Sticky Blood-Hughes Syndrome Support

I hate the NHS!

I'm so frustrated. I'm trying so hard for someone to say yes you have APS but no-one seems to listen.

They have taken bloods, scanned me, examined me and said there is nothing wrong. I told them about all of my symptoms and they just said really scarcastically 'Have you been googleing?'

No actually my step mum who is a nurse told me she thinks I have it and so did my GP who referred me to you ARSE!

Sorry about the rant. I can't afford to go private and they are refusing to refer me because they think they have covered all areas. Well if you thought I didn't have it why ask me to take asprin whilst trying for a baby and then to have heperin! It makes NO SENSE!!!!




7 Replies

Hi there, sorry about this, a familiar tale, same happened to me. Where are you located, others in your area may be able to help. I am afraid some doctors can get very huffy when they think the patient is suggesting something, especially if they have not kept up with modern medical reading. However you have some allies here, firstly your mum is a nurse and can calmly help you fight your case, also the GP, you must go and see them with your mother so that, perhaps you can be referred elsewhere or back to them after a letter has been written. Let us know where you are, so that we can help! Mary F x


sorry to hear about your frustration and run around you are having. I dont know any of your history but assume your symptoms are APS related and for you to have been taking aspirin and heparin during pregnancy they must of had good reason.

This is the hardest bit even with a diagnosis of 24yrs i still struggle to get listened too... like mary says many doctors dont keep updated and we have no current NICE guidelines that hospital doctors refer too...

Were you under a different team when pregnant? was the haematologist helpful could you perhaps go back to the ones that treated you during pregnancy and ask for a print out of your blood results? during pregnancy and as for guidance as no one is listening now... as you are symptomatic they cant use the saying its only during pregnancy you can have these antibodies..

it is a massive struggle but keep calm get your gp back on board and hopefully you will get the proper care and treatment soon...

kathy xx


Hi surely if they suggested for you to take asprin then heparin they must have some suspicion of something? With your mum backing you I'm sure you'll get some answers soon, keep strong.

I'm sure you have your own reasons for believing you have Hughes + would you be able to post your symptoms etc for us to view at all?

Many of us have had a huge struggle to be heard by the medical it's something we understand :(

Let us know how you get on,Sue x


I think ranting is great and you have every reason for yours.

I can't add much to what the others have said and agree with Suzy about why they put you on Heparin and aspirin.

Many of us have had an uphill struggle to be taken seriously so you are in the right place for support.

Let us know how you get on. x


Hi, I had the same we are 'sick' when pregnant and fine when not...I think not! I had to go get my old lab tests that were positive when I was pregnant and got the Doctor to admit I had APS then (during pregnancy)...asked what do I have now that I am not pregnant he said....? I don't know....I said "well I do"... HUGHES SYNDROME I brought in a list of Lab Tests that the Doctor needed to do plus an article how Doctors miss this Diagnosis even when they did the RIGHT tests because they can not understand the tests very well! I also showed him how my symptoms read like a grocery list, checked off the 18 of em'. Stay Strong! When I finally got more blood tests and a Brain scan I was taken very seriously...I have had six TIA's to date because no one was listening...hopefully there will be no more. This killed my Mom at 56 years old they ...they weren't listening.... I only wish I'd figured it out in time to help her.


I sometimes wonder if when Doctors take the hypocratic oath, they actually know and understand what it is they are saying? Perhaps it is just gobbledegook to them and they only understand and speak medical terminology!


Thank you for all your comments.

My symps are had a DVT when I was 16, had a miscarriage, headaches, eye problems, memory loss, confusion, stomach problems, it goes on.

I can't seem to get any sense our of doctors, they just don't seem to care. They said that because of my DVT and my pregnancy loss that when I am trying to conceive I should take aspirin on the second half of my cycle and then carry on with aspirin and heparin through out the pregnancy. They said I am already at an increased risk of having a DVT which is why.

I have my next appointment on the 11th to talk about what happens next.

What I don't understand is everyone on here has said they have spoken to a hemotologist but I'm seeing a gynocologist does that matter?



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