British Thyroid Foundation's facebook post - Thyroid UK

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British Thyroid Foundation's facebook post

ajs100uk profile image
21 Replies

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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ajs100uk
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21 Replies
diogenes profile image
diogenesRemembering

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.

ajs100uk profile image
ajs100uk in reply to diogenes

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 :-)

SeasideSusie profile image
SeasideSusieRemembering

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.

ajs100uk profile image
ajs100uk in reply to SeasideSusie

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).

LH44 profile image
LH44

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-...

ajs100uk profile image
ajs100uk in reply to LH44

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

serenfach profile image
serenfach in reply to LH44

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!

ajs100uk profile image
ajs100uk in reply to serenfach

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 :-)

ajs100uk profile image
ajs100uk in reply to LH44

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!

Clutter profile image
Clutter

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.

ajs100uk profile image
ajs100uk

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.

SilverAvocado profile image
SilverAvocado

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.

helvella profile image
helvellaAdministratorThyroid UK in reply to SilverAvocado

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

They are very closely linked to each other.

SilverAvocado profile image
SilverAvocado in reply to helvella

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

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...

Marz profile image
Marz in reply to

Oooh well spotted Hidden 😴

in reply to Marz

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

ajs100uk profile image
ajs100uk in reply to

GGGGRRRRRR!!

ajs100uk profile image
ajs100uk

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

serenfach profile image
serenfach

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!

ajs100uk profile image
ajs100uk in reply to serenfach

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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