LADA and Me

Yes, I apologize for focusing so heavily on my diabetes lately. It’s been too hot to knit (the yarn keeps getting stuck in my sweaty hands) and I’m slowly running into all sorts of new things that have priority because we’ve progressed my treatment to the next level. I’ve been reading a lot about my disease again, and I feel it’s important to bring more awareness to LADA. Many doctors, nurses and pharmacists are unaware of this type, and the public generally only recognizes type 1, type 2 and gestational diabetes when the condition is brought up. There’s so much more out there and knowledge is half the battle!

What is diabetes type LADA?
LADA stands for “Latent auto-immune diabetes in adults”. It’s a form of type 1 diabetes that disguises itself as type 2 initially. It is usually diagnosed in adulthood, and misdiagnosed as type 2 frequently. People with LADA may be overweight, of normal weight, underweight, show insulin resistance, not lose weight, lose weight quickly, and experience the common symptoms of diabetes like excessive thirst, urination, blurred vision, tingling in the extremities etc.

Diagnosis of LADA depends on the knowledge of the doctor treating the person. Usually there are one to multiple factors that don’t match with type 2, which will prompt the doctor to test them for type 1 antibodies. Other times, the disease will continue to be misdiagnosed as type 2, where the person eventually becomes insulin dependent. (This can be psychologically damaging, as the individual may experience having ‘done everything right’ and still ‘failed’, even though the outcome was inevitable due to the nature of their condition.) This second course can be more dangerous and reduce quality of life, as the treatment for type LADA can be very different from type 2.

What is the treatment for type LADA?
Opinions on this differ! One doctor will start their patient on oral medication initially (metformin, gliclazide) and try to manage the condition for as long as possible. Others will start their patient on insulin immediately. As LADA is a ‘relatively new’ form of diabetes, the research is not conclusive enough to rule one treatment favorable over others. Both sides argue that their methods prolong the life of insulin producing beta cells. What’s most important for either method is a close monitoring of the condition, and making the right decision on when it’s time to switch to insulin to keep the glucose values under control.

For some, insulin dependency can be put off for as much as 10 years through exercise, diet and oral medication. Others will decline so rapidly that they’re on insulin within months. Because every body is different, it’s always up to the doctor and their patient to find the right course of treatment. Just because another LADA patient managed to keep their values under control for 5+ years, doesn’t mean that has to be the case for everyone else.

What are key symptoms during the early treatment stages of LADA?
Unsteady and unpredictable glucose values appear frequently in types LADA. Unlike childhood onset type 1, where the beta cells are eradicated within weeks to only a few months, LADA is a turtle in the race to destroying your body. As the disease can take years before insulin needs to be injected, the body’s own output of insulin is erratic and unpredictable. Patients may experience sudden excess bursts of insulin that lead to hypos (low bloodsugar, especially when on gliclazide medication), and other times may produce little to no insulin at all resulting in hypers (high bloodsugar). Exercise sometimes doesn’t lower glucose values at all, and can even make it rise as the liver releases glucose to fuel the body with carbs it isn’t able to process.

This is commonly referred to as the ‘honeymoon period’ in all insulin dependent types, with the difference being that LADA’s tends to be very long and chaotic as opposed to being short of duration and therefore more ‘reliable’.

The journey for me began with a sense of ‘This is my fault’. I had a couple of years where my diet went down the shitter and I ate very, very poorly. I gained a lot of weight, up to about 300lbs, and felt miserable and tired all the time. I drank a lot, I peed a lot, I didn’t feel good. During a routine checkup with my doctor, my fasting value was 7.5mmol/L. I was labeled as pre-diabetes. Two years later, I rang in at 10+mmol/L, one of my highest fasting values being 16mmol/L. Diabetes type 2. I knew that type 2 was the kind that bad diet and poor exercise regime were the main causes of, so I felt guilty for having gotten to this point.

By the time I got the diagnosis type 2, I’d lost about 40lbs, but my values were still shit. I saw my diabetes specialized doctor, who during my first time meeting her said “You’re very young. You are heavy, but your age and family history make me believe you might be a type LADA, which is a slow form of type 1 that initially manifests itself as type 2. Basically, you’d be between both types. I’d like to get you tested for that.”

Bam, just like that I found out that it wasn’t necessarily my fault. I tested positive. I am suffering from an auto-immune disease. My diet and lack of exercise were still bad and my obesity is still my fault, but I felt more motivated to be physically healthier knowing that I couldn’t have prevented diabetes even if I had been living perfectly healthy.

My treatment began with 500mg metforming twice a day. That wasn’t getting the results I needed even with a properly adjusted diet and exercising more. I got bumped up to 1000mg twice a day, and eventually I was also given 80mg glicladize once a day. That was the perfect mix and for a while, my A1C and my test results were doing excellently. That lasted about 1 year. Then my results got bumpier and less ideal. I was suffering from seemingly random hypos. I could eat two slices of sugary chocolate cake and still test in at 8mmol/L for some reason. Other times, I had fasted for 10-12 hours, rode my bike somewhere for 20 minutes, and my values actually went up to 10mmol/L without having had a hypo and my liver correcting my glucose levels.

I was deregulated badly. We bumped up the meds to 2500mg metformin total a day and tried that for 6 months, but it wasn’t having any reasonable effect. Low carb, high carb, I couldn’t control my values with diet or exercise at some point. Didn’t matter what I ate or did, I couldn’t reliable predict what my values would be if I ate this and exercise for this long. It was frustrating and hugely demotivating. ‘Why am I even trying?’ popped up into my head more than once. You’re doing everything right but it still isn’t working out.

I can’t even begin to tell you how much it helped knowing I’m a type LADA. I had been preparing for the inevitability of becoming insulin dependent for almost 2 years at that point. I knew what I was heading towards, and I made the decision to suggest to my doctor that it might be time to switch over to insulin. I was surprised and happy I didn’t have to because she suggested it herself once I explained how my values were unpredictable and heavily fluctuating.

I believe if I hadn’t had the LADA diagnosis, things wouldn’t have progressed as well as they did. I had ample of time to prepare for injections (something that is important to me, I don’t do well with sudden changes in the least) and I was able to recognize what was happening and making the right call before things got out of hand again.

There is an estimated 10% of misdiagnosed type 2 diabetics out there. Just because you’re heavy, or just because you’re in your mid-40s, doesn’t mean you can’t have the auto-immune variant of diabetes. Especially if you’re younger, have a good blood pressure, are eating right and still have high blood sugar levels, it’s worth investigating if your type 2 might not be a type LADA, or even one of the other less common types.

Listen to your gut. If your oral meds aren’t working for you, then there must be another reason. Don’t let an older doctor’s ‘expertise’ ruin your chances of a proper treatment. They don’t know everything, science discovers new things about conditions like diabetes all the time, and if they’re not up to speed on these issues it’s time to find someone else!


5 thoughts on “LADA and Me

  1. Thanks or bringing awareness to LADA. I was one of those that was misdiagnosed as a type 2. Thankfully, I then had an insurance plan change and my new doctor thought it would be wise to get tested and I tested positive. For me, it was a mixed feeling of emotions to know I had a autoimmune attack going on. On one side, it helped make me stop feeling like my efforts were not enough because after doing so much work on a severe and strict diet, exercise, severe micromanaging, etc, it just seemed to only be enough to “manage”. My diabetes wasn’t getting easier to manage. I had to do all this work just to keep my numbers in check and if I strayed away and didn’t exercise for a day or ate something different than the usual, my numbers would suffer significantly and it would take a few days to get back on track. On the other hand, it made me frustrated to know that I would eventually progress to insulin faster than I had anticipated.

    However, once I decided I needed to start on treatment, I think it made the decision to go on insulin easier. After I saw the meds we tried had no effect on me, I figured it would be best to not waste time trying meds that may or may not work when I would eventually end up on insulin anyway. Even though I hated the idea of having to start on insulin, I thought I might as well get used to it early as this is how it’s going to be for the rest of life. I think it definitely does help to get tested to know for sure if you are a LADA in order to know what to expect and make the appropriate treatment choice. Great post! 🙂

    • Thank you! I face a lot of misunderstandings and misconceptions with people on this condition, which can be disheartening and make life more difficult. Talking about it definitely helps. 🙂 I’m glad to hear you benefited from having the proper diagnosis in time, too! I don’t know what I would have done without mine.

  2. Thanks for the post, this is very similar to my experience so far (i just managed even less well on metformin and crashed onto insulin pretty fast) and it’s so nice to hear I’m not alone!

    • You’re welcome! It’s been really hard for me to connect with other LADA types, specifically the ones whose stories are similar to mine because they can be hard to find. (I see a lot of LADA stories that are vastly different, which doesn’t really help me feel like I belong to any particular community in this disease.)

      I hope we can support one another through this. 🙂

  3. Thanks for writing about this! Very informative.

    I did have episodes of hypo in the past but now my numbers are pretty steady and as far as I know, I am a Type 2. Am not on any diabetes medications, knock on the wood.

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