Is it apparent or not quite?

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Kind people, hello. I am in need of your help. Trying to make sense of what is going on with me, causes (I know, very delicate topic) and causations, how to proceed etc.

I will cut to the case and keep it as simple as possible, although I can write significantly more.

I am 29 years old, 163cm (5’4"), ~51kg (112lb) since I was a teen, with no classic symptoms of diabetes, no family history.

Some other numbers, from December 2021:

Fasting BG: 4.22 mmol/l (76 mg/dl)
*Everytime I had yearly bloodwork done, FBG was around 4.1-4.6 (74-83 mg/dl)

Fasting insulin: <2 uIU/ml (ref. range 6-27)
*It was not the first time having low insulin. The only time I had it done before was in 2018 and it was 2.9 uIU/ml. No comments were made and I was at that time, unfortunately, not educated enough to push further.

That insulin level now brought on further testing:

HbA1C: 5%

C-peptide: 1.34 ng/ml (0.45 nmol/l) (ref. range 0.9-7.1 ng/ml or 0.3-2.36 nmol/l)

OGTT [Time: BG / Insulin]:
0’: 4.31 (78 mg/dl) / 2.51
30’: 7.20 (130 mg/dl) / 18.2
60’: 9.06 (163 mg/dl) / 23.9
90’: 11.30 (204 mg/dl) / 38.1
120’: 12.40 (223 mg/dl) / 51.4

The first doctor concluded this was very, very, veeeery strong IR due to the fact that I managed to come up with insulin level of 50. Naming it that or diabetes didn’t matter to me, I have high BG and needed to know what caused this in order to adress that. Foolish, right?

I was perscribed metformin, which I did not take. I wanted to see first what my body is doing on its own.

Since then I have been carefully monitoring BG while logging every little contributing factor I can think of and eating to my meter. It told me to go low carb. My postprandial values with LC are around 6 mmol/l (108 mg/dl) at 1h mark and it takes 2-4h, but mostly 3h, for BG to return to baseline. I am getting a CGM in the next couple of days, very excited about that.

The second doctor was almost certain that I was LADA (as was I), caught at an very early stage. The antibody tests were ordered: ICA, IA-2 and GAD. All came back completely negative. I will be going in to see her soon with the results and see what she says.

My starting questions are:

  1. How to explain the HbA1C of 5% at diagnosis? From my measuring I now know that I was having BG of 10-14 (180-252 mg/dl) for many hours after one meal. Was eating 2-3 times a day, so some overlapping must have occured.

  2. What to do next in terms of treatment and/or lab tests? The idea of being in the dark, waiting my whole life to see if/when my control will be taken away from me is rather unpleasing.

  3. Or should I just accept type 2: IR with phase 1 insulin response diminished? Is it that obvious from the OGTT along with negative AB? Maybe I am simply torn between being frustrated with the veil of mystery surrounding type 2 and my need for hard(er) proof so I cannot see clearly the data that is in front of me.

Any thoughts and advice will be very much appreciated and I apologize for the long post.

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Welcome Ana2, I really don’t know what to say about your fairly low HbA1c test with high postprandials, perhaps someone else will be able to enlighten you (and me).

From what I have read, it is possible to be type 1 or LADA with negative antibody tests. LADA is tricky because the lost of Beta cells is much slower than classic type 1. Maybe not as slow as the lost of Beta cells in type 2. Type 2 Beta cell loss is caused by years of overwork, not an autoimmune response.

I have 2 friends who were originally diagnosed and treated as type 2. That worked for some time, but when the loss of Beta cells became too much, they did tests positive for the antibodies. This is much more difficult in those who test negative.

The truth is, there is so much that is unknown.

Your C-Peptide is really low. By reducing dietary carbs, it appears that you are secreting enough insulin for reasonable glucoregulation. This is probably not sustainable in the long run. I suspect that you will need to replace some insulin, maybe a long insulin to begin with then later to MDI with meal boluses.

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I do have an explanation for your low A1C with high postprandial BG’s. A1C is most affected by overnight BG’s, so if your BG over night is under 100 then your A1C is compensated for the 200 post meal BG’s.

Weather it’s type 1 or 2 at this point doesn’t really matter since no Dr. is going to prescribe insulin until you have BG’s that don’t come down after eating or maybe even until your fasting BG is consistently high since Dr.s are scared of low BG. Keep watching your BG’s and if you want you can keep on eating low carb to possibly preserve your beta cells. Eating a balanced normal diet will of course cause higher BG’s that will at some point require insulin if you want to force the issue.

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I know a type 1 that didn’t test positive for the antibodies, but she doesn’t make insulin. She’s actually the diabetic educator here. That does happen. The key becomes the not making insulin. On a C-peptide test If you are a type 2, you make extra insulin as you are insulin resistant. So a type two tests high normal or high because their body tries to make up for it. But a type one is lacking insulin production and they will test low or low normal because they are losing the ability to make insulin.

Type 1’s/LADA have what we call a honeymoon period…you still make insulin for a while until you stop. That process can take years in some cases. So it can be very misleading and one of the causes as to why so many type 1’s/LADA are misdiagnosed at first as type 2.

An A1c is an average of 3 months with the last month having a little heavier of an influence. But it’s an average. Like @Firenza has said, if you spend nights at fairly normal levels and only part of the day with elevated levels, it can level out with a lower average.

My first two original A1c’s were in the low 5’s, at first I waking up to 110-119 numbers and the next year it was in the 130’s. With higher numbers after eating. But I had tested off and on for years (I had an uncle that had type 1) and knew it wasn’t normal for me. But since it was normal A1c’s I was told it was just fluctuations, don’t worry about it, keep exercising, keep losing weight. 3 years later I was waking to 180-200 numbers. After several medication attempts that made me sick, they put me on insulin. In my case I was told I was a type 2 by my endo and GP who never tested me for anything. It wasn’t until I switched GP’s, who sent me to a new endo, who tested me and I was diagnosed right as a type 1. I was positive on antibodies and not making any insulin per a C-peptide test,

The thing is it can be a rough road for some. You still make some insulin and with a negative test on antibodies, they likely will not put you on insulin (yet). They are likely to try some kind of medications at first. I don’t know what you are, but it seems like you are making the lower end of amount of insulin, not the increased amount a type 2 usually does.

There are a couple more tests that might be done, doctors will test for the most common ones first and are loath to order the others. A lot will just order the GAD test because that is the most common. I see where they ordered the ICA, IA-2 and GAD on you. I’m not sure how prevalent the other two are.

  • C-Peptide
    While most tests check for antibodies, this test measures how much C-peptide is in a person’s blood. Peptide levels typically mirror insulin levels in the body. Low levels of C-peptide and insulin can point to T1D.
  • Insulin Autoantibodies (IAA)
    This tests looks for the antibodies targeting insulin.
  • Insulinoma-Associated-2 Autoantibodies (IA-2A)
    This test looks for antibodies mounted against a specific enzyme in beta cells. Both the IA-2A and GADA tests are common T1D antibody tests.
  • Zinc Transporter 8 (ZnT8Ab)
    This test looks at antibodies targeting an enzyme that is specific to beta cells.
  • Islet Cell Cytoplasmic Autoantibodies (ICA)
    Islet cells are clusters of cells in the pancreas that produce hormones, including insulin. This test identifies a type of islet cell antibodies present in up to 80 percent of people with T1D.
  • Glutamic Acid Decarboxylase Autoantibodies (GADA or Anti-GAD)
    This test looks for antibodies built against a specific enzyme in the insulin-producing pancreatic beta cells.
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There are also a lot more than a few types of diabetes. In addition to the better documented T1 (including LADA), T2, gestational, and medically-induced diabetes, there are 11 different types of MODY. Then, there are some who present more like one type or another, but don’t meet the diagnosing criteria for any type. Simply put, our medical knowledge just isn’t advanced enough to identify all the different types of diabetes.

MODY is a bit of a misnomer because we didn’t understand enough about diabetes when it was named. It stands for Mature Onset Diabetes of the Young. It sounds a lot like LADA/1.5, but it’s actually caused by a single genetic mutation and not an auto-immune attack… So no antibodies to test for. There are 11 different genes associated with diabetes, and if any single one glitches then you lose the ability to make and/or regulate insulin and BG just like a T1. The only way to identify MODY is with genetic testing.

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The MODY Panel has been greatly expanded. Joslin has been convinced for the past few years that I am MODY but every time I go through the latest genetic testing for all the current MODY markers, I come back negative. 5 weeks ago, I was again set up for the latest MODY genetic testing available and was told I should get the results within about 5 weeks which should be any day now. This is the test I took so for anyone interested there is plenty of MODY information here:

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Thank you all for taking the time to read and reply!

I understand what you are saying about the HbA1c, I suspected of that too. Just, the difference is so great that I thought it to be very hard to “compensate”. Not that it matters now anyway, I know what the current levels are so I am willing to let that one go.

During the past 8 months, I have been learning as much as current science will allow me. So, of course I know of MODY, but unless I win the lottery, it is not possible to do genetic testing just for the sake of my couriosity. Iatrogenic diabetes has also been discussed with my doctor due to long term birth control. I know what research is saying. Nonetheless, I am keeping all cards open, not jumping to any conclusions. It may be some form of denial, but I will call it meticulous approach.

See, I really do not care about fitting in some type, criteria and so on. I am well aware of the lack of our medical knowledge, but also the differences between each case. That is the reason I am thinking critically, not biting into what I am told right off the bat. Of course, that takes time and patience. And sadly, I find myself loosing it.

As for the high C-peptide with IR, I think it is clear that beta cell burnout is happening with that state also. It just depends on when in the course of time you are looking at it. Leave it long enough without attention and the pancreas will be “worn down” and have low fasting levels. Who is to say that is not the case?

I’m not from the US and the situation in my country is fairly different. I have already discussed with my endo about the possibility of including small amounts of insulin as a way of perserving beta cells. The question remaines if LC is enough to stop further deterioration, which brings back the question of root cause.

Having basically no more tests to do, I have to make a wild guess on how to continue through life. I don’t really know what I’m looking for here, it seems like insulin is the answer in any case. I am not against it, but I think you will understand when I say that I would like my days to be as “carefree” as possible.

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