r/ladadiabetes

Hi, this is gonna be a long story so buckle up.

I’m 23F, and have been small/underweight my entire life. In 2020 I had a pretty bad case of COVID and after that I started noticing what I assume to be hypoglycemic episodes.

I end up getting myself a blood glucose meter and checking my blood sugar, and sure enough, I’m frequently dropping into the 50s. So I go to my PCP who prescribed a CGM and a referral to an endo.

Endo #1. Pretty much immediately dismissed my concerns and told me I’m just too skinny and I need to eat more. I push her to run some tests and so she does. Everything is normal, so we do the 72 hour fasting insulinoma test. Negative.

Through the hospital I was able to see a genetic specialist and metabolic dietitian to analyze my diet and run a gene panel to check for any genetic causes of hypoglycemia. None in my genes. Metabolic dietitian looks at a log of EVERYTHING (literally had me weighing my foods and how much I ate) and she determined calorically I am getting enough.

So at this point I kind of just had to keep going and monitor myself and figure out how to manage it. Then one day things seemed to sort of flip. All of a sudden I would get high blood sugars, like, going over 200s high. This was obviously concerning and so I go back to my PCP who tells me I have a UTI, despite my only symptom of that being that I was thirsty and had to pee a lot. No fever no nothing. So this pushed me to get an appointment with endo #2.

Endo #2 was more worried about the lows than the highs and didn’t run any lab work or anything. Frustrating.

So life continues as usual and I make an appointment with endo #3. I book this appointment 9 months out (the soonest she had available) and then roughly a week before the appointment, they cancelled it because of “provider being out of office” so it took my probably a year until I was finally able to see endo #3. She runs some bloodwork and says everything is fine. In the blood work she ran an autoantibody panel. All came back negative.

At this point I book an appointment with a NP who is a diabetes specialist, she takes my whole history and runs A TON of blood work. My liver, thyroid, cholesterol levels, everything.

My OGTT at 2 hours was 141, so just barely above the “normal” cutoff. And then my fasting glucose from another day comes up at 101. (This is all on lab tests not my home meter)

Anyways, all that to say doctors have no idea what the fuck is going on in my body, and it’s been exhausting. Also, I very RARELY get lows anymore. So reactive hypoglycemia is unlikely

I just need somewhere to vent where I don't feel certifiably insane.
 
Pertanant BG info:
36/f/overweight
2 autoimmune disorders already (hashimotos and RA, the hashimotos is decently well maintained)
7/17--went to the dr where they assumed without doing anything worthwhile that i had a UTI that cultures later didn't support me having. at that time i had glucose and trace ketones in my urine. still, no one did anything.
waiting on a dexcom study (because they wont use my stelo data.) and for antibody testing to come back as we speak.
last a1c was 6.1 on 8/3, but i have high rbc turnover and also had two iv iron infusions in the same month as this a1c.
 
Okay so basically I have been having crazy hyperglycemia, like...fasting has been consistently between 140-185, and have been spiking between 250 and 350 after meals, sometimes staying high for hours and sometimes dropping within a few to high 180s. my stelo graphs all look like rollercoasters, i am up and down at absolutely all times of the day (see me spiking over 200 at 2am when I hadn’t ate since 6 on multiple occasions and dropping to low 100's soon after.)
 
my doctor ABSOLUTELY fought me on ordering the lada antibodies, it genuinely took weeks and me sending multiple messages to the office showing it continuing to be an issue before she even entertained the idea. she INSISTS that i am just fat and this is insulin resistance. she at one point was like well you need insulin but im scared of causing you to crash, and then wanted to put me on a sulfonylureas which research has told me is the absolute wrong thing to do if its possibly lada. with already having two autoimmune disorders, i feel like this is.....a genuine concern but she is making me feel like an insane person. does this sound like lada? am I reasonable in my insistence? or does this just sound like early stage type 2 or insulin resistance? 
 
also, does anyone know how long it usually takes to get the full antibody panel back? it was drawn yesterday.

I’m in my late 20s. Last year at my doctor appointment my fbg was 101 and A1C was 5.1. This year my fbg was 113 and my A1C was 5.4. I try to eat very well and don’t have a big sweet tooth. My BMI is also around 20. I don’t have immediate or close family with diabetes. It’s a mystery to me why I may be pre-diabetic based on fbg only. A couple thoughts besides lada is having an anxiety disorder my stress levels are high often especially the past year and 3 months before my doctor appointment. Also, when blood was drawn I was in a state of high anxiety. As I try to make changes to improve my fbg and A1C I really don’t want to lose weight as I’m already very lean (have been my whole life). My weight has been stable. I know more tests are needed to rule out the possibility of lada but curious if any of you had similar stories to this?

So I was told a few months ago that I would probably have LADA in the next few years after testing positive for zinc transporter antibody, metformin made my blood sugar go from being in the 200s regularly to never being over 150 but this week I’ve started every day having blood sugar over 220, hypoglycemic drops into the 60s, I’m thirsty even though I’m drinking up to 4 water bottles an hour at some points (only at work I work outside) peeing nonstop, having cramping in my legs, and numbness in my toes. None of this was ever a problem even when my blood sugar was high when I originally went to the doctor. Im worried that I’m in the beginning stages already. I have a visit at the end of next month but should I just call my Dr?