A house, a student loan, and bankruptcy, most likely…
I have Polyglandular Autoimmune Syndrome that long.
I don’t really believe that but it seems to meet the definition?
Since there is some apparent confusion about this, I thought I’d put my training and research skills to use here Please see the following as my interpretation of reading up on PAS/APS: it is not intended as medical advice, and is just research that may (or may not) be useful to other PWDs.
So, you definitely have signs and symptoms of PAS (more commonly Autoimmune Polyendocrine Syndrome or APS), but that doesn’t mean you have it. On the other hand, your doctors should definitely be monitoring you for development of Addison’s. At it’s simplest, APS is just autoimmune disorders of more than one endocrine glandular system. But “true” APS is genetic in basis (we’re all used to this at this point with T1 haha), has a different genetic basis than “typical” DM T1a, and like DM T1a isn’t entirely understood.
tl;dr: without expensive genetic tests, you can’t really receive a differential test of APS Type 1; without expensive genetic tests or development of Addison’s disease, you can’t really receive a susceptibility test of APS Type 2; since you’re still alive, you almost certainly don’t have IPEX or APS Type 3.
So, it probably depends on what type of PAS (or APS, terminology is confusing) you’re talking about. There are two “Types” of APS, and the general focus has been on the adrenal cortex (initially researched by Addison, and hence “Addison’s disease”). I suspect if you had been diagnosed as T1 and with Addison’s, someone would have diagnosed you with APS. However, you’re already doing at least half of what is normal after being diagnosed with APS: treating the multiple failures of endocrine glands (thyroid and beta cells in your case). The second part of APS for most people is regular monitoring for other endocrine gland failure: if your doctor(s) are monitoring for Addison’s (which they should be), then you’re getting the full treatment even if not given the diagnosis officially.
IN short, if you have autoimmune disorders of more than one endocrine gland, then you have symptoms of either Type 1 or 2 APS. That you survived childhood likely means you don’t have IPEX (a very rare, X-linked APS that only males can manifest and is usually fatal). They can do genetic testing to determine whether you do have T1 APS. They can do genetic testing to determine if you are susceptible to T2 APS. Having more than one autoimmune glandular disorder means you are at high risk of having T1 or T2 APS, and since Addison’s can be absolutely devastating (c.f. the OP’s story), it’s really important to monitor.
Although I can’t find any “standard procedures” due to the extreme rarity of actual APS (rather than just being unlucky enough to have more than one autoimmune disorder simultaneously), it seems to me that any diabetic that is also diagnosed with another autoimmune endocrine disorder should absolutely talk to their doctors about APS and regular antibody testing for Addison’s, Hashimoto’s, Grave’s, and autoimmune Aenemia (at the least).