In 2012, I was diagnosed as Type 1 Brittle Diabetic. I had an Animas pump for 1 year then switched to a Medtronic 530G without a cgm. I added a Guardian connect cgm about 2 years ago. I upgraded to a Medtronic 670G with the Guardian 3 cgm in July 2020. I’ve had now 3 diabetic seizures - the most recent was a week ago. I have also dealt with the same issues as pretty much everyone with the pump constantly saying to calibrate/check BG or issues with the cgm. I try to change my transmitter either early in the day or no later than 5 pm bc of the constant ‘calibrate/check bg’ alerts or an alert saying change sensor. It’s extremely frustrating to deal with esp when it goes off all night. I try to stay in auto mode but once the transmitter is on the charger, I go under sensor settings and turn the sensor off until I replace it. My endocrinologist complains that I am out of auto mode too long and I’m the “only” patient who has the problem which frustrates me to no end. I’ve read through many of the posts and have gotten some good information and hope it helps.
It’s maddening when a physician doesn’t see you as an individual. So you are their only patient experiencing this - so what? That does not make your concerns any less valid. Okay, I’m fine preaching to the choir.
I’m glad you’ve found the forum and have evidence that you’re not alone. Are there any options for switching to another system since this is not working for you?
Something you might look into that might help with peace of mind is the Freestyle Libre2. My doctor prescribed the Libre for me as a backup in case I have issues getting my Dexcom supplies. Please check the details for yourself but I understand it has alerts. You do have to swipe the receiver across the sensor and I don’t know how that works with the alert function, but it may be worth the peace of mind. If you don’t mind my asking, how do things go when you’re operating manually?
One last thing in case you didn’t know - there’s an images form of Glucagon available now.
UGGHHHH - we haven’t used the term “brittle” in decades - it just means that you don’t have the right endocrinologist/team. Consider using the Dexcom CGM paired with the Tandem IQ and LOTS of great training.
I was thinking I hadn’t heard that term in a very long time.
That’s the pump I wanted but my endocrinologist overrode me.
Sonya, you have been significantly misled. And this statement of yours is wrong!
Within the last 15 years, two well respected endocrinologists, acting independently, have told that I have “brittle diabetes”. These diagnosis follow, and confirm, a diagnosis I received in the 1960’s from the Medical Director [my physician] of Joslin Clinic. His “brittle diabetes” diagnosis was clinically confirmed in the early 1970’s during a week long confinement in the Joslin Teaching [inpatient] Unit; this was during the final development stage of Glycosylated Hemoglobin [HbA1c] development - I was the subject that did not fall under the curve.
You may not believe that the Joslin researchers and staff are the “right endocrinologists”, but let it be know that the Joslin Clinic / Joslin Diabetes Center has been the leader in diabetes treatment, research and teaching since its founding in the late 19th century.
Hi Dennis! @Dennis
Can you please explain what a brittle diabetic is and how it is different from “normal” type 1?
Hi @homeschoolingmomof5 I realize I’m not @Dennis but brittle diabetes is most often a description of “hard to control” diabetes characterized by rapid, wild, and often random blood sugar swings. A young doctor also explained it can sometimes refer to patients who make no insulin, as opposed to type 2 diabetes or people with non zero c-peptide. The 2 go together actually because blood sugar is harder to control when You make no insulin. Today i think brittle means more of the really hard to control blood sugar. Hope this helps.
Julie, sorry to hear about your challenges. This disease sucks.
I don’t know how you react to tends on your cgm. I am cautious, especially when I’m leaving to drive. I take at least one tab at 100.
I’d say, have an eagle eye on your sensor readings. Better to drift a little high, than to go paramedic low. I know, I’ve been there.
And be sure to get a new Endo. You need that.
Hi @scjp59. My understanding of the term “brittle diabetes” pretty much mirrors what @joe said about the rapid, wild and often random BG swings, plus I’ll add my understanding that these didn’t (don’t) respond as expected to corrective measures taken; and that while most of us who take insulin do have times when our numbers aren’t responding as we expect them to, with brittle diabetes the unpredictability is much, much greater. When pumps first came on the scene I recall hearing the hope that they would be able to make things more predictable and manageable for those with brittle diabetes, perhaps even doing away with the term. Hope springs eternal and again this is just something I heard, not a promise. It has not come to pass for everyone.
When I first first first started pumping my endo at the time recommended Minimed: in his opinion it was the best of the options at the time, but he did let me have the final say based on my own research, discussions with him about comparative features, etc. If I were you I would look into finding another endo. I don’t need to tell you that brittle diabetes has its own special challenges, and someone else may be more willing and better able to work with you and help you get and incorporate the tools you need. Tandem CIQ may not be a miracle for you - for any of us really as we still have to use the tool correctly to get the benefit (as you already know) but hopefully it can make things smoother and hopefully a new endo will work with you to see if that’s the case.
Yes - I was very fortunate to work with Dr. George Eisenbarth at the Barbara Davis Center. He was previously also the director at the Joslin. I agree that it is a wonderful institution.
My point was just that the tools are much better now with APS technology and new insulins.
My sister was also told she was “brittle” back then so I understand.
Thanks Joe! @joe That makes more sense!
Hi Julie,
I have been a brittle diabetic for the past 69 (sixty-nine) years so I have a perspective that covers 5 endocrinologists, 8 primary care physicians, 4 diabetic educators, 1 dietician diabetic educator and 1 Nurse Practitioner practicing endocrinology. I moved around a lot, I was not shopping for brittle diabetic care givers. I did not have a panel of diabetics to use as resources.
I was started on a pump 20+ years ago and it was a night and day difference for me. I now have a 670G with CGM and have 2 successive HbA1c’s at 6.8, a first below 7 for me.
I have had endocrinologists tell em that I know more about my pump than they do, that they have no idea what an acceptable HbA1c level should be for me. I am currently under the care of my ARNP and have been for 5 years. I have arrived at my most stable status under the supervision of my ARNP supported by the team of diabetic educators at my disposal.
Having unintentionally hopped over more than the usual number of endocrinologists, I did not find that to be helpful for me.
Those people who spend their day, every day, all day, working with diabetic patients are, in my experience, the most helpful in resolving the issues associated with T1D that affect us.
I found that those most helpful in resolving the issues worked over and thru my night-time aand late afternoon hypoglycemic episodes, my morning hyperglycemic episodes, made recommendations for pump changes, dietary modifications, and challenged me to make changes when I was resistant to them.
This perspective is different and will hopefully help to raise your hopes that there are capable people out there who provide services to diabetics every day.
First of all congratulations on nearly 7 decades - brittle diabetes makes that a particularly commendable achievement.
What is an ARNP? I’m not familiar with the term. Thanks much.
Advanced Registered Nurse Practitioner. She is a Registered Nurse who has taken more advanced courses and has obtained this title, allowing her to provide medical services under the supervision of a physician. Hope that helps.
Thank you very much.
I had Medtronics 630 G but I returned it as I was in that return period. My endocrinologist suggested to go For Tandam pump and Dexcom G6 system they’re working excellent. I am super happy with the results. Dexcom G6 is almost 100 reliable. If possible go for Tandam pump and Dexcom system. Your life will totally different and l am sure you be very happy with the results as well.
For that very reason, I no longer use Auto mode. You can still use suspend on or before lows, but their algorithm does not work for many people. My times in range is 96%. They say the 770G is supposed to fix it and I am waiting for mine next month. It really is my belief as someone living with this for 50 years, 25 on a pump, that we control the disease better than an algorithm. Maybe I will prove that wrong with the 770 but who knows.
Thank you. I wanted the Talim and dexcom G6 but my endocrinologist said to go with Medtronic 670G and Guardian 3. I regret it.
I’m a brittle diabetic because my pancreas has been surgically removed