- Messages
- 397
- Type of diabetes
- LADA
- Treatment type
- Insulin
Morning all.
Just got back from my DSN checkup and I'm growing increasingly upset about the fact I was lied to on my diagnosis. I got my official diagnosis of LADA on December 16 2014 after spending a few months being misdiagnosed as T2. I was told I tested positive for antibodies and had decreased insulin production. I never got a print-out of the tests, I just trusted what I was told.
Today, I requested print-outs for my own administration and lo and behold - I tested GAD negative. I don't even know how to process this. I tested low on C-peptide on diagnosis (1.08, the normal value is 2.35 or higher) and I know that this is ultimately more important than the GAD tests, but I'm kind of struggling with my diagnosis validation here.
They also never bothered to test me further for ZnT8 and IA2 markers, which can be present even if the GAD test is negative. I don't know how much this matters, but it just feels like they dropped the ball on me here. They COULD have been more thorough, they COULD have communicated better, but they didn't. I inquired about doing a new C-peptide and they deemed it unnecessary - if I want another test done, I have to pay out of pocket for it, which I can't afford right now.
I think this is hitting me hard because I already run into the issue of not having LADA recognized by a lot of people, including healthcare professionals. I spent a long time feeling backed up by test results that I now know are at least 50% false. I know based on my diabetes progression, insulin dependence and initial C-peptide results that it's pretty clear I fit the LADA profile, and I know only 75% of T1 and LADA even test positive for GAD in the first place, but now it just feels like I'm a liar somehow.
It probably shouldn't affect me this much, but I feel like my diabetes is incredibly invalidated because they let me believe something was true when it wasn't? I can't even right now.
Just got back from my DSN checkup and I'm growing increasingly upset about the fact I was lied to on my diagnosis. I got my official diagnosis of LADA on December 16 2014 after spending a few months being misdiagnosed as T2. I was told I tested positive for antibodies and had decreased insulin production. I never got a print-out of the tests, I just trusted what I was told.
Today, I requested print-outs for my own administration and lo and behold - I tested GAD negative. I don't even know how to process this. I tested low on C-peptide on diagnosis (1.08, the normal value is 2.35 or higher) and I know that this is ultimately more important than the GAD tests, but I'm kind of struggling with my diagnosis validation here.
They also never bothered to test me further for ZnT8 and IA2 markers, which can be present even if the GAD test is negative. I don't know how much this matters, but it just feels like they dropped the ball on me here. They COULD have been more thorough, they COULD have communicated better, but they didn't. I inquired about doing a new C-peptide and they deemed it unnecessary - if I want another test done, I have to pay out of pocket for it, which I can't afford right now.
I think this is hitting me hard because I already run into the issue of not having LADA recognized by a lot of people, including healthcare professionals. I spent a long time feeling backed up by test results that I now know are at least 50% false. I know based on my diabetes progression, insulin dependence and initial C-peptide results that it's pretty clear I fit the LADA profile, and I know only 75% of T1 and LADA even test positive for GAD in the first place, but now it just feels like I'm a liar somehow.
It probably shouldn't affect me this much, but I feel like my diabetes is incredibly invalidated because they let me believe something was true when it wasn't? I can't even right now.