So, it’s becoming less and less clear to me what form of diabetes I have, and, while I’m going to try to see my endocrinologist ASAP to discuss this with him and ask him to rerun some tests, I figured I’d throw this out to the community here and see what you think. I’m going to lay out the evidence for T1/LADA and for T2, and if anyone can make sense of it, I’d be appreciative.
Evidence for T1/LADA
Presentation on diagnosis was with ketosis, but not DKA (had ketones in urine and on my breath, but wasn’t having any of the “really bad” stuff.
One blood test showed presence of anti-islet antibodies (80 JDF units). According to an article I saw somewhere on the web, my honeymoon should be long over by now with that load, so I think it may be an erroneous result.
Evidence for T2
- I’ve been off Humalog for over 2 months and keep having to reduce my Lantus (I take 1U if I’m going to be doing really strenuous stuff and 2U if I’m only going to be doing mildly strenuous stuff. On a recent Jewish holiday that involved a lot of dancing and about 2 drinks, I dropped down into the 60s on 2U.) 2 months ago, I was at 6U.
- As I’ve lost weight (down about 50 pounds since dx), my blood sugar control has improved markedly. With the exception of a few days when I had a small infection on my ear, my fasting sugars for the last several months have almost all been below 110, and, when I’m not fighting off this cold, have been in the 93-97 range. With the exception of one or two days, all of my 2 hour postprandials have been below 100. Exercise has also helped, but haven’t gotten as much in the last month because of the Jewish holidays.
- I’m restricting carbs, but my carb tolerance seems to be improving. Meals that would have spiked me in August have no discernable effect (my sugar may be 95 2 hours post instead of 87, which seems to be around my baseline non-morning fasting - that’s what it was at the end of Yom Kippur, which is a 25 hour fast.)
- I seem to have reactive hypoglycemia when it comes to straight sugar - just as a test, I had 8oz of soda yesterday (30 g sugar), which got me up to 137 after an hour and down to 61 after 2 hours. Starches and other carbs don’t seem to have this effect.
- My c-peptide results for a mixed-meal challenge on 9/4 indicated that I still had a very strong c-peptide response. An Israeli physician friend of the family indicated that he thought the results indicated glucose intolerance, which I understand to be associated with T2 rather than T1. The curve suggested to my mom (also an MD, as I’ve mentioned before) more of a resistance pattern than a dead pancreas pattern. Several people on this site felt that it was phase 1 release impairment, with one vote for hyperinsulinemia.
- Blood sugar at diagnosis was 539, which was a 2 hour post of a very high-carb meal. The next day, my first reading on my meter was 360, which suggests to me that there was a decent amount of insulin production. I have no recollection if this was a postprandial or not.
So, anyone, thoughts?
I have no idea what is going on with you. I can tell you what we are doing for my daughter who is truly glucose intolerant, but not diagnosed with diabetes just yet. If she has any sugar or very many carbs she becomes very hyperinsulinemic very quickly and crashs very badly. She doesn’t take even an hour. We have to bring her up very slowly and have learned to avoid the hospital if at all possible. We give her just enough to bring her blood sugar up just a little bit and then switch to proteins. She is very thin and we keep her on a low carb diet and she is managing just fine. She has to check her blood sugar frequently and eats at least 5 times a day. She is very active and does very well as long as we keep her diet very controlled. My son a type 1 had this same pattern before he was diagnosed. So we just watch our youngest daughter. Right now she is making insulin just fine, but we believe the attack oh her pancreas has already begun. I just wish we could turn it off or slow it down. I know you have struggled quite some time with this and i wish things were easier for you. My best to you.
Yes, I do have some thoughts. There is a defective gene found in people of Ashkenazi descent diagnosed with Type 2 diabetes which is also involved in one of the forms of MODY. It affects the ability to secrete insulin in response to rising blood sugars after meals.
The gene is HNF4-a.
If you read up about HNF4-a MODY you will see it comes with normal C-peptide results, very high post meal blood sugars, and “honeymoon” like insulin use.
I may very well have the same thing. I also have the intense reponse to 1 or 2 units of Lantus. I can cover 20 g of carbs at meal time with 1 unit of Apidra. I respond extremely strongly to Amaryl which is another tipoff that the HNF4-a gene may be involved.
I seem to have had high-pre-diabetic blood sugars (with a normal weight) until I took a course of prednisone at which point I became fully diabetic and stayed that way. I also had a couple Gestational Diabetic pregnancies at normal weight which is another tipoff of borderline diabetes.
Anyway, the unfortunate part is that doctors know NOTHING about this and will not be much help. You might try a very tiny dose of Amaryl and see what it does, or perhaps prandin which works for some people with MODY but not others.
Januvia gave me dramatically normal blood sugars but with terrible side effects AND the possibility of promoting cancer (I’m a cancer survivor) so I would not suggest it to anyone. But if a person responds to it, that does suggest that kind of meal-time secretion flaw typical of HNF4-a defects, too.
You might check out my page about MODY and read the case study of HNF-4a diabetes that is linked there.
Though I believe from something I was told by an expert that the HNF4-a defect found in Ashkenazi Jews is slightly different from the MODY HNF4-a defect, but I have not been able to get anyone to give me a detailed explanation of this.
If you want to discuss this further, please email me. There’s a link in my profile.
If you are positive for anti-islet antibodies I would say you are a developing Type 1 LADA. Those antibodies aren’t going to go away. I have a question for you… Did you show positive for Insulin antibodies as well? Perhaps you didn’t test for those. Honeymoon periods/effects can last a very long in certain people… in some cases years (not very common, but it does happen).
There are some cases in the literature of people with antibodies but not having T1, so there’s always some hope there (and I don’t mean Halle Berry!). I suspect LADA, but the last time I spoke to my endo, he was stumped, and my condition and glycemic control have improved since then. Obviously, I want him to rerun the antibody test.
I have no recall if they tested for insulin antibodies at the time. I can check the results when I get home.
I have type 2, but I also showed ketones on Dx, with fasting BGs in the 300s going into 500s after eating. The difference was that the ketones would appear when my BGs went down after meals and disappear when I ate again. Diabetic ketoacidosis occurs when BGs are high.
Because of the improvement with weight loss and the good C-peptide response, it’s possible you’re type 2 with a lot of insulin production but a lot of insulin resistance. With a decrease in the IR because of the weight loss, the insulin you’re able to produce is getting more and more effective. Some type 2s do have antibodies.
It’s also possible you’re MODY or some other yet-undiscovered type of diabetes. It’s also possible to have insulin resistance with type 1. If your doctor is willing to do more tests, that might help understand what’s going on.
Glucose intolerance is the term they used to use for what is called prediabetes today. It means you’re able to produce enough insulin to keep your fasting numbers normal, but not enough to cover meals.
If I were you, I’d view the improvement with weight loss as a strong incentive to keep losing weight to see if you can continue to improve your control and get off the insulin entirely. You didn’t say if you’re down to an ideal weight or if you still have some to lose.
I’ve probably got about another 15-20 pounds to go. (BMI index says I should be at 177, but not with this frame!) Losing about 1-2 pounds a week. Need to start sleeping more and getting back to the gym. Oh well.