Update On My Diabetes

Type 1 and LADA New to Type 1 Diabetes
1

Thought I would give an update as to my case.
Short Summary: 33 year old Family Medicine physician Diagnosed in June 2014 with HgbA1c of 6.0 and Impaired Glucose Tolerance (with basically no Phase-I insulin response.. sugars go up to 200 with around 30g of carbs).
Since the last post, I have taken the advice of many here and got tested to rule out for Type 1 and the antibody tests have all come back negative.
(with the exception of the ZNT-8 test which my insurance did not have).
Here are my results:

GAD Antibody (-)
IA-2 Antibody (-)
Insulin Antibody (-)
Islet Cell Antigen 512 (IA-2) Antibody (-)
Islet Cell antibody (-)
Hemoglobin A1c = 6.0 (Still High Unfortunately)
Vitamin D = 44 (This I'm trying to get in a higher range).
Cholesterol Total =199
Triglycerides = 47
HDL =68
LDL-C =122.
Cholesterol/HDL Ratio: 2.9
Fasting Insulin = 5 (Normal is 2-22)
Fasting C-Peptide =1.0 (Normal is 0.8-5.2)
Free T-3= 233 (Normal is 220-440)
Normal Iron Panel and Ferritin.

So yesterday, I went to see my Mom's Endocrinologist. My mom was diagnosed with Type 2 (She is also thin, Asian) with these results to get his opinion. My biggest question was what type of Diabetes do I have? Given all my antibodies were negative, I pretty much ruled out for Type 1, but he agree with me that based on my numbers with lowish C-Peptide levels, Low Triglycerides, High HDL and that I'm thin and weigh 105 lbs that I was not the typical "Insulin Resistance" Type 2. He said that he does not think I have insulin resistance at all. So I asked him if he felt like I could have MODY. He was pretty skeptical and said that usually onset is younger than 33 (which is my current age). Insurance of course does not cover for genetic testing, he states out of pocket price in california would be around $10,000.00 (I am actually contemplating this, my mom thinks I am insane). Regardless he feels like I'm still Type 2, but he thinks I'm not of the "insulin resistance" variety, but the lean more genetic Type 2 that he sees, that is characterized by being insulinopenic based on my low C-peptide level (in my mind when he said insulinopenic.. I was thinking.. well doesn't that mean my pancreas is kaput and how did it get that way if I'm not MODY or Type 1?) Anyhow, he felt like it was genetics and I was just dealt a bad hand because my mom whom is also thin was diagnosed with Diabetes at the age of 40.

His recommendation was to start Acarbose (which was not what I was expecting). He thinks because I have no signs of insulin resistance, metformin may not be that beneficial, but because I have a phase-2 response that Acarbose may keep my Postprandials under 140 for some time.
(How many here have taken Acarbose?)
So that's where I'm at. I'm probably going to get a 2nd opinion.

Everyone here has helped me immensely and I appreciate all the advice here. I restarted a LCHF diet with all the recommendations everyone here has given me and am giving it another go. I think if I follow everyone's recommendations here, I might be able to keep my Postprandials under 140 (Barely), but i'll have to be really strict with my diet and really up the fat content as everyone has recommended.
Hope everyone has a good Christmas and New Year's!

2

Did you talk about the possibility of going on insulin with your Endo ?
It's like early LADA minus the antibodies. The treatment shouldn't be any different than LADA though.
The way I think is that you would need insulin couple of years down the line, why should you not start now. Does your Mom inject insulin or she is on Oral meds. How is her BG control?

3

I have a paper here you might want to read--it describes the pathophysiology of T2. It's been a while since I read it, but if I remember correctly all eight defects that make up the various types of T2 are predicated on insulin resistance. In fact, the first line reads, "Insulin resistance in muscle and liver and B-cell failure represent the core pathophysiologic defects in type 2 diabetes."

Anyway, here's your link.
http://diabetes.diabetesjournals.org/content/58/4/773.full.pdf+html

In T2, the B-cell failure results from either pancreatic burnout or from glucotoxicity. Pancreatic burnout doesn't happen without increased need for insulin, which means you would have needed to have some kind of insulin resistance first. And again, glucotoxicity would have meant that your BG needed to be high before the B-cells died off.

When we learned about T2 in class, we learned something I'd never heard before, but it makes perfect sense. The reason why only 1/3 of obese people get T2 (as opposed to all of them) is because they have a smaller population of B-cells. Obesity does cause insulin resistance (and yes, there's a belief that insulin resistance causes obesity, but then it becomes a vicious cycle and obesity causes more insulin resistance), but most people are able to adapt because they can grow more B-cells. Some people are just B-cell deficient, and they are more likely to get T2. In fact, it's pretty much impossible to get T2 without this B-cell deficiency.

My guess? You're hereditarily B-cell deficient. It isn't T1, it isn't MODY, and it isn't T2. The only way in which your case is similar to T2 is that your body has fewer B-cells than the general population, but you got diabetes even though your B-cells and their insulin-making capacity aren't being strained by obesity.

As far as medication is concerned, I'd still recommend insulin. But I have to ask--what works for your mother? Because the chances are you have the same kind of diabetes as she does and your diabetes will most likely respond similarly to the same medications.

I took acarbose for a while when I was having ridiculous serial lows. (I used to be hypoglycemic, and during college application time I just hung out in the 50's and 60's and couldn't come up for days.) It helped, but not an awful lot. I don't know how well it would work for highs, but it's definitely not going to help your phase 1 response. If I remember correctly, acarbose works by slowing the absorption of carbs in your intestines. Therefore, it might help your phase 2 response, but it will only help your phase 1 response insofar as it can help your body preserve the insulin it makes. Diabetics lose the phase 1 response because their bodies are trying to maintain their fasting blood sugars. The phase 2 response is made of newly-made insulin rather than stored insulin, so it's possible that you can aid your phase 1 response a little with acarbose. (I hope that made sense.)

I think you need a second opinion, but I definitely wouldn't go for MODY testing just yet. First, it's a huge expense, but it might also be a useless expense. I'm pretty sure that none of the MODYs cause low fasting insulin, but I'll re-check and get back to you on that.

Happy holidays! I'm sorry you need to be going through this now...

4

I have to tell you, the tests pretty much indicate you are not a LADA/T1. And while you might have another specific diagnosis it will be costly and of questionable value to pursue it. As you are probably aware, Type 2 diabetes is a diagnosis of exclusion. And you have just excluded the major specific diagnosis leaving you with the diagnosis of T2. But T2 is not a single condition all characterized by obesity and slothiness. It is a spectrum of conditions. And people of Asian ethnicity are often diagnosed with T2 despite being thin. Your doctor's claim that you are not insulin resistant is also not well founded. Simply looking at and declaring you insulin sensitive in the face of what you observed is nonsense. If you were really insulin sensitive do you think your blood sugar would be surging so high after meals? If you really want to see whether you are insulin sensitive do a stimulated c-peptide, if your c-peptide soars then you are likely making plenty of insulin but are insulin resistant. And the fact that you have a remnant phase II is irrelevant to insulin resistance.

Your doctors prescription of Acarbose is likely no useful. Acarbose blocks the absorption of carbs which is useless with a low carb diet because guess what you already dropped your carb intake. And while metformin does increase insulin sensitivity and blocks carb absorption it also downregulates production of glucose in your liver a big factor for many people with T2.

You would be prudent to get a second opinion.

ps. And your c-peptide needs a concurrent blood glucose to be interpreted properly.

5

I’m auto antibody negative also but have the 4th most common gene that predisposes for T1, low c-peptide, low insulin measured during OGTT, low BMI, other autoimmune issues, and a family history of adult onset insulin dependent diabetes, so my endo thinks it is probably gradual onset T1D. I just started Novolog bolus with meals and I am not insulin resistant at all, my I:C ratio is 1:25(ish) still working it out. I will say that I had to take several orals before being given insulin. So far when I get my timing and carb counting right I’m seeing good results and no major lows. If a patient is going over 200 with moderate carbs and is willing to educate themselves and inject insulin I wish doctors would trust us to take control of our health without making us jump through a bunch of hoops. We shouldn’t have to beg for insulin or good healthcare but for those of us who are not typical T1 or T2 it’s a long road and usually quite a few different doctors before we get the support we deserve. Keep at it, and happy holidays to you too! Personally I think how diabetes is typed is outdated.

1 Like
6

@Brian, The c-peptide of 1 indicates the insulin production is low, The early T2's have higher c-peptide. The high sugar could be a consequence of low insulin.
He can get another c-peptide test just to be sure it was correct.
I agree that test for Mody will not be much useful.

7

A c-peptide of 1 ng/dl in normal range with a blood sugar that is 80 mg/dl tells you absolutely nothing about either insulin sensitivity or insulin deficiency. A c-peptide of 1 ng/dl with a blood sugar of 200 mb/dl indicates insulin deficiency. An elevated c-peptide with a normal blood sugar indicates insulin resistance. Without knowing the blood sugar reading at the time of the c-peptide test the results are inconclusive and even if the blood sugar is known it won't say anything about insulin sensitivity.

As a T2 in my case the c-peptide results have been all over the place, the last test the c-peptide was 0.4 ng/dl at a normal blood sugar indicating insulin deficiency.

8

Oh my gosh, yes! It's obvious that orals and I aren't working out too well, but I just keep getting switched to different ones. That's extremely annoying for many different reasons. But I also have to ask--if I have normal fastings and only eat carbs once or twice a day, then why am I taking meds that stay in my body all day, don't work that well, and have side effects when I am willing to put in the work for insulin?

The medical field is afraid of lows, and the vast majority of patients are not willing to put in the time and effort to deal with insulin. You only need to look at the statistics for ER admissions for lows to understand their worry. While I understand it, I think that if a patient is willing, able, and has a history of being compliant, we should be allowed to try insulin with the option to go back to orals if we decide it's too much for us.

9

Thanks for the info about c-peptide tests.
In the end its all about sugar control. If you can do it by diet/excercise or Oral meds or Insulin or any combination of the 3.

10

That's the thing, though--if the OP has insulin deficiency, he should be on insulin. If it isn't proven, he won't be given insulin until after he's tried a series of oral meds and wasted time, money, and frustration trying to make a treatment that is inappropriate for his condition work.

However, Brian, you raise a good point. Sey, might I suggest, an OGTT? That will stimulate a nice, high BG to test your C-peptide levels. The same could probably be accomplished by a C-peptide after a high-carb meal, but the OGTT simplifies a lot of variables.

11

Hey Sey:

I've followed your posts with great interest and greatly empathize with what you're going through. We've all been there - the WTF, why me, what's going on, how did this happen phase. I totally understand your desire to get a clear picture if you're type 1, type 2 or something else. However, now with the benefit of hindsight and a little experience, I recommend you start treating this aggressively now and worry less about nailing the type of diabetes right away. There are therapies that are proven irrespective of what type you are.

Let's look at the positives: you've identified impaired glucose control very early. Many learn of their diabetes in an ER setting, so consider yourself very lucky. For whatever reason, one thing is very clear: you are not able to properly control your glucose levels with endogenous insulin production. However, you clearly have substantial beta cell function left. One of two things have happened - or maybe even a combination of both. Either you are suffering from slow onset LADA and your beta cells have been slowly getting destroyed by your immune system, or you've developed insulin resistance which has caused sustained high blood sugar, and the resulting glucotoxicity has driven beta cell destruction.

Whatever the catalyst, one thing you need to do right now is PROTECT YOUR REMAINING BETA CELLS!. Here are the steps you can take right now - irrespective if you're T1/LADA or T2:

  • Following a low carb diet is a good first step. As you know, the logic is simple. Low-glycemic foods require less insulin to normalize and hence you're minimizing the strain on your already impaired endocrine system.
  • Consider a low-dose basal insulin regimen. This will shore up your already taxed beta cells and allow them to better work at normalizing post meal blood sugar. A morning Levemir or morning/evening Levemir injection from a pen is less hassle than brushing your teeth.
  • Consider starting on a low dose of extended release Metformin. This is an amazing first line diabetes drug used both by T1's and T2's. It improves your insulin sensitivity (allowing your beta cells further relief) and suppresses your liver's release of excess glucose. The extended release formulation usually mitigates any GI side-effects, which is the most common complaint about Metformin.
  • Consider an Incretin mimetic like Victoza or Byetta. You mentioned you have no 1st phase insulin response left. I'm a T1 LADA with less than a 0.1 c-Peptide level and I can still count on Byetta to light up my remaining beta cells well enough to cover a low-carb meal with no exogenous insulin and perfectly mimic a 1st phase insulin response.

Whatever the cause of your diabetes or what type it is, you are still currently at a stage where you can nearly flat-line your BG curve using some or all of the tools I listed above. This is critical, because it is the large swings in BG levels that will result in continued progression of beta cell destruction and sustained high BG levels that will ultimately lead to the terrifying secondary conditions we’re all desperately trying to avoid.

All the best,

Christopher

12

Sey - Your case is interesting but doesn't give you any certainty. I remember reading on this site that some major diabetes clinic starts T2Ds on insulin early, if not immediately. I think this reference is to Joslin, if memory serves me.

If you're OK with going through a series of medical attempts to find an oral agent that works then that appears to be where your doctor is heading. If you think that insulin is more appropriate then I'd confront your doctor or simply find one willing to prescribe it.

I'm a T1D so I was started on insulin immediately. I'm likely LADA, diagnosed at the age of 30. I was not thin but was also not overweight. There were no antibody tests as this was 1984.

Knowing how well insulin works for me, I'd be tempted to go the insulin route. Insulin is very effective and dosing for a LCHF diet is much easier than the standard American diet which is crazy high with carbs. From my single perspective, I think doctors are overly fearful of hypoglycemia. They have reason for some of this but they should recognize that for someone like yourself, willing to do the work, it's a great and highly effective tool. Better blood sugar control now will pay dividends for many years to come. If I were you, I would worry about the damage that will result with delaying an insulin start for a few years.

Many people report that going on insulin after years of delay caused by their or their doctor's reluctance to start insulin, find great relief once they start it. They rediscover an energy they lost.

It's your choice, of course. You have more background and info than most patients. Why not use that knowledge to make your life better? Good luck. You are living your diagnosis story right now, one I think you may be telling to a few patients in the future!

13

The easiest, cheapest way to diagnose insulin resistance is to borrow a CGM, get it settled in for a few days, then spend a day with an insulin injecting buddy and "borrow" some humalog (etc.) to see what it takes to control BG.

This is also a very dangerous way to do things if you and/or your buddy don't know what they're doing. So I'm not advising doing this.

Regardless, it will be very obvious if there is bonafide insulin resistance or not.

14
If a patient is going over 200 with moderate carbs and is willing to educate themselves and inject insulin I wish doctors would trust us to take control of our health without making us jump through a bunch of hoops.

Hear hear!

15

I guess I don't understand all the effort of trying to find out if you are Type 1 or 2, simply because if you need insulin, you need it. As a Type 1, if I ate 30g of carb with no insulin, I would be around 250 two hours later. But others would be higher or lower. That's a modest amount of carb, so if you need to supplement with insulin at mealtimes, then work that out with your endo. Maybe you could use a fairly high insulin to carb ratio of 1:15 and see how it goes. Are you not on basal insulin yet? That should be the first step for Type 2's who are still a little high, then once you do some fasting basal checks to make sure it is stable, you can start checking to see if you need it for meals as well. Lots of Type 2's take insulin, even if they still make some of their own. But an A1C of 6.0 is phenomenal for anyone with either type of diabetes, trust me.

16

Everyone has good advice. I personally think key is finding the tools that work and allow you to control your blood sugars and get on with your life. What type of diabetes doesn’t really matter. … and yes, you are not typical. … but you do seem to have lower insulin levels. A glucose tolerance test treating both glucose and insulin levels may be revealing.

I think a trial of metformin maybe? and insulin to cover meals. … Read Bernstein on using insulin as he goes into great detail.

I don’t know what type of diabetes I have. … but I do know that metformin did nothing but an insulin and low carb combination work very well.

We each have our own diabetes to manage and we are all individual. …

17

Too much weight is put on antibody testing. Lots of T1's do not test positive for antibodies. By twisted logic of many this means they are not T1. But common sense tells the story different.

If it looks like T1 (high bg's, skinny guy), and quacks like T1 (low C-peptide), then it is T1.

Probably real early T1 and you may not "need" insulin for a while, but there are good arguments to use small doses early on, kinda like a T1 in honeymoon is usually recommended to continue using small insulin doses.

Please please google or look up in your medical textbooks, the T1 honeymoon. That’s where you are now. And you might stay there for years.

18

Sounds awfully similar to how I was diagnosed just over a decade ago.

Although it may be counterintuitive, it's not clear the diagnosis actually matters that much, so I wouldn't splurge for the anti-body testing, I don't think that would change your treatment approach at all.

Personally, I would get on a basal insulin and probably also a bolus insulin, which is what I did within the first year of being diagnosed, after briefly taking a sulfonylurea. Basically, your goal is to preserve beta cell function as long as possible. I still have some beta cell function more than a decade later, albeit a bit less, and it makes a huge difference to my control/quality of life.

19

I would suggest the poster follow up with doctors who study this. every cpeptide fasting test I've done, it's ALWAYS recommended blood sugars be below 200, if they're above 200 they won't do the test. too much information can be confusing.

20

You’re right. The whole concept is somewhat silly to me. People can be also be antibody positive and never get type1 diabetes. logic thus dictates that people can be have antibodies and be susceptible to type 2 diabetes… But we live in a world where everyone wants their own specific label, their own black and white definition, even their own acronym, where the realities include many shades of gray. Best of luck Sey. You don’t fit into a perfect prepackaged definition of diabetes.-- neither do I-- that’s not a bad thing.