Diagnosed with LADA Diabetes – My Story

Preface: This is a long post about how I became diagnosed with LADA diabetes and some tips about managing it. I usually write about software development, but I felt a need to share my story here and hope to help others.

Top tips I follow

  • Advocate for yourself.  Read about diabetes, test yourself, and ask your doctor for what you think you need.  Misdiagnosis is common; get a second opinion.
  • Check your blood glucose frequently, and keep detailed records.  Checking is the only way to know what’s going on for sure.  The cost of test strips is tiny compared to a hospital visit.  Check in the morning, before driving, and both before and 2 hours after meals.
  • Most doctor offices will work with you over the phone (or via email or a “my chart” type website) to help you get the correct treatment.  Call them if you’re experiencing frequent high or low blood glucose readings.
  • Carry glucose tabs with you, for super fast treatment of hypoglycemia.  If you don’t have glucose tabs, carry candy, juice, or something else sweet with you.  Juiceboxes work well!  Remember that hypoglycemia can be life threatening.  Don’t count on the availability of food.
  • Find some low-sugar snacks and low carbohydrates food that you enjoy, so that you have yummy things to eat that shouldn’t raise your blood glucose too much.  I like kind nut bars!
  • Start keeping a list of low carbohydrate meals that you enjoy and try to follow a low carb diet.  Take note of how it effects your blood glucose levels.
  • Compare prices for diabetic supplies.  You may find cheaper deals online, or over-the-counter!  I’ve been using the Care Touch meter which I bought on Amazon, and 100 strips is only $20.  Works as well as my previous meter, in fact it seems to require less blood, so I like it even better!  I bought first for cost, and I stayed for quality — now, that’s a good product!

Path to LADA Diabetes Diagnosis

In 2014, I had the classic symptoms of diabetes (very thirsty, frequent urination) — but I didn’t make the connection immediately.  I had been tested for diabetes previously, and my fasting blood glucose had been fine. I was a healthy 31 year old. I was overweight, but not any more than the average American.

I had just gotten back from visiting my family, and we had done some hiking at Watkins Glen.  It was a beautiful day, and a really amazing place. But I had felt unusually tired during the hike, and afterwards, I had muscle cramps.  I thought maybe I was just getting old. I didn’t really know why I wasn’t feeling like my usual energetic self. But this fatigue was likely a symptom of my diabetes.

I also felt sick a few days before that, when getting into town.  I was a nervous wreck and thirsty, so I bought some gatorade and felt even sicker after drinking that.  Looking back on this incident, I probably had very high blood sugar, and drinking the gatorade was probably just adding to the sugar load.  But, I didn’t know I had diabetes!

After vacation, I made a realization one evening that the symptoms I had were classic diabetes symptoms.  I didn’t have health insurance, and didn’t want to pay a doctor, so I bought a glucose meter on amazon, and when it arrived in the mail a few days later, I tested and found my blood glucose level to be over 400!

I made an appointment with a doctor that my mother-in-law saw.  I was actually familiar with diabetes because my mother-in-law had been diagnosed with Diabetes Type II a few years ago, and I had been helping her with diet and exercise and medications.  I had even attended some diabetes education classes with her, so I knew about the effect of carbohydrates on blood sugar, and about how to count carbs. I had helped her take her blood sugar reading, so using the glucose meter wasn’t unfamiliar.  Exercise and following a low carbohydrate diet are both good strategies for lowering blood glucose, but people with LADA or Type 1 diabetes also need insulin, because their body doesn’t make enough insulin.

I have diabetes… but what kind?

The doctor said that I probably did have diabetes then, and sent me to get my A1C checked, and it was 11!  This is a very high result, as a healthy number would be around 6.  My doctor diagnosed me with diabetes and prescribed Metformin.  Metformin, also known as Glucophage, is a very common medication used to treat Type 2 Diabetes. 

It took a few weeks to a month or more, but the Metformin did lower my blood glucose to an acceptable level.  That, and also I drastically reduced the number of carbs I was eating.

The Metformin worked for awhile, but after reading up on LADA Diabetes, I suspected that I had LADA, because I had also been losing weight.  I went from weighing 170 pounds down to only weighing 125. Weight loss indicates that this may be more like Diabetes Type 1, or LADA. LADA stands for “Latent autoimmune diabetes in adults” and is caused by an autoimmune issue.  It’s a progressive illness, where overtime the body produces less insulin.

Also, I really doubted that it was Type II because I was younger than when most people are diagnosed with Diabetes Type II.  I was only in my thirties, and although I had been overweight, losing the weight didn’t make the diabetes go away. Often people with Diabetes Type II can get better if they lose weight because Type II is caused by insulin resistance, and reducing body fat, reduces the insulin resistance.  But in my case, the weight loss seemed more like a symptom, and it wasn’t making my diabetes better!

My doctor prescribed Glipizide when the Metformin stopped working to control it.  That only worked for awhile, and then that wasn’t helping either.  This is probably because LADA diabetes gets worse over time, so the difference that Metformin was making, wasn’t enough.  I researched Glipizide, which is a sulfonylureas medication, and there is some thought that it shouldn’t be prescribed to people with LADA Diabetes, as the goal should be to protect the pancreas and sulfonylureas may strain it.  But, I wasn’t yet diagnosed with LADA.

The Glipizide worked initially, but soon both Glipizide and Metformin together failed to control my diabetes.  I got a referral to an endocrinologist.  She performed the antibodies tests and found that I had GAD antibodies, which indicates that I actually have LADA diabetes.  It is caused by an autoimmune issue, in which the body attacks the insulin producing beta cells of the pancreas.  This causes a decrease in insulin production, which causes the high blood glucose.  The treatment is insulin.

Hey, 122! That’s a good reading. It can be frustrating to see a high reading, but no way to know without checking.  You can print out your own Weekly Diabetes Record here (PDF).

Hi, Insulin shots… And continual checking of blood glucose levels

Insulin is the necessary treatment for people with Type 1 Diabetes and also for people with LADA.  LADA is a progressive disease, so in the early stages it may be possible to treat it through other means, but ultimately, like people with regular Type 1, my body is low on insulin.  Without insulin, the blood glucose stays in my blood and cannot be used by the body cells, causing all kinds of problems.

There are different kinds of insulin.  Two general groups are long acting and short acting.  My doctor started me on the long acting kind (Levemir in my case, but there are several brands), because my body was still producing some insulin. This worked for awhile.  But then I also needed to add short acting insulin too, for mealtime use, since after I eat, my blood glucose was going up too high and staying too high.  The problem with high blood glucose is that it causes damage.  The high glucose causes damage to the body’s smallest capillaries, like those in the eye retina and the kidneys, so prolonged high glucose levels can cause serious issues.  So someone with diabetes should monitor their blood glucose, so that they can treat it correctly and prevent both short term and long term problems.

It’s tricky because the blood glucose needs to stay in an ideal range. Too high, and it causes long term damage.  Too low, and you have immediate life threatening issues. In the short term, too low is more dangerous than too high, but you also don’t want to allow it to be too high on a continual basis, because of the damage it does over time.

It’s all about balance.

The balance takes more work as my body loses its ability to maintain my blood glucose levels.  I went from only needing to check my blood glucose in the morning to needing to check it before and after meals.  If I don’t check, then I am just guessing, and an episode of low blood glucose feels like a panic attack.  Low blood glucose causes the body to produce adrenaline, and so you get symptoms like anxiety, sweating, chills…. It’s very unpleasant, and best avoided, if possible.  So I monitor carefully and eat at regular intervals, so that I don’t experience low blood sugar episodes.

Many people are afraid of insulin injections, because an injection is an unfamiliar process.  I’ve found it to not be that bad. It’s inconvenient, and like anything, takes some time to learn how to do well, but insulin injections are more of an inconvenience than anything else.  I am thankful every day that I have insulin and I hope to encourage people to use insulin if they need it. It’s normal to feel scared or unsure, but with practice, you will find that giving yourself an insulin injection is a quick and easy, and sometimes even painless process.

The Cause of LADA Diabetes.  How did this happen!?

I never in the world would have seen this coming.  I had always been a healthy person. I didn’t eat lots of sweets.  In fact, overly sweet foods didn’t make me feel good, so I had always avoided them.  Is there a connection there? Maybe?

But, LADA isn’t caused by diet.  It’s likely genetic. Plus maybe triggered by something.  What was my trigger? I have no idea. Some people get sick with a virus and the idea is that triggers this autoimmune response that causes diabetes.  I don’t know if I had a virus. There is a lot of mystery around diabetes. Why do so many people have it now? Is it connected to pollution? Or just to the amount of sugar in our food?

I don’t have any family history of diabetes, but I do have a mother with Hashimoto thyroiditis which is a hypoactive thyroid disease that’s also autoimmune, and this may have the same genetic cause as LADA diabetes.  My endocrinologist always checks my thyroid, because thyroid issues are common for people with autoimmune caused diabetes.

Like many medical things, it’s probably caused by a combination of genetics and environmental exposure of some sort.  There seems to be an increase in LADA, but still very little information for people with LADA, which is why I felt the need to write this.

Managing LADA Diabetes takes Time… and Mental Energy… and Money

Dealing with my diabetes has become a daily part of my life.  I have to keep track of what I eat and how much insulin I use and what my blood glucose is.  This causes extra work… So I have been working to create habits so that I don’t mess up, as inaccurately dosing insulin could end me up in the hospital.

I used to just eat when I’m hungry.  Now, I think about what I am going to eat, how many carbs is it going to be, and I check my records and blood glucose and then make a decision about whether I need to dose any mealtime insulin to cover for it.  I also take into consideration whether I’ve recently exercised or plan to exercise, since exercise has a glucose lowering effect.

The Future of LADA… What is the progression?

There’s really not much information on LADA specifically.  Most resources I find are just for people with Type 1. That’s fine, I guess, but I wonder about things like:  What is my diabetes going to look like in 5 more years? In 20 years? How much insulin will I need? What will change?

I keep reading about new research being done, and it seems like a cure for diabetes may happen in my lifetime.  If not, at the very least, things like insulin pumps and continuous glucose monitoring systems will improve and come down in price (I hope!), and I should be able to live a long, healthy life.

The First Few Days of Mealtime (Bolus) Insulin

For awhile, I only had long acting insulin, because it was assumed that I didn’t need mealtime insulin yet, but when checking my glucose after meals, it was always high.  For some reason, my A1C was OK at 6.9, but when checking my glucose level 2 hours after eating, it was often over 200. So to me this indicates that my blood glucose is higher than it should be. I’m not sure why the A1C seemed falsely low, but regardless, it will be better if I can have better blood glucose control after meals.

I told my doctor this, and she prescribed short acting insulin, so now I have a way to bring down my glucose when eating meals, and this should really help.

She prescribed insulin in a pen.  Previously, I’d been using bottles of insulin.  Pens are the new thing. They cost more but do seem easy to use and are less painful.

But the first day I used it, I woke up the next morning with low blood glucose — so I’m still trying to figure out correct dosage.  And then today my fasting blood glucose was higher than I expected, so “surprise!” again. It’s tricky because there are so many factors that affect glucose level — not only how many carbohydrates I eat, but also I have to account for things like exercise.  And sometimes stress or something else will throw it off unexpectedly. 

But at least I have another tool for trying to keep it stable.

The Financial Costs of LADA

I’ve been fortunate that this has had a relatively low financial impact on my life so far, but also I am using only a small amount of insulin because I am still in the early stages of this disease.

I’ve avoided having to go to the emergency room or hospital, but most people are not so lucky.  Often initial diagnosis happens during a hospital visit. I think this is because LADA Diabetes can come on suddenly and the super high blood glucose causes issues that lead to urgent care.  Of course, a hospital visit can leave you with really high medical bills.

Nonetheless, the costs of everything adds up!  And sometimes the costs just don’t make sense, like for example, sometimes the copay for prescription supplies is more expensive than paying for those same supplies over the counter.

There are multiple types of insulin to buy, pen needles or insulin syringes for administering the insulin, and then there are glucose test strips for testing, and also medication, and an endocrinologist visit every 3 months… Plus a recommended yearly diabetic eye exam.

The insulin itself hasn’t been too expensive for me.  I’ve been able to reduce my copay costs by using the manufacturer’s “saving card.”  (Google the name of your insulin and the word “coupon” and you may be able to fill out a form and download a savings card.)  It seems that the manufacturers are all competing for customers, so they offer coupon cards to reduce the copay amount, but you have to have regular non-government insurance to use them. 

Dealing with the medical system is frustrating, because costs are rarely known ahead of time.  And right now I have an insurance that doesn’t pay anything before reaching my deductible… So basically everything is out of pocket.

Glucose test strips are the expensive part of monitoring your blood sugar.  The meters themselves are cheap.  It’s kind of like buying printer ink.  They will practically give away the printer, because they make money on the ink.  For glucose meters, they make money on the strips.  I’ve found that I can buy meters and test strips for cheaper on Amazon than what it would cost me at the pharmacy.  I particularly like the Care Touch meter because of its low cost strips.

Related Links

LADA and GAD: Diagnosing Type 1.5 Diabetes – A good, accurate article about the LADA diagnostic process and contains a good description of the differences between the types of diabetes.  And, I could relate McLeod, who was misdiagnosed as Type II, and went through some similar experiences as myself.

Diagnosed with Type 1 Diabetes as an Adult? You Are Not Alone – This article features personal stories from people who got Type 1 or LADA as an adult.  Every experience is unique.  You hear from people like Danielle, who decided to wear an insulin pump, and Chris who is able to manage it with exercise and diet still.

At 40, a Surprising Diagnosis: Latent Autoimmune Diabetes in Adults

Type 1 and LADA Diabetes Forum – Looks like a great place for support!

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