My diabetes misdiagnosis

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In 2016, at 26 years old, I was diagnosed with type 2 diabetes.

It turns out the last four years have actually been totally and completely wrong.

On August 4, 2020. I found out that I have LADA – Latent Autoimmune Diabetes in Adults.

Meaning, my original diagnosis shared some characteristics of type 2, but was not – it was autoimmune. I was never tested for antibodies, so I never knew.

Meaning, I have a form of type 1 diabetes. My body is attacking my insulin-producing cells slowly over time.

Meaning, one day, I won’t produce any insulin at all.

I know. What???

Buckle in for a long ride and a lot of emotions. This is an entire word vomit of the way I feel after having my diagnosis confirmed.

I starting writing this on the day I was diagnosed, and I’ve been processing the feelings for nearly three months.

My LADA and Type 1 diabetes diagnosis story + Type 2 Diabetes Misdiagnosis

First, what is LADA?

LADA is a form of type 1 diabetes.

LADA is an autoimmune condition.

People with LADA have a slower onset of type 1 diabetes and eventually become completely insulin-dependent when their pancreas stops producing insulin.

It can be misdiagnosed as type 2 diabetes at the onset, unless your doctor screens you with the GAD-65, IA2 or IAA and checks your C-Peptide levels, which point to insulin production.

People told me that this was possible – especially because of my diagnosis story

About a year into my diagnosis, I talked to someone who said my diagnosis didn’t sound right at all, that I should get the GAD65 test.

I asked a couple of doctors, but they shrugged me off.

“Your family history, and weight signal T2D.”

And because I couldn’t get my blood sugars under control I restricted.

And I cried over being a “bad” diabetic. And I felt horrible about myself.

I felt like such a hypocrite because I was trying really hard to live my best life with diabetes, and I was miserable, and really stressed about it.

I was so incredibly frustrated by not being able to get things right.

So I took that for an answer for a long time. I restricted my carbs, I over exercised to get my blood sugars lower. I drank crazy amounts of water.

And while that obsession was fine for my blood sugar in the short term (getting my A1C in the 6’s) I knew it wasn’t sustainable.

Nor was it good for my mental health.

And when I got my A1C results in June, I knew something else was up.

It feels like a tectonic shift when your whole life is about to change.

2020 has been a huge year of change for me.

I stopped being scared of just doing what I always wanted to do, so I quit my job, took a freelance gig to community manage a T2D app, set out to run my blog full time, and talk about diabetes and my life with it.

There was a point this year, where an article about my diabetes diagnosis ran in Yahoo Life.

I was so happy to get published in a big publication. It was exciting to share my story and know I would an audience to listen. I was even on the front page for a day (and it broke my website for a minute).

Then a cousin of one of my friends said the comments were absolutely horrible.

Against my better judgement, I looked.

More than 600 comments shamed me, ridiculed me, and told me I deserved type 2 diabetes because I was fat and looked unhealthy.

Reading mean comments about my type 2 diabetes diagnosis | The Hangry Woman

On top of that judgement, I was really fighting myself against falling back into a pattern of disordered eating and drowning in a cycle that made me feel like I was at fault again.

Everything within me wanted to fight every single one of those people.

I wanted to scream at them. I wanted to put them in their place. I wanted to find them on the street and be like “say your horrible comments right to my face.”

I got pissed off. I started digging my heels in through my diabetes advocacy.

I spoke over and over and over about how we were NOT treating people with T2D like second class citizens any longer.

I’d tell people to stop running people with diabetes over with the struggle bus because we’ve all been on it.

I told people if they said “insulin for all” they better mean people with T2D too because we also struggle with affording our insulin, PLUS all of the orals we’re taking – whether diabetes was our “fault” or not.

I railed against people for body shaming and holding weight over someone’s head as a reason for them “deserving” diabetes.

I didn’t sleep some nights. When my husband went to bed, I would try to fall asleep with him, but I’d end up tossing and turning, or staying up until the sun rose.

Rinse and repeat.

I was frustrated, upset, and I felt like I wasn’t doing a good job. I kept feeling like I hadn’t done enough.

I was at a point where I was ready to throw in the towel on myself.

I just didn’t feel like anyone heard me, or understood. I didn’t feel like they wanted to because I wasn’t their type.

Then, my A1C

From December of 2019, to June of 2020, my A1C skyrocketed from 6.5% to 10%.

What did I do?

Nothing that differently from what I had been doing.

Unbelievable. I was kicking myself when I got my results.

I went back into a cycle of blaming myself for what I thought was just me not doing good enough.

I was proving all of those people who left comments on my stuff completely right. Maybe I was lazy and doing a bad job taking care of my health.

But, during that period of time, I was the most focused I’d ever been on my blood sugars and diabetes management. My workouts were intense, I was eating salads for almost every meal and cutting carbs, and I was so angry about my results.

I was literally drowning.

My doctor then said the most wonderful thing she could have said in that moment.

“I can’t help you.”

As my primary care provider, she knew when to tap out, and when to refer me to someone else.

So that’s how I ended up sitting in an endocrinologist’s office learning that my T2D diagnosis for my age was unusual (like I thought and was told so many times) and I actually have LADA rather than type 2 diabetes.

I didn’t think I would ever end up here.

I never thought the doctor would tell me that I had LADA.

I never thought that I would have accepted a diagnosis that was wrong. And felt comfortable with it.

I never, ever thought I’d find a doctor who could give me the relief of saying “we figured this out.”

Things I can’t help thinking about

I can’t help but think about a few things.

How is it going to change the beautiful relationships I’ve built with my friends with T2D now that I know my diagnosis is closer to type 1 than it is to type 2 (that’s why they call it type 1.5 diabetes. You’ve got a foot on each border).

Are people going to listen to my pleas about embracing the type 2 community more now? Am I going to be treated differently?

Is it still my place to advocate for people with type 2? Am I doing a disservice to the community by vocalizing my frustrations about the way people are treated?

Why did my first doctor never test me for antibodies before confirming my diagnosis? Especially at my age?

Why did losing 30 pounds in two months not signal him to say “something else is up.”

Why was the assumption “you’re overweight, so you must have T2D” without the confirmation?

Why did it take 4 years for someone to finally listen to me and recognize that I was trying my hardest?

How many years has “uncontrolled” or “non-compliant” been in my chart for no damn reason?

Am I more at risk for complications now?

I don’t know. the answers to any of these questions. I probably won’t ever know.

I’m in the honeymoon stage

Righ now, I’m in the honeymoon stage – and still being treated more along the lines with my type 2 diagnosis.

I’m lucky that I’m still producing low levels of insulin. I’ll still take basal insulin and oral medication until my pancreas poops out and no longer produces insulin.

I’ll eventually progress to multiple daily injections, and stop taking oral meds when they don’t work anymore.

Maybe I’ll go on a pump, but maybe not.

With LADA it’s just about time.

Sometimes it takes people years from their LADA diagnosis to be full insulin-dependent. Sometimes it takes months.

Right now, it’s hard to tell, but I’m watching for symptoms of a complete lack of insulin, and getting my insulin production tested more regularly than just…you know…once.

I made the decision with my doctor to disrupt my life as little as possible. Since oral meds and a basal insulin still work for me, I’m not going to upend my life if I don’t need to.

The more stable it can stay, the better. At least for me.

It means I don’t have to start on therapies that I can’t afford at this point.

“How do you feel?”

This has been the question from the few people I’ve confided in and told about my misdiagnosis and the hunches around it.

Being misdiagnosed makes me angry.

And I guess I’m angry because for so long I’ve been told that diabetes was my fault. Even with a type 2 diabetes diagnosis, I didn’t believe that it was ever my fault.

From doctors, from strangers on the internet. Via anonymous emails, from other people with diabetes. They constantly told me that I was lazy, not trying hard enough, not welcome.

One simple blood test and the presence of antibodies reenforced that I did just about everything I could do.

Because I got mislabeled, I apparently didn’t deserve the grace. Now that I have the “right” label, I think it will change some tunes.

That, quite frankly, pisses me off.

When a lot of people tell you that you did something wrong, or you caused some kind of schism, and you deserve what’s waiting on the other side, a little part of you starts to believe that.

But this entire time my body was attacking itself. I was dealing with an autoimmune illness, and there was no amount of carb cutting/not eating/exercising my face off that was going to fix it.

So I spent a lot of time trying to fix something that I wasn’t going to be able to fix, and that makes me angry.

I spent so much time thinking that if I just ate less carbs, less food and exercised more that I could get off insulin. That I could throw all of my oral meds down the toilet. That I would never have to look at another needle in my life.

I’m angry about all the time I used hating myself for something I was never going to be able to fix.

I’m also angry for people who don’t have healthcare providers who listen to them. Even though it took four years to get the right diagnosis, I got it.

My PCP knew when to say “I have to send you somewhere else because I don’t want to mess this up for you.”

I ended up seeing a different endo than I expected, but his first words to me after I told him about my history were “Have you heard of LADA?” and then

I got the Antibody and C Peptide tests. I’m mad for people who don’t have that or aren’t given the benefit of the doubt.

I’m mad that people who ostracised me because of my type 2 diagnosis, are going to be nicer and more understanding toward me because my diabetes is “not my fault.” anymore. A simple label change makes it all different I guess.

I also have to talk about gratitude in this story too. Because there’s a lot to go around.

I’m grateful for my husband – the first person I told about each diagnosis. 4 years ago when I cried about having T2D he was there for me. Today when I came home with a sigh of relief (and a still a lot of confusion), he was there for me.

He said everything was going to be okay, and I learned a lot after my first diagnosis, and I’d continue to dive deep to learn what I’m up against. Husband 101 – calm down your crazy wife.

I’m grateful for every single person who heard my story and told me to find an endo who would test me. Every year for the past four years no less than 3 people each time have said “I think you’ve got LADA.”

I’m grateful for the three women I could text after I got my results confirmed to vent to and kind of share those first moments of disbelief with. And they got it because they’ve been there.

I’m grateful for my partners and sponsors who are gracious, kind and understanding about my emotions and feelings working through this process.

I’m grateful for every person who never judged me for a high blood sugar, or guilted me into thinking I had to be perfect.

Mostly, I’m grateful to you if you’re reading this.

It’s a mess of thoughts. But I thought it was important say in my own messy words. Because you should hear it from me.

I’m publishing this after months of sitting with my diagnosis, but I wrote it the moment after I got home after learning my results.

These are the first few moments where no one really knows anything, and I just have time to process and grieve for what I thought I knew.

I wanted some loneliness in these moments, because I wanted to be the only one that knew before I told 100,000 people what this means for me.

I also wanted some time to find acceptance.

At this point, I still don’t have that. I’m still hurt about being misdiagnosed and I’m still working through it.

The days and weeks before publishing this was hard

It was hard to get out of bed. It was hard not to feel guilt. It was hard to say “I have type 1 diabetes” without feeling like it wasn’t quite right (I guess because it’s not in my head).

It was hard to feel like I’d accepted my type 2 diagnosis and was happy with it, and fine with it and then my world upended a little bit.

I accepted and came to terms with my type 2 diagnosis relatively quickly. It feels much harder this time around, and I don’t know why that is yet.

It might be because I’m grieving part of myself that I thought I knew. It might be because I truly lived a happy life with T2D and was glad to stand up for others living with it.

It might be because so many people told me “you can cure this” or “you can go into remission if you try hard enough,” and when I didn’t, I just felt like an idiot.

I could speculate a lot of things, but at this point I just know less than I thought I might if it came to this.

What changes with Hangry Woman?

Well, nothing really…for now? I’m still going to share recipes I love, and helpful diabetes information. That’s always been my goal, and I feel like that’s never going to change.

You may see more carbs around this place because I’m free-er to have them.

I’m still constantly monitoring myself. If anything, there will be more depth about the progression and how I’m dealing with things.

I’m never going to stop making noise for the T2D community.

But, I’m also going to make new friends who have LADA, and have gone on to share my same path. I need that. I need them.

I’m also probably going to talk about the trauma of a misdiagnosis, and the effects on me personally.

Most of all – I’m going to encourage people to keep fighting for themselves when something is not quite right.

If someone would have told me…

If you would have told me that murder hornets, a pandemic, and a diabetes misdiagnosis would have happened all in 2020, I would have laughed at them.

It makes me wonder what the heck is in store for 2021.