Every time my Dexcom CGM alerts that I have low blood sugar, I immediately draw in a deep breath, sigh, then I get an almost immediate text message from my husband who follows my Dexcom alerts with a phone app. “Are you ok? is the alert accurate?” I double-check with my glucose meter… If I am low, I eat some smarties for dextrose to bring my levels back into range and then text him back with an update to reassure him that everything is ok. Then in about 20 minutes, I get another text – ” are you still doing ok?” – “Yes – I am ok”.

Sometimes the alerts are genuine and sometimes they are false alarms. I get more false alarms than real ones these days, now that I manage my type 1 diabetes with a very low carb ketogenic diet. Those alerts, however, are just as stressful as the real ones because it triggers my adrenaline and my husband’s adrenaline and requires an immediate response either way. I’ve heard my diabetes educator discuss it as “ALERT BURNOUT”. I can tell you that it is very real.

Back when I was eating large amounts of carbs (up to 200g per day) as a “well-managed diabetic”, and trying to bolus accurately for those carbs, I would have 10-20 anxiety-inducing alerts per day.  Blood Glucose going up too fast, going down too fast, bolus reminders, severe high alert, severe low alert, insulin reservoir low warning, cannula blocked, CGM communication lost…. and on and on and on.  I got to the point where I would disable as many of the alarms and alerts as I could because it was causing too much stress all day long. My anxiety was incredibly high and I sincerely hated the stress and anxiety that it causes my husband and my daughter. That, in turn, caused more anxiety. Then, when they find out the alarms are turned off – they worry more because they don’t know if I am ok or not when they are not with me.

I don’t talk about this often because it makes me very emotional, and it isn’t easy to talk about either, but Type 1 diabetes is not just hard on me as a patient, it’s extremely difficult on the entire family – friends too. 

The reality of it is… that this disease can be deadly. You can die in your sleep, or if you miscalculate an insulin bolus, have an unrecognized hypo while driving, or walking in the park, or run out of insulin and can’t treat an extremely high blood sugar. It is a very hard reality to come to grips with. It is scary, but eventually, you begin to realize that it is manageable and many type 1 diabetics live very long healthy lives.

I think as type 1 diabetics, we don’t talk about it often and we tend to downplay the seriousness of it all so that we can first of all – function and also to help reassure our family members that everything will be ok. After all, we do need to go on living our lives.

So why do I talk about this? Because the stress on me and my family was a huge motivating factor in my decision to go very low carb with my diet. Instinctively I knew that the high doses of insulin I had to inject to cover the carbs I was eating were making it more difficult to manage. I was also recognizing that the higher carbs and higher blood sugars were making the inflammation I was experiencing from Lupus much worse.

I knew there had to be a better option. Then, when I read Dr. Richard Bernstein’s quote from his book, Diabetes Solution, – “Big inputs make big mistakes; small inputs make small mistakes.” I knew I had a solution to at least part of the stress I was experiencing. It is so obvious and so simple. I just needed to remove (reduce) the problem – and the higher carb counts were my problem.

Removing the high daily carb counts from my diet immediately reduced my need for the large boluses of insulin. My glucose levels became steady within 24 hours of limiting my total daily intake of carbs -eliminating all the roller-coaster ups and downs of my blood glucose. Then, the high anxiety associated with all of the alarms, alerts, the highs, and the lows started to reduce because my glucose levels were so steady.

Two years ago, in October 2017, I started reducing my carbs to 40-60 total carbs a day, and then in January 2018, I reduced my total carbs to 20 per day. Limiting my carbs to 20 total per day has changed everything about my type 1 diabetes. Everything improved.  And yes, I do mean everything.

My A1C has been within the normal non-diabetic range for nearly 2 years now and my standard deviation average stays around 11 or 12. Some days my standard deviation is   7 to 10.  I have not had a type 1 diabetic emergency in 2 years. No extreme highs – no extreme lows. No diabetic related illness such as infections in my kidneys which was a common occurence before.   I am noticing that my body is healing gradually from damage that done from having a “well-controlled diabetic” A1C of 6.5 to 7.5.

I don’t have the daily anxiety and fear that I had so much of before and neither does my family. You can literally see the relief on their faces when they talk about the change. Everything is better, less stressful, more managed. Mentally, I know we are all healthier. I know we all sleep better at night and that constant high alert state is not there like it once was.  

I can’t imagine having it any other way now.  I am left wondering why I had to go through 10 long years of high anxiety and erratic blood sugars caused by the standard diabetic diet before I made this change on my own. I have to wonder why so many MD’s and dietitians refuse to see that this is a much better option.   

 I know one thing for certain – I am healthier and happier as a very low carb T1D. 

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