've been off work now for 5 weeks. I probably should have stopped working a couple of months before that because I stopped being able to do my job about then. My brain sort of stopped working with me. In June I had an MRI that showed a number of leisions in my white matter and evidence of vasculitis in my brain. On the advice of my local rheumy I sent the images and report to St Thomas so they could be studied for my next appointment (last week). From August onwards my vision worsened, double and problems focusing. I was having weekly migraines, absences and episodes of memory loss when I would completely forget how to do something (like use a limb or count). It got so bad I went to my GP, he sent me for bloods and signed me off work . He felt that time away from public interviews and using a computer and rest may help.

My blood results came back showing abnormal clotting and an INR of 0.9, I was able to convince him to give me Clexane until my appointment at St Thomas.

At St Thomas I saw a different Doctor. The NeuroPsych referral that was supposed to have been done last year had not been done, they did not have copies of reports from my neurologist or my local rheumatologist and worst of all they had received and lost the disc containing the MRI images of my brain damage. They had the accompanying report and letter but not the disc.

The doctor did not seem impressed that my GP had given me clexane and told me that she did not believe that it would have made any difference to me yet as it does not work that fast when I told her that it had cleared my head and that without it I would not have been able to get to the appointment with her. I had been taking it for 4 days by then and I know that it had already made a massive difference to the way my head felt.

She sent me for 14 blood tests, said she would arrange for neurological testing, asked me to send another copy of my MRI and that she would see me in 3 months.

I asked about continuing the clexane, she just shrugged and said that she would call me in 10 days when she had the blood results as she couldn't advise me anything until then. But as my GP had given me clexane now I should carry on. It will be 10 days tomorrow.

So why do I feel like I have to have a major blood clot before I am taken seriously? I know what is wrong with me and I know what treatment I need. I know how much better I feel now that my blood is thinner but I want to be treated with a bit of respect and to discuss my treatment options.

I want to discuss the damage in my brain and know the consequences of it I don't deserve to feel like I am not ill enough because I was able to hold an intellegent conversation.

It took a lot to get to the hospital and a couple of days to recover and still I feel like I am not believed.

Rant over.......Thank you for reading

Love Sharon xxx

6 Replies

Aw luv u hun.tough ain it ive had 2 massive clots on my lungs bt no1 eva knws hw 2 treat curently on clexene n warfrin as inr below range.i knw clexene dnt work as wen i was pregnant i had major clots again in lungs legs n pelvis.take care x


Hi Sharon,

sorry to hear things not going well for you.

Had similar when went first time, then when bloods were in it changed, plus at next appointment all the paperwork i took and reports on other tests etc. had dvt, pe and many miscarriages. referred on to Hughes specialist and sorted.

But when I asked if could have higher range on inr, mine 2-3. So gp's aim for 2. The answer 'until you have an arterial clot you don't need a higher inr!!!' I don't want another bloomin clot thanks!! Two weeks ago inr was 3.8 and i felt great apart from this Damn chest infection which will not go.

I do hope you feeling better soon and that they get sorted.

Take care gentle hugs sheena xxxxxxx :-) :-) :-)


Hi Sharon, sorry you are having such a difficult and downright frustrating time, I am sure things will get sorted and be better for you, keep your latest blog as a print out, it could not be more clear in terms of the general picture and how you feel, a legitimate account of what is going on and the frustrations of things being made right for you as soon as possible! MF x


Well after reading your question, I thought "its not just me" APS has run in the family, bad consequence for my mother, and as my APS is bad I kept saying I need more than just Aspirin but I was not being taken seriously enough until I had the mini TIA one weekend in April. I had been taking Clexane and then whilst shopping my eyesight in left eye began to go, like a blind coming down and seeing grey, fortunately, we were not far away from the eye infirmary and lucky to find that it was not busy. The doctor on duty said it was to do with APS and contacted the Haem Ward and was advised to take Clopidogrel and also I had appt made to see consultant the following week. There was a lot of erring and he said he would have to speak to one of his colleagues and then 3 weeks later began Warfarin. I have noticed that when my INR falls low I start to have funny turns and then when it is higher than 3 I am okay despite nosebleeds. But the consultant said rather nose bleeds than TIA. I feel that they were not listening to my concerns until it was too late. I was in hospital 2 weeks ago for a fast and my INR went up to 8.9 and the nurses were worried and phoned the relevent department who are dealing with me only to be greeted with "never heard of her" Eventually put on Vit K and sent home, but I had a niggly feeling and emailed one of the consultants who was so surprised that the ward had not tried harder to get one of the haem consultants. I was told I should have had a INR after the Vit K and so he asked me to go into the Haem Ward on Sunday and it had gone down quite a bit, however my blood pressure plummeted too.

Currently have two INR tests a week, yesterdays is 3.3. The test I had done last week was lower measured on machine, yet higher when they sent the blood off.

Next week I am going to ST Thoms and hopefully things will be sorted out.

Roll on next Thurs.


Thank you for your support guys. As I feared, The doctor at St Thoms has stopped my Clexane. I guess I should be grateful for 4 migraine free weeks and 10 days without any eye pain, head pain, neuralgia, strange noises, visual disturbances and being able to follow a conversation.

Just can't stop crying...

Love sharon


Hi, i am concerned, that you are not been listened to. Who is your consultant? I feel you should write a letter to them at St Thomas's. It,s clear you are not well. I was diagnosed at Professor Hughes clinic in 2005. I had a battle with my GP, but had nothing but great care and understanding at St Thomas's. I have been back yearly and encountered one or two problems. Ask to see the consultant when you go next or speak to the nurses, at the unit. Don't be put off. It,s your body and you know how you feel. Good luck.


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