I’ve never posted on this forum or any other forum for that matter but I’ve come to a point where I really need help and who better to ask then other fellow type ones.
I was diagnosed eight years ago at the age of 32 and at first I was pretty clueless to all the numbers I didn’t know what they meant I was just kind of following along everything my doctors told me to do and trying to figure things out and it wasn’t until about six months into my diagnosis that I had a very scary Hypoglycemic event.
I had been sick with a cold and had just woken up from an afternoon nap. I checked my blood sugar and it was 359 so I dosed according to what I should and got up and felt a little better. the kids needed stuff from the supermarket so we went and about 30 minutes later I started feeling very ill and it didn’t occur to me right away to check my blood sugar so I kept on going and then I was shaky and disoriented and it finally dawned on me to check my blood sugar. Sure enough it was 52 and I still had three units of insulin on board. I started drinking juice and taking my tablets and it felt like an eternity and the numbers just wouldn’t go up and my kids were little and they were afraid and I was afraid and it Was embarrassing to be going through this in a supermarket full of people. After a while my numbers went back up, they went way up but I was afraid to bolus to bring them down again. And I’ve been afraid ever since.
My A1 C at the lowest has been 9 and at the highest it’s been close to 11. I’m so tired of being afraid and worrying about the effects of always being high that it’s taking on my body but I can’t seem to break out of that panic mode. I’ve lost so much weight and it feels like the clothes just hang off of me but I can’t gain any weight. I don’t bolus what I should when I eat, I always do half of the bolus or even less than that and then I’m trying to correct afterword little by little and of course I’m always high. I can start to feel the effect the past eight years has had on my body and it scares me.
I feel like I’ve stopped living my life because I’m always afraid. I don’t exercise. I used to love going on bike rides and swimming and just being outdoors and all that is gone.
If anyone has been through a similar situation and was able to get out, I would love to hear how you did it.
I’ve never posted on this forum or any other forum for that matter but I’ve come to a point where I really need help and who better to ask then other fellow type ones.
Hi Maria @FMGSalazar and a Warm Welcome to TypeOneNation!
Yes, you have just now joined a community of people living with diabetes [PWD] and you will be offered lots of well meaning advice and suggestions, but what has worked for me may not be the “perfect” solution for you - and I’m not a medical doctor but I will offer you suggestions that have helped me in my 60+ years living with diabetes and I’ll also mention some “mistakes” that I’ve made. I missed out in the confusion of “all the numbers” because I was diagnosed in the days of one, maybe two, blood sugar tests a year thirty plus years before the advent of the first “home testing”.
- You are not alone, I’ve lived with constant “highs” and I’ve also experienced a couple of extreme lows that required someone to call EMS to awaken me - both of those times were because I overcorrected.
- Based on what I read between your lines, I’m assuming you are using an insulin pump and you are monitoring your body glucose with a meter rather than a Continuous Monitor.
- What do you consider “constantly high”? At this time in my life I feel more comfortable being a bit higher than what the book says - especially when I have responsibility caring for others or when I drive. Just try not to be excessively “high” - speak to your endo about this; two different endocrinologists advised me to raise my HbA1c. My “low” target range, approved by endo, is 100 mg/dl - in other words, I constantly try to not have any BG readings lower than 100.
- Correcting for “lows”: our natural instincts drive us to over correct which I’ve done thousands of times. A rule [unless your BG is extremely low] is to take only 15 grams of fast-acting carbohydrate, wait 15 minutes and recheck BG and if still below desired range 15 more grams of fast-acting carb. Yep, it takes a bit of discipline.
- You are very wise in checking active insulin [IOB] before taking a bolus but I’d also advise that before correcting, you carefully wash your hands and recheck BG - got this last bit of advice from our daughter who was Charge Medic who would be called to revive a low Bg only to be told by a care assistant “… well his sugar was over 300 so we gave a dose of insulin”.
Write or message me with any questions - there are many people here with plenty of “diabetes knowledge” ready to listen.
Hi, Maria @FMGSalazar,
Like Dennis @Dennis, I’ve been dealing with T1 for 60+ years. I can understand your several concerns.
To speed your education and adjustment to life with T1, I would encourage you to reach out to the closest chapter of the JDF or ADA. Find opportunities to meet face-to-face with other people who have T1 diabetes. Ask questions. Seek out education (visit with a diabetes educator, attend JDF or ADA meetings where discussion sessions are offered).
If you can find a T1 diabetes summer camp for adults (a weekend session?) sign up and attend the camp. Do everything you can to learn how to manage this rascal of a medical disorder!
On another topic, the limited timeline in your post seems to imply that your diagnosis with T1 and the birth of your first child occurred pretty close together. Is that right? If it is, you found yourself taking on two demanding “learning curves” at the same time. Wow! That’s a lot to have to deal with. No wonder you seem to feel pretty overwhelmed. It is not too hard to get help learning to be a parent, but it is a tremendous energy drain. Getting help learning to manage diabetes is even harder; I would encourage you to follow my suggestions, above, and those that Dennis offered.
Now, here’s another suggestion. Try to “compartmentalize” the change in life you’ve experienced being a parent, and the change in life you attribute to having T1D. I know the two kind of “blend together,” but if you can separate which is causing what, then you can problem-solve a little better. Does that make sense?
A fourth thing, as Dennis said the rule for treating hypoglycemia is “ingest 15 grams of glucose and wait 15 minutes.” I carry one or two glucose gel packets with me all the time. (You can find them at many supermarkets and pharmacies.) They have 15 grams of glucose in them. So, if you are concerned that your blood glucose is going low, “Turn off your pump, tear the top off the packet, suck down the contents, and sit down for a while.” It is really that simple, although, as Dennis said, when in the throes of hypoglycemia we want to eat and drink everything we see.
You have to treat hypoglycemic episodes very methodically. First, turn off your pump. Second, consume your 15 grams of glucose. And, third, wait 15 minutes. If you ingest too much glucose too fast you soon end up on a blood glucose roller-coaster that will make you feel miserable for several hours-to-a couple of days. Avoid the roller-coaster! “Turn off your pump, 15 grams of glucose, and wait 15 minutes.” If your blood glucose is not what you want after 15 minutes, leave your pump off and do the 15 grams/15 minutes again. Repeat as needed. Then once your blood glucose is back where you want it, turn your pump back on.
Maybe this will help you start getting things turned around. And reach out to JDF/ADA groups - it may accelerate your learning.
Maria, first and foremost, you must get yourself a continuous glucose monitor. A CGM will alert you BEFORE you go low so that you can take juice in advance and not get caught off guard. Most of all it will give you some PEACE OF MIND.
Technology is developed so that we should use it. We don’t travel anymore with horse and buggy, we don’t take international trips by boat, and type 1 diabetics shouldn’t be limited to knowing their sugars only by finger prick.
Yes, it’s expensive. You may or may not have insurance, but this is the single best investment you can make.
I used to feel exactly the way you do. I used to worry about highs and lows and worried it will never stop. I worried for my children. Then I woke up one day and asked myself what the hell I am worrying for. Worrying doesn’t do anyone any good. I spoke to a diabetes educator (after years and years of being diabetic I might add) and spent a few weeks working out my insulin to carb ratios and sensitivity. Best of all, I got a CGM. I have never felt so good since I was diagnosed 14 years ago. Being in control of your sugars instead of your sugar being in control of you is like being freed from prison. Most of all, it’s not nearly as hard as I thought it was.
Maria, you are 40. You are young and have many more happy and healthy years to your life. Don’t let this hold you back. You can do this.
@FMGSalazar Hi Maria, to echo what others have said and to add that gong back to a CDE is a really good way to start - I also want to add that fear of hypoglycemia is very common.
with a lot of time at high blood sugar, you will like feel like you are going to die when you hit 80 mg/dl. that’s common too as your body “gets used” to whatever your average is. Lower blood sugar, or even dropping blood sugar can give you the same feelings as a panic attack, not fun and reinforces your fears.
good luck to you and I hope you can get some help.
I am also a T1 diabetic, just hit my 19 year diaversary! I would agree that one of the most annoying things is correcting for a high just to drop low then correcting the low and going high. Frustrating!
I’m not a medical professional and this is only how I handle it.
Check with your medical staff about your correction factor. Double check with them that it is at the correct ratio. They may be able to do some adjustments.
My ratio is fine, although for some reason if I happen to hit 300 and give a full bolus, I will always go low. To help with this, I may only give enough insulin to hit 170-200 instead of my normal goal of 100. I generally recheck my BG every hour for 3 or so hours just to make sure it’s going down (when not wearing my CGM, otherwise I just watch my graph). If after 4 hours, my BG is still a bit high, I give another bolus. I emphasize the after 4 hours part. It seems like a long time when your BG is high, but giving a second bolus within that 4 hour range can cause some really bad lows.
I’ve definitely had the fear of lows throughout the years; it almost becomes subconscious. I’ve generally tackled it by shooting for a goal of 170 for a while then 150 then 120 and over time getting more comfortable progressing lower. I think someone else mentioned this and I agree. If you are running an average of 250, a change to 170 is still going to show good improvement on your A1c. It’s not perfect, but it’s an attainable goal.
Work with your diabetes team. Be honest and transparent with them. I think sometimes we fear not having a good report at the doctor’s office and that keeps us from having an honest conversation. They deal with this all the time and they are not going to be shocked or angry or treat you badly. They genuinely want to help you. (If you don’t trust your dr office, find a different one.)
These are just my opinions and not documented medical advice, for the record.
Hi. I also agree with suggestion of using a CGM (Continuous Glucose Monitor) like Dexcom. It changed my life - not just having visibility of your sugar levels, but knowing if they are going up or down so you can make better and earlier adjustments. Other benefit is that Dexcom G5 has bluetooth connection to app on phone - so you can see you blood sugars on you cellphone. Your doctor should be able to connect you with a Dexcom rep who can give you a demo of the system. It seems overwhelming at first, but honestly one of the best changes I’ve made since I got T1D!
I hate to be blunt, but I don’t know how else to say it: Change your diet! The less digestible carbs you eat, the less insulin you need and the less hypos you’ll have. Read Dr. Bernstein’s Diabetes Solution. Seek out a functional medicine doctor and/or nutritionist who will support your transition to a low carb diet and less insulin.
@kbricken1, Hmmm… I guess I can’t agree with what you have posted, at all. Maria didn’t detail what her diet is like. We have no idea if she is eating complex carbs, not-so-complex carbs, or any at all. We also don’t know how much insulin she is taking. Her complaints are - fear of hypoglycemia, fear of bolusing, and loss of weight. She said:
The day she experienced her frightening hypoglycemic episode she was ill. (Now that can cause your blood glucose to do all kinds of things.)
There is a lot we don’t know about Maria’s circumstances. The more I think about it, the more I think it’s time for her to meet with her physician and say, “Help!”
I’ve had the same … the hypos still come but having a Dexcom cgm helped me know when my body switched its insulin needs (especially when you’re sick or stressed or under different meds). The other thing is to keep glucose tabs on hand (yeah I know - yuck / but they work!).
Keeping sugars level has been a 27 year journey for me - I found this book - Bright Spots and Landmines (https://brightspotsandlandmines.org), and oh my goodness!!! I finally can keep my sugars in range, AND I know exactly what will cause me to go high. Best part about staying in range is my lows have decreased. I used to avoid going for my daily walk or I would up my carbs so as to avoid a low while exercising. Now if I’m in range, I stay in range - and I carry the glucose tablets just in case.
I agree with the CGM. It has saved me so much worry. I my self do not have td1. My son does and he almost died. His sugar was 2186 when he was admitted to the hospital. The CGM helped me keep him on an even slop. But one of the most important thing is to stop worrying about every little high or low. The worry itself will cause more of the same. Find a diabetic educator. They can help with most of these issues. Your doctor should be able to help. They may have one on staff.
Hi Maria, I’ve been a type 1 for 64 years and today is my 73 birthday and I agree pretty much with the info you have received, I do mine a little differently or maybe not. Instead of taking a full dose and for me that is different than most, My insulin doesn’t always work like it should but anyway I take a partial amount and test again in 1 hour(for me it takes that long) if I need to take more I will if not, that’s OK. When you can automatically associate the way you feel with your numbers things will get easier… I always run higher for safety reasons not extremely high just high enough you will learn in time, but please don’t panic, always keep something with you. I keep my BS around 170 most of the time. Know and I know this part is hard because you feel so rotten, but realize once you have taken something to raise your BS just be patient you’ll feel better, know that to be true, and don’t panic. A Dexcom CGM is an absolute life saver, it’s easy and you can sleep without worrying, that was my biggest drop time. We are all here to help you in any way we can. There are plenty of people in the supermarket with the same problem. Supposedly there are 29.1 million Diabetics in the USA you are not alone and there have been times when this happened to me and people have offered to help, very kind strangers. We’re all here to help, just ask. Things get easier. Please don’t make your self sick worrying. Bye jan
You are NOT alone. Hypoglycemic episodes when you’re with your kids is very scary.
I’m in agreement with the CGM idea! I’ve used a Dexcom for over a year. My last A1C was 6.2!
It is a great device because you can see how your glucose level is trending. Not only that, it has sharing capabilities. If you are having a severe low, it will alarm on someone else’s phone.
My husband drives a semi truck and is gone in the night, so my neighbor is set up with my Dexcom share capabilities. I will text her if it wakes me up and let her know I’m okay. If I don’t text, she calls me and if I don’t answer she is to come over. It’s our emergency plan. She’s had to call me a couple times, but never had to come over.
The CGM will give you more peace of mind. They are a wonderful company! If you send them a request for information they will answer any questions and get you set up with the best payment plan for your insurance coverage.
Good luck! Get that A1C down! I know you’re afraid of lows, but the highs are also a health risk and your children need their mama!️
I’ve been the queen of over correction, so I understand how you feel. If it’s an option for you, look into getting a Continuous Glucose Monitor, or CGM. It puts me much more at ease when I’m home alone, driving, etc. It can be set to alert you when you go above or below numbers you set, as well as if you are dropping or rising quickly. I love mine.
I have been a diabetic for 48 years. I know exactly what you are going through. I start on the Medtronic Insulin pump and CGM(continuous glucose moniter) and that changed my life!
I too had 3 young children and went through similars situations.
The last 15 years the pump has saved my life from many hypoglycemic reactions!
The recommendation by another experienced to turn off your pump is excellent. I have had diabetes 49 years, and I used insulin before there were glucose meters. One time when pregnant, I passed out at the wheel of the car and was taken to the emergency department. They hung a glucose grip on my arm and then made me drink a glass of orange juice. I did wake up. But results of blood glucose tests in those days took 4 hours, so before they would release me from the hospital, they made me drink another glass of orange juice. The result of my blood test was then close to 400. Needless to say, this was not the desired result.
The recommendation to consume 15 grams of glucose and wait 15 minutes does not work for me. 15 grams of glucose would raise my blood sugar by 75. But, it would take at least an hour to go up that much. Using glucose tablets, after 15 minutes, my blood sugar would only have gone up about 10 mg/dl. So if my sugar was 40, it would only be at 50 after 15 minutes. If I were to then consume another 15 grams of glucose, eventually my sugar would be up a total of 150. 40 + 150 is 190, which is high. And it would take at least an hour to get there. You really need to be patient when treating low sugars, and just not drive anywhere. Maybe stop in the middle of that supermarket and play with your phone for awhile. No one would find that suspicious.
Good luck with your progress. You are a lot more knowledgeable now than when you were first diagnosed. Give better control a try. My first experience with insulin (in 1970) caused my sugar to go low and I started crying. I went to the emergency room, and the doctor lowered my recommended dose. You may need to start with one dose, see what happens, and then very gradually increase it until your sugars are in the 100-200 range. Just a warning, to someone who normally runs 200-300, a blood sugar of 100 feels like severe hypoglycemia. So take it down gradually.
It is a constant battle to have normal sugars …don’t wuss out and say you’re scared… guess what.???. THE ONLY PERSON THAT FIGHTS THIS CONDITION IS YOU…no one else… I’ve been type one for 25 years… been though anything and everything . Flipped a boat over… car wrecks … been found off road passed out… … It is what it is… try to closely control your sugar. The long term problems with uncontrolled high sugars is horrible… I’m not “the perfect” diabetic. You won’t be either… continue to do everything you used to do … suck it up and plan every event you want to do., hasn’t stopped me… it’s your choice …
Like I said “It is what it is”… you are in control of yourself… You be the man… you control this condition… don’t let it cotrol you., get mad…
Sorry Maria… “be the woman” you CAN do this
Thanks everyone for your kind words, the support and the advice. After I posted this and started getting the replies back, something in me lifted and I realized I’m not alone. I have felt so alone these past 8 years but just these few responses made me feel so much better. I decided that day to trust my CGM and start using my insulin pump the way it was intended. Before I would only bolus after I finished my meal and would only do it for 1 or 2 units Max bc I was afraid. Now I’ve been bolusing before my meals, keeping my carbs low so I don’t have to give big boluses. I have to say my numbers have improved so much! I have a long way to go but I’m more optimistic. My husband even came with me to my last endo appointment and he’s reading Diatribe with me! Thanks again everyone. I’ll post my A1C in 4 weeks; I hope to see a big difference!