A blog which I wrote, copied from Thyroid UK's patient forum: Thyroid UK, attended our Patient Day at St Thomas' last Wednesday!

Community blog Thyroid UK

Another useful Hughes Syndrome Patient's Day - with the useful attendance of Lyn Mynott from TUK

Last Wednesday I was at St Thomas' Hospital, London - l went along early to meet and greet old and new faces to our Patient Conference, which is an annual event for Hughes Syndrome Foundation. I was absolutely delighted that Lyn Mynott from Thyroid UK, was able to come along, as a vast array of people with Hughes Syndrome, go on to develop thyroid issues, including myself and many others I know. This sort of networking with charities is vital with our diseases. Autoimmune disease often has thryoid problems creeping in, and awareness needs to be raised as often as possible as so often these are not picked up until they are quite advanced. We had a great day, and I had many hilarious moments as I wandered around putting names to faces.

So a big thank to Lyn for taking the time out to come along to our annual event - and I shall certainly be off to the next TUK one if I am in good enough health. Professor Hughes intends to write an article about the prevalence of thyroid issues turning up in his clinic over the years with regard to Hughes Syndrome. This should appear in the news letter some time.

Mary F x

3 Replies

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  • Thanks for information, recently on Prof Hughes advice I was tested via NHS for thyroid. I have never been tested before and have Lupus and ApS. When I asked the nurse the results she said they were fine? Should I enquire further after looking at thyroid UK website I thought it is quite tricky to get a realistic reading. To be honest do not know much at all about thyroid illness and nor do I wish to add to my growing list. From the one blood test is it ok to leave it there or is it important to follow up? Any ideas? Thanks xxx

  • Hi there, read very carefully on symptoms to see if they fit, unfortunately the standard testing is not always accurate. Thyroid problems used to be diagnosed on clinical symptoms and the blood tests only part of the process, this often gets overlooked now. I went via a very well trained nutritionist with an interest in thyroid problems, and from them via a private testing labs which did detailed tests. There are a few people about who will guide you with this. Best of luck. Mary F x

  • A lot of my autoimmune problems started with my Thyroid which is now Hashimoto's. My recent very scary flare happened because the antibiotics that I took stopped my thyroid meds from working and that in turn put pressure on my adrenals and bang the affect was horrendous. So yes Thyroid is very important to get right especially if the antibodies are high. My GP had looked at my TSH results, said they were in the normal range and told me I'd did not need to see an Endocrinologist when the reality was that the more specialised tests that they do like FT3 and FT 4 tell a different story.

    So please make sure that not only do you get your thyroid checked but you ask them to do more in depth tests looking for antibodies which, with a history of APS is quite appropriate to ask for.

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