Hello everyone. My name is Tony and Thank you for taking time to read my plea for help. I have been a Diabetic Type 1 since 1986. I served in the USMC and discharged Honorably with no disease. Shortly after my discharge I became ill with the Diabetes. No one in my family has ever had Diabetes Type 1. I’m the oldest of 5 which conforms of 3 bothers and 2 sisters with no Diabetes. My parents did not have it or grandparents. If it is not contagious where I got it no one knows. Lately I have had allot of Hypoglycemia attacks. I got it to the point of like an epileptic attack. I’m unaware of my low blood sugar attacks and according to the people around me I get belligerent, hostile and in raged. I become defensive and hostile. As a maniac with no reasoning. People would say I’m drunken ignorant person or a drug attic of some sort. My wife has become tired of the situation and maybe wish for my disappearance. I understand but where do I go with this type of situation. I’m in general good health other than my diabetes and the low blood sugar attacks. I saw my endocrinologist and she said do not skip meals limit your excercise keep glucose tablets handy on you at all times and prescribed a glucagon needle injection. The sad thing is Im unaware of my hypoglycemic attacks to take proper action and by the time I become aware it is to late. Back in the 90’s I remember a watch on the market to keep track of your glucose levels but it is no longer in the market. Would anyone have any suggestions? I would greatly appreciate any input. Again I Thank everyone just for reading my plea. I wish everyone the best and cure for any illness you may have.
Respectfully;
Jose Antonio Lugo
Hi Jose. Have you considered a Continuous Glucose Meter (CGM)? It’s been a savior for me.
@tony131065 hi Tony.
Believe it or not, your story of being the only one in your family with T1 is very common. T1 isn’t like the flu either, people cannot pass T1 to each other.
Hypo unawareness is also something that happens. When you are hypo, it will s possible to become combative. It is essential that you start to connect these feelings with blood sugar and test and have carbs handy and ready.
Your first defense is a habit of blood sugar testing. How often do you test and at what times.
Next is a snack of protein and carbs at bedtime to help prevent a low overnight
Yes you can get a CGM if you like technology and have the insurance for it but many of us survived before CGM was invented and CGM does not work for everyone- still it is a tool you can try
Thank you for your military service. I am sure you can appreciate that dealing with T1 is a matter of adapting and improvising.
Welcome to TypeOneNation. Please consider reading “Think like a pancreas “ and I hope to see you posting about how you are doing.
Thank you Lizzie, I got on the Free style web site and was not able to receive one because I’m not a current Free Style user. I was told to see my doctor / Endocrinologist and have the Doctor write out a prescription and take it to a CVS pharmacy since my current health insurance is Blue Cross & Blue Shield FEP 104 Standard. I usually get my meds through Caremark mail in pharmacy. But I was told to take it to CVS pharmacy. I’m contacting my Doctor and see if she will prescribe it without seen me. Since I just saw my Doctor a week ago she prescribed the Glucagon needle which I received yesterday through UPS. She did not prescribed the Free Style thing and hopefully she will without me having to see her again. I do have an appointment in about 3 month’s which is my normal visits to see the doctor. Anyways Thank you very much for the information and I sincerely hope that soon you will be cured. You are indeed a caring soul.
Respectfully;
Jose Antonio Lugo (Tony)
Hi Tony @tony131065, you are not alone in what you are experiencing and I agree with everything @joe wrote. I will stress that you begin checking your blood glucose levels frequently and try to do these checks at two to three hours AFTER a meal in addition to before meals; also check before bed and if necessary during the night.
The reason I stress taking a BG Check after meals, it will tell you how effective your mealtime insulin dose is compared with what you are eating. I suspect that you could possibly be taking a little too much insulin. My diabetes started 30 years before yours and in the last three or four years I was not noticing when my BG was dropping before it was too late - like what is happening to you. Last summer I began using a continuous monitor [a CGM] so now I’m alerted loud and clear as my BGL drops in time to get something eaten.
I hope you find a solution soon, stick with it.
Tony, I met an Abbot Freestyle last week at a JDRF meeting. She told us that with a prescription from your doctor, and with BC/BS [Florida] that your out of pocket cost should be $0.00 because the Freestyle costs no more than if your doctor wrote a prescription for you to do BG Checks multiple times every day - the 8 checks I suggested.
For those without insurance, the maximum cost, according to Abbott must be less than $75.00 per month.
Hi Jose. I just heard about the Free Style and, from what I was told, eliminates the need to finger prick multiple times per day. I wear an insulin pump with a CGM and it requires calibration to ensure the CGM is accurate so the Free Style doesn’t work for me. The CGM I use is called Guardian from Medtronic, the same maker as my pump. I’ve been on a pump for 20 years and a CGM for about 10 yrs on & off so I was fairly used to having the CGM update my pump with my glucose reading. I just converted to the new Medtronic 670G system, which is a closed-loop system, kinda like an artificial pancreas. It takes some getting used to. Basically, the CGM reads my blood glucose constantly and sends it to my pump which is just what my old system did. The new thing with this system is this Automode feature which, when turned on, will adjust my basal level of insulin based on my blood glucose reading! If I start to go high, it gives me more insulin. If I start to go low, it reduces my insulin. It only does that based on what my average insulin usage is. It also requires a lot of calibration to ensure safety (per FDA requirements).
The reason I asked about a CGM to begin with is because I used to always get symptomatic of low blood sugar. But as I got older, I started going low without any symptoms which my endo says happens. One day, I went so low, my teenage daughter had to call 911 because I was unresponsive. When they arrived, my BG was 20! CGM gives me a piece of mind, like a safety belt. I too have CVS Caremark mail order for my Rx’s as well as my pump and CGM supplies. My health insurance, Anthem BC/BS requires those medical device supplies be filled by CVS Caremark mail order as well, which is unusual cause they’re considered medical devices and, as such, are usually covered under Major Medical. Who knows?
When you talk to your doc, make sure you get an Rx for the sensors as well as the device itself. I know mine are pretty pricey even with insurance.
Good luck. Hang in there. You’ll get this under control! Let me know if you have any other questions. I’ve been dealing with T1D for 43 years, every since my 16th bday!
Lizzie Cole
I have the same problem including the attitude, went to a Dexcom CGM it has alarms on it so once you set the alarm and your BS goes above or below your setting the alarm goes off and gives you time to correct the problem. My husband couldn’t wake me one night and after pouring a coke down me to wake me, we decided to go with the CGM by Dexcom, no more problems. Check it out.
Hi Tony @tony131065, what I didn’t mention above is that the Freestyle is NOT an active CGM, but rather it is passive - meaning that the user needs to take positive action in order to obtain readings.
With your apparent unawareness of when you pass into hypoglycemia, I will not recommend the Freestyle for you.
You should try some other cgm’s( continuous glucose monitor). I am 13 years old, and I have been diagnosed for just a little over three years. The last two years, I have been using the Medtronic 670g with its connecting CGM. It helps to monitor my blood sugar and make sure that I am aware of my blood sugars. It’s my blood sugar goes too high, it will give me tiny micro boluses Keep Me Down. If my blood sugar is too low, it will automatically suspend my insulin so that I don’t go lower. It is truly a life-changer! I am about to go into high school, and so far it has helped me so much to be more independent. And I don’t have to worry as much as I used to about what my blood sugar is and if I am going to go low, if I’m going to faint or if I might fall asleep and not wake up the next morning.
Hope this helps!
I was the only one in my family with Type 1 diabetes. After 15 years, I began to suffer from hypoglycemic unawareness. My family could still tell when I was hypoglycemic from the way I talked. My speech used to sound like I was drunk when my sugars were low. But after another 25 years they could not. The Dexcom CGM has been a lifesaver for me, as it wakens me with loud beeps if my BG gets too low. That way I do not ever get so low that I cannot treat myself. Before that, I had had 2 instances of low sugars where I actually passed out (in 1978 and 2005), both times at the wheel of my car.
In 1978, there were not even meters to verify sugars, only urine tests. To get a blood glucose meant a trip to the hospital and a wait of 4 hours. So CGM’s are truly lifesavers.
Tony,
I have a very strong case of Hypoglycaemia Unawareness…
And the Freestyle Libre is a passive CGM or a CGM on demand… it is not continuously monitoring your sugars unless you use the MiaoMiao and xdrip/Spike to get high/low alarms. I was also told many times it is geared toward those that are more of the type 2 variety of diabetes or those that do not have hypo unaware.
The one that is the best IMHO is the Dexcom. It alarms you at YOUR set low (mine is 70), manufactures low (you can choose 50 or 55), and a user defined high. You can also have others “follow” you and keep a watch on your sugars as well.
Yes, it is more money than the Freestyle Libre, but it is also a better product and it has bells and whistles that the Libre does not have.
And for the MiniMed Guardian system, yes their MARD (average difference between sensor values and lab values) is about the same with the Guardian Sensor 3 as the Libre and Dexcom. However with this system you have to check your sugars almost as many times as you do now. You can not bolus based off reading, and you have to calibrate it 3-4 times a day. And it REQUIRES extra tape.
If I were in your shoes again, I would call Dexcom (877) 339-2664 and look into their Dexcom G5 (2x daily calibrating and can bolus off reading) or the G6 (no calibration required).
Also the Freestyle Libre readings based off the Freestyle lite meters accuracy, which again IMHO suck (Mind you, I wear a OmniPod insulin pump and I REFUSE to use the build in Freestyle meter, for the accuracy SUCKS, I use Contour Next which is actually the best with the accuracy (68% +/-5%, 97% +/-10%, 100% +/-15% within the lab values… vs Freestyles 30% +/-5%, 76% +/-10%, 96% +/-15, 100% +/-20% of lab values).
I also TRIALED the Libre and at the same time I wore a Dexcom. The Dexcom was always within 20 points from my meter (G5), and the Freestyle Libre was 30-70 points off… more so if I was dropping quickly or going high quickly. Dexcom IMHO is just a better product.
No, I do not work for Dexcom.
Jose
I can definitely sympathize. Over the years I have a number of severe hypoglycemic episodes. I am mostly asymptomatic as well so it does get difficult. As most of the people have suggested the CGM route is the way to go. In the interim carry sugar pills and snacks with you everywhere. If you get upset over anything try to stop and think if it is legitimate or the sugar. If you’re not sure take a pill. I can provide you with a series of horror stories on things that have happened to me due to hypoglycemia.
Good luck!
Mike
My daughter is type 1 and much like you no one in the family anywhere down the line has it. She was diagnosed at 2.
The dexcom cgm has been a life saver. She was two and obviously couldn’t feel her lows either. We set the dexcom
To alarm her and us when she began to drop below 80 so we could give her glucose tabs before she dropped too low. We always catch it then before it become problematic. The dexcom G6 doesn’t even require finger sticks. Hope that info helps you and you consider the dexcom G6 for yourself
I second all the responses in support of getting a continuous glucose meter. The predictive algorithms will let you know when you’re falling sharply and you can set the device to alert you well in advance of a critical low to prevent hypoglycemia.
I thought I was reading my history. Diagnosed in '86 with no family history and then hospitalized again for hyperglycemia a half dozen years later because I was ignoring my condition. When I was actively trying to get my A1C to acceptable level would end up with night-time (and daytime) hypo and would fight any attempts to help me, to the point of wanting to strike those I love the most. Took a couple BAD car accidents (luckily I was only one involved) before I finally accepted a CGM. A PITA and can be expensive but well worth the commitment.
Please consider a CGM or at very least a Freestyle that you actively watch.
Also suggest visiting/joining the forum at https://tudiabetes.org/ a VERY helpful site with great user questions and suggestions.
Tony,
I’ve been a T1D since 1967 (now am 69). I’ve worn insulin pumps for 26 years and CGM devices (currently Dexcom G5) for over 8 years. Without my CGM I doubt I would be here today. BTW - I am the only one with history of diabetes in our family tree as well.
You description about your response with a low blood sugar is common and similar to what I have experienced over the years.
If you doctor is just telling you to carry glucose tabs and have a Glucagon kit handy it seems to me that she/he is not really involved with proper care of your T1D. Your Endocrinologist should be looking into MDI programs or (better still) insulin pumps and a CGM. If you are “of age” and on traditional Medicare the insulin pump and the Dexcom CGM is fully paid for along with the insulin.
Most insurance companies also provide reasonably good coverage for pumps and CGMs. Medicare does NOT cover the Medtronic CGM product so don’t even consider that if you are on Medicare.
T1D does not take care of itself. It requires a lot of attention by you, me and everyone afflicted. It also appears that your family needs to also get better educated so they can give you good support for T1D. That is very important.
I wish you well.
Tony - Sorry you are going through this. I used to act oddly (anger…“no nothing’s wrong. I’M FINE”) Then my Dr suggested a CGM. I see others here have as well. It is REALLY helpful!!
I concur on the CGM. I used the FreeStyle last year but my new insurance would not cover it but did the Dexcom so I switched. Although the FreeStyle is passive as many said, I liked it better. Mainly because the ergonomic user features of the receiver are far superior to the Dexcom receiver I use now. And now the sensors last 14 days to Dexcom’s 10.
You say you feel cranky etc when low, so if you feel cranky, you can immediately check. Seldom did even half hour pass that I did not check it.
It has also made my control better. Win/win.
PS - I am also a fellow a Marine with no other history of it in the family. One cousin did get it later on however. I got it while in the Marines in Japan in 1977.