Need help with severe lows

I’ve had T1D for 18 years & I was diagnosed when I was 7. I am on a CGM and a pump. I don’t know anyone that has T1D. I didn’t have anyone besides my endo to answer my questions about diabetes and even then it was mostly about managing my diabetes. I am so grateful that my doctor told me about this forum. Last year I was told that I have brittle diabetes. I get severe hypoglycemia that takes a good 45mins to get into the 80’s. I live in constant fear of not being able to get my sugar level up in time. This has taken a negative toll on me emotionally and mentally. I am even more scared of my diabetes now than I ever was. Any tips or advice on how to deal in a more healthy way?
Thank you

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Hello @Haali and welcome to TypeOneNation. Well first thing, now you know and have access to hundreds of people with T1.

Second., the term brittle is vague and I am surprised anyone, let alone an endocrinologist, would use it

So ok. You got the tools, how early does your CGM start to tell you your low? What, exactly are you doing for a low. I’ve had T1 over 40 years and I can recover my BS very quickly. It would help to know more about yours.

Hi @Haali and welcome to the forum. If you use the Dexcom or Medtronic CGM you can set alerts to let you know when you are falling (and rising) and how quickly. Through experience I’ve found that when I hit 120 I start to drop - it’s like flipping a switch. It’s not my basal rate - it’s just something about that number for me. If you use the Freestyle Libre you don’t get alerts and have to check your numbers frequently. So if you’re using that one and getting the lows check with your doctor about prescribing one of the other CGMS. I’ve been using Dexcom for a while and love it, and will be upgrading to the G6 with Control IQ which many (although admittedly not all) have found keeps them in a healthy range by making calculated adjustments.
To add to what @joe said about the term “brittle” - I don’t know that it’s used much anymore, especially with CGM technology in place, although that’s not to say it doesn’t exist. Thankfully with pump technology we can adjust our basal rates which should help keep you at your target. Don’t know how long you have been pumping, but keep in mind is not unusual to have different basal rates throughout the day, and they can be adjusted individually. If it were me I would discuss with my doctor. My endo’s office has access to my pump/CGM records and if I’m having issues sometimes I call the office and ask her to look at my records and give me some guidance over the phone rather than going to her office. Not all doctors are board certified and up to date with diabetes management, and if yours is not you should find one who is.
Sorry if I’m trying stuff you already know - I’m just sharing some thoughts that came to mind. Many people find that CGMs give them peace of mind they didn’t have before so long as they are used as a tool to help manage their choices.

@Haali Hello Hayat and welcome to the JDRF TypeOneNation Forum! This is a place where you can find many people dealing with diabetes who have found how to make the most of life while managing diabetes.

I can personally relate to much of what you are experiencing and have somehow been able to get along okay. When I was diagnosed in the 1950’s, the internet and lots of diabetes information was not readily available so I remained “diabetes ignorant” for at least an entire decade - then I found sources and began making a science of my diabetes; you have those tools at your fingertips. You also have physical tools such as you continuous monitor, a pump, and really effective insulin; these “things” only work well if you know what you are doing - nothing in effective diabetes management is plug-n-play.

I was diagnosed as “clinically brittle” in 1974 while living in a “Teaching Unit” at a famed diabetes research and treatment center - I was out-and-about while eating all my measured meals, getting insulin injections, and sleeping at the clinic. About 8 years ago, an endocrinologist who was professor of Endocrinology at the medical school [he is also T1D] “blessed” me with the brittle label after observing me closely for a dozen years, and recently, five years ago, the endocrinologist who currently advises me gave me her “brittle diabetes” diagnosis.

Right now, you can use your pump combined with your CGM to effectively work around how your body “rebels” with normal management by keeping a small notebook handy and make notes of activities, foods, and insulin - use these notes combined with readily available computer-assisted logs [device manufacturers tools and the Tidepool multi-device upload] to review patterns and somehow anticipate what might happen. I know well, the being brittle you MUST experience the unexplained, but careful monitoring of your CGM will give you a heads-up.

A suggestion which was given to me by two endocrinologists was to set my “low” goals a little higher so as to avoid severe hypoglycemic events. If your pump is a Tandem t-Slim x2, and your CGM is DexCom G6, I strongly suggest that you begin using the Control IQ algorithm; I really like seeing the “breaks” it puts on my basal-flow even when my glucose is at 140 if the G6 is anticipating a drop.

I agree with the previous posts. The answer depends on what CGM and pump you’re using. Also, changing your basal is key. Don’t be afraid to change your ratios on the fly, nobody knows your body as well as you do. And assuming you aren’t on the Medtronic 670G, keep your eyes peeled for the Omnipod Horizon closed loop system coming early next year, and the Tidepool Loop to be used with Dexcom and Omnipod. These will automate the delivery and help tremendously.

Hi @ Haali,

You got some great advice from the people who answered you and I agree with all of their suggestions. I was also diagnosed as a “brittle’ diabetic - with wildly swing BS all the time. Twenty years ago I went on the pump and 2 years ago on CGM. These have helped tremendously. I can add that what you need is more “flat lining” (I love to use that expression) and in today’s world: " flatten the curve”. .Much better to run a little high, if you can stay consistent, than go on that roller coaster of ups and downs. There is nothing worse than low BS’s - they can feel like panic attacks.

I am on a Medtronic pump with CGM. I choose to handle my insulin manually. (not the auto setting, which didn’t work well for m.) I can tell you the best thing ever that helped level out my BS - taking my meal bolus over time. When I was still on injections I would be high after a meal and then crash 2 hours later. After much practice, I can now figure out both the bolus needed and the time frame I should take it in. For example: For a dinner requiring 4 units total, it is not unusual for me to take 2 units about 15 minutes before I begin to eat, taking them over a half hour, then, after rechecking my actual carbs at the end of the meal - taking 1 unit fast and the other 1 unit over 45 minutes. This system varies with what I am eating - amounts of carbs/ proteins/ fats. It may sound complicated, but you get the hang of it quickly and I see much more level BS in my range doing it this way. Just a suggestion for you.

Terri

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Hi Teri @TJC, in a way this may sound complicated, but I know what you are saying. Great that this works well for you - I’ve used similar methods. This site does give each of us an opportunity to learn from others, and let’s take what personally works.

Just a few words of advice. Don’t rely completely on your doctor to tell you what to do every step of the way. Do your own research and learn how to use your tools and take care of yourself! Listen to what your body tells you - learn the signs your body gives you for lows and highs. I have been dealing with this for 60 years, and some of my “signals” were never heard of by my doctor. It’s your life - it’s up to you! PS It looks like the previouse posts have given you good advice - use it!

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I start by drinking soda or juice, then I’ll wait 10 mins and then I’ll drink more juice and take a spoon of honey and then I’ll wait and if it didn’t get to 80 I’ll take another spoon of honey. I stopped with the glucose tablets and gel because they take quiet a long time to work. I’ve had medics shocked that it’s took so long to work and even the ER doctor. I would love any tip to get it to rise quicker and without all the sugar

Thank you I’ll give my insulin the way you do

A doctor once told me that liquids work faster than solids, so I go for juice or (I know :tired_face:) soda. Over time I have found it takes longer for me to recover - I think even if my numbers start to trend up I may not feel in line with my numbers for a while.

as compared to honey, as well as fructose, and sucrose (in “soda”), glucose is the fastest. Blood sugar will only rise when you eat “sugar” or any carbohydrate as it converts to glucose… “Blood Glucose”.is what’s in your blood.

There is only 4 grams glucose in a typical “tab”. and it can take some doing to chew up. and they are unpleasant. I use glucose tabs, or fruit juice (fructose and sucrose, slower but more pleasant). a “can of soda” can have 60-90 grams carbohydrate (sucrose) in it… maybe that’s why it rises faster… that there’s a mountain of sugar in it? you would have to chew up 20 tabs I can’t imagine doing that for the equivalent of a can of soda.

if I had to guess… if your corrrections seem to be the way you describe… you might be too aggressive with your insulin.

in an semi-related note, I once used intravenous sterile glucose and my blood sugar instantly increased, it was a strange feeling. It was right before surgery and I had an IV in my arm. I gave the nurse my calculation and she gave the shot right into the IV line and boom. instant normal blood sugar… do not try that at home.

I know what you mean about glucose tablets - they taste good but I can’t stand the consistency. I stumbled upon Clif Bloks energy chews at a sporting good store and I really like them. 24 carbs in 3 chews, and personally I like the texture - the closest I can compare them to are gummy bears, but a little gooier and easier to get through.

When my sugars are low, it always takes 30-45 minutes for mine to start to rise after eating a teaspoon of honey or a glucose tablet. I have seen the advice to wait 15 minutes and if your blood sugar is still not up, eat more. And the advice is 15 grams of carbs. If I eat 15 grams of glucose, my blood sugar would rise by 75, which is way too much, and it would take 45+ minutes. So I use 4-10 grams of carbs and wait 45 minutes before deciding I need more treatment.

I also started using the Tandem Control IQ system in February and have not had more than a couple of really low sugars, and since the pump turns my basal rate to zero when my blood sugar is very low or on its way down, I now only need about 1/2-1 glucose tablet (2-4 grams of carbs) to get my sugar back up again. Low sugars disrupt my sleep and now I can go right back to sleep, so I get a lot more sleep.

Hi @Haali!

I can relate with you. I had t1 diabetes for about 19 years before I had a face to face conversation with another type 1. Since then I’ve met a few and this site was all I really had for a long time.

One of the best things I did was read Dr. Bernstein’s diabetes solution. It’s written by an Endo who is also a type 1. I found it comforting and inspiring. That said it can be a bit extreme.

My diabetes can be very hard to predict and control. The Dexcom G6 CGM has given me quite a bit of peace. I’ve been able to prevent an incredible amount of lows.

It got even better when I started the closed Loop artificial pancreases. I’ve heard great results from the Tandem control IQ as well.

For really bad lows I like to have Dex4 Fast Acting Glucose Liquid if a tab won’t do.

Stay well!

Hi @Haali, I’ve only skimmed the other responses, so please forgive me if I’m being repetitive. I don’t take as long to recover as you do, but my job keeps me active and can be dangerous, so I worry a lot about low blood sugars while at work. I’ve had to change the way I think about lows as a result. I don’t wait until it’s already below 70 to treat because I’ve learned that if it gets as low as 80, it’s probably going to go low for real in the near future. Really anything under 100 I start checking my Libre more often (my target blood sugar is 120). And in the 90’s I might eat some nuts or cheese to help keep it up. If it’s in the 80’s I have a snack (usually a packet of skittles or a larabar depending on how low it is when I check the first time and which way the arrow’s facing) and I keep checking (every 15-20 minutes) and snacking until it’s back in the 100’s. I keep glucose tablets, skittles, larabars, and almonds in my pocket all the time just for this purpose.

To start with if I had a doctor that told me I was brittle, I’d get a new doctor. Doctors who can’t so;ve the problems label them unsolvable. So I find with a severe low it can take 30 minutes to start coming out of it. Then your cgm wll take 15 minutes to show it. If when your treating your low it was heading even lower. Often I will intake more carbs then necessary then bolus when it starts to uptick. If its happening often maybe your carb ratio is to aggressive. What equipment are you using? Forty five minutes of feeling lousy is kinda par for the course for a severe low. I’d study carb counting and look for trends after a snack, large meal or from correcting a high.

Hello Hasli, welcome! Such great advice above, I’m sure many will find it useful for themselves. I have experienced more lows than I care to mention over the 44yrs of being a T1D. What I have found helps me, is snack size cartons of orange juice. They are easy & convenient. Once I’m back to a reasonable level, I do take something additionally as OJ gives me a quick repair but also doesn’t give the long lasting carbs my body needs. The cartons help because they don’t need to be measured or poured, just drunk. As they are long life, they don’t need to be kept in fridge. I travel domestically and internationally quite a lot and found that TSA are fine with me taking these cartons in my T1D travel pack supported with a Doctors letter. As a side note, depending on my lows, it’s not unusual to take 30-90mins to get to where I feel better. When extreme, can by several hours.
Best of luck.

I have found the sugar fix only lasts a little while. It does not kick in for 45 or so minutes, for me, then the Dexcom G6 screams again as it has not elevated my blood glucose fast enough to calm the device. For me a bit of “real food” helps maintain my blood glucose at a desired safer level. A small bowl of cereal with milk, or some cottage cheese, maybe just a handful of celery with a dab of peanut butter. Not a huge meal, about 14 to 18 carbohydrates on top of the 4 to 8 grams of rescue sugar often fixes my frequent lows.
If I just lay in bed and take more glucose tablets as the CGM screams for attention I will have eaten 8 or 10 tablets between 2 and 8 a.m. Come Noon my blood glucose level will finally be full of those sugar tablets and over 240 mg/ dL. So I promote having a bit of real food instead of relying on sugar as my rescue food.
Without an insulin pump I will refrain from commenting on what had worked about a decade ago when I last used a pump.

Karen, The right balance of recovering from a low (caused by excessive insulin, exercise, emotions) is a balance. Get enough insulin in quickly to avoid the dreaded coma and not over compensate and cause sugar levels to yo yo out of control. I am not a doctor but have been diabetic 34 years. I would research this further but for me I treat a low with candy. The tablets are pretty ineffective for me. I want to see the numbers come up fast. Not be worried I didn’t get enough sugar to stop the problem. So on top of sugar I also drink milk or peanut butter as they help hold onto the sugars you put in. During low spells my wife has mixed pure sugar in water and put cherry flavoring in it so I would drink it when combative. Being combative is a problem when someone is trying to help save your live. Offering them something that is yummy can help overcome the resisting. Obviously those techniques are during an emergency. I just started using a CGM and have had amazing results controlling my levels. But the one thing that I have noticed is that it is not as precise keeping track of the recovery as the normal blood stick meter will be. I would suggest if you get low to rely on your meter rather than your CGM until your levels are back to normal. Just some thoughts. I wish you the best,