TL;DR I was diagnosed type 1, changed to Type 2, changed back to Type 1, and now my labs look Type 2ish again over the course of 20 years. Anyone have any idea why my body is a jerk and can’t pick a diabetes type to torture me with?
Hi everyone- it has been a very long time since I posted in here. Lots of things happened since then- My dad passed away from ALS, I finished my Masters and my PhD, and I started a new postdoc. I also, in the past year or so, developed amazing control of my type 1 diabetes. As great as that sounds, it has caused a lot of problems, and I’m hoping maybe someone has seen something similar and has some advice.
My backstory: I was originally diagnosed type 1 in 1999 after being in DKA with a glucose over 800. I was on insulin for a couple of years, when I started having near constant lows. The new doctor I had decided to run additional tests and discovered I had a normal c-peptide, no antibodies, and a normal(ish) A1c at 5.5, so he changed my diagnosis to type 2. I did okay (A1c under 6) for a number of years, until 2010 when my A1c began to creep up. I was placed one type 2 medication after another (Metformin, Duetact, Actos, Januvia, etc) and continued to have trouble keeping an A1c under 9. I went back to school and started seeing a nurse practitioner who placed me on the max dose of metformin and thought I was just being non-compliant. In Jan. 2016 I developed a kidney stone and a urinary/kidney infection and went to the ER, where they diagnosed those and immediately placed me on a heart monitor because I was in lactic acidosis and they were afraid my heart would stop. At discharge, I was placed on Lantus and told to not take metformin again and to see an endocrinologist because they thought I had type 1, not type 2.
I went to the endo (who is amazing btw), and she did all of the tests- my c-peptide was below normal limits, I was GAD positive, and she re-diagnosed me as type 1. About 6 months ago, we decided to retest everything because I was only using a basal insulin dose in my pump. Also, we had added Ozempic for insulin resistance and I had lost 65lbs (Ozempic is my miracle drug apparently) so we were curious. My tests came back normal. Normal c-peptide, zero antibodies, normal(ish) A1c at 5.4. I look like a pre-diabetic/type 2 again. Has anyone else seen or heard of this, or have any idea what my body is doing? I don’t even know anymore and it is making me absolutely batty.
On top of this, now I have started a new job and my prescription insurance doesn’t want to pay for my type 1 meds because I don’t look like a type 1, and they won’t pay for the Victoza (replacing the Ozempic they don’t cover) because I’m not type 2. Essentially leaving me in the weeds of not being able to treat my diabetes until I’m once again facing the consequences.
*edited because holy run-on sentence lol