Sunday, November 06, 2005

My Diagnosis

I’ve read many stories talking about how people were first diagnosed with type 1 diabetes after an illness - in fact, I’ve read claims that there "must" be a viral infection to set it off. Which isn’t me. I honestly don’t think I had so much as a cold for at least six months before diagnosis, and I hadn’t taken a sick day for me (as opposed to the kids) in two years. To be truthful, everything at home had been going so smoothly, I was getting a bit superstitious about it. We were past due to get hit with something. Big. And we were. How I was diagnosed with this serious, all-consuming, pain-in-the-ass disease was: I went for a physical.

Looking back, there had been a few symptoms: my eyesight had seemed a bit blurry for a while. But I was almost 37, had been working on computers 10-12 hours a day for 20 years. I figured maybe I finally needed glasses. And I was going to the bathroom more often, even if it seemed like just a tiny amount was coming out. I would go just before I left work, and by the time I’d picked up the kids and gotten home an hour later, I would have to charge into the bathroom again. I figured it was a urinary tract infection, but I had a dr’s appt less than a week away, so I wasn’t worried.

I was drinking a bit more than usual too, but nothing drastic. Certainly not anything out of line with what everyone else was doing with the dry office building heat. The one time I was really thirsty, two days before my physical, was when I’d been at saber fencing lessons with my then-eight-year old. We’d had a real workout in too-warm sweatpants, were dripping with sweat in December, and on the way home we got an ice cream cone as a reward. I got home and drank three glasses of water - very unusual for me - but the next day I was fine.

So I wasn’t really expecting it when instead of the nurse coming in for the usual stuff at the start of the checkup, my doctor comes in instead. He says my fasting urine sample had sugar in it, and they wanted to double-check with a finger-stick and then maybe draw some blood. The finger-stick showed 232. My doctor (I’ll call him Dr A for this piece) asked if anyone in my family had diabetes. Well, my grandmother had it since her sixties. And my dad was diagnosed about a year ago, in his early seventies. Both had done fine with just diet control, which I had vaguely assumed meant cutting down on sweets.

Dr A seemed very surprised that someone my age and build (5 foot 6, 128 lbs) would get diabetes. He wrote out a prescription for a meter and told me over the next two weeks to check once a day: sometimes when I woke up, sometimes two hours after a meal. He said to cut down on my carb intake - rice, pasta, potatoes, sugar, bread, etc. "You mean like Atkins?" I asked. Atkins was pretty much at its peak then. "Yes, like that. Eat less, exercise more, and call me if it goes over 350."

The only thing I had presence of mind enough to ask was "this can only mean diabetes, right? It can’t be anything worse?" Boy, was I naive.

I got a bunch of type 2 diabetes pamphlets in a bag. Welcome to the club.

I went home, somehow managing not to blurt out my bad news or start crying until after the kids were in bed. I did another finger-stick. 283.

My husband probably saved my life by going off to amazon and rush-ordering me a book. The First Year: Type 2 Diabetes. I read it through twice in one day. Dr A called to tell me the lab test came back with an a1c of 9.2. Definitely diabetes. "But what about type 1?" I asked. The book talked about how many thin type 2's were actually type 1. Well, that wasn’t too likely, Dr A said, given that I had a family history of type 2 (???) And anyway, it wouldn’t be treated any differently as long as things were working.

So I went thru Christmas and new years on an ultra-low carb diet. It seemed to work, at first. I had fasting readings in the 80s in January. Then Feb came, and kicked off a month of pure hell.
To start off with, I got a sinus infection, and my bg readings were back in the 290s. I was also running a temperature of around 101 all the time. I went in, got antibiotics, and the sinus infection went away. The temperature didn’t. I could not get a temperature reading below 100 degrees for 22 days. I bought 2 different thermometers, made my husband take both our temps in case there was something wrong with my technique. Dr A checked for a urinary tract infection - nothing. He did blood work, looking for other weird viruses. All negative. My BG readings remained high. He told me to eat less and exercise more. At this point I was down to 24 g of carbohydrate a day and 90 minutes on an elliptical after supper every night. It didn’t help.

The blood tests started getting more esoteric, and more scary. We even did a C-T scan, looking for tumors. I kept asking "Could this be connected to the diabetes?" and kept being told no. I complained that I ate virtually no carbs and my blood sugar still went up 100 points when I ate. Dr A said I was testing too often. Once a day was plenty for type 2. I responded I wouldn’t test more often if every time I tested I saw values between say 100 and 130, but I was seeing things like 187 - 316 - 248 - 325 - 192....

I stopped going back to the doctor’s about the temperature, figuring he was out of ideas anyway. In March I went back to Dr A and asked him to run tests for anti-GAD, anti-insulin, and anti-ICA. He’d never heard of them, but agreed to have them done.

I got a phone call from a nurse about the results. Dr A was not available, but in the background I heard his partner complaining "Who ordered these tests? We never order these tests. I don’t even know what they’re for." The lab had never ran the anti insulin one. The anti-GAD lab normal range was from 0.0 to 0.1 and I had 128.2. Anti-ICA was usually negative and I had 38. "Um, what do these test mean?" The nurse asked. "They mean I want a referral to an endocrinologist and I no longer wish to be seen by this practice." I did phone Dr A later and politely informed him that it was indeed type one diabetes, and should he ever see another patient with similar symptoms, please keep that in mind and not put them through four months of guesswork.

Enter Dr B. I was probably the first patient he ever had who was relieved to be told they needed insulin. At this point I weighed 111 lbs and since I am 5'6, looked like a poster child for eating
disorders. Or in my case, not-eating disorders. We phased in insulin using MDI and gradually phased in the food as well. But what really pissed me off about the whole runaround was that two seconds after Dr B first walked into the room, he touched my forehead and said, "You seem to be running a temperature. That is very common in autoimmune disorders." So much for all the expensive testing over the whole month of February.


Kerri. said...

Hi Val. I followed the link you left on my site to Here. I laughed when I saw your blog title ... very witty! Do you mind if I link your site from Six Until Me?

Keep writing. Keep posting. I'll keep reading!

Sandra Miller said...

Hello Val,

Saw your comment over at Six Until Me and, like Kerri, followed your link here...

My 10-yr old son was dx'd Type 1 a little over a year ago.

Reading your diagnosis story brought me right back to that time-- when things were going so good for us that I began to wonder if we were due for something big as well.

Well, I guess we were.

I'm adding a link to your site this morning.

Take care,

Anonymous said...

Like Sandra and you said, before I was diagnosed my life was going a little too well. Then poof! Chaos. I know how you felt. My doctor also told me I was type 2 but I went and got a second opinion right away.

Do you mind if I link you to Diabetes Daily?

Take care!

Anonymous said...
This comment has been removed by a blog administrator.
Shannon said...

Hi Val,

I found your blog after googling basal check (I've got a few sleepless nights ahead). Like you, I was initially diagnosed as type 2 (I guess because I was 31at the time, some old school docs think it's impossible to get "juvenile diabetes"), and tried six different types of oral meds over the course of one year (two of which made me violently ill). Finally, after switching doctors, I was given the correct type 1 diagnosis I've been using a pump for about 15 months, and it has been great. My doctor is now trying to get my insurance company to pony up for a CGMS, but it's not looking good. My husband and I will probably just pay for it out-of-pocket, and hopefully be able to use our flex spending account for reimbursement. I was wondering, though, how were you able to participate in so many studies? My numbers are all over the place too, which is especially troublesome because my husband and I want to get pregnant. I'm hoping the CGMS will help with that.
Thanks for your great blogs (my favorite being "Late Night Conversations"). I'm still laughing about that one.