My Diabetes Diagnosis

A little over a year ago, I received a pre-diabetes diagnosis from my fertility doctor. I was getting some blood work done and my A1C (a protein that represents a 3 month average blood sugar level) came back in the pre-diabetes range. For those that are curious, my A1C was around 6 at the time, I don't remember the exact number. My doctor wasn't surprised by this because I also have Polycystic Ovary Syndrome (PCOS). They aren't sure why, but 70% of women that have PCOS are also insulin-resistant (their body doesn't know how to process insulin correctly, but they still produce plenty of insulin). That's what my doctor assumed was wrong with me. She put me on some Metformin, medication to help my body respond to insulin better, told me to look up Whole30 to help manage it through lifestyle and that was that. I took the diagnosis very seriously. I started eating Paleo 100% of the time at first and then backed off to about 80-90% of the time. A year went by and my blood sugar and A1C were never re-checked after my initial diagnosis. Looking back now, I should have insisted on having additional checks.

Fast-forward to July of this year. We were on a trip enjoying Italy and Switzerland and I started to notice some things were...off. I was living it up on vacation eating things like pasta and tiramisu every day and I started noticing my clothes were fitting LOOSER. That's the opposite reaction I would have expected by the way I was eating. I was also drinking everything in sight and had to get up to pee about 3 times a night. I chalked everything up to the amount of walking we were doing. 

We got back from vacation and the next day, I started getting sick. It was the worst cold I had experienced in a long time. Anytime my head wasn't firmly planted against a headrest, I felt dizzy and like I was going to fall over. I started back on my paleo diet hoping that would help because I knew my body just worked better when I ate paleo. I was still losing weight and then I noticed my urine was foaming (think like the head of beer or when you rinse a bowl out that had raw egg in it). After a couple of days of foam, I googled...foaming urine is a sign of kidney failure or diabetes. Perfect. I went to the doctor. I had glucose, protein, and ketones present in my urine, none of which should be there. (Let me pause here for everyone that has ever done the keto diet, ketones in the urine can be fine for that. My situation was different, ketones are very bad for people with diabetes.) They thought there had been a mistake with my initial urinalysis and had me do another one in their office. Again, glucose, protein, and ketones were all present. They scheduled some blood work and my A1C came back 11.3 and my fasting blood sugar level, was 307. Those are bad numbers. I was lucky to not be hospitalized. It took my doctor almost a week to follow-up with me after receiving the results of my blood work and they only did after I saw the results online and reached out to them for a follow-up.

My doctor's office handled my diagnosis very poorly. A nurse walked in and told me I had type 2 diabetes and told me I needed to change my lifestyle immediately to manage it better. The nurse told me incorrect information about the medication that was being prescribed to me, incorrectly told me when to check my blood sugar levels, and told me she would order a blood sugar monitor for me, which she never did. She told me I needed to see an endocrinologist, go to diabetes education, see an ophthalmologist, and visit a podiatrist. I walked away from the appointment completely overwhelmed with my head spinning and feeling guilty, like I had done this to myself.

I bought a blood sugar monitor and my sugar level was still over 300. I called every endocrinologist in town and the quickest I could get an appointment was a month from then. Since I knew the information that was given to me about the medication I was being prescribed was wrong, I started questioning everything the nurse had told me during my diagnosis and I started googling things. Thank God for the internet. I looked up how to tell the difference between type 1 and type 2 diabetes through blood work and compared what I found online to my own blood work. I was shocked. They didn't check me for type 1 diabetes. I was diagnosed, officially, with type 2 diabetes without having been checked for type 1 even though there were really clear signs that I could have type 1 diabetes. I reached out to my doctor's office about 5 times through messages and through a chronic care advocate that had been assigned to me to try and get some additional blood work to check for type 1. No one responded to me.

I called the endocrinologist several times a week to see if I could get an earlier appointment and thankfully they had a cancellation. I was tested for type 1 diabetes and everything they checked came back consistent with type 1 (low C-Peptide levels, Low insulin in system, high Autoantibodies). Type 1 diabetes is an autoimmune disease. My body had built up antibodies against my pancreas and basically shut it down so I wasn't producing insulin anymore. My endocrinologist prescribed insulin right away and I was able to get my blood sugar down to a normal range within 24 hours of my first shot.

All-in-all, it was about a month from the time I was diagnosed with type 2 diabetes until I had a correct diagnosis of type 1. That's a pretty quick turnaround of the diagnosis compared to others. Still, it was a very scary month. I knew I couldn't have anything with carbs in it during that month while I was waiting for insulin because I didn't have anything that could help me get my blood sugar down to a safe range. I lost even more faith in the medical community during that time. We shouldn't have to be as big of advocates for ourselves when it comes to medical conditions, but it's a sad truth that we have to come to terms with. If I had known better, I would have pushed for further testing when I was diagnosed with pre-diabetes over a year ago. In adults, the antibodies that are built up to attack the pancreas start years before any changes in blood sugar are seen, so we could have caught it before it became as big of an issue as it was for me. I am really lucky that I didn't end up in the hospital due to how bad things had gotten with my blood sugar. I'm also really lucky that I didn't sustain permanent damage to my kidneys due to how high my sugar was for so long.

In all of the research that I've done, it seems as though it is not standard practice to test for type 1 diabetes in adults when A1C and/or blood sugar levels are high. Most times, it's just assumed the person has type 2 diabetes because of the adult-onset. If you get a pre-diabetes or type 2 diabetes diagnosis, I would strongly encourage you to ask for further testing to confirm that you do not have type 1. Ultimately, I hope this becomes a common-practice in the medical community in the future.

And so my journey with Type 1 Diabetes began.

Photos were pulled from thediabetescouncil.com and jdrf.org.