Hi! I just signed the petition "Endocrinol... - PBC Foundation

PBC Foundation

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Hi! I just signed the petition "Endocrinologists: Patients with Thyroid Dysfunction Demand Better Care" on Change.org. It's important.

GrittyReads profile image
5 Replies

Please support them too.

Cheers,

Gritty

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GrittyReads
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Yvi1960 profile image
Yvi1960

Hi GrittyReads are you able to forward the link to the petition? Just been on change.org and couldn't find it. I have under active thyroid, PBC overlap AIH and rhinitis so yeah I demand better care! X

GrittyReads profile image
GrittyReads in reply toYvi1960

Hi Yvi1960,

This seems to be the best I can do. Hope it helps. 'Thryroid Change' is the group name.

Cheers, Gritty

change.org/en-GB/petitions/...

Yvi1960 profile image
Yvi1960

Thanks, petition signed Yvi

Alley27 profile image
Alley27

Signed the petition.....I have hashimotos disease which is still not treated after 21 years. It took until 2012 to get an actual diagnosis. I also am aware there is a direct link between hashimotos disease and auto immune liver disease...I have an overlap of two; AIH/PBC. I am so sure in my heart and mind that if my hashis had been treated all those years ago I would not be in the position I am now.....I was diagnosed in Jan 2012 with hashimitos, and March 2012 with AIH/PBC...everything at once and all because our doctors are more interested in what the outdated blood tests say, than what the patient is going through.

GrittyReads profile image
GrittyReads

Hi, Thanks, and you have my complete sympathy.

Almost anyone coping with an autoimmune condition (or 'women's conditions' - see the Endometriosis site!!!) has a terrible struggle. I think it's because we're not trendy, there are not enough of us for the big Pharma companies to make gazillions out of any developed drug, and, quite possibly many of the conditions are just too complex for there ever to be a 'one pill cures all' solution. I don't have a thyroid condition (at risk of PBC), but I hover on the edge of hypo-, and having read the horror stories on the Thyroid UK site I think we should all pull together. I'm surprised more PBCers have not registered on here, as so many are at risk of hypo.

Also, what you say about not listening to the patient... I think they should all be thinking a lot more about stress, and the effect on the adrenals and the ultimate effect on the autoimmune condtion. It seems to me that most of the stress in the autoimmune community stems from the way we are dealt with.

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