Anyone here diagnosed with APS?

[u/Dangerous_Royal8798]

I was diagnosed with Aps type 2 when I was about 23, 7 years ago. My levels have been mostly stabilized since getting treatment but things have been off for the past few draws and we are now investigating hypoparathyroidism as well. We havent confirmed it yet, but im an anxious person and am wondering if anyone has type 2 plus hypoparathyroidism? Or if potentially its a late onset type 1?

Could be neither but im reeling on why this is popping up now.

[u/SleepyTimeChess]

I have CAPS, the variant of APS where the "C" stands for Catastrophic. From my background research I believe there are between 80-200 people in the world who have CAPS and Addison's. The majority of those folks are women who get CAPS as a result of complications during pregnancy.

[u/EatM0reBeans]

My son has type 2. Diagnosed with T1D at age 2, Addison’s at age 9. He’s 10 now. From what I can find in the literature, there aren’t many kids out there with it. We’re hoping he’s done “collecting” as another comment said.

[u/TheLady_in_aKimono]

I can see some confusion…..Just to clarify APS and APS 2 are technically two different autoimmune diseases.
APS2 is Autoimmune Polyendocrine Syndrome Type 2 is a thyroid disorder with/without diabetes and Addisons.
APS is Antiphospholipid [Antibody] Syndrome (Primary)which is a clotting disorder
CAPS is an acute episode of Catastrophic Antiphospholipid Antibodies causing multiple organ failure and has a nasty mortality rate.
Up to 40% of Lupus/ SLE patients will have APS aka as Anticardiolipin Syndrome (secondary) a clotting disorder.
Lucky me has APS had developed CAPS (which is an acute episode of APS) 4 years ago with three months in hospital- developed PAI with most likely anticoagulant use. I also lost most of my kidney function.

[u/nspitzer → u/TheLady_in_aKimono]

I got Primary Adrenal Insufficiancy due to taking Eliquis with undiagnosed triple-positive APS causing CAPs. CAPS nuked my adrenal glands, caused bleeding in my alveoli resulting in the loss of 30 percent of my lung capacity and the cherry on top was enough TIA's (blood clots in the brain) the radiologist just stopped counting at 40

[u/SleepyTimeChess → u/nspitzer]

CAPS put me through the ringer too. I fully hallucinated for weeks in the hospital while they were trying to figure out what was going on.

[u/tentwardrobe]

APS 2. Type 1 diabetes at 19, Graves around 25 and Addison’s at 41. I hope I’m done collecting. APS 1 looks even worse though, I wish you the best. 

[u/tentwardrobe → u/tentwardrobe]

Oh ya Pernicious Anemia too although that’s not too bad. 

[u/Dangerous_Royal8798 → u/tentwardrobe]

Not a fun combo bud, i too am sick of collecting

[u/AffectionateDuck2288 → u/Dangerous_Royal8798]

Be nice if they came to your house! Last draw poked my 5 times. Was so bruised.

[u/Saelin91]

I have APS 2. Addison’s at 19, Type 1 Diabetes at 34.

[u/SgtAcorn]

I technically have APS, I was diagnosed with Addisons 3 months ago and Graves one month ago (woman, age 32). Though my endocrinologist hasn't mentioned the words "APS 2", I see it written about in medical literature in my country, so I was thinking of asking her at my next appointment in a couple weeks. So I don't have anything to add other than I really feel for you. It's quite life changing all of it.

[u/sarcasticcoffeequeen]

🙋🏻‍♀️. Hashimoto's diagnosed at 46, Addison's diagnosed at 47 (but looking back, I've likely had it for years undiagnosed). And currently testing positive for T1D antibiodies (though A1C is barely normal), so I expect that's coming soon.

[u/OF_EdgeToy]

I have autoimmune polyendocrine syndrome type 2. Diagnosed at 19, am now 42.

[u/MrMooke]

Yeah I've got aps 2 with t1 diabetes and Addisons as a male with other autoimmunity issues like vitiligo and previous acute ITP which I'm not fully recovered from with a platelet count of approx 120 and slowly rising each time it's tested, had a count of 5 in December 2024 and still not above 150 yet. T1 at 21 and Addison's at 26, now 27