What. Just. Happened: The (world’s greatest) Endocrinologist (Part 6)

Part 6.

For Part 5, click here. 

For Part 4, click here.

For Part 3, click here. 

For Part 2, click here. 

For Part 1, click here. 

I have the world’s greatest endocrinologist. She is the world’s greatest endocrinologist for a million reasons; many of which you will hear about as I continue with this narrative. Of all the people who I owe a huge debt of gratitude to throughout this experience, Dr. M sails to the top of the list. Starting with this:  almost a week after I had been diagnosed with diabetes, it was Dr. M who finally told me my type.

I arrived at her office a little after 11 AM on Tuesday. My blood sugar, the dozens and dozens of times I had tested it in the previous three days, had been high, so high, like over 250 high, which, although I was still new to diabetes, I knew was bad. It confused me – I was taking insulin. I was eating the recommended number of carbohydrates at every meal, just like they’d told me at the hospital. And, although Dr. Smug would probably have been shocked to hear it, I wasn’t shoving bagels and donuts into my face at every meal – I was making every attempt to eat foods that, according to the internet research I was doing, would convert to glucose slowly into my bloodstream, wouldn’t cause the blood sugar spikes that simple carbs do. In essence, my life had pretty much done a 180 from the way I was living it the week before – good, low GI foods, no more juice (the cravings were GONE! so weird…) and, you know, I was taking insulin. SO WHY WERE MY NUMBERS SO BAD? It was maddening. I was confused and aggravated and, you know, still pretty fucking overwhelmed.

Living with diabetes for five days had sucked monkey butt.

“Well. You’ve had quite a week, hmm?” she said to me, as I sat in her office on that Tuesday morning.

Meh. I suppose.

As she pored over the dozens and dozens of test results and doctors’ notes from the hospital, I waited, nervous. I didn’t want to hear more guesses, I wanted answers. If one more person told me what I “probably” had, I was “probably” going to put my fist in a wall. She read. I stewed, preparing myself to suggest what Dr. M could “probably” do if she told me what it “probably” was.

However, to my surprise, there was no “probably”. She finished looking over the charts, looked me straight in the eyes, and delivered the first definitive statement I’d heard in at least five days.

“You have Type 1 diabetes.”

As I recount it now, it sounds like some kind of dramatic moment, like one of those moments that in a movie would be accompanied by a surge in music and a tight in on my face as I processed this stunning revelation.

However, that’s not actually how it went down, because at the time, although I was impressed that someone was finally giving me an answer that didn’t involve a wavering “probably”, I just didn’t believe her.

In the past six days, dozens of doctors had already suggested to me that my diet and lifestyle choices could very well have led me directly into DKA. It was probably fair to say that I had never felt worse about myself, my body, my health. If I normally went about my day with that small ticker of “You’re fat, you’re disgusting, you’re lazy” scrolling through my head, it had, by this point, transformed into a full out ticker tape parade, with several high school bands playing the “Jessie is a worthless fatass who deserves what she got” theme song.

But Type 1 had nothing to do with diet and lifestyle choices. It didn’t make any sense. It was impossible, impossible, impossible for me to consider that my fatness, my utter lack of “willpower”, could have nothing to do with the medical mess I now found myself in.

Type 1 diabetes struck randomly. There was no known cause (and no known cure).

plus, remember this?!
plus, remember this?!

It couldn’t be as simple as Type 1 diabetes.

As it turns out, it wasn’t. But more on that in a minute. First, here’s how Dr. M knew I was a Type 1:

As I mentioned in my Type 1 v. Type 2 rundown, Type 1 diabetes develops when your immune system turns on you for unknown reasons. One day, it decides the beta cells in your pancreas, which make insulin, are foreign invaders, and it sends antibodies to kill them.

Science has, most likely, yet to identify all the different antibodies that do this dirty work. It’s identified at least three, though, and most likely in the coming decades as Type 1 diabetes research advances, it will identify even more. However, the three most common are known.

When someone presents with DKA, then, or when someone is at high risk for developing Type 1 diabetes, a doctor can run a test to see if any of these antibodies are present in their system. These antibodies, from what I understand of them, are strange little buggers. Most people don’t have them. Some people might have them, but they might never “activate” at all – they just swim around your system benignly. And there’s the people (like myself) who have them, active and all.

The “some tests” that resident mentioned to me when I was in the ER and it “might be type 1” included, as you might have now guessed, a test for any of the antibodies that they know activate in Type 1 diabetics. In my case, I tested positive for the GAD-65 antibodies, incidentally the most common type of antibody they find when adults over 25 develop Type 1 diabetes.

I’d imagine that if I had been normal weight when I was hospitalized, that test alone would have been enough to convince everyone I came into contact with that I was a Type 1 diabetic. However, I wasn’t normal weight. And most people sure weren’t convinced.

But then there was the DKA. As Dr. M explained to me, it was pretty rare to see a Type 2 diabetic develop DKA; you see it much more with Type 1s. Not that it is impossible to see in a Type 2, though; but when it does present in Type 2s, it tends to present alongside an infection or after decades of rising sugar levels. Generally, a Type 2 diabetic will get DKA if their body is also fighting something else – it’s working hard to fight off an infection, say, so it has less of a handle on controlling sugars.

That wasn’t all, Dr. M explained. As I now knew (and as you all know, too, if you’ve been able to follow any of my complicated Diabetes gamebreaks!) while Type 1 diabetics start to lose the ability to produce insulin as soon as their disease presents, Type 2 diabetics generally maintain their own insulin production for decades – or, if they’re vigilant, for life. Since DKA is, essentially, your body going into crisis mode because it can’t access glucose, a Type 2 diabetic’s body will attempt to fight off DKA by producing more and more insulin. A Type 1 diabetic’s body, while in DKA, will not be able to produce much insulin at all. (Because a Type 1 diabetic will never be able to produce insulin.)

Incidentally, doctors also have a test that can show how much insulin your body is producing. They measure the levels of a protein known as c-peptide that’s also produced by your pancreas when it makes insulin. Normal c-peptide range is from 0.8 – 3.5; the more insulin in your body, the higher the c-peptide.  A Type 2 diabetic in DKA is likely to have a pretty high c-peptide level – their body would be trying to fight off the DKA by producing as much insulin as it could.

Have you kept all that straight? It’s complicated as hell, I know. But think of “insulin” and “c-peptide” as basically the same thing. The higher your blood sugar, the more insulin (and, thus, c-peptide) you should have, if you’re not a non-diabetic or a Type 2 diabetic.

When I was admitted to the hospital, sitting on a blood sugar that was probably in the 400-500 range, my C-Peptide came in at 0.6. That’s a very high glucose and a very low c-peptide.

For all these reasons, Dr. M explained, I was a Type 1 diabetic.

And yet, I still wasn’t convinced. Hello, I’d had days of people convincing me to be unconvinced!

Couldn’t it still be Type 2, though, I asked her? I had heard that after recovering from DKA a Type 2 diabetic would generally regain ability to make insulin – wouldn’t it be possible that in the coming weeks or months I could do the same, thus proving this was actually just a freakish case of Type 2 diabetes presenting in a really unlikely way? (And wouldn’t she feel foolish, my question implied).

And she smiled sadly and conceded that, possibly, sure, possibly, there was an infinitesimal chance that, despite the c-peptide and the DKA and the GAD65 antibodies, for Christ sakes, sure, it could “just” be Type 2.

“…But it’s Type 1,” she finished.  

I’m not even sure what I was hoping for, at that moment. It had been a vile weekend – I think I was starting to understand, just a little bit, what it would mean to live with Type 1 diabetes. I was already over the injections, I can tell you that much. But was I yet “hoping” for it to be Type 2? No, I don’t think so. It was more that Type 2 made sense, made so much more sense than Type 1. A few posts ago I brought up the “randomness” of Type 1 diabetes in a fantasy I’d had about my parents’ friends judging what had happened to me. It was a stupid fantasy, and an incorrect one, but the fact was, it got one thing right. Type 1 diabetes is completely, utterly, totally random.

I could handle Type 2 diabetes, because it was embarrassing and (I use the word again, again) shaming in a way that I was familiar with. I’d spent 26 years ashamed of myself. It was a realm I was comfortable operating in. Type 2 diabetes would stretch the limits of my shame, bring them to new heights, but it was an escalation in what had been 26 years of logical escalations – from feeling chubby and uncomfortatble at elementary school to feeling positively disgusting and undesirable as a 20-something. It would make my life worse, so much worse, it would make me hate myself more, so much more, (and here I was, thinking it wouldn’t be possible to hate myself more), but in that grimness, it just made sense.

Type 1 diabetes made no damn sense. There was no world in which I understood why this had happened to me, or what I was supposed to even do with it. It was a new kind of grief – a kind of grief worse than the “type 2” grief I’d been feeling, alongside my shame, for the past week. It was the grief you feel in the aftermath of tragedy or death – why, why, why, why do these things happen? Why? Why?

There is no why.

Oh man. I thought 6 months of distance would be enough to recount this, all of it, with objective calm, and I am finding that is not the case today. Suffice it to say, it was a rough moment.

In fact, I’d stupidly thought that the “narrative” of this blog could end about here, but there is so, so, so much more to the story – so much more in so little time -six months, nothing, but there we have it: the clinical trial, more ketones, my hair, my weight, and, the latest development from just a few days ago – the second autoimmune disorder.

The hospital story is the one I like better – it’s so much neater, the way it begins with the symptoms and ends with me being discharged.

But this, this was the start to a new, messy, strange, awful story, one I am still living now and one that I will live from here on out. And while it started with “You have Type 1 diabetes”; while that launched the first chapter, nothing about this story is simple or neat.

Starting, it turned out, at that exact moment in Dr. M’s office.

Yes, I had Type 1 diabetes, but that wasn’t everything. Given my weight (ah, yes, this is familiar, my weight gets to come back into the picture, the shame is back, I understand this…), there was a very real, very major risk that I could have insulin resistance, as well. Remember insulin resistance from our Diabetes gamebreak earlier – the hallmark symptom for Type 2 diabetics? I MIGHT ALSO HAVE THAT. 

My pancreas was broken, my body was quickly losing its ability to make insulin, and at the same time, there was a risk that my cells were becoming, were already, insulin resistant, thus struggling to accept the insulin I would now have to inject into my body for the rest of my life.

I might, essentially, have both Type 1 and Type 2 diabetes. Yes, I MIGHT HAVE BOTH KINDS OF DIABETES. Or, as Dr. M more kindly put it, I might be a “Type 1 with Type 2 symptoms.”

See the problem was, it wasn’t 100% clear why my blood sugar was still remaining so very very high, almost four days after getting out of the hospital. There were, my endocrinologist explained, two potential explanations.

The first was something called “glucose toxicity”, and the basic gist was pretty straightforward – after something as “traumatic” as DKA, my body was going to have a pretty hard time, for as much as a month or so, controlling my blood sugar, despite the insulin I would be taking. Essentially, the really high blood sugar numbers might simply be a result of the shock of DKA. In this case, as my body recovered from the DKA, the glucose toxicity would naturally go away, and my body would begin accepting the insulin I was injecting without any problems. And my blood sugar would start being a lot more manageable.

The second option was insulin resistance. It was possible that, because of my weight, I had indeed developed this very problematic Type 2 diabetes symptom. In which case, as my body recovered from the DKA, my blood sugar would not especially go down, and would require other treatments.

Drugs. More drugs. The kind of drugs you give to Type 2 diabetics.

The number 1 drug that is prescribed to Type 2 diabetics (and many people who are prediabetic, and many people who don’t have diabetes or prediabetes at all), is called Metformin. It’s a heavy hitter in the diabetes industry, known primarily for decreasing insulin resistance.

However, it also increases ketones. No way I was going into DKA again. In this both my endocrinologist and I agreed. So rather than start me on Metformin right away, Dr. M urged patience – I was to keep taking insulin as needed, work with her to figure out exactly how much I needed to take, and, basically, watch and wait.

If my numbers started to come down in the coming weeks, perhaps it was simply “glucose toxicity” all along, and I wouldn’t need to be on additional medications. Perhaps I wouldn’t have “Type Both” diabetes. I would be “just” a Type 1.

I was to email her my blood sugar numbers. Every day. And she would read them, EVERY DAY, and reply with changes to my insulin dosing and suggestions for how to improve things. Have I mentioned I have the greatest endocrinologist in the world?

Not that this appointment had been that great. The appointment, like the weekend, had sucked a monkey butt. However, it was about to get worse.

“Let’s check your weight,” she suggested.

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