Wrong Diagnosis? No one knows!

It’s Newly Diagnosed Week at Diabetes Daily. Welcome to the crazy world of D. Other bloggers are giving some sage advice. I’m just thinking history.

I’m trying hard to remember. What I remember and how it really was, I’m sure are two different things. Such is my recall about details I’ve barely thought about all these years. I don’t remember specific dates, just the year.

It was 31 years ago, in 1978, that I went to the doctor with some strange symptoms – unquenchable thirst, head-dropping tiredness, constantly and urgently full bladder. I was bundled off to see an endocrinologist. At that stage, my family doctor hadn’t run any tests or told me what he suspected. I suspected enough for both of us but was hoping it was some strange virus.

The endo was a lovely old professor at one of our local hospitals in Sydney. How kind and caring he was! I can’t recall exactly how it went or what tests were run, but I know he told me I had “mature age onset diabetes” and how unusual it was at 25. He couldn’t explain why. I was a little overweight,  having gained a few pounds in the preceding 2 years, but I was by no means obese.

The day wasn’t memorable, my age was.

Why did I get this ‘mature age’ thing at 25? No one knows.

It scared me silly. I’m not sure I was that compliant about anything in my life until that diagnosis.

I was taught to count calories, to weigh everything and was given a diet that seemed to limit carbs. No sugar or sweet drinks. No sweet anything. No potatoes, rice, pasta, limit the fruit and so on. Really, it was a great lower-carb diet, but it was never called that. And I stuck to it. Those tiny portions, just enough for a two-year-old. In 3 months I lost so much weight that I ended up skinny! I don’t think I’ve tasted a soda with sugar since and I never again was that skinny. It made the diabetes go away.

I stayed somewhat careful of my diet for a while – a few years. I even worked in a chocolate factory for 2 years and never touched a crumb! I have no idea how I did that – I’m a certified chocoholic!

Miraculously the diabetes was kept under control – no medication, no insulin, just diet. In those days, there were no blood glucose meters, so the odd test with a urine stick was all I had, plus a fasting blood test from time to time. I was told I didn’t have diabetes. Carry on as normal. Eventually, I got lax with diet and mostly ate whatever I wanted. Rice, potatoes and everything carb was back on the menu. Why the diabetes didn’t return during that time, I’ll never know. It might have, but my testing and doctor follow up was pretty much non-existent, and so were symptoms.

I knew diabetes could rear its ugly head again anytime. When I fell pregnant 10 years later, I wondered when it would hit. I was a very normal weight and at around 18 weeks, having gained very little weight, I was loaned a meter, put on insulin and told that after pregnancy it would disappear again. Most women get it in the third trimester. Why did I get gestational diabetes at 18 weeks? No one knows.

I came out of hospital 2 lbs below my pre-pregnancy weight, with an unexpectedly small baby. My BGL control had been pretty awful. I was very insulin sensitive and I remember having many hypos with only a half to two units of insulin and also having what today would be considered unacceptably high BGLs at times. Why didn’t I have a large baby? No one knows.

My syringes thrown in the bin, I was off the insulin and supposedly ok. Unfortunately, at that time I was diagnosed with lupus, an autoimmune disease. Getting my head around that pretty much put everything else in the background.

Over the next year or two, I had a couple of fasting blood glucose tests. Results always came back ok, or just a little higher that normal. Nothing to worry about, I was told, but as time went on, I didn’t agree. I felt something was wrong on top of everything else that was wrong. In hindsight, could fasting too long before a blood test – 14-16 hours – have given me ok BGL results? No one knows.

I was feeling like I had high BGLs after meals, by which time I was already watching carbs a bit. Eventually I bought a blood glucose meter and tested for a few weeks. On showing the doctor my graphs, he panicked… er… packed me off to an endo. I was angry. It had been way more than a year after my daughter was born and I’d probably been spiking all over the place!

So started the next battle with Type 2 and tablets. They did work, but they all caused horrible side-effects, so most of the time I didn’t take as much as I was supposed to. At that time, I also didn’t care. It was all too hard. The doctor kept giving me new tablets, and I kept having problems with them including hypos and GI problems that the doctor said was IBS. It wasn’t. Inexplicably, I’d gained some weight and couldn’t lose it no matter what I tried. Why? No one knows.

— Confused

BMI around 26 and gaining, my clothing 2 sizes bigger, my BGLs going higher and I was angry.

In 2006 I finally went on insulin, after 2 years of urging by a new endo. I had been needle phobic and I wouldn’t hear of it. I finally relented after HbA1Cs that were truly shameful. I was starting to care again. Diabetes burnout was over.

By then I was in my 50s with nearly 30 years of an on and off diabetes history. I was clearly Type 2, the medications were horrid, and I switched to insulin. Needle phobia gone. I had pens this time. Too easy. From that day, I wanted an insulin pump, but no way to get subsidised supplies in Australia as a Type 2, only as a Type 1.

In January 2009, after asking for a year and being told, “Impossible! You’re definitely a Type 2!”, I was finally sent for some antibody tests. I’d nagged a lot! I wanted to know for sure that I was not eligible for subsidised pump supplies. To everyone’s surprise, including mine, I had highly positive GAD antibodies on 2 tests, 3 months apart and c-peptide almost zero (0.1).

I had LADA – Latent Autoimmune Diabetes of Adulthood.

So that was my second diabetes diagnosis, and in many ways a somewhat more welcome one than the first one because this time, something positive would come of it eventually – an insulin pump. While I don’t remember the date of my original diagnosis, I certainly remember my insulin pump start date earlier this year. Finally something to celebrate!

On the other hand, that diagnosis brought up a bunch of nagging questions.

Is LADA what I’ve had all along? No one knows. Did I first have Type 2 then LADA? No one knows. When did I get LADA? No one knows. Did I get LADA the same time as Lupus? No one knows. Did I have a short or long LADA honeymoon? No one knows. If I’ve always had LADA, then why did it virtually go away for the first 10 years? No one knows.

Does anyone know anything?

Note to self: Stop looking for answers! No one knows!