Hello, I was just diagnosed with T1D a few months ago (I'm 36) after having "gestational diabetes" during my second pregnancy. I had follow-up A1c testing and at first they thought I had T2 so told me to lose weight (I lost 20lbs and am now normal weight), exercise more (I was already running 5 days a week and doing pilates 3 days) and eat fewer carbs (I was already limiting meals to 2-3 servings). This resulted in my A1c going from 6.2 to 6.8. Luckily my son was in a screening research study for T1D and has the genetic marker for it, so I told the endocrinologist to test for GAD antibodies. Turns out it was T1D afterall. At least it makes more sense now. I think I have adjusted to the diagnosis pretty well (I'm a psychologist afterall!), but the logistics of 4 injections a day and not being allowed to eat between meals has been hard. i have two young boys (ages 1 & 3), work full time and have a busy social life. I am currently trying to figure out how much insulin I need without going too low (lowest so far was a 47...) and trying not to test a million times a day to figure it all out. I would love to hear from other parents with T1D or other people who were diagnosed as adults and what worked for them. Any advice would be appreciated! And ladies...any leads on cool looking purses/bags for the diabetes supplies?
I was dx'd at age 39. It took about 6 months of injections before I switched to the pump. It's SO much easier - especially since I'm not big on schedules. I'm a project manager, so I deal with schedules all day - I don't want to deal with it in my personal life too! I still test quite a bit, since I am quite active, but it allows for better control.
My daughter has T1 also (dx'd at 9 months), but so far my son hasn't shown any signs. I do get a little jittery when I see him gulping down water, but then I live in Houston which is just about the hottest place on earth right now.
Hi! I haven't actually heard from a lot of people who've been diagnosed with type 1 after age 25. And you really sound busy! I was diagnosed at 8 but thought id comment as far as the cute bags! I usually just throw my insulin in my with my tester and they fit in most normal sized purses. When I'm really busy and running around at farms or just work and away from my purse or desk, I know it's not all that attractive, but I use a " fanny pack" turned sideways to make it look more like a tool belt ( because I really don't want it to look like a fanny Pack) but if I don't have time to go back and forth from my car or desk, it really helps remind me that I still need to test.
Like Dani said, pump would be great. They allow great flexibility. With a pump is you can easily have a snack or skip meals without any problems. I've used a pump over 10 years now and rarely have lows.
Even with shots you can have some eating flexiblity. Did your doctor give you a carbohydrate factor so you can adjust your insulin?
I use a OneTouch Ultra Mini glucose meter because they're small, accurate, and come in cute colors. A lot of women use cosmetic bags (like the ones you get from department store make up counters) to keep all their diabetes stuff together.
I was diagnosed last April at the age of 43. Before being diagnosed I started to feel very low in energy and I had a job where I was on my feet all day and I was fired because I couldn't keep up with the pace. Soon after that things got really bad, then finally I was diagnosed with type 1 diabetes. It was a new thing for me to have no energy because like you I had been very active my whole life. I've always been an avid runner, road cyclist and mountain biker.
I feel your pain with the not eating between meals. I was always hungry even right after a big meal when I was first diagnosed because of cutting out carbs until I knew which type of diabetes I had. I've always been such a big eater because of my activity level. I was so happy to finally go on an insulin pump because now I can eat whenever I want and eat what I want but of course I pick what I eat very carefully. Before I knew I had diabetes I dropped from 175 lbs to 150 lbs and I was eating like crazy, then I even lost more weight until I figured out how much insulin I should take. At my lightest I was 140 lbs and I'm 6 feet tall and when I looked into the mirror, I did not even recognize myself. I kind of thought I was not going to make it at times but now my weight is up to 170 and I workout all the time and feel GREAT!!!!
So anyway, work very close with your doctor and nutritionist on what foods make your blood sugars spike and what helps you control your levels. Also work very hard on finding what your carb to insulin ratio is then you can start eating snacks again. Once you figure this stuff out I'd highly recommend an insulin pump.
I was also recently diagnosed (last November) at age 27...shocked!! I did shots for 3 months before going on the pump and it is much easier. I changed my diet pretty drastically too. I follow a paleo (most of the time! there are occasional cheats) diet which is all-natural and low-carb. I can definitely give you more information if you're interested! I wrote down for several months how many carbs I ate at each meal, how much insulin and how it effected me which a nutritionist would definitely help you with. I also recommend finding an endocrinologist that you love! Mine is phenomenal and tweaks everything to help me keep my a1c in normal ranges. I am currently 5 months pregnant and he has me email him weekly to make changes so find someone you trust and who will put in the effort! You sound like you are mentally in a better place than I was when I first was diagnosed....so keep up the positive attitude!!
Thanks everyone! It is nice to hear from other people in the same boat. I am trying to figure out the right insulin to carb ratio right now, but it seems to vary depending on the time of day even if I eat pretty similar foods. I am having a fair amount of lows (60s-low 70s, even one 47!) but I always have symptoms and they are getting a bit more predictable. I have been having a morning snack about an hour or so after breakfast (without insulin) and that seems to help prevent an 11:00AM low. I am slowly figuring it out but there are so many variables! I have no idea how much running impacts my glucose - sometimes it is higher after I run and sometimes a lot lower. Anyway, I think a pump is where I will end up but it will probably take a few months. I think one of the problems is that since I was diagnosed before having any symptoms, I still have a lot of beta cell function left so I have too much insulin sometimes. Who knows.
Thanks for the bag suggestions - I am actually considering a fanny pack for running! Do people take their meter with them when they run? I have just tried to have candy with me if I go for a long run and go off symptoms, but that probably isn't smart...
One more question - how have people's spouse/sig other reacted to this news? My husband acts like its no big deal most of the time, but is super freaked out about possibly having to use glucagon and wants me to have it with me all the time. What do you typically do? I can't imaging taking it with me everywhere - it is pretty big (along with all the other crap I have to take with me these days). I keep it in the diaper bag since I have that with me a lot on weekends and I work at a hospital so I figure I don't need it there. I really don't know how careful I need to be. Do you have a fair amount of warning from initial hypo symptoms to actually losing consciousness? When I had the 47 I just felt a bit more jittery and sweaty and a little confused, but it was pretty similar to hor I feel when I'm in the low 60s.
Thanks again for all the great advice! Everything I've heard from people with T1D is that it isn't as bad once you get used to the change in routine and you can be really healthy if you work at it. So good to hear :)
I echo what most people have said already. The pump is probably the way to go. You will have more flexibility with your life. You should even consider a continuous glucose monitoring device as well, since you are athletic. It doesn't replace a glucose monitor but it definitely helps with trending blood sugars and lows and can help your doctor pin point what times of day you peak or drop. Could really help you with your running as well.
A fanny pack for running sounds great because you can throw in glucose, your meter, insulin, a snack. If I was you, I would carry my meter with me while running and not go off how I felt. When I exercise my meter is within hands reach along with treatment for lows. You should probably ask your doctor or CDE what others do in those kind of scenarios.
Your husband is right you should carry a glucagon but, then if you did happen to pass out the people that found you would have to know how to use it. If you test enough during the day you should be able to catch a low pretty quickly. But, there are times that they come very fast. Luckly I have never experienced a low where I needed medical treatment but, my husband does know how to use a glucagon and he knows to call 911.
Low symptoms for me have changed over the years. Anything from the shakes/sweats to a sharp pain on the right side of my head and spots in my eyes. As time passes you will know your signals, and if you don't feel them anymore you will be experiencing Hypo Unawareness which is when you should be concerned because you don't feel your lows anymore. I think most people who hypo unaware have had diabetes for a long period of time. The way to treat it is with more checking of blood sugar during the day. Ask your doc about it for a more defined definition and what you should do if you encounter it.
Tell your husband not to stress; it's unlikely he'll ever need to give you glucagon. A better option would be for him to try to get juice in your mouth or squeeze glucose gel or cake frosting between your cheek & gum, then call 911. I've had diabetes 35 years. The only time I've ever had glucagon is when a paramedic administered it.
Don't fear lows. If you keep your blood sugars fairly well managed and don't have frequent severe highs and lows (above 350 or below 50) it's unlikely that you'll ever go unconscious from one.
Hypoglycemia unawareness takes decades of highs and lows to occur, it's not an overnight thing. I got it after having D about 20 years, but once I started using a pump and my blood sugars were more normal, the hypo unawareness reversed and I can sense lows again.
People have different symptoms with lows and they may change over time. If you have frequent, bad lows you can feel totally functional with blood sugars of 13 or 19 (I have). But there's a point where your body stops working.
A good rule is to always test before you drive a car and to test anytime you feel off. If you are low, you must stop parenting and treat it (just like in an airplane crash you're supposed to put your oxygen on first, then help your child). I also have an agreement with my husband that I test whenever he asks. He and my mom can often detect I'm low before I can.
Your overnight lows are probably caused by your long acting insulin. You can make sure your blood sugar is 150 when you go to bed and/or eat a snack with protein before bed. If you have an overnight low, wake up the next night around 2am to test blood and see if it's a pattern. If so, get advice from your doctor on adjusting your insulin.
Personally I love having my nerdy fannypack, keeps me from having o do extra running around or worry f I feel funny andmy tester is too far. As for feeling lows as I've found it changes each year, some symptoms grow stronger and others weaker. I would really Suggest Gary scheiners book "think like a pancreas." It's great for type one and insulin users. He covers those on the pump off the pump and all the types of insulin. He also covers what type of doctors you should have and the less known causes of lows and highs. Like changing weather, time zone changes, new surroundings and straight Alohol can all make you go low! Even better he's also a type one diabetic!
I have just recently been diagnosed with T1D- 34 years old, active, etc... Anyway- I found a great company that makes awesome diabetic bags... Stick me Designs. They are on Facebook too! Really cute stuff.