Examining the Diagnosis and Treatment Experiences of People Living With Autoimmune Gastritis and Pernicious Anemia

[helvella]

Have posted this over on the Pernicious Anaemia Society forum.

However, it obviously is of significance to many here and the "patient forums" bit might be of general, widespread interest.

I'm not re-posting here so that any comments can (hopefully) stay together on my PAS forum post (or, if anyone else has posted it, on their posts).

Examining the Diagnosis and Treatment Experiences of People Living With Autoimmune Gastritis and Pernicious Anemia

Publication date - yesterday.

I haven't read it all but it looked to be relevant and potentially of interest. And is open access.

Note that it specifically discusses patient disempowerment and patient forums.

healthunlocked.com/pasoc/po...

[tattybogle]

Their search for autoimmune gastritis forums seemed to find the HU numbers quite impressive.

"Healthunlocked, the social platform used by the Pernicious Anaemia Society (PAS), contained nearly 27 000 members and almost 20 000 posts"

Wonder what anybody interested the patient experiences of treatment of thyroid conditions would make of our 129,312 members • 152,067 posts.

you really wouldn't have to change too many words for that report to relate equally well to thyroid treatment .

Nice to see so many direct qoutes for forum members.

i was expecting them to be giving warnings about 'expert patients' on forums being potentially dangerous , but overall it seems they are actually quite impressed with what goes on:

"At the far end of the AIG/PA disempowerment spectrum sit the patient experts and community leaders. The patient expert is usually a veteran of the AIG/PA journey, who has studied the literature extensively and shares anecdotes and learnings for others’ benefit. Given the widespread lack of awareness of AIG/PA they become important leaders; people consult them for advice rather than seek medical help. Patient experts help newer members with improved health literacy and self-efficacy by pushing them to educate themselves and their doctors about AIG/PA. Using such experts as “consumer engagement consultants” (39) in the development of patient-centered guidelines might provide experiential input often missed by researchers and clinicians".

[helvella Administrator Thyroid UK in reply to tattybogle]

Although we are very fortunate in having the direct support of diogenes it is a pity that contact between endos, GPs and us doesn't really exist.

Quite sure there are some endos and others who read here, at least some of the time.

It's obvious that individual medics can't get too involved here. But I can imagine there could be some way of establishing more and better contact. Bi-directionally.

[tattybogle in reply to helvella]

i REALLY wish they would read it . and read it OFTEN .

obviously 'actually getting involved' would be fraught with issues , and not a good idea , but if they just read it..... the information/ experience / resource etc contained here is HUGE. it would benefit them and us to have them more aware of what we know about how to treat ourselves .

But members (including me ) are calling them idiots so often, maybe any decent ones who ARE interested in reading get the hump and go away again before they learn much.

But how do we get the interested ones to continue to read without them being put off off by "trigger happy GP bashing" ? ....i ask myself this question often ... and then .... the next post pops up with one of their colleagues saying TSH 6.5 is "normal no action" on Levo , and i think well now you've asked for it ...

[helvella Administrator Thyroid UK in reply to tattybogle]

I simply do not know.

I am hoping that there has been some recognition of these issues in recent words from NICE. Where they seem to have accepted a disconnect between patients and NICE guidance.

NICE could offer some sort of forum for discussing issues - across GPs, endos, pharmacy people, labs, etc. Some of the issue are so simple and potentially fairly straightforward to address.

For example, I put in effort to my thyroid hormone medicines document. While we do have access to PILs, etc., there is no simple way of asking "What levothyroxine tablets do not contain lactose?" - and what dosages can be obtained!

[tattybogle in reply to helvella]

i know ... lets use all those otherwise redundant CBT therapists (that are hanging around trying to get endocrinology dept funding) to some better use .

.They can mediate'/ referee , like a sort of 'couples therapy'...

Endo's have to listen to us and repeat back what they understood our point of view to be ... then we swap over. No 'name calling' allowed.

[Tythrop in reply to tattybogle]

Like the concept of a Disempowerment Spectrum .🤣Shall we invent a " range" of experience like the 12- 22 for t4

[tattybogle in reply to Tythrop]

good idea then we could start asking for it to be tested as part of a full TFT .....