Double Diabetes Trouble

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This was originally posted to my blog, Diabetes Odyssey.

It’s time to talk about something I’ve been skirting around. We all know I’ve had type 1 diabetes ever since I was 8 years old. But do I need to face that I also have type 2?

Do I?

It’s not the most uncommon thing. A lot of type 1 diabetics develop insulin resistance. Insulin resistance is what defines type 2 diabetes. So are these insulin resistant type 1’s also type 2’s? This is often called double diabetes, and sometimes type 3 (but this is a title that scientists want to give to Alzheimer’s since Alzheimer’s is caused from insulin resistance in the brain?..but I don’t know anything about this topic).

People will argue that the causes for insulin resistance in type 1’s is not usually the same cause as in type 2’s, though. Many type 1 diabetics experience short spurts of insulin resistance now and then. But it goes away when the underlying cause (illness, stress, menstruation, etc.) goes away. But sometimes it doesn’t go away and the type 1 now has to live with type 2 as well.

Does having type 1 diabetes increase one’s risk of developing type 2? I doubt it, but I think I’ll study up on this more.

Believe it or not, this is a bit of a heated topic. Many people believe that type 1’s with insulin resistance are not sufferers of type 2 as well, but that it is just a side effect or another complication of type 1. But there are those that believe both types can occur in the same person.

Well, let’s talk about my experience. This is MY blog after all and I have never intended it to be so much an educational blog as a personal experience blog.

I was diagnosed with type 1 diabetes at age 8. I come from a family of type 1’s, there are six of us total. Type 2 also runs on both sides of my family, mostly older males.

For as long as I can remember I have always required more insulin than my brother or father. This was always blamed on my own personal eating and activity habits. But at times it was blamed on the fact that I’m female and for some reason that makes a difference.

I didn’t know it at the time (and still can’t prove it) but I’m sure that the time I developed PCOS was when I entered puberty. PCOS causes insulin resistance. At the time I entered puberty I began to gain way too much weight and also began to need even more insulin.

I have always had trouble keeping my blood sugar down. Whether I was trying or not to take care of my diabetes, my blood sugar was always stubborn.

Nobody ever considered I might be insulin resistant or might have another issue like PCOS. They were content to blame my poor control on me and only me. I was simply a bad diabetic.

Shame on me.

Insulin resistance didn’t get mentioned at all between me and any doctor until 2007. I was experiencing really bad calf pain whenever I walked and I also had some weird skin discoloration on my shins and forearms. I went to my primary doctor and among other things she said I was probably insulin resistant (type 3, she called it). Nothing was done about it at the time.

Between 2007 and 2014 things just spiraled farther and farther into hell. My weight was stuck at a too high number, but at least it wasn’t rising. When I made a point to be really super active I would manage to lose a few pounds. But I could never keep up with that kind of activity so I would just gain again.

I had no insurance and no money so checking my BG’s and seeing a doctor of any kind was out of the question. My diet was carbolicious because carbs are cheap and easy…the whores of nutrition.

In 2013 I got insurance once more and immediately went to the doctor. During this year I would end up having triple bypass heart surgery. Heart disease is a common complication of uncontrolled type 1 diabetes, and also of long term insulin resistance.

I remember a lot during 2013- now, being asked by several of my doctors if I am type 2. I always wonder why they ask me this when they know I’m type 1.

It wasn’t until the beginning of 2015 that I finally saw an endocrinologist who was willing to look at the whole picture, run tests, listen to me, and come to a real answer and develop a plan of action to fix my lifelong struggles with weight and high BG.

It was discovered that I do have PCOS - I was put on Metformin and birth control pill.

Since I’ve been working really, really hard to get my BG’s under control my insulin resistance has become obvious. No question about it!

Because I’m not overeating on a regular basis, I keep a low calorie and low carb diet, I should not need much insulin and I should be losing weight!

Nope, I still need tons of insulin to keep my BG normal, and I’m gaining weight!

My doctor agreed to increase my Metformin dose, and put me on Farxiga (I thought she wasn’t going to order it yet, but she did).

So, the evidence suggests I have always been insulin resistant. But we can’t be sure because for the first 25ish years of my life with type 1 I was rebellious and didn’t try to take care of myself, so the evidence is muddled.

In any case I know now what my trouble is and it feels really good and hopeful to finally have answers and be doing what needs to be done.

I really hope a few months from now I can be writing about my huge weight loss and wonderful A1c!

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Wonderful post, Tamra…“Whores of nutrition”----great description of carbs. Looking forward to good news for you!..Blessings

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There are so many misconceptions about diabetes in the world, I hate to see us volunteer for more. I don’t like the term “double diabetes” because it further muddies an already confused distinction in the public’s mind between T1D and T2D. Now I know that T1Ds can become insulin resistant because it happened to me.

But I am a T1D and I will never migrate to T2D nor will anyone with T2D move to become a T1D. Just because a T2D takes insulin does not make them a T1D. The source and path of the two diseases are different. T1D is an autoimmune disorder while T2D is known for a constellation of conditions including insulin resistance and metabolic syndrome.

“Double diabetes” is a nice alliterative term and all diabetes feels like double trouble but I think using this term only makes things more complicated for us. That’s my 2 cents.

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I don’t entirely agree that there can be entirely no progression from one to another— but I agree it’s a really poor concept… I think that applies to the whole type 1 vs type 2 model in general too though… Black and white concepts in a world with many shades of gray.

As far as someone having “both” diabetes… This doesn’t make sense. A person has diabetes. Diabetes is the disease, types are subcategories within how that one singular disease is defined— and with all diseases the way they present can’t shift over time… This doesn’t make it a different or an additional disease.

But just for conversation who’s to say that someone with insulin resistant type 2 diabetes couldn’t later experience an autoimmune response that would have given them type 1 diabetes by affecting their insulin producing ability if
they weren’t already type 2… And vice versa…

I don’t think we can ever really understand any of these concepts if the world continues to frame every discussion about diabetes within these ridgid boxes of “type 1” and “type 2”

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That’s my feeling for the most part as well. And this is why I mentioned at the beginning my hesitation to bring the term type 2 into my description of my diabetes.

I prefer to just say I am a type 1 diabetic who also happens to be insulin resistant.

Also because the cause of my insulin resistance is probably (at least mostly) due to having PCOS.

Also my endocrinologist has not used the term ‘double diabetes’ with me. She simply diagnosed me with insulin resistance.

I don’t care what it’s called. I’m just glad I’m finally getting it taken care of. :smile:

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Exactly. I have realized, especially in the last two years, that there are so many differences between each individual diabetic. The disease is not entirely predictable and every little thing in life has an influence on it. So there is no black and white about it. But so many people, even doctors, want it to follow a very specific law that never has and never will exist.

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If you don’t mind, Tamra, I’m going to quote you on this when the time is right:

“Carbs–the whores of nutrition.”

I think my 13-year-old Type 1 daughter will find this phrase more palatable than my usual “Carbs are kinda evil.” or “Too many carbs are bad for us.” Those two sentences usually set her off on a rant consisting of “Carbs are NOT evil. I don’t need you going all LCHF on me, OK?”

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I was type 1 for 50 years in the mid 1990s, and then I switched from animal insulin to synthetic insulin. I had never been more than 5 pounds overweight prior to that time. The synthetic insulin led to my gaining weight, even though my diet and exercise had not changed. In 1998 I had gained more than 50 pounds, even though I had reduced my carb intake by 30%. That was when my doctor diagnosed insulin resistance (IR). He prescribed Avandia, and did not believe Metformin was appropriate for a type 1. I stopped gaining weight, and gradually lost 30+ pounds, but I was still using ore insulin than I had before the weight gain. I needed to lose 20+ more pounds, but it was not happening. My IR had improved, and I started seeing an endo who approved my using Metformin. While using 2000 mg of Met each day for one year, I lost the rest of the weight I had gained. My IR was minimal, and I stopped the Met. About a year later (2014), I started gaining again. I resumed taking Metformin, 1000 mg per day. That is my present dosage, and I am only 5 pounds overweight, and eating an average of 150 carbs per day.

There are no other type 1’s among my relatives, but there have been four type 2’s. I think I have the type 2 gene, and that is why the weight gain caused my IR. I am autoimmune, and my C-peptide is less than 0.1, so I cannot be type 2. My sister gained a lot more weight than I did many years ago, but she is not type 2. Her A1c is in the high 5’s. I was the unlucky one, having type 1, and IR.

The definition of ‘double diabetes’ is confirmed type 1, with IR. A double diabetic is not T2.

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