I was diagnosed last year at 54. Endrocrinologist acted like it’s pretty common. Everyone else, including my general practioner said I’m the first one they’ve seen getting this at my age. I’m having a hard time keeping my sugars leveled and am taking 4 shots a day. I feel so much better when my levels are high, then I take my shot and they bounce low (I’ve had it as low as 30, and probably less) and I feel awful. Then have to pop my glucouse tablets. I have never been recommended to any support group, dietician or anyone by my endro doctor. Only thing he does is lecture me on how my A1C level is not good and all the bad things that can happen if I don’t get it down. Again, I’d rather feel the way I do when it’s high, than when it’s low. At least I can put a sentence together, not feel like I’m going to pass out and can think straight. To be honest, I’m getting tired of the whole thing and almost feel like giving up. It’s affecting me, not only physically but emotionally. All I see out there on the TV are commercials for Type 2 (I’ve never seen so many commercials), but NOTHING about Type 1, especially starting in adults. It’s a lonely, helpless feeling. I have no idea how I got it. I’m not fat. Have always been active.
welcome to the club no one wants to be in! +) I feel really bad for your diagnosis and the horrible support you’ve been getting. I’ve had T1 a really long time now.
so you can get t1 at 100 years old, but it is more common to be young when you get diagnosed, that’s why they used to call it juvenile diabetes. you didn’t do anything wrong, your autoimmune system decided that your own insulin producing cells were an infection, so they ate them. and so now you can’t make insulin.
at first you’ll feel better and see better when you are high, but it’s because you’ll feel good at what you are used to. slowly reducing your blood sugar to normal levels will make you feel good at 100, and sick at 250. the trick is small changes, and the law of small numbers. swings are brutal as you have seen, hypos are awful, but for me at least highs are awful too. it might seem like throwing a quarter at a shot glass from a moving car right now, but you will be able to do it and you will start to feel better.
it’s pretty common to go through denial, anger, and depression when you get diagnosed, we’ve all been there and we’ve all had to figure out a way to grieve our loss of health and move on.
pardon my saying so, but I think you really need to try to get a good CDE (certified diabetes educator) to work with and help you. the can come up with insulin and meals that work for you, given your daily life and your normal activity, they can help a lot and I urge you to try to find one.
please let us know how you are doing, please come here and scream if you want to but keep up the contact because this site can be really great support.
I was just diagnosed with T1D at 44 years old last year (14 April 2014), so I am in my 15th month post-diagnosis. It is NOT common for people our age to be diagnosed with T1D. T1D is a small % of all diabetics, and those of us diagnosed later in life (read up on LADA, sometimes called Type 1.5) are an even smaller % of T1Ds. Like you, I was very active and ate well (longtime Lifetime Weight Watchers member). Unfortunately, no behavior or action on our part could have helped or forewarned us…T1D is an autoimmune disorder…our pancreases are simply broken.
It sucks. I wish I could say it’s easier for me almost 15 months down the road. Some aspects are easier, some are not. We are still trying to establish a regime and treatment plan that works for me. Each T1D is unique.
I agree with Joe. A good CDE is ESSENTIAL. I went 5 months before my primary doc referred me to one, but the Diabetes Education Program through my health network was awesome. I already knew what the others were just learning (how to read nutrition labels, count carbs, portion control, exercise, etc.)…but still the support system was invaluable.
The most difficult thing for me is all the weight I have gained since going on rapid-acting insulin this past March. But I have no choice, and I already eat very lean. So I have to tackle the weight gain with more exercise, and start with a personal trainer next week.
My A1C was 15.8% (!!!) when diagnosed 14 April 2014. It’s just a bit over 9% as of last month’s blookwork. It’s a challenge, but you WILL feel better when your blood sugar gets regulated.
Hang in there!
Colleen in California
I was diagnosed at age 47 and am now 57! Like you, I was shocked to receive this new dx of Type 1 at my age! However, you need to allow yourself to get over the shock and transition to understanding Type 1. I agree with Joe and Colleen to connect with the right diabetes health care team who will help you through this journey. They have excellent nurses, educators and nutrtionists who are diabetes specialists in addition to a supportive and knowledgable endocrinologist. I remember seeing a great commercial by Patty La Belle and she said " I may have Diabetes but it doesn’t have me!!
Remember that…and know you are in control. Explore using a pump which changed my life and helped me get from a A1C of 13 to 7.3! However, you need to explore your choices available for managing ypur diabetes and find the right approach, Knowledge is powerful and understanding your options and tools to help you manage your diabetes is the key.
Never ever feel alone…
Reachbout to JDRf anytime as well as the American Diabetes websites and search the internet for directories of diabetic organization!s near you!
Change your health care team if you are not getting the support of a diabetes health care team !
Good Luck…you can do this!!
Greetings Cathy T
In real simple terms. Get a new endo. Support and direction is everything. Nearly 50 years with type 1, and I still look for support.
Type 1 can be diagnosed at any age from infancy to old age folks.
I am glad I never gave up. I was diagnosed in 1945, when I was 6. Now I have been type 1 for 70 years, without any serious complications. It has been a very good life because I took good care of myself. I hope you will too!
CathyT, I can so relate. I’m a 56 year old woman, diagnosed with T1D at age 53. And while it’s not common to have T1D, I believe it IS increasingly common to be diagnosed as an adult. I read somewhere recently that today, most diagnoses of T1D are in ages 21 and up. (Please someone correct me if I’m wrong.)
I will echo what everyone else has said: please find a good CDE. Mine is/was a lifesaver.
I was also like you for quite a while: I only felt normal at 200 or so. That’s because you’re used to your blood sugar being so high. As has been said, small tweaks to your basal and bolus insulins help: eventually you will feel fine at 100 or so. And, yes, lows suck. I’ve been as low as 29, probably lower. Again, tweaking your numbers slowly should help you get to where you want to be. Three other things I can recommend: the books “Think Like a Pancreas” by Gary Scheiner (invaluable in helping set basal rates and navigating the use of insulin while avoiding lows) and “Using Insulin” by John Walsh (ditto); and getting a CGM. I’m on MDI, but my Dexcom has been so helpful. I won’t be without it now, and would pay for it out of pocket if I had to. For me it’s a must-have.
Hang in there. And check out some other helpful sites on the web: TuDiabetes.org and Children with Diabetes.org, for starters (both full of terrific advice for T1s). You’re not alone! T1 can be incredibly isolating and weird to live with, I agree. The Diabetes Online Commmunity (DOC) got me through, and a great CDE, and those books. All my best!
I want to THANK ALL OF YOU for responding to my post. I truly appreciate it! It really makes me feel less “alone.” I will keep reading all your posts over and over again, and go with all your suggestions. At least I’m getting suggestions, as I’ve been on my own with this over the past year. I know getting this under control has been stressful for me since I was diagnosed. My dad passed away a month after I was diagnosed and I’m the executor. Lots of work had to be done with his estate. I’m also on my son’s high school football booster committee and had to get a 68 page football program together, then I got plantar fasciitis and a heel spur on the same foot getting my dad’s house in order to sell it - a lot on my plate. Plus a full time job. And to deal with the diabetes on top of it … sigh. Hate to say it, but my thoughts were “please don’t let me die until I get all this done.” I guess it’s time to take care of me now. I’m just not used to such a strict regimen of what to eat, when to eat it, checking my blood all the time, etc. But, it’s something I have to do. Again, thanks for all of your replies - what a great group!
I’m so sorry about your diagnosis. I think you’ve gotten a lot of great advice so far, but I wanted to touch on your “strict regimen” comment above by saying that it will get easier. The more careful you are in the beginning, the better your control and the easier it will be later on. But once you have the hang of things, you’ll be able to ease up a little bit. When I was first diagnosed (over 20 years ago) I was checking my blood sugar 8 times a day and taking insulin 6 times a day. After a few weeks we dropped down to 4 and 3 respectively. I was also on a very strict diet. 30 g of carbs for breakfast, another 30 at 10 am, 60 at lunch, 30 at 2 pm, 60 at dinner, then 30 at 8 pm. And I couldn’t deviate from that diet at all. But now that I know how to manage my blood sugars and long-acting insulins (like lantis and levemir) exist I can pretty much eat what I want when I want. It’s all about cost & benefit. Is that cookie worth the 2-4 units of insulin I would need to eat it? Is the candy at the movie theater worth taking an extra insulin injection today? If I eat this apple without taking insulin, what’s the likelihood that my blood sugar will be high later? It won’t ever be like before your diagnosis, but you’ll learn how to figure these things out. And a good (emphasis on “good”) endo, a CDE, everyone on this website… we can help you learn.
I want to add my name to the "you are not alone"group. You have already gotten good advice here. I was diagnosed in 1998 a couple months after my 50th birthday. I was not overweight and was fairly active. No family history. It’s not easy but you learn to do what you have to do. A good CDE is really important. I used to have one but we moved and now I don’t. Sure wish I did.
I was diagnosed as T1D just shy of my 50th birthday. Most guys get a sports car for their midlife crises but I digress. My GP caught high glucose numbers at a routine visit and had my blood work done again. Still high numbers and she said that it was type 2 and was going to prescribe some pills. She is a great doctor but I didn’t feel that this was happening to me, I did not fit any of the profile for a type 2 except for higher glucose levels, and at that point they weren’t that high. She agreed and said that I should see and endocrinologist. When I did get in to see him I was dropping weight like mad, being a temporary storage vessel for gallons of water a day, and generally feeling lousy. He took a quick look at the blood work and my general condition and said definitely T1D. In the 3 years since, I have finally gotten control over my condition and realize that a lot of it is mental conditioning. I am also glad that I found out it was T1D and not mis-diagnosed type 2 because I think that a lot of older people got that diagnosis in the past and struggled. I look at being diagnosed correctly as a good thing. It got me watching my health more carefully and got me eating better. No more Poptarts for breakfast/lunch. Good luck and live life.
Hi Cathy and everyone else,
I was diagnosed 7 years ago at age 56. I was feeling really horrible, went to the emergency room, and the ER doctor said I was his most interesting case of the day. Like you, I had a really hard time at first, feeling as if I was the only adult onset Type 1 in the universe. Some things that helped me: finding an endocrinologist who listened to me! My first couple of doctors were worse than useless. I ended up going to see Dr. Bernstein (the famous low-carb guy), and though his treatment protocol is pretty extreme, I learned a lot from him about how to manage my diabetes. It also really helped that he has Type 1. I think most endos, no matter how much they know and empathize, don’t have any idea what it is like to live with this disease. So they tend to make suggestions like “keep your blood sugars stable” - not knowing just how difficult that is.
Another life-changer: getting an insulin pump. I was on injections for my first 3 years, and finally got an Omnipod, along with a CGM. The Omnipod makes me feel almost like a normal person. I can’t recommend it highly enough. The CGM is also helpful in showing your blood sugar trends, so you can often tell when you are heading high or low, and treat before you have symptoms. Not perfect, but better than finding out you are at 30 without any warning.
Best of luck. It WILL get easier!
Hi Cathy. As I understand it most (90%) of diabetics are T2 which is why the commercials and other information is aimed in that direction. And although most T1’s are diagnosed younger, some are older such as you, me and others who’ve responded here. I was diagnosed May 2014 at 45.
I Googled JDRF and found a regional adult T1 support group. Some of the group’s members were diagnosed as adults, too, while probably 3/4 were diagnosed from toddler to college age years. Google and find an adults-only group nearest you.
As far as the roller coaster of hi/lo, I pretty quickly decided drastically reducing carbs was for me and helps avoid the entire nightmare. I eat unlimited non-starch veggies and very very limited other carbs. This means that many days I take no bolus insulin because even if my BG goes up, it isn’t too high and it comes back down below 160 within a couple of hours. My BG usually runs between 80-120 or so. Walking also helps - A LOT! But I always use basal insulin, Lantus, every night. My A1c is good now too & fingers crossed will stay that way.
Your numbers will stabilize and you’ll feel better once you find out what works for YOU. Read here, other websites, and as said above, look on line for an in-person support group. I also learned about T1, insulin, etc. by checking out library books and purchased a few at a used bookstore. Pick and choose info and tips that work for you and try different suggestions.
Good luck and hoping you improve soon physically and emotionally!
I would agree with the above, drastically reducing carbs makes the whole Type 1 adventure a LOT easier.
I was dxs ONE at 80 - had known I was hypo for 40 years but it changed 5 years ago. And doctors and folks will say, “Oh, No!” you must be T2 —only children are type ones." Hang in there! It can get better as you deal with it. It is depressing at times but you have alot of us that know what you are talking about. Talk with us,