Source
r/AddisonsDisease•
linernotes

How do you find an endo that specializes in AI?

Medical Stuff

*Note: I’m in Ontario, Canada. *

I’m a type 1 diabetic so I already have an endocrinologist, but after my first appt with him I’ve decided I need a second opinion on my treatment. I had to remind him about stress dosing, ask for emergency injection supplies (which I didn’t get because he had to research how to prescribe it?), said I don’t need a medical ID bracelet, and barely let me ask any questions.

My challenge is finding an Endocrinologist who has a deep understanding of Addison’s Disease. It seems they’re all focused on Type 1 and Type 2 Diabetes, which is legit since it’s more common. But also are there resources to filter by specialty?

Posted Oct 1, 2019, 10:06 PM UTC

612
just_an_amber•

I know both NADF and ADSG maintain lists. It might cover Canada. It's worth checking into.

4
imjustjurking•

I'm pretty sure I've seen Canadians in the ADSHG

2
Alice1985ds•

This isn’t exactly what you’re looking for but it might be helpful

2
redryder25•

There are a lot of facebook groups for Addison’s. They have great suggestions for doctors. Where are you located?

2
linernotesOP•

I’m in Ottawa, but am willing to travel to Toronto.

2
SmileyMcGee27•

If you’re female, Women’s College Hospital has endos who are pretty well versed in Addison’s. Just note though, I’ve found ALL endocrinologists have much less awareness of Addison’s than diabetes or thyroid issues for example, its just the way it is because Addison’s is so rare they usually only have one patient in their lifetime with it. If you join the Canadian Addison’s Society group, the eastern ontario chapter could help point you to some good ones too.

Good on you for being an advocate for your health, we learn this the hard way sometimes 🙂

2
linernotesOP•

Ahh awesome. I’ll give them a call, and check out those groups!

It’s tough because I feel a weird loyalty to my endo since I’ve been with them for a while, but my last appt just made it crystal clear their lack of understanding of the disease. On the plus side they support me getting a second opinion which is a relief.

1
lilyofjudah•

This is so true! I tried to screen my first and asked if they had treated other patients with Addison's. They said yes but I'm pretty sure it was a lie. Two in a row basically gave me very outdated textbook advice and clearly had no real experience. My life is at stake, folks....

I had better luck at a teaching hospital.

1
artacct217•

In Montreal, most endos seem to have a decent understanding of Addison’s.

1
linernotesOP•

Oh interesting. I wonder how difficult it would be with inter-provincial healthcare.

1
maeK89•

Hey I just wanted to share that I live in Kingston and I have primary AI. If you find any info I’d love to know!

1
linernotesOP•

Will do!!

1