British Thyroid Foundation's facebook post

The following post from the British Thyroid Foundation popped up on my facebook:

"This week we celebrate International Thyroid Awareness Week 2017. Sometimes the signs and symptoms of thyroid disease are difficult to spot and the physical and psychological impact of a thyroid disorder is underestimated.

Please help us raise the profile of thyroid disease this week.

bit.ly/2rMmWoO

International Thyroid Awareness Week 2017 - British Thyroid Foundation

The British Thyroid Foundation is a UK charity dedicated to supporting people with thyroid disorders and helping their families and people around them to understand the condition.

BTF-THYROID.ORG"

I wrote this comment:

"I wish you would help the people that really need to understand about thyroid conditions - GPs and Endocrinologists. I mean ALL thyroid conditions and their consequences. I cannot convert T4 into the active hormone T3 and believe me this is a real condition. This has made me ill for years, it is not always reflected in thyroid function tests apart from having a low FT3 which is hardly ever tested by the NHS. I can get no NHS treatment and I am not the only one. It is so, SO WRONG and somebody should be standing up for people suffering from ALL thyroid conditions."

Why not,pop over and leave a comment too :-)

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25 Replies

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  • Sooner or later your concerns are going to be understood and acted on. They are real and have to be addressed . But so long as the "TSH tells you everything" in diagnosis and treatment we are not going to go forward. What is needed is a complete change of attitude about shoehorning patients into a decision based only on whether or not you are in the normal range. What's forgotten is that patient are individuals and have their own personal "set points". Just stating "normal" thus OK won't do any longer.

  • Totally agree. I have just decided to try and comment as such on any posts that appear on my facebook timeline that purport to help people "understand" thyroid conditions/or "support" people with thyroid conditions. Nobody is supporting me (apart from the lovely people on here, I am talking about NHS medical professionals/medicinal support really). I figure a lot of people see posts on facebook and the more people that read about this glaring injustice the better :-)

  • Well done ajs100uk I don't do Facebook so I'm afraid I can't add a comment, but I hope yours is taken seriously.

  • Thank you. Just so sick of seeing these posts, many looking for funds, shouting out that they help people with thyroid conditions/help people understand thyroid conditions. I would be jumpimg for joy if this were true but instead I get mad because it is not (my adrenal fatigue can't take it lol).

  • Here's the Daily Mirror story from yesterday with a comment from BTF talking about how you can simply treat thyroid. There's also a couple of comments like its nothing. Somewhere else for everyone to add their comments!! Here's the link...

    mirror.co.uk/3am/celebrity-...

  • Got to get to work, will check it out later :-)

  • I have left a polite comment. I had to delete what I first typed! I am wondering how many sufferers are out there who struggle daily, but are told by their GPs they are "fine" and "normal". If this article helps just one person to get better health, then it is worth it. I just hate the glib "take this and all your worries are over" response!

  • I am always having to delete what I first type lol! Well done for saying something! The more comments/stories that get 'out there' the better :-)

  • Interesting and luckily for her it seemed clear cut ie blood tests must have been abnormal.

    Honestly, some of the comments are so ill-informed. I tried to comment but needed to sign in and have forgotten my password. The reset email has not arrived. I will comment tomorrow if it arrives.

    Again, the more people that comment the better :-) Thank you for sharing!

  • ajs100uk,

    BTF deleted their page a while back because it had so many replies saying they weren't supporting patients who didn't do well on Levothyroxine.

  • BTF has not changed one iota since it first started way back 20 yrs ago

    i was one of their 1st coordinators and we were asked to send in ? from patients

    as soon as the ? of why am i not well on thyroxine hit the desk responses were

    "its somatoform disorder " and shortly after co ordinators were told someone more dedicated would be replacing them

    Needless to say they no longer have co ordinators

    Quite why they continue to insist TSH is God when it can never ever diagnose CENTRAL or TERTIARY hypothyroid is beyond me and since Levo can never treat thyroid hormone resistance or those unable to convert t4 to t3 or those with DIO2 gene their condemnation of Liothyronine is untenable

    As for their refusal to accept many hypothyroid especially after RAI or surgury only do well on NDT its a travesty

  • And who IS standing up to them? Someone, some group, some charity? Surely someone has in 20 years?!

    I just cant believe it, where have the campaigns been in 20 years?

    I am a bit 'slow to the party' having silently put up with being sick with an "unrecognised" condition. Now I have been diagnosed privately, I am mad as hell that my GP did not diagnose me 30 years ago, and now I know why! I just cant stay silent, I want to help change this injustice for me and all the others. Me, and thousands of others, need their voices heard, loud and clear, now!

    No-one should be knowingly left to suffer. IT IS WRONG.

  • Do you think thyroiduk and tpauk.com and a few others have not tried ...sadly the BTA is a bunch of ignorant old f"""s who must have financial interests in tsh test and levothyroxine and who will do anything to prevent their reputaion being tarnished

  • Are the BTA and BTF very similar? I'm too ill to reasearch all these groups and trying to get my head round it all.

  • BTA is for the endocrinologists - the BTF is for the peasants, sorry, patients.

    They are very closely linked to each other.

  • Thanks, Helvella! That is exactly what I needed to know.

  • BTA is British Thyroid Association which is the main group of Endos who refuse point blank to accept TSH or levo are in anyway perfect as they would claim

  • I am afraid I have no idea. If they have or have plans to do so it needs to be shouted louder :-)

  • ajs100uk In the BTF's 2015 Accounts, a sum of £18,000 in the form of sponsorship was given to them by AMCo Ltd.

    btf-thyroid.org/images/docu...

  • Precisely ....the very company gaining fortunes from both levo and especially T3 have the BTF in their pocket

  • Oooh well spotted cinnamon_girl 😴

  • Marz It's been mentioned on here before, it somehow stuck in my little memory!

  • GGGGRRRRRR!!

  • I noticed this at the end of the article - Consultant endocrinologist Dr Mark Vanderpump is president of the British Thyroid Association. He says:

    “Patients with an under-active thyroid are given levothyroxine. It is chemically identical to the hormone.”

    I intend to write to him and ask him to explain his ignorance! Unbelievable!

  • Good girl!

    I noticed he also said:

    “The thyroid controls metabolism, so when hormone levels are too low it tends to cause the systems in your body to stop or slow down."

    Is it not the actuve hormone T3 that ultimately controls metabolism? T3 that is conerted from T4 at a cellular level. T3 that every cell needs to work? Therefore, if the thyroid is producing the hormone T4 but the CONVERSION at a cellular level is not taking place, this is a major problem. It is what I have and it is what is being ignored and not treated.

    If I had the time, or when I get the time, I am thinking a letter to the journalist of the post, Sue Crawford, may be a good idea.

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