The Mysterious Symptoms of Undiagnosed Diabetes: Diabetes Blog Week Day 1

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“Let’s kick off Diabetes Blog Week by talking about the diabetes causes and issues that really get us fired up.”

Mike After the TA Half Marathon 2013Before my husband, Mike, was diagnosed with diabetes, he was – to my mind – a certified tough guy.  He’d been a paratrooper, had a black belt in some kind of kickboxing/karate thing that I (clearly) know nothing about, and he ran long distances.  Whenever I was with him, I felt safe and protected, kind of like having a husband and a Rottweiler all rolled into one. (The previous sentence is intended as a compliment.)  And if you’d asked me to come up with a thousand adjectives to describe Mike, “weak” would not have made the list.

But then one day he got sick. We’d been in Atlanta with our baby for Mike’s cousin’s wedding, and had to cancel our flight home because Mike said he was too sick to fly.  I had never heard Mike say there was something he couldn’t do.  In fact, just a year earlier we’d been in Paris together and the night before our flight home, Mike got food poisoning from a dish of raw sea slugs.  (There must be a sexy way to say sea slugs in French.)  We had just a few hours between the dinner and our flight home, and Mike felt stomach cramps so severe, he was doubled over in pain.  I suggested we stay an extra night in Paris until he felt better.  He would hear nothing of it.  When it was time to go, he pulled himself together, carried all the luggage, and off we went.  He was not about to have his butt kicked by slimy sea slugs, and though he felt utterly horrid on the inside, you couldn’t tell on the outside.

So when Mike said he was too sick to fly home after his cousin’s wedding, you can probably imagine how shocking his statement was, especially since no one could see his sickness.  He didn’t have a fever and though he did look pale, he seemed mostly okay, except for the hours he spent in bed curled up like a little pillbug.

We got home a few days later, and everything went back to normal.  Mike was just really thirsty.  Normal, but thirsty. But, you know, we lived in a hot climate and he ran a lot outside.  It was definitely normal for him to be thirsty.  Then he got even thirstier and wanted to drink things other than water – things that we rarely had in the house, like a gallon of orange juice (every day).  And he wanted to have milkshakes for dinner.  It was noticeably odd, but Mike was still running long distances.  He had a great appetite.  No signs of anything scary.  That’s why we didn’t worry when he started to lose weight.  

Months passed and slowly but surely Mike’s fluid intake increased as his weight decreased.  But he still had a marvellous appetite and exercised like a champ.  He peed like a champ, too.  If you’re drinking a lot, though, you’re going to pee a lot.  You don’t need to be a doctor to figure that much out.  There was no reason for us to be alarmed.  And Mike was out the door every morning at 6:30 to go to work.  Sure, he felt tired, but so would anyone who worked a long, full day and was up half the night drinking and peeing and the other half because our baby was crying.  Neither of us could ever catch up on sleep.  We walked around like zombies, just trying to get through the day.

After about six months, Mike couldn’t feel his toes.  He’d been out in the cold in wet boots, so there was a reasonable explanation, but still he was worried enough to talk to the doctor.  Mike neglected to mention to the doctor that he was also drinking five gallons of  liquid a day and peeing waterfalls. And the doctor didn’t think much of his numb toes.  So Mike went on as usual, he kept drinking, eating, and losing weight.  But he wasn’t running anymore.  He could barely get out of bed.  And his vision was blurry.   

When we found out Mike had Type 1 diabetes, he was pretty close to dead.  If we’d known even one thing about Type 1 diabetes, we might have had a clue. Mike could have gotten a blood test two weeks into his symptoms and he would have gotten insulin and been fine.  He didn’t have to be within days, hours, minutes of falling into a coma.

When we talk about the importance of diabetes education, we’re generally referring to education for the people already living with it.  I’d like diabetes education to include “real” awareness – not a campaign or public service announcement that no one who doesn’t have diabetes is going to notice, not just a campaign whose aim is to make life better for those already living with diabetes.  

What if the symptoms of Type 1 were common knowledge?  What if every school teacher in the country received information about Type 1 diabetes? In my middle school health class we learned about CPR and the Heimlich maneuvre.  We learned not to eat fat or have sex before marriage, but we didn’t learn anything about diabetes.  When my oldest son was born I received information about the vaccinations he would need, and all sorts of other stuff designed to educate overwhelm and terrify new parents.  Nowhere did I read that if your child is extremely thirsty you should be concerned about Type 1 diabetes.  But maybe if I had, something would have clicked when Mike was thirsty.   

Mike’s terrifying diagnosis story is not unique.  I’ve heard versions of it over and over again in both adults and children.  Type 1 diabetes may not be preventable, but getting really sick because its undiagnosed definitely is. And along with the education of diabetes symptoms should come another very important message: Just because you have diabetes doesn’t mean you’re not a tough guy anymore.  Mike and all of his post-diabetes accomplishments are proof that diabetes makes you stronger.  

 

Comments (8)

  1. katy at

    I love this message. I think about this all of the time. Eons (or months) before diagnosis, my son’s 2nd grade teacher contacted me to ask why he was so tired. He was putting his head down on the table every day after lunch. Were we having trouble at home?
    We went to Spain for our summer vacation. He always wanted to stay in the flat, watching Phineas y Ferb. He said he was too tired to walk. He was 8 years old, but always wanted a piggyback ride. We thought he was being a total drag.
    He wasn’t diagnosed until he was begging for water in the car and yelled IF I CAN’T HAVE A DRINK RIGHT NOW I AM GOING TO DRINK MY OWN PEE. I Googled “extreme thirst in children.” Type 1 diabetes, obviously.
    There are so many easy-to-spot signs. It is, perhaps, the easiest disease in the world to spot.

  2. Kim at

    I don’t know what to say except that, oh my, yes this needs to be more common knowledge.

  3. Lesley at

    This is a great issue to be fired up about. As a T1 myself, I caught my daughter’s symptoms very early and then set about convincing some medical-types that they needed to test her bg “officially”. I’m always surprised when I read stories about what seem like “obvious” symptoms not being recognized. It’s a good reminder that people can’t know what they don’t know and we can help others by telling these stories and by offering information. Thanks for such an important story.

  4. Teri at

    This was my exact situation as well! All my (now obvious) symptoms I blamed on other things.

    Tired? I tend to be anemic so I figured the reason I always wanted a nap, especially after lunch.

    Drinking a lot? I had sinus issues (still do) and at night I would become a mouth-breather so I would grab some juice. I got up to pee a lot during the night because, well, I was drinking all that juice.

    Vision blurry? I wear glasses so I must need a new prescription.

    Headache? Must be another migraine brewing.

    I finally went to the doctor to test me for anemia and, because of a strong family history, I asked them to check for diabetes. My fasting was higher than normal (about 160) so they put me on oral meds for two months as my sugars rose and rose. 

    The week before I got a second opinion at Joslin, I lost a solid 10 pounds. My fasting was in the 300+ range at this point and when I saw the doctor, I was admitted immediately and put on insulin.

    I was 26 and not overweight. We missed all the (now very obvious) symptoms and I saw my new husband weep because his late father had the disease (Dxd at the age of 27), he did not recognize the symptoms and thought the same thing would befall me as his father (who died from a heart attack at the age of 43).

    They now think I may be more of a LADA or 1.5 but whatever you call it, I need to take insulin to survive. Always have and always will. 

  5. Erin at

    Wow. What an interesting perspective. I’ve never considered how it would have felt to my family before I was diagnosed. Thanks for sharing!

  6. Karen at

    Bravo for reminding us that we need to advocate not only for those with diabetes, but for those who don’t have it yet.  I was 11 when diagnosed, and was slipping into a coma and in ICU by the time we realize how sick I really was. 

  7. The onset of my diabetes was similar. I lost 9 kg in 9 days. That is 1 kg a day. Had a very healthy appetite, very thirsty, fatigued with occasional blurred vision. I don’t think I would have lasted a month. Quite a scary thought.
     
    There is a need for more general understanding of diabetes and the onset symptoms. 

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