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Thread: What do you think about the state of awareness?

  
  1. #1
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    What do you think about the state of awareness?

    What do you think about the state of awareness about thyroid disease? I think it's ludicrous.

    I was diagnosed last year, aged 17, hypothyroid, and I'm sure there are many of you who, like me, should've been diagnosed years earlier, but wasn't, because thyroid disease, unless you have it, simply isn't something which people think about. Its symptoms are so common that they are put down to "just you" or to other things. People deal with the symptoms as they come, in the most obvious way, but cannot put the whole picture together to suggest to you: "why don't you have a blood test?" And if people are used to the way you are and cannot pinpoint a change then why should they question you?

    In May of this year, as I'm sure you know, there was the first ever Thyroid Awareness Week. Great. Brilliant, in fact!

    Or not: so far as I could tell, the media didnít refer to it. I found out about it towards the end of the week. And where did I find out about it? Thyroid-related sites, ones like this. You have to know about thyroid disease to find out about it. This is not right. We shouldn't have to search the word "thyroid" on search engines and social networking sites to find information, and it shouldn't be that no one knows about it until they have it themselves. For such a common condition which is often mis/undiagnosed, this is ludicrous and for this reason, to attempt to target the lack of thyroid awareness using the simple device that is my keyboard, I have created a thyroid blog: http://thyroidlife.blogspot.com/- The Thyroid: Small But Mighty.

    I apologise for this being quite a long post !
    I am interested to hear what other people have to say about the state of awareness in the UK as well as in other countries - how long was it do you think before you were diagnosed? Had you heard anything about the thyroid and its importance beforehand?

    There is a post which I have also put on my thyroidhelp blog, referring to a list of videos I pasted from YouTube - all relating to the thyroid. Most of these videos were US news reports or study guides (so if you're looking for videos please see that) - not UK. Interesting?


    Edited title to fit on twitter Ric

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    Re: What do you think about the state of awareness? Blog link.

    Hi SmallButMighty

    First thanks for posting the link to your blog. It look quite interesting Hope people can benefit from that.

    One thing which you have obviously ignored is that a lot of people including myself didnt bother reading in details until the very last minute when life got in serious crisis. Natually we are careless so even when provided with the information, blogs or lengthy articles, we tend to read a few lines and assume we dont have it, until we are hit with it.

    This is of course my case, I just wish that I had paid more attention to all those sites and blogs etc and could have been in better boat today.

    Dont forget that blood tests are necessary to have a proper treatment specially in the UK and Im sure else where as well otherwise doctors wouldnt treat you. You also need blood test to confirm that this is surely thyroid and nothing else and some other hormones may overlap the symptoms.

    Sites like this and others are just an effort to increase the awareness, nothing more than that. It's not only the existing people who are benefiting by sharing knowledge and experiences but in my opinion, newer patients could benefit more by reading all this.

    We have a number of blogs in the UK, Ric's being the most famous one as he has done a lot of videos as well, I am sure he is quite recognised person now in this business :d

    Some people are naturally shy and others dont want to disclose their state so you can't blame them either but I totally agree with you that this shouldnt stop us creating informative sites and sharing our knowledge and experiences with others.

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    Re: What do you think about the state of awareness? Blog link.

    Hi Sid,

    for your reply - it's great to hear some feedback

    You are right about people ignoring it and I completely agree with you, but, speaking from a personal experience, I hadn't even heard of the thyroid and its importance, or any of the diseases, and neither had anyone I knew. People who knew those that I knew may well of had the disease, but like you say, it isn't spoken about - and that is of course fine. Still, I think that a simple poster or video, news clip or anything, such as the US news clips that I've found on YouTube, saying "could it be your thyroid" would do a great lot of good even if people don't have any of the symptoms as it would help them to pay attention. You are right that people don't tend to read articles etc about something that has nothing to do with them and doesn't interest them, and in that case my blog doesn't do much good, but a short and snappy video on the news or something else, which is perhaps what will eventually happen, I think, will do some good. Although I do agree with you on the fact that we don't ask until it's serious - it's part of life to just put your head down and get on with it - but when it is serious, how do you know that you are asking for right thing? We may list all the symptoms but not the few most important ones which would ring warning bells in a doctor's head; we don't ask because we think it's just us and not important - but if we knew that it was important, then maybe we would ask. I hope this makes sense

    The blood tests, yes, of course - but if people are aware enough that, for example, they shouldn't feel tired all the time, then they will be able to ask for one. Yes the confirmation is important, but knowing about the disease and its symptoms enough that we can confirm to ourselves that something is wrong, will help us to go to the doctor's feeling totally not stupid in asking for a blood test.

    As I'm finding some good blogs related to thyroid disease etc, if they are on Google I am following them, and if they are not google I am linking to them; and if I really like them then I am doing both I think I have seen Ric's but I'm not sure - could you send me a link?

    again for your feedback, it's really interesting and useful. I hope all of this makes sense and is okay

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    Re: What do you think about the state of awareness? Blog link.

    I know a few people who are hyperthyroid and they have been told they are via their GPs but they take no interest as according to them they are *functioning* alright.

    It's very common, when the word "hormones" come in, people get scared and back off. It is true as well that you dont want to play with your hormones as upsetting one will affect others and it takes a lot of time to get the balance right. I agree with those people as I was one of them like I said, till I felt the crisis. You talk about hormone, you loose interest of the person as they think now he is talking something he doesnt know!

    Even if you make a video or a link explaining thyroid etc, it still wont interest people as these people dont realise how important thyroid gland is. Infact, if someone is very healthy or sick, I would surely credit or blame it's thyroid first of all.

    I am not sure where we are going to go with this but all you can do is spread the word, not more than that.

    http://thyroidguy.blogspot.com/ <<<<<---- Ric's Blog

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    Re: What do you think about the state of awareness?

    Hi Sid,

    again for your post - it is really useful to hear this, and seems to me to be quite an interesting discussion

    I accept that some people will take no interest, either because they feel they are functioning fine or because they are scared or just uninterested, and I think that people will define how well or unwell they are according to their own categories, and, I don't mean to sound as if I know what I'm talking about here because I'm hypo and not hyper but perhaps to hyperthyroid people the idea of having an increased metabolism, increased energy, etc, if they do not notice or do not have the nasty symptoms, as well as having to take pills to do this, puts them off entirely. I'm sorry if this sounds too assuming.

    Your point about spreading the word being all I can do is actually fine. Spreading the word is exactly what I want to do, so long as it is, like you say, about the importance of the thyroid gland in everyday life, and the symptoms therefore which are related to an underactive or overactive thyroid. I can see how making a video myself wouldn't make others particularly interested - except, perhaps, amongst my own friend circle (which is a very positive start in raising awareness ) but if it were to be that there was an official news report - and this may seem a long-shot and a bit of a boring fantasy, but if there were, I think that this would gain the views it needs. A poster, in particular, in the GP surgery for example, saying "could it be your thyroid" and listing, in simple bullet-points, symptoms, explanations, etc, would catch eyes and I think people would say "oh, really? I didn't even know that existed" or "I didn't know those symptoms were anything to worry about."

    I'm not sure how well I'm responding to your points or if I am just blabbing on, saying the same things (I hope not - sorry if I am ) but I think that there is more of a discussion in the need to spread awareness and how that should be done, than simply that it cannot be done.

    for the link to Ric's blog - I have already seen it and linked to it but did forget his name

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    Re: What do you think about the state of awareness?

    you forgot my name???????? :d

    Just wanted to say I agree with everything your saying and take your Point of view on Thyroid disease in general!

    to the site, its good to have you on board!!

    I hope you learn enough to make your recovery quick and stress free!

    Anything else ask away!!!
    I'm not an expert. I'm here to share my Thyroid journey and tell you all my experience of Thyroid disease.
    If you want to chat, please dont hesitate to contact me, I will help where I can!!

    http://www.twitter.com/thyroidhelp

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    Re: What do you think about the state of awareness?

    Ric! Haha that's embarrassing!

    Sorry My memory and names: not a good match.

    Also I'm really pleased I've clicked my way into the site, it's really useful and a great way to share experiences etc

 

 

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