Hello I am going through a diagnosis but it is taking quite some time. I’m feeling a bit lost and I am wondering if anyone has any advice.
I started having symptoms of high blood sugar in February and after going to the doctor who referred me to and endo, I found out my BG was spiking. I was given a Libre 2 CGM and told to wear it and keep track with my BGs. My BG started out only spiking to 170-180. Fast forward to now my BGs go into the 300s my A1C according to my Libre is 6.2 which it started out at 4.1 in February. I’m so thirsty all the time and waking up all night to use the bathroom. I’ve lost weight without trying. I had all the antibody testing done which all came back negative. I had C-peptide test done which came back at the very low normal. So it’s in the normal range but barely. My doctor is very perplexed because I’m not overweight and I eat low carb and exercise. She put me on 1500mg of Metformin and my BG still spikes. I’m not really sure what to do at this point because I feel extremely lost and defeated. Does anyone have any insight or a similar situation to mine?
I always warn people that if a C-peptide is low or low normal, but you still are negative on an antibody test you still could be a type 1.
There are several antibody tests and a lot of the time they just test for GAD antibodies because that is the most common. So you want to make sure they did all of them. But some do test negative on antibodies and stop making insulin and they don’t know why. My Diabetic Educator is one of those.
Even though you are still making some insulin, the low is a sign something is going on and I would expect another C-peptide test at some point. You are getting into too high of blood sugar levels and I would suggest starting insulin to get them lower.
LADA/type 1 is slow onset ,and that means you still make insulin for quite a while, even up to 8 years plus. Sometimes it is faster, sometimes it is a slower process. Hence why you can still have a low C-peptide for a long time. High C-peptide would be a sign of type 2, a type 2 still makes insulin, they just don’t use it well.
A type 1/LADA is often misdiagnosed as a type 2 at first, 40% in fact. Medications and change of diet work at first because you still make some insulin for a while. Most GP doctors will supposedly only have a few type 1’s in the US in their lifetime so they are not real familiar with it.
I am not saying you are a type 1, but just because you have a negative antibody test does not rule it out. Weight loss, thirst, high BG levels and a low C-peptide sure makes it sound like a possibility.
I concur. You need to have all 4 antibodies tested. And also if you retake the cpeptide, make sure you fast for at least 12 hours. That way you get a true fasting level.
4 autoantibodies are markers of beta cell autoimmunity in type 1 diabetes:
islet cell antibodies (ICA, against cytoplasmic proteins in the beta cell),
2.antibodies to glutamic acid decarboxylase (GAD-65),
3.insulin autoantibodies (IAA), and
4.IA-2A, to protein tyrosine phosphatase
80 percent of type 1 are GAD positive but that means 20 percent are one of the others.
I tested positive all 3 of the ones I was tested for. The IA -2A wasn’t done back then.
But I had more of a classic type 1 onset. Very fast I was very thin and I was 21.
At age 67 my PCP diagnosed me as a type 2 with an a1c of 8.2. A year and a half later I still wasn’t responding consistently to type 2 treatment. I had lost weight. Went a CDE and had the c-peptide and antibody tests. She corrected my diagnosis. In my non-medical language, when your pancreas craps, it craps out. It bothers me when medical professionals think you need to fit a certain profile.
Was misdiagnosed T2, was actually LADA. Was given a range of medications to “fix” the numbers, ended up in DKA coma —would have died if I’d been living alone (thanks to my COVID-pod, I wasn’t alone). Coma for 11 days and hospitalized for total of 21. Almost lost kidney function, etc. etc. etc.
Please follow up on this. Doctors make mistakes and they only see what they’re accustomed to seeing.
Doctors didn’t even test me until after 20 days (did I mention it was also 11 days in a coma in ICU)?