'Can't Decide what Type' Diabetes

Type 1 and LADA
1

TL;DR I was diagnosed type 1, changed to Type 2, changed back to Type 1, and now my labs look Type 2ish again over the course of 20 years. Anyone have any idea why my body is a jerk and can’t pick a diabetes type to torture me with?

Hi everyone- it has been a very long time since I posted in here. Lots of things happened since then- My dad passed away from ALS, I finished my Masters and my PhD, and I started a new postdoc. I also, in the past year or so, developed amazing control of my type 1 diabetes. As great as that sounds, it has caused a lot of problems, and I’m hoping maybe someone has seen something similar and has some advice.

My backstory: I was originally diagnosed type 1 in 1999 after being in DKA with a glucose over 800. I was on insulin for a couple of years, when I started having near constant lows. The new doctor I had decided to run additional tests and discovered I had a normal c-peptide, no antibodies, and a normal(ish) A1c at 5.5, so he changed my diagnosis to type 2. I did okay (A1c under 6) for a number of years, until 2010 when my A1c began to creep up. I was placed one type 2 medication after another (Metformin, Duetact, Actos, Januvia, etc) and continued to have trouble keeping an A1c under 9. I went back to school and started seeing a nurse practitioner who placed me on the max dose of metformin and thought I was just being non-compliant. In Jan. 2016 I developed a kidney stone and a urinary/kidney infection and went to the ER, where they diagnosed those and immediately placed me on a heart monitor because I was in lactic acidosis and they were afraid my heart would stop. At discharge, I was placed on Lantus and told to not take metformin again and to see an endocrinologist because they thought I had type 1, not type 2.

Present day:
I went to the endo (who is amazing btw), and she did all of the tests- my c-peptide was below normal limits, I was GAD positive, and she re-diagnosed me as type 1. About 6 months ago, we decided to retest everything because I was only using a basal insulin dose in my pump. Also, we had added Ozempic for insulin resistance and I had lost 65lbs (Ozempic is my miracle drug apparently) so we were curious. My tests came back normal. Normal c-peptide, zero antibodies, normal(ish) A1c at 5.4. I look like a pre-diabetic/type 2 again. Has anyone else seen or heard of this, or have any idea what my body is doing? I don’t even know anymore and it is making me absolutely batty.
On top of this, now I have started a new job and my prescription insurance doesn’t want to pay for my type 1 meds because I don’t look like a type 1, and they won’t pay for the Victoza (replacing the Ozempic they don’t cover) because I’m not type 2. Essentially leaving me in the weeds of not being able to treat my diabetes until I’m once again facing the consequences.

*edited because holy run-on sentence lol

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Nice to have you back amongst us, and jeez what a nightmare. The prescription coverage confusion puts a damper on recommendations, but a couple of questions:

  • What was your original insulin regimen? 1999 kinda puts you tail end of R/NPH, so I’m guessing some version of Lantus/Novolog basal/bolus MDI? The latter would be easier to adjust for persistent lows, so I’m curious about that.
  • I’m guessing from what you’ve told us that you don’t have a CGM but it would sure be useful to see what your tracking is like if you did. It’s possible to have your endo set you up with a physician-monitored one for a couple of weeks.
  • Those contradictory test results are baffling, though it’s possible to have a negative GAD antibody test and still have T1. Not sure what to make of having positive and then negative results though.

Sorry not to be able to be more help, but hopefully someone else may have better answers!

3

Wow. I know LADA can take years to slowly lose the ability to make insulin. Most need insulin within 3 years of diagnosis, but that doesn’t tell the story of how long you have had it. It took over 8 years for me to be diagnosed properly and I know of someone it took 12 years.

There are several theories out there that once you start insulin you actually are protecting the insulin that you still make, so your body is able to make more because it’s not as stressed. So having the lows might be from not needing to take as much insulin as when you first started and your body sort of stabilized for a few years.

The antibody thing is a little weird, but maybe not. The original test I’m just not sure. But if you showed up positive, it means you had them (unless a lab error but…) but they have said that eventually the antibodies can go away over time.

The A1c doesn’t really mean anything in regards to type 1 or type 2, that’s more about control.

But now a normal c-peptide…no idea. There are several odd subsets of diabetes because they really don’t know all yet. But steroids do cause diabetes in some, type 1 or type 2. Trauma to the pancreas will push you into diabetes sometimes too. But they have known that sometimes the pancreas starts working again in those situations. So maybe your panceas as the burden is taken off of it, is recovering and trying again?

But if your endo is nice, tell her the problem with your insurance and ask her to definitely diagnose one of them, (whichever you prefer hopefully) so that insurance covers you for treatment of one of them. It can be switched later, notes in your chart can be made. Usually I have found the nice endos want to be cooperative in supplying you whatever meds you need and to get them covered.

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I am type I with type 2 tendencies. I was diagnosed type 2 by my general practitioner and after 2-3 years I went to an endocrinologist who explained that MY body was slowly destroying the beta cells in my pancreas due to an autoimmune function of my body and my beta cells were almost gone and I could now be classified as type I. He explained that auto immune diseases are not fully understood and sometimes just go away for a while and then come back again. Metformin did not work for me either. I am now ‘on a pump’ with a CGM system. My A1C is down from 14.1 to 7.1. My insulin resistance is such that at 200 bg I need 1.8 times more insulin than at 100 bg. At 300 my boluses used to be 3 times the bolus when eating at 100 bg. I am waiting for the present “Looping” technology to go mainstream, hoping I will no longer need to calculate and add my insulin resistance into my boluses manually. Every ONE of us is different. What works for one most likely won’t work for another. Keep an open mind. Consider ALL the possibilities. Learn about other possibilities and read. Please consult with your endocrinologist BEFORE you make any changes to your diabetic routine.

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Its possible that type 1/type 2 categorization isn’t super helpful in your case.
Perhaps you, instead, refer to yourself as ‘insulin dependent’ or ‘not insulin dependent.’

It’s possible that you should keep 2 sets of med tags on hand and you can alternate between wearing the appropriate one as things develop. Dont have them engrave type 1 or type 2. Have them engrave ‘insulin dependent’ or ‘not insulin dependent’ and the medications you use.

If the insurance company software can’t file you into an appropriate box - that’s their problem, not yours. You got enough problems. Tell them that you are ‘Victoza dependent,’ and however they choose to file that diagnosis in the paperwork is up to them. Software should not dictate/define the law and medical treatment. You fixing their inadequate company software and business process is not part of your patient responsibility. That’s not part of the deal. I know that, in reality, we do a lot of that. But, it puts an incredible burden on people with disability to have to fix company business practices and software. Its ridiculous.

Who is your insurer? Where are you located?

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Often there is a person at your work who will fight out erroneous billing and problems with the insurer. You want to talk to that guy. Find out who he is. Your gonna need to know that guy. You need to send that guy gifts at Christmas. He’s your guy. You two need to do biz.

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My situation is the same, yet not as acute as yours, since diagnosed in 1990 at Joslin-Boston. 3-4 years ago or so they decided to finally once and for all type me and decided based on all my 25+ years of records and data at that time that I was actually MODY but could not order the test as it is expensive and for them to order it, diabetes has to run in my family. Neither my parents, children, grand children etc. are diabetic so they said they would put me down as MODY.

I could afford the testing so agreed to pay for it to have this resolved once and for all. The testing was done by a lab tied into the Mayo Clinic and low and behold, after extensive genetic testing I did not have any of the MODY markers, so here I continue year after year not knowing and really caring what my type is as long as I can keep it under control.

I dose Humalog only in 0.1U with a digital pen not generally available in the US and am able to keep my A1C in the 5-5.5% range with a standard deviation of 20 or less and time in range 97%+ My I:C ratio is 1:3 and eat, dose and exercise based on my Dexcom CGM.

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@CJ114 beat me to it, but MODY was my first guess, too. I’ve been really curious about it lately, because it’s strangely more prevalent than previously suspected, and unfortunately a lot of doctors don’t even know what it is. It’s not one of the common three types they ARE familiar with.

MODY is just a single gene anomaly . One out of 11 of the usual genes associated with diabetes. Which basically means it can present in 11 different ways, and respond 11 different ways to tests and treatments. It’s kind of the catch-all for unusual cases that break the mold.

My other thought is that maybe you are LADA, which can demonstrate with a very slow onset, but with other variable factors causing insulin resistance flare ups, like stress related to school, inflammation, infection, another yet undiagnosed auto-immune disorder, etc… So your as-of-yet-mild diabetes presents more severely during those times, and reverses itself when the other conditions improve.

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Joslin claims I am not LADA or any one of the other dozens of types and subtypes they have among the thousands of their patients. They are totally stumped but not concerned as I can keep it well under control.

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@CJ114 oh, I meant that directed at the OP, not you. I was just acknowledging that you already voiced the thought I had while sharing your own experience.

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It is possible to be both type 1 and type 2.

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There are some oddball types of diabetes, for example, ketosis-prone diabetes, or Flatbush diabetes. One oddball type produces extremely high BG levels, but when the levels are brought down the person can control without meds. See if you can see an endo who specializes in diabetes, maybe contact Dr Bernstein or Joslin Diabetes center. Let us know.

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It is possible to be type 1, and to also have insulin resistance. I was type 1 for 53 years and then diagnosed with insulin resistance in 1998. I had the autoimmunity test, ai am autoimmune. My C-peptide test result was less than 0.01. Those tests clearly show I am not type 2.
Have you had those tests?

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C-peptide should have been done. Without it, they are just guessing.

John