I was diagnosed in 2010 with T2D based on my fasting BG > 400, and A1C of 10.7. They never did other tests because I am overweight. After a few months of listening to the doctors, increasing my glipizide dose, and not getting better, I did some of my own research and hopped on the low-carb bandwagon and managed to bring my blood sugar under control. For a few years I was able to stay between 5.0-5.7 on about 30-100g of carbs a day, depending on how awesome I managed to be on any particular day.
Over a year ago diet alone stopped doing the trick, and my fasting was hitting 190 and my A1C was 6.9. This January I finally wrangled metformin and insulin (novolog and levemir) out of my doctor. Still getting the hang of it all and I now average 75g/day of carbs.
I would like to understand if my pancreas is pooping out, or if all my problems are coming from just insulin resistance. Also if I do test positive for antibodies, my insurance would start paying for things.
I see the new endo on Sept 6th and was wondering if there was anything I should be doing to prepare for the blood tests? For example, if I hit it out of the ballpark and do 30g/day for a whole month, would that cause my c-peptide to be low, and we would have trouble saying it is because of poor pancreas function or due to the low-carb diet? I’m seeing an endo at the Kovler Diabetes Center in Chicago, so I assume at the very least I would get the following tested:
fasting insulin and c-peptide
the “big 5” antibodies (GAD, IAA, ICA, Zinc and IA-2A)
Basically I don’t want to screw up and waste my chance at getting proper help. Kovler said they only deal with “complicated” T2, so I’m a bit afraid that if I am not interesting enough, I’ll be kicked to the curb.
No preps as far as I know for those tests.
Good luck.
Hate it how Drs never look further than people’s body type when it comes to assuming one is Type 2.
Certainly you should be tested for type 1.
In any case, even if you are type 2, it is well known that insulin early (and the accompanying good control) can prevent complications.
At least you are now on more appropriate treatment whether you are type 1 or type 2. But is will be good to know.
Second the no-prep opinion
If you have the antibodies, you will test for them
I was diagnosed T2 for three weeks, and could not lower my sugars below 300 no matter what I did
Finally made it in to see the Super Endo in my area.
I walked in, and he asked me three questions, and then tested for GAD and c-peptide and others
He asked me if I had lost weight without trying (80 lbs in 3 years)
Asked me about my carb intake
(At that point, I had cut out ALL carbs but lactose)
Asked me about family history of diabetes
(None)
Told me it was not my fault
(Now I know all types are NOT guilty of creating these conditions)
Told me about LADA
Took my blood
Put me on Tresiba
Increased my Metformin
I was within range in three days.
Results came back LADA a week later
If you have the antibodies, they will show up in the tests
Sounds like you’re on a track that might get you some answers… I’m in the Chicago area, but but only involvement with Kolver or the University of Chicago Medical Center was what turned into an ill-fated visit with an endo (the then-Chief of Endocrinology), who dismissed any question about the nature of my diabetes and went on to misdiagnose some other complaints I was having at the time.
My first endo did a c-peptide, insulin, and GAD65 antibodies test, but I think he left out some of the “big 5”. He also did that test only around 90min after I’d had lunch, so it was NOT a fasting sample. The antibodies test came back negative, so he dismissed any subsequent testing as inconsequential …
I have a new endo now, but, while I have had c-peptide and insulin repeated when fasting and they’ve come back low, but never had a re-test on antibodies. My recent c-peptide and insulin tests both came in well below normal.
Always a good thing to get as much info as possible! I wish you the best in your quest. It’s absolutely imperative you feel your doctor is working for you and your health, and not discounting your experiences.
The only reason celiac testing is like that is because with celiac the autoimmune attack is only activated when gluten is eaten. With other autoimmune conditions like diabetes, they stay active all the time once they’re triggered, so what one does or doesn’t do won’t affect antibody levels if there is an autoimmune attack going on.
I completely agree about celiac disease requiring a person to be on a gluten containing diet prior to testing since gluten triggers the autoimmune response (I have Celiac disease).
Now, I know relatively little about diabetes, but would a LCHF diet affect antibodies? Just taking thyroid replacement lowered my thyroid antibodies. If true, should Daytona go off the low carb diet for a few days or longer prior to her blood draw? Just curious.
Interesting question. Did your antibodies just lower, or did they become negative? I have Graves’ disease and my antibodies were quite high. It never occured to me that taking anti-thyroid medication might make my antibodies lower. My levels were high enough that it would have to lower a substantial amount to become negative. I also have an anaphylactic food allergy, and even though it’s different because my body is producing antibodies against a food and not against my body, the antibodies directed against that food have stayed very high despite avoiding the food for several decades (minus some tiny accidental exposures). Even if a LCHF diet did lower the antibodies somewhat, I think in these cases the actual level doesn’t matter so much as whether they are positive or negative. So, unless someone was borderline to begin with and any amount of lowering would lower them into a negative result, I wouldn’t worry too much about it.
I don’t know about GAD specifically, as I’ve never had it done, but I think of borderline as a result that comes back just above positive. For example, if negative was <1.5 and a result came back at 1.6, that’s borderline compared to a result of 9.6, which is unequivocally positive.
Hmm, well I saw the new endo today and talked about antibody testing but since I am overweight, she wouldn’t even consider it. I was hoping for more from the Kovler Diabetes Center, but everything I heard from them was the standard lines from the ADA and wasn’t quite what I was hoping for.
Since I was there first and foremost to get a CGM, I didn’t argue long and focused on the CGM instead. At least on that front, mission accomplished!
I’ll try talking with her about antibody testing when I see her again in a few months.
If you are willing to pay out of pocket you can get GAD testing done through http://directlabs.com/
It’s not cheap at $138 but it could give you an answer. C-peptide is available from there as well, but I’ve seen it much cheaper from other sources.
Do you know a place where I could get the full set of antibodies (GAD, ICA, IA-2, IAA, and ZnT8) checked? Knowing my luck, I’d pay for GAD, get a negative then be left wondering.
Do you have an immediate relative with T1 diabetes? Trialnet might be an option… I am not aware of any lab where you can order your own tests that does more.
Honestly though if you are negative for GAD I would be shocked if you had any of the others - it’s kind of the gold standard for a reason.
