Could this be Hughes?

I wondered if I could ask advice from people ‘in the know’ for their opinion before I go to my GP and ask for a test for Hughes out of the blue.

I have suffered various vague symptoms for a number of years but didn’t put them together until it was suggested that it may be Hughes.

In case there is hereditary link my mum suffers from Sjogrens. In a nutshell here are my symptoms:-

2 miscarriages at 8 & 10 weeks followed by two live births, both low birth weight and both born prematurely at 36 weeks.

Frequent headaches on and off for years but not severe migraine type.

Brain Fog – this is the one I find most difficult to deal with, a feeling of not really being there, can’t concentrate and my mind ‘wanders’.

Awful memory, have to write myself notes or even ask my kids to remind me of things, recently have started forgetting descriptive words of things I use everyday.

‘corned beef’ blotchy skin on arms and legs which is worse in cold weather although it never goes completely even when abroad in the sun.

Allergy to the sun – I have to take antihistamines before exposure to strong sunlight.

Gall Bladder problems? Although when I was scanned there were no gall stones but problem with pains in my right side are continuing.

I may be adding 2 & 2 and getting 5 so don’t want to ask my GP for a blood test, who may not take kindly to me ‘self diagnosing’. Sorry to have gone on a bit!.

5 Replies

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  • Dear PepperT

    From what you have described I think it is very pertinent to ask you GP to give you the blood test for Antiphospholipid (Hughes) Syndrome.

    Like you I had the memory and brain fog and right upper quadrant pain (gall bladder?).

    It would be wise to download the information on symptoms & appropriate blood tests from the HSF website, as not all GPs, sadly, are fully aware of them.

    Keep us informed on your progress, good luck and best wishes.

    Dave

  • Hi manofmendip just read your reply and Iam at present trying to find out what the severe pain in upper quadrant area (had gallbladder scan no gallstones) is dr tried me on lansoprazole which has not helped. Have you got any dx for pain.

    Sharon x

  • Hi there and welcome, the first thing I would say is you are right to check it out. Also be aware that Hughes Syndrome often appears with a trio of disease at some point, which are Sjogrens, and Thyroid problems and also APS (Hughes). Gall bladder problems often show up with thyroid issues, and another thing they need to check for is Lupus also, One way or another I am sure you will get to the bottom of it. Do let us know how you get on - Mary F x

  • Yes to everything said above and just to add two things. The three blood tests they do to check for Hughes Syndrome aPL, LA (Lupus AntiCoagulant) and AntiB2 Glycoprotein1- the LA blood test has nothing to do with the disease Lupus despite what the name implies. Having said that it may be useful given your sensitivities to the sun to ask to actually be tested for Lupus too. Some people that have APS can have Lupus too but not everyone does in fact most don't.

    So I would be asking for a full Rheumatoid and immunology blood screen as well as the three tests for Hughes. xx

  • Many Thanks for your advice, it has given me a bit of confidence to go to my GP and ask for a blood test. It is interesting to see Thyroid appear in your replies, my grandmother and mother both had thyroid problems and my mum eventually had a thyroidectomy, she also suffers with rheumatoid arthritis so unless I am mistaken I think I can see a pattern emerging here!. Many thanks again, I'll let you know how i get on.

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