What else should I ask to be tested for?

Hi all, long time no posts.

I have been going through a period of intense fatigue and muscle pains. My GP has done a few routine tests, thyroid etc... which have come back ok but what I want to know is, is there anything APL related I should be asking to be tested for which could account for these symptoms.

I have been diagnosed APL positive for almost 10 years and just take aspirin daily as a control. My haemotologist signed me off their clinic last year.

6 Replies

  • Where are you from?


  • Berkshire - UK

  • Sjogrens Disease and Thyroid disorders can be prevalent with Hughes Syndrome/APS, glad to see the Thyroid has been looked at, however the tests are not brilliant for it and the parameters a bit narrow. Also Lupus can raise it's head. There is a list of specialists on the HSF charity website, some NHS and some private, if you are not satisfied, and some of us save up and go to London Bridge. I suggest if you are not totally happy that you persist with asking for more help. Many do very well on Plaquenil for fatigue, worth asking for, and perhaps a referral to a rheumatologist off the suggested list. MaryF

  • sorry to jump in another persons thread but have a question re link to specialists list.

    Mary do you know if there is a similar list for neurologists as my gp says she might refer me again and so far I have seen two,but I really didn,t hit it off with either of them

  • Phoenix, there are a number of autoimmune muscle diseases and because you have Hughes syndrome, you are at risk for other autoimmune conditions. Did your doctor order CPK and aldolase? These are basic muscle enzyme tests that are a good way to screen for the possibility of a muscle problem. Also, are you on a cholesterol medication? These are often prescribed in Hughes syndrome because they have beneficial effects on arteries (aside from their cholesterol-lowering effects), but the number one side effect is muscle toxicity.

  • Hi Salty

    I had a load more tests today; Lupus, glandular fever and coeliac as well as a wonderful glucose tolerance test (never been so bored in my life). Just got to wait a week or so for the results now and hope they find something because I cannot carry on like this.

    I spoke to my GP a couple of days ago and she admitted that it hadn't occurred to her that this could be anything to do with APS (better than the other GP I saw who said there was no increased stroke or heart attack risk associated with APS - clearly demonstrating to me that she knew nothing about it and was winging it). However this one has said that if this lot of tests and the ENT referral for possible sleep apnoea come back inconclusive then she will refer me back to Dr Shlebak at St Mary's Paddington. He's not on the list of APS specialists but he's the consultant haematologist I was referred to by Leslie Regan's clinic. I saw him once a year for 9 years but he signed me off last year. I always got the feeling he didn't really take me seriously but I could just be being paranoid.

    I'm so sick of feeling like this and I don't know what to do next.

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