Big Diabetes Data Requires Big Analyses

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If you’re anything like me, you’re currently clocking data on your CGM, your insulin pump, your BG meter, and any other number of devices including mobile apps for diabetes, fitness, or menstrual cycle, and wearable fitness devices like Fitbit.

It’s easy to look at one post-meal high and make a judgment call.  But it’s really hard to look at months worth of data and try to pull out patterns to really improve overall BGs and health.  Websites that integrate with my OmniPod and CGM (and are Mac compatible…don’t get me started on this…Gah!) only have the capability to really track BG and carb counts well.  But we all know it’s the type of carbs, not the number of carbs that really matters.  Also, was I especially active on a particular day?  Stressed from a big meeting at work?  Having PMS?  So many variables to consider!

big diabetes dataSince I already have all the BG and insulin data on my pump, meter, and CGM, (that I’ve laboriously collected!) I literally fantasize about just uploading those items to a single program online and then using apps of my choice to input details about my other “life variables,” such as food, exercise and activities, moods, monthly cycle, etc…..and finally (here’s the kicker) have the apps sync their data with the existing pump/meter/CGM data online in the same program!  Perfect!  Easy!  Right?  No way!

As you’re probably well aware, most of our diabetes meters, pumps, and CGMs have proprietary software and/or limited relationships with other diabetes-device companies.  So, based on who manufactured our devices, we’re all pretty much limited to one or two platforms for viewing the data…and those options sadly don’t integrate with apps we’re using to track our food, fitness, etc.

My current work-a-round solution for viewing OmniPod and CGM data (on a Mac) is Diasend, however even here you need a Clinic ID# (or to register as a non-US citizen) or your CGM tab will be grayed out.  I also use the mySugr app for logging (btw…I love mySugar), Google Cal for my monthly cycle and HRT, and just started tracking activity and sleep with a Fitbit Flex.  I make it work but it’s still me piecing together data from four different locations.

fitbit open apiFortunately (and just in the nick of time if you ask me) the US is at the beginning of a wave of personalized, data-centric healthcare, sometimes called the Quantified Self.  A lot of new data collection platforms designed for non-PWDs (like Fitbit and Lose It!) are using open APIs, which means they share and can integrate data.  After years of finding work-a-rounds and “making do” I feel like the current big data trend in healthcare is finally going to make my fantasy a realty…in the very near future.  So, everyone put down your proprietary diabetes devices for a second and raise your glass!  Here’s to hoping!

Super interested in the Quantified-Self movement like me?  Here are a few really cool recent articles:

Will An App A Day Keep The Doctor Away? The Coming Health Revolution (Forbes)

Solving America’s Big Health Care Challenges With Big Data (Huffington Post)

How Patient Generated Data Changes Healthcare (Information Week Healthcare)

I Ate an Entire Tube of Glucose Tabs During the Night: So Much for My SoloHealth Station Assessment

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Wednesday night was date night for my husband and I, just a relaxing dinner for two.  We planned to make it an early night (since I had a cold) but didn’t want to get home before the kids were in bed (sorry sweeties…we love you but mommies and daddies sometimes need a little break).  So, we stopped at the drug store to pick up a couple of things, where we spotted the SoloHealth Station and, being in no rush to get home, decided to give it a whirl.

Love Tester MachineOk, I confess we were a bit like kids playing around with the old-school “love testers” at the fairgrounds.  “My turn, my turn! Yeah, take that test too! Giggle, giggle.”

Turns out my husband could stand to work on improving his sleep patterns, but me? I passed all the tests with flying colors, including BMI, Blood pressure, Sleep Assessment, and a Health Risk Screening.

SoloHealth Station

I’m not the most photogenic person. My husband is forever laughing and calling me out for “talking” during the picture.

However, last night I definitely wasn’t’ the shining example of health portrayed by my friend, the trusty SoloHealth Station. Last night I was low, low, low.  Don’t you wish there was an easy or obvious answer for every bout of irregular blood sugar readings?  I may feel guilty when I miscalculate my carb intake and end up high or low…but at least I know why!  I find it infinitely more frustrating to be left guessing…or to have irregular blood sugars for some other reason that I have no control over, like an illness.  While I do have a pretty wicked head cold right now, I’ve already had it for about 5 days and usually being sick raises my sugars instead of lowering them.  Last night my CGM woke me at least 4 or 5 times!  A couple of those times I was only a little low, so I just popped a single tab or two and fell back asleep (thinking the issue would be over).  Only to be woken again, and again, and again.  Finally I was woken in the 40s and upon dragging myself out of bed I realized that my menstrual flow had gone haywire in the night and was extremely heavy.  Huh? Now I’m sick, having hard-to-ditch low blood sugar in the middle of the night, and a heinous menstrual cycle?!  Is this the Universe’s cocked-up way of letting me know it’s Friday the 13th?  Not funny Universe…not funny.

Dexcom CGM low nightAs bad as it is, I’m thankful for my CGM and the peace of mind it provides in situations like this.  What could have happened if I didn’t have it?  After all, I was pretty zonked out on cold medicine.  This isn’t the first time since having my second child and going back on HRT 6 months ago that I’ve had a crazy girl cycle.  Guess it’s time to bite the bullet and go to see the Dr again just to be on the safe side and make sure I’m not missing anything (short of the Universe’s evil Friday the 13th plan, of course).  But, it’s also definitely one of those mornings where I wish I could just catch a break.  I wish I could just be an average Joe, someone who could actually use the SoloHealth Station (with it’s simple metrics and variables) to get a realistic snapshot of my health.  Sigh…

I Heart Silicone Medical ID Bracelets ♥

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Like most of us, some things “diabetes” I’m good at and some…not so good.   An area I usually excel in is being a “good girl” and wearing a type 1 medical ID bracelet.  I’m not the kind of person that wears a lot of jewelry on a regular basis, nevertheless, when I first started wearing a diabetes ID, I tried out a few different kinds of bracelets.  Most of them were very jewelry-like, lasted a day or two, and now sit in a drawer collecting dust.  Once I discovered the ease and beauty of simply wearing a piece of silicone, I never went back to the other “prettier” bracelets.  Silicone works for me because I don’t have to worry about getting it wet or getting food on it when I’m cooking; the kids can pull on it and play with it; I can shower, sleep, swim, play sports, and generally be active all while comfortably wearing it…and it still looks like it did on the day I started abusing it 4 years ago.

While I can’t control when or if an emergency situation might occur, I can try to have important info on hand (pun intended).  So, if I’m going to wear the darn thing every day (in case of an emergency), I don’t just want it to say “Type 1 Diabetic” on it.  I want it to at least list general medical information and my husbands phone number.  I really like the idea of providing a phone number of someone who knows what medications and dosages I’m on, who knows my kids and their schedules.  I find it comforting.

Geez, how can I fit all that information on a wristband?

I found a lot of bracelets that have tiny little pieces of papers or cards in them that you’re supposed to be able to neatly fill out with personal information.  Sorry, but my handwriting is not that good (or that small).  Plus, it’s paper…what kind of life expectancy can that little slip of paper have with stinky toddler fingers, days at the pool, and sinks full of dirty dishes?

custom silicone diabetes wristbandI’ve researched endlessly online to find a company that will let me add multiple lines of custom text to a silicone bracelet (without requiring a minimum order of 50!).  Here is my favorite: Design-A-Band.  OK, admittedly, their site might seem a little hokey but I’ve ordered various bracelets from these guys over the years and they’re always spot-on!

silicone medical type 1 diabetes bracelet frontAnd…drum role please…here’s my current favorite wristband: tried but true, worn day in and day out for 4 years, and glow-in-the-dark.  On the outside I have some basic info that the whole world can see and on the inside, I have personal medical information and contact phone numbers.

silicone medical type 1 diabetes bracelet backI’m on a continuous quest to find ever cooler looking, totally customizable silicone wristbands.  I’ll keep you posted…

Got one you really like?  Tell us about it!

Synthetic Hormones and Type 1 Diabetes: A Call For Sharing Personal Stories

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A FEW NECESSARY FACTS:

There are many reasons for taking synthetic (and largely female) hormones, including fertility treatments, sustaining pregnancy after IVF, Premature Ovarian Failure (POF), Primary Ovarian Insufficiency (POI), perimenopause, and menopause.

All these conditions (and normal menopause without hormone replacement therapy – HRT) greatly affect our insulin sensitivity and can require seemingly radical (and scary) changes in one’s insulin regime.

In addition, Premature Ovarian Failure and Primary Ovarian Insufficiency can be caused by an autoimmune disorder.  Ugh, sound familiar?  AND, it’s common for individuals with one autoimmune endocrine disorder to develop others.  Boo Hiss!  Studies on both of these phenomena are ongoing and the mechanisms aren’t fully understood (or easily determined with lab tests).

major endocrine glands     hormone balance

Here’s a pic showing all of the endocrine glands in our bodies and another showing how hormones made by some of these glands are interrelated.

A BIT ABOUT MY STORY:

I experienced major insulin sensitivity changes when I developed sudden-onset POF (at age 35) and started on HRT (the most bioequivalent versions I could find).   I also went through my second pregnancy while on synthetic estrogen and progesterone (same hormones as women who undergo IVF), and am now looking to get regulated back on HRT since I’m done breastfeeding (and apparently still post-menopausal).

As a T1 with Grave’s Disease (autoimmune thyroid condition), I was able to find a lot of information and personal stories shared online (years ago!) about people with thyroid disorders and type 1diabetes.  But, when it came to a diagnosis of POF and subsequent HRT and pregnancy, I couldn’t really find anything.  My Endo didn’t even know there was a link between POF and other autoimmune endocrine disorders (Gah! Needless to say, I see a different Endo now).

WANT TO SHARE YOUR STORY TOO?

I wish I had been educated (at least a little bit) about some of these issues and how all of our endocrine glands and hormones really affect one another before my body became the ultimate lab experiment.  I’d like to share my experiences in the hopes of helping and relating to others and am looking for other women who would be willing to share their experiences as well.

What hormones were you on/missing?  Were you undergoing hormone treatment for infertility, POF, POI, IVF, normal menopause?  Was your hormone treatment cyclic in nature?  Was it bioequivalent?  How did your insulin sensitivity change?

I’d love to start a page on my blog that could serve as a central place for women to share their stories about major hormone changes (especially synthetic hormones and menopause) and how they affected blood sugar and insulin requirements.  Drastic hormone changes are bad enough without also feeling isolated on the diabetes front.  Please contact me if you have a story to share.

While I’m sure our experiences were quite different in some respects, one thing we’ve all faced is trying to adjust our diabetes management to meet the demands of hormone-induced insulin sensitivity changes.  Let’s share our stories!

 

Here are a few more-scientific articles related to hormone-insulin relationships and autoimmune hormone disorders.