Sticky Blood-Hughes Syndrome Support
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So often THYROID tests do not show up the full clinical picture

Hi, I know I bang on about Thyroid issues, but they are prevalent with Hughes Syndrome/APS. Here is an article from the Daily Mail, relevant to us as readers on this particular forum, also below the article I add a petition being run by Thyroid UK, who have Dr Chris Steele as their patron.

Better tests are needed, clinical symptoms need to be taken into account with history taking, also a choice of treatments, some patients do not do so well on the synthetic versions and get some level of health back by using the natural desiccated preparations.

Please sign and pass on if you can, it would help.


3 Replies

This is very helpful for me as i am seeing my GP tomorrow about this very issue. Thanks Mary


People will feel very very unwell with a host of symptoms with untreated Thyroid problems, mine crept up on me, it is quite insidious Hypo Thyroidism in my case. MaryF


I also have Thyroid Disease and have suffered for years with issues because of the wrong thyroxin dosage. It is not only that you cant get the right detailed blood tests that actually tell you what is going on with the Thyroid but even if you do manage that most GP's are scared of giving you the right dose.

For instance, FT4 should be high in the range to show that you are on the correct dose. My results have shown me to be not only at the top of the range but on one test actually over the top. I kept this from my GP because I knew they would reduce my dose but I knew I needed the dose I was on and just needed to alternate the dose some days of the week. Over the course of about a year many of my symptoms have started to go away, hot sweats in the evenings only, very dry skin, palpitations at certain times, things that I knew were down to my dose and Im suddenly thinking "I havnt had that for awhile". I know I would suit T3 or a natural thyroid better and my Endocrinologist agrees, however his hands are tied about prescribing it because he knows my GP will never agree. So for now I have to go on playing with things myself and getting my own tests done which is not what we expect from the NHS.

Thyroid treatment in this and other countries is a complete mess and a national scandal, its really time it changed. It also affects every other system in your body so if that isnt treated correctly all the other things you are being treated for are likely not to do well either.

A good reason to support the petition!


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