Part 6: Wearing a Continuous Glucose Monitor as a non-diabetic Physician: Feedback from People Living with Diabetes

2018.10.07 Low Carb and Low Carbon 550
2018.10.07 Low Carb and Low Carbon 550 (View on Flickr.com)

As I mentioned in part 1 of this series, a significant reason for me wearing a continuous glucose monitor (CGM) was to understand (a very small portion) what it might be like to have diabetes. I will never fully understand what it is like to have diabetes, and I know that. I do understand what it’s like to be a fat person in society, as I have been one previously. Also, when I speak of diabetes prevention, diabetes reversal, diabetes remission, I am speaking of Type 2 diabetes, which accounts for 90-95 % of the population living with diabetes.

For people with Type 1, insulin is not optional and diabetes reversal or remission is not a possibility (for more on managing Type 1 Diabetes with nutrition, see this blog post: Just Read and Just Visited: Duke Diet and Fitness Center and Management of Type Diabetes With a Very Low–Carbohydrate Diet – More reasons I love this century )

I also addressed the rising cost of insulin in this post: Just Read: Insulin Access and Affordability Working Group: Conclusions and Recommendations

After my last post sharing my data (see: Part 5: Wearing a Continuous Glucose Monitor as a non-diabetic Physician: Beginning to Share My Data), I received these helpful comments, which I’m posting here (one was sent via email, I’m posting with permission)

Hi. I read your series on trying out a CGM as a non-diabetic physician. As some one with type one, thank you for taking the time to try and understand a portion of what it is like. I wish more doctors would give it a try. Along with adjusting how they treat patients who are transitioning from being noncompliant to compliant. I don’t remember exactly which part it was where you mentioned where lows shouldn’t be a major issue unless you are not sensitive. I would say most type ones I talk to are always scared of the low. That unexpected one that can kill you. Which causes some Endos along with patients to want to run higher because it’s less scary. I personally use the Medtronic cgm at the moment. The main reason I got the cgm after fighting with my Endo, was for high blood sugars. Because even though lows are more dangerous short term highs are more dangerous long term. I got frustrated with my doctor that one I had to fight for the cgm. But even more frustrated when she said I must be going low too much to get an A1c of 6. So she told me to adjust all my basal rate to basically raise my A1c. I switched doctors but understand the fear of losing a patient to low blood sugar or having to deal with seeing them in the hospital because of a low. However I just wanted to be in better control because I felt better and it was a healthier way to lose weight and keep it off. I hope you continue on this research and path. I am going to continue to follow your post on this. I do have one request. When you talk about diabetes and either prevention or reversing can you please clarify type 2. This is something I have been dealing with for years. Where people think oh you did this to your self or you can reverse it so how bad can it be. Well in some cases of type 2 you can put it in remission. That is not the case for type one. I will never get to stop testing my sugars or taking insulin no matter how healthy I am. Thank you again for taking the time to reading my reply along with trying to understand. It makes a difference.e-mail communication

and

Thank you Ted for this great information.

As a healthcare worker with 21 years hospital experience who is the grandmother and caretaker of a T1D child diagnosed at 2 yrs (she just turned 5), it is IMO, incomprehensible for the average medical pro to be able to understand the daily and often, nightly grind the patient endures. Not to mention what the caregiver endures in the case of children or disabled patients.

I seldom sleep more than 2 hour stretches when I babysit overnight just because of the responsible paranoia (for lack of a better term) that I’m burdened with to constantly check the blood glucose levels. Finger sticks used to be my norm until the CGM was approved.

This paranoia is the legacy of fear after witnessing an urgent low that I almost missed in the early days after diagnosis before the CGM was approved by the insurance company. She could easily have passed away under my watch and I could not live with that and I won’t risk it happening again.

For that reason alone, I would have bought the CGM outright and out of pocket (OOP) if I’d known what a lifesaver it is. I recommend it to anyone with a diabetic child who is made to wait for prior auths and insurance approval processes. They can be reimbursed later by insurance, but even without insurance, it’s more important to any parent than any other expense. Just my opinion after too many sleepless nights of 2 hour finger pricks.

Another reason I have to thank you Ted, is that I recently checked my own glucose just out of curiosity in the middle of the night and discovered it was higher than it should be in a non diabetic. I’ve rechecked several times and it’s consistently elevated and it got my attention. Despite a healthy diet and 5 days a week of lifelong exercise and being metabolically fit according to my annual labwork, I’m apparently on a collision course with diabetes.

I’m not waiting or guessing before requesting a prescription for my own CGM and sensors that I’ll pay for OOP. The cost is no small matter considering that the sensors for my GD’s device is $400 (covered by her insurance) for a 1 month supply. The reader cost $700.

I’ve concluded that the general population and healthcare industry would benefit from a future less expensive CGM program because it would help turn the tide in the growing epidemic and fight against diabetes that’s just not realistic at the current price for the technology.

It’s what preventive health care is all about if it can be made available and affordable.Comment on this post: Part 5: Wearing a Continuous Glucose Monitor as a non-diabetic Physician: Beginning to Share My Data

Disclaimer and this is not a promotion of CGM-for-all

I’ve been asked directly or indirectly recently if I am advocating CGM-for-all. I am not, and definitely not with the current profile of devices available. This could change dramatically if CGM is more universally available (see blog posts above).

Reminder of my statement of independence and no conflict-of-interest:

2018.05.29 Low Carbohydrate Meetup Washington, DC Presentation  453
2018.05.29 Low Carbohydrate Meetup Washington, DC Presentation 453 (View on Flickr.com)
Ted Eytan, MD