First post here so hopefully im not too confusing.
Background…
Im 37 165 pounds, go to teh gym 3 times a week, r twice a week and ride horses once a week. Diet has been controlled for past 18 months firstly to cut then to bulk some lean mass.
About 12 weeks ago i went to dr’s as I had been feeling tried, toileting a lot general usual symptoms. Hab1c came back as 57 then a repeat 2 weeks later came back as 68. Dr said definately diabetes and most likely type 1\LADA due to my body make up and fitness levels.
I had my Anti GAD and C pep but whilst waiting for results I started on insulin, tracking a lot and calculating insulin to carb ratios.
ive been having 5 units levemir am and 2 in pm and then having a 10:1 ratio of carbs to insulin for past 3 weeks, generally quite well controlled with some highs still up in mid teens an a couple of hypos treated usually.
Then results came back… C-pep normal, No anti GAD… therefore not Type 1 or LADA but ive been responding very well to the insulin im dosing around 35 TDD a day?
Very confused and not sure of next steps or what to expect… thanking you all in advance!
Firstly, don’t be confused because the insulin is working. Insulin always works. How blood sugar got high in the first place doesn’t matter. Insulin is the body’s way of bringing it down. More insulin, lower blood sugar. Just as it doesn’t matter why BG is high, it also doesn’t matter where the insulin came from. It’ll do its usual job. Obviously there are dosing and related issues to consider, but you get the point. The fact that insulin is effective doesn’t point to a T1 or T2 diagnosis either way.
There are still a lot of unknowns here.
C-pep readings aren’t meaningful in isolation. They need to be evaluated in context (eating or fasting, presence or absence of exogenous insulin, etc.). And “normal” is kind of vague without specific numbers. All else being equal, high blood sugars with normal c-pep readings suggest insulin resistance, which is a hallmark of T2 but also occurs in tandem with T1 in a nontrivial number of cases. So that by itself isn’t proof of anything, either.
And GAD is only one of the relevant antibody tests. Just because one comes back negative doesn’t mean others will. Another unknown.
To have a reliable diagnosis, those unknowns really need to be filled in.
In the meantime, the objective should be to maintain decent control while all that gets figured out. Which it sounds like you’re doing. Good job!
Can’t diagnose you over the internet, and I’m not qualified to anyways
However, bear in mind there are several possibilities in terms of diabetes without antibodies present on first test:
Some Type 1s initially show no or low antibodies immediately after diagnosis.
There is something called Type 1b or Idiopathic Diabetes which is rare (more common in folks from the Indian subcontinent), but presents as Type 1, but patients never show positive antibodies. Possibly genetic.
Maternally Inherited Diabetes and Deafness is a mitochondrial disorder that often results in, you guessed it, insulin-dependent diabetes and deafness. If you got this, you got it from your mom, and you’d likely have other people in your mom’s family with diabetes hitting in the 30s and 40s.
Some Type 2s are just weird: low-insulin production, otherwise fit individuals (sometimes called "Skinny Type 2s), etc.
Maturity Onset Diabetes of the Young (MODY) is a terribly name for a disease because it’s so inaccurate: these are a collection of strictly-heritable (i.e., you get it from genetics not lifestyle or infection) genetic disorders, some of which require treatment with exogenous insulin and some of which present more like Type 2.
Anyways, my point is simple: diabetes is a lot more complicated medically than just Type 1 or Type 2. You sound reasonably fit and youngish, so Type 1 makes sense. And antibody tests aren’t really reliable or consistent, especially early after diagnosis. I also was phenotypically unlikely to be Type 2, tested negative for antibodies, and then tested positive (but low) for antibodies. So I’m considered early Type 1, but I’m actually managing through diet and exercise for now (won’t last). Point being, the disease(s) is weird and varies wildly from individual to individual.
As @David_dns says, the important bit is that you have things under control now while doctors figure out what is going on. I’ve had to take the same comfort myself: my BG are good, even though I have no idea what next year will bring in terms of my disease or treatment. And you’ve found a good bunch of people here on TuD! Lot’s of experience, lot’s of knowledge.
Thanks for the info, I guess Im trying to jump the gun and would prefer to know what im dealing with to push on:) best not run before I walk.
Im seeing the Consultant and endocrinologist in a couple of weeks so hopefully can start putting some more of the pieces into the puzzle.
