My Lowest (Blood Sugar) Lows

Helen Mirren attempts to warn me of the vast conspiracy.

This is my attempt to take a 'light hearted' look at the scariest fact of diabetes - hypoglycemia - a.k.a. low blood sugar or the lows. It's not really a funny topic, and it certainly doesn't feel funny to you or your friends and family when it's happening but it does sometime result in some funny stories.

Before I had my pancreas surgery I had diabetes education classes and meetings with my endocrinologist where we discussed low blood sugar. I learned to logically recognize the symptoms so I would be aware when it happened but I was in no way prepared for the reality.

While I recovered in the hospital the nursing staff and the endocrinology team kept a close watch on my blood glucose so I didn't experience a low for my first week as a diabetic. It wasn't until I started recovering away from this hospital in a near by hotel that I experienced my first real low. I woke up in the early morning hours and felt 'prickly' all over. I was soaked in sweat which was a foreign feeling for me since I am not much of a sweater. I struggled mentally to understand what was going on and couldn't grasp it. I couldn't focus and felt an overwhelming sense of panic - could I be dying? It only took about about 30 seconds or so for me to understand that I was experiencing my first low as a diabetic but 30 seconds is a long time to feel that kind of mind searing panic. 

Over the past several years I've learned to deal with lows. Having good control on your blood sugar is often a fine line between a good number and a low. Luckily I am not susceptible to seizures and have never ended up in the ER for a low. I'm also not likely to get angry - you sometimes hear about diabetics who get really upset and unreasonable when their blood sugar is low. I am more likely to get things mixed up in my mind and use words incorrectly or forget the word I'm trying to say. I think my friends and family now know if I start acting spacey that it's likely my blood sugar going low. 

What truly can worry me though are the lowest lows - likely when my blood sugar drops into the 30s or lower. This is a scary place where coherent thought and reason leave and any stimulus gets folded into my reality.

A couple of years ago, while cleaning around the house and watching the US Open, I found myself truly distraught over the fact that Serena Williams was sent out to the court to play when her blood sugar was so low. How dare the officials allow her to do that? How could she play so well when I knew how lethargic her limbs must feel. Fortunately I realized soon after starting to cry in frustration for her that it was me that had the low blood sugar.

Funniest though was sitting on the couch several months ago and watching the movie Reds. The movie is about several CIA agents who have retired (selectively or otherwise) who band back together to avenge a friend's death who had uncovered a conspiracy plot. Actually, it's quite possible that I don't properly remember the plot - don't take my word for it. Anyway, I became convinced during the move that the characters were trying to warn me that MY LIFE WAS IN DANGER and that I was to be a victim of this conspiracy. I became so convinced that I became determined that I couldn't let Ellen, who was sitting on the other couch 10 feet away from me, know that I was now aware of this conspiracy as she might possibly be involved. For several minutes I was wrapped up in this hypoglycemia delusion and did my best to hide it from Ellen by sitting still and quite as possible. Like I said - I've never been angry or violent when low but if Ellen had questioned me at this point I might have reacted badly - so I can see how it happens. 

Interestingly, low blood sugar symptoms vary from person to person and from occurrence to occurrence but here's my short list:

- Tremors (more than usual) :)

- Sweating Buckets

- 'Prickly' Skin

- 'Itchy' Tongue

- Confusion (e.g., not being able to remember/say the right word)

And with my lowest lows:

- Tears

- Delusions

Time to start shoving in the candy!

An almost perfect 24 hours in between the lines

You've seen a picture of my Continuous Glucose Monitor (CGM) on the blog before but here's what an almost perfect 24 hours of control looks like!:

This means my blood sugar was between 80 - 180 for a 24 hour period. That's pretty close to perfection for me and is really difficult to do. There is very rarely a day that I get this kind of 24 hour view on my monitor - maybe once every few months if I'm lucky. The peaks represent meals and that one dip at the end was my run yesterday evening. 


Best of all - I got a night of sleep that was not interrupted by any alarms or buzzing. Booyah!


Of course this streak was busted by a couple of overnight lows and a high after breakfast this morning. Perfection is short lived.

All this sugar...

...and still got a low 35 miles in to my Saturday ride. What's it going to take? Not pictured - 1.5 bottles of Ironman Perform lemon lime which also has a fair amount of sugar.

My Diabetes Arsenal

As I touched on in a previous post, the most difficult part of healing after my pancreatectomy was learning how to manage my diabetes. There is so much information out there pertaining to Type 2 Diabetes and constantly hearing those messages got me confused about how I would or wouldn't be restricted as a  Type 1 Diabetic. Technically, I am a  Pancreatogenic Diabetic since I have no pancreas at all, but trying to explain that to people is even more difficult than explaining the differences between Type 1 and Type 2.

I'm happy to say there are some tools and technology that make being an insulin dependent diabetic a lot easier to cope with - my insulin pump and my continuous glucose monitor.

BTW - sorry about the orientation of the pics below. The blogging software isn't very friendly for orienting and editing photos.

I use an Omnipod Insulin Pump. This pump is the only one on the US market that has no tubing which means I can swim and shower without having to remove it. 

Clockwise from top: Omnipod Pump, Blood Glucose
Test Strips, and Omnipod Controller.

Every 3 days I take the old pod off and 'prime' a new pump with insulin. I then stick it on a good, fatty place - typically my butt - activate the pump and *pop* a cannula gets inserted in my skin and I start getting my insulin. Overall I am really happy with this system though I would appreciate a smaller pod. I'm surprised that more people don't ask what the lump on my butt is. Surprised, but thankful I suppose that I don't have to explain.

I was very reluctant to begin using a Continuous Glucose Monitor (CGM) - I already felt a bit like the bionic woman with one piece of technology attached to my butt - but my endocrinologist kept pushing and I eventually gave in after doing a trial and seeing just how powerful it is to have a constant view of how my blood glucose is trending. I use a Dexcom 7 CGM:

CGM applicator and CGM sensor.

Every 2 to 4 weeks I change my sensor out with the applicator. Wish I could say the application process is as easy as the pump - it's not - this one really hurts when it goes in because the needle in the applicator is bigger and it needs to insert a wire. Typically I put the CGM on my lower tummy where I've got an inch to pinch. A CGM monitors your blood glucose based on interstitial fluid rather than blood. This is not as accurate as blood and your actually blood glucose (BG) can vary as much as by 30 points but generally mine is within 10-15 points of my actual BG. I love being able to follow my BG trends visually and I'm pretty obsessed with checking it throughout the day - even when racing. It's a little less reliable when training or racing than a normal day so if I see it saying anything less than 140 I like to start shoving in some sugar.

You'll notice that in the picture above that my BG was 203 when I took the picture. *Sigh* That's what happens when you eat your breakfast starting with a BG of 80 and don't want to bolus and make your BG even lower - so I forgot to bolus. That's been happening a lot lately - gotta get that figured out.

I carry both my Omnipod and Dexcom controller with me when training or racing over long distances. If I could tell these companies anything it would be to make these things smaller. I had to buy new purses after my surgery just to accommodate all this stuff! I particularly look a little silly running with all this gear. In a future post I'll show you how I accomplish that.

Researchers are getting closer to actually integrating pumps and CGMs together so that they 'talk' to each other and would effectively act as an artificial pancreas. I'm very excited about that possibility and am crossing my fingers it will be soon though I really shouldn't get my hopes up since the pace of FDA approvals is glacier like. I suppose that's fair as a malfunctioning insulin pump will - there's no way to be delicate about this - kill you. 

I'll spare you the PG13 pics of what these devices look like once they're actually attached. :)

My (Long) Story

The about me section doesn't give nearly enough space to explain the journey that has led me to do this blog. Here's the full scoop...



I was diagnosed with a genetic disorder, Multiple Endocrine Neoplasia Type 1 (MEN 1), at age 11 after my father passed away from metastatic pancreatic neuroendocrine tumors.  In 1988 I had a subtotal parathyroidectomy due to continued elevated calcium levels and kidney stones that showed up during ultrasound. All other tests pointed to normal pituitary and pancreas functions. 


Life went on very normally for the next 20 years. I had occasional blood test monitoring for MEN 1 every few years with different endocrinologists in the Atlanta area and I took my good health for granted. My calcium and PTH levels continued to be elevated but all other hormone levels were normal and other than some osteopenia I felt no other complications.


In July 2008 my sister was diagnosed with metastatic pancreatic neuroendocirne cancer. This was a shock to my entire family since Debbie didn't demonstrate the elevated calcium or PTH levels that I, or eventually, my brother did. We had thought that she had escaped the genetic disease and, unfortunately, we hadn't as a family taken advantage of the genetic tests that had become available since our childhoods. Debbie fought hard and, as she did throughout her life, she taught me a lot of lessons before she passed away in February 2009.  


Debbie's diagnosis was a wake up call that sent me searching for a doctor or facility that was familiar with MEN 1 and neuroendocrine cancer. I underwent testing at Mayo Clinic in Florida between September and December 2008 and was found to have new parathyroid tumors and several neuroendocrine tumors in my pancreas. I had a total parathyroidectomy and auto-transplant into my forearm in October 2008 and after a lot of thought on my part and advice from the staff at Mayo, I had a total pancreatectomy in December 2008.     


Since then I have returned to triathlon. It's been a big challenge as I have had to learn to train and compete again as the equivalent of a type 1 diabetic. Now I'm ready to take a stab at Ironman and am training to compete at IM Canada in August 2012.


So this blog will be about a lot of stuff... primarily I want to record my Ironman journey - that's for me more than anyone else and it will help me avoid posting all of it to Facebook. I don't think a good deal of my FB friends care whether I ran, bike, or swam that day and are hardly impressed. :)


But I also want to talk about what it's like to do this as a diabetic. What it's like to survive and be fundamentally altered by cancer. What it means to have a genetic disease that has so drastically affected me and my family. How I'm getting through the grief of losing my sister - I'm sometimes shocked that is still such a work in progress. Maybe some of that would be helpful to the reader - we'll see. 


Thanks for checking in!