Sticky Blood-Hughes Syndrome Support
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Do I have Hughes? Who do I ask to get tested?

I had blinding headaches as a teen, these have returned with vengeance in the last three years. Also been diagnosed with Coeliac disease within this time. I am left with balance problems, dizzy spells, extreme tiredness, severe depression, panic attacks and a weird kind of shuddering, like what you see when a cuttlefish changes colour if that makes sense. Please help soo fed up. Me is a a woman I had a miscaridge too..

4 Replies

Hello there and welcome to our friendly site. Prof Hughes always talks about Coeliac Disease, Thyroid Antibodies, Sjogrens Syndrome as being all linked and certainly the symptoms you describe fit in well but they could also be due to something else.

Therefore it is important that you talk to your GP in the first instance and ask for the blood tests to be done which are quick and cheap. If the GP will not do them you could ask to be referred to your local Hospital haematologist Dept where they can run the tests.

Merry Christmas to you and please let us know how you get on. x


Hi hon

Welcome and glad you found us! Sorry to hear of the health problems you've been having, as APsnotfab says, gp is first port of call, your symptoms do sound very familiar to lots of us on here!

Do ask, and let us know hon, feel free to ask away on here, we're a friendly bunch who will help if we can!

Take care gentle hugs love Sheena xxxx :-) :-) :-)


Hi there and welcome. You may have this, but your first port of call is the GP, there are also many medical papers available on the Hughes Syndrome Foundation website to read, and to print out for your GP. There is knowledge of this condition with the hospital at Leeds, so they should be happy to refer you if suspicious of your symptoms. Please do keep us posted and let us know. Mary F x


As the others have so rightly said you have to go to the GP. The symptoms sound like so many suffered by us but then other things could cause them too. Unfortunately you cannot make any progress without first seeing a GP for blood tests. You could go armed with information from the Hughes foundation website regarding the correct blood tests needed just in case your GP des not know about Hughes.

Good luck, let us know how you get on.