Send your story here!

[Katepots]

The BTF say they have had little feedback from patients so have been unable to formulate any response to the NHS survey. Their email address for all your stories is

[e-mail]

Let's bombard them and get heard!

Get writing peeps!!

[Clutter]

Katepots,

BTF are unequivocally pro-Levothyroxine and anti-T3 and anti-NDT. I'd prefer they do not respond to the consultation, I can't see it will be favourable to those of us prescribed T3.

[Katepots in reply to Clutter]

We need to change their minds. If hundreds upon hundreds bombard with personal stories how can they keep ignoring us?

[Clutter in reply to Katepots]

Katepots,

They've managed to do so for years. They're just a mouthpiece for the BTA anyway.

[haggisplant in reply to Clutter]

Hi I feel I need to let people know that when I phoned them a few years ago the women who was working in the office was on t3 and said a few of the other office workers/ volunteers were too.

How many of you recieve their newsletters? I have seen articles on t3 in there before, including research into the possibility of development of long life t3 and then combo t3/4 pill.

I also met a woman at one of their talks who used to run one of the groups who was only on t3.

I’m not entirely sure they’re as bad as made out - not the impression I’ve been given in the past.

[haggisplant in reply to haggisplant]

Also, I’m really confused. The BTA have unequivocally stated that t3 should NOT be withdrawn if the patient has been stable and well on it. So the BTF will not be “anti t3.”

This appears to be a gp issue (as usual) and a financial issue too.

They actively encourage letters - I spoke to them recently about (yet another) issue with thyroid pregnancy care and they urged me to write in as the more letters they recieve, the more they can show to their medical advisors.

I know few here will be members? If you are a member you will see how much work they do do from their newsletters, and info about things like t3 etc.

They do work on members writing to them. A two way correspondence. I feel it is crass to attack them in the way I’ve seen on their fb website, saying they won’t donate when the BTF have done so much for TED, Thyroid conditions in children, thyroid cancer research and gp/ mw pregnancy campaigns.

IMO, join, donate, become active members and seek to change the system rather than hunt them down. They want the same thing.

[Katepots in reply to haggisplant]

That's good to hear. The complaints on the website have now persuaded them to reply to the Consultation so no bad thing!

It might also make ghem support us a bit more if they realise we are not going to keep quiet any more.

[humanbean]

People have been writing into the BTF facebook page and complaining about them not replying to the T3 consultation. The BTF response has been to delete the messages and block the authors.

See this post here :

healthunlocked.com/thyroidu...

[Katepots]

Yes it's been great! They've issued an apology!

[marigold22]

I will send them my story. They might fall off their chairs Here's hoping

[marigold22 in reply to marigold22]

Sent. It was traumatic writing it all out once again.

[Katepots in reply to marigold22]

I'm sorry. There are some awful stories. We have so many on ITT that we have sent to the NHS Consultation.

I'm specifically looking for pregnancy,miscarriage and infertility stories for research I'm doing now.

[marigold22 in reply to Katepots]

Would you like a copy of the story I sent to BTF to send to the NHS Consultation? It doesn't include pregnancy, miscarriage & infertility though. Or I could send it myself to the NHS Consultation. Didn't know we were sending our stories to them.

[Katepots in reply to marigold22]

Yes please, will also help with NICE Review .

[e-mail]

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