Brand new T1D here. 28 years old and diagnosed last week. I had stomach virus symptoms, and when things weren't getting any better after 3 days, I tapped out and had my fiance drive me to Urgent Care. My BG was 334 (and I was definitely fasting - I hadn't been able to eat anything) and they sent me straight to the ER. I ended up spending 3 days in the hospital, mostly in the ICU on an insulin drip. The doctor said I was in DKA and because of my lifestyle (I'm a personal trainer and nutrition coach - active lifestyle and at a healthy weight) that it was most likely Type 1 Diabetes. My A1C was 10. 10!!
It's been pretty scary, but I've been trying to do as much research as I can. I feel lucky to have a background in exercise science and physiology so that I somewhat understand what is going on...but you look at these things differently when it's just a textbook for class versus a firsthand experience. I don't feel like I'm getting much education or support from my endo, and my question for you wonderful people (so glad I found this community!) is, are there any tests that I should be requesting from my endo that would confirm my T1D diagnosis or at least rule out something else? All I know from my blood work is my A1C (which does seem pretty convincing that I'm diabetic).
I was on 16 units of Lantus and a sliding scale for Novolog right when I got home from the hospital, and after seeing my endo yesterday and reviewing my BGs from the past week, he increased my Lantus to 20. I'm on my feet all day and I'm worried that it's too much insulin...I felt mildly hypoglycemic twice today at work. The first time, I didn't have my glucose meter with me (lesson learned), the second time, I was at 86. I have a feeling I've been hyperglycemic for so long that a normal BG of 86 feels way lower for me.
You are correct about the idea that being high for so long is what is making you feel low at 86. 86 is a perfect BG and eventually you will feel awesome at that number (if you get tight control).
Diagnosis of type 1 is virtually always a sudden and frightening experience. And it is totally life altering. But with education and support from family, friends, and a good doctor, you can live safe, happy, and very healthy.
It is a common problem for the newly diagnosed to not receive adequate education. You would think every endocrinologist would make sure a thorough education is given to all diabetics...and ideally their family as well. But it just doesn't happen. Personally I would suggest staying active on this site and also reading Dr. Bernstein's Diabetes Solution, it is an excellent source of education on what diabetes is, how it works, and how to control it, as well as other useful knowledge.
I am sorry you have had such an unfortunate turn in your life, but you've found the right place for help, support, and understanding. Feel free to ask any questions.
I am in my first year of T1 and feel that "Using Insulin" by John Walsh is a great resource when you are newly diagnosed, there is a ton of great info in that book. I am actually rereading it now. When I was diagnosed I was forced out of work for six weeks to wait for a waiver from the DMV (I am a Streetcar operator.)During that time I made my own variant of the "smart charts" in the book and it really helped me to see how my insulin, diet and excercise (cyclist) were effecting my BG's. My A1C at diagnosis was 11.4 and my BG was 600+ when I was diagnosed, I got it to 6.1 six months after diagnosis (9 months 7.4 post holiday!!). It took at least 8-12 weeks before a BG of between 80-120 felt OK. I am sure I pushed myself for lower #'s a bit too fast but... Anyways , chart your stuff and it will help you see the cause and effects for yourself. You are your best advocate. Do not count on your endo to do it all for you. Your charts will also help your endo help you. Also don't forget that if you are in the honeymoon phase still, your pancreas can still crank out some insulin once in a while screwing up your best laid plans. So last but not least, it took me ten months to start carrying Glucose tabs with me everywhere.They are a great tool. If you feel low, eat one or two, its only 4grams of carbs and can get you to your next snack or break at work and your meter.
Maintain a positive mental attitude, T1 may make you take even better care of yourself than you did before.
I can see not thinking your endo is very supportive as the rate at which you find issues and very good questions can arise like 10x/ day you're testing, not having meter (good lesson!), BG slithering around, etc. is way more than I've found it possible to get answers from docs.
If he gave you the DX, it sounds like you cleared what can be a hurdle. I think the main reason to do more tests to confirm it is if you are T2 but find (largely through your own testing...) that you show up more as a T1 as T2 sometimes find it harder to get supplies, consideration for insulin, etc. but you've got that so save your money and buy yourself a present or something. You deserve it!!
I agree that "Using Insulin" is a great book. I also like regular Tu guest Gary Scheiner's "Think Like a Pancreas" and Ginger Viera's "Your Diabetes Science Experiment".
Re adjusting insulin, if you are really feeling "buzzy" at work, observe through testing that you're running low regularly (or sometimes even constantly...), you may be onto something. 20U/ day works out to about .83U/ hour. 19 would be .79U/ hr so it might be useful to try an experiment to see if it works more smoothly for you. Generally, you should only make changes in consultation with a doctor however it seems reasonable to toss that sort of mathematical approach out there so you can understand how to conceptualize something if he's like "well, we need more data, come see me in 3 months...". My basal rates (I have pump...) sort of drift, sometimes bit more, sometimes a bit less seems to be needed but 6 months is a long time if it's getting you buzzy every day. It's been my experience that if you ask a doc a specific question that seems moderate, they will usually say yes however I don't ask my doc that many questions.
Hi KBJ86, First of all your not alone, there are so many wonderful people who are here to help support you and offer advice. You have some great questions that are very important. You will learn so much. I'm a big believer that diabetics learn from other diabetics. I have type 1 for over 50 years.
Yes there is a test that your endo can do to confirm yout T1 diabetes,it is a C-Peptide, which measures your pancreas level to see if it is producing insulin. It the results are 0.5 or lower you are a diabetic. Also the fact that you have a higher than normal A1c for the past three months is also an indication, some Endo's and medical folks do not like to dx diabetes based on an A1C.
I would also recommend that you seek out a great retinal specialist and have your eyes check, also a great kidney and heart doc. Don't be overwhelemed with all of this info, baby steps is important.
I am hopeful that your endo comes around, if not I would look at other options. Also try to find a good CDE (certified diabetes educator) Now as far has feeling low, your brain will adjust to feelings of hypo, as you said you where hyper for so long that it is hard to feel the lows, this will get better over time.
Insulin is your friend and you will feel better! I am more than happy to work with you during this time of learning. Please feel free to contact me! Kitty
I was misdiagnosed as T2 by my GP at age 27. It was T1D all along. Hang in there and continue to exercise once you are stable. Mine started out with a stomach virus too. Slept on the bathroom floor!
I’m sorry you’re now in the club, but glad you’ve connected with us!
I was diagnosed at the age of 30, so my experience was similar to yours. The comments and advice you’ve received already has been good. The three most important things I advise are to maintain a good attitude, learn as much as you can about diabetes and insulin therapy, and find ways to motivate yourself.
Diabetes is life sentence, not a death sentence. Many live long and meaningful lives despite diabetes. Modern science and technology have made this game we play much easier to win, at least a day at a time. Blood glucose feedback data from meters and continuous glucose monitors provide valuable data that enable the diabetic to make crucial decisions. Data is just data, however; you need to act on it to make it useful.
Learn all you can about diabetes and insulin therapy. Knowledge is truly power, especially with diabetes. There are many good books and manuals that get into the nitty-gritty of using insulin. It gets more complicated before it gets less complicated. This is counter-intuitive. Don’t get put off with seeming initial complexity. Habit is your friend. Adopt a change for three weeks and it just gets easier thereafter and doesn’t dominate your mind space. Don’t ever let someone’s accusation of obsessing over diabetes treatment make you doubt your commitment to good control. While true obsessions can debilitate, it’s usually unfounded when tossed out by a non-diabetic to a diabetic.
You will live with diabetes for the rest of your life. While this fact can discourage, I look at it another way. Every significant discovery you make about your body’s glucose metabolism can then be used for the rest of your life! You will learn new things almost every day. Those things add up over time.
My prime motivation that keeps me fighting is that I much prefer to play a game that I can win. It’s basic human nature. I’ve adopted some tactics, including carb limitation, that enable me to win a lot more often than lose. I upload my pump, meter, and continuous glucose monitor regularly. Some observe that if something can be measured, it can be controlled. I would say that if I measure it then it tacitly engages me to make it better.
Don’t get discouraged with the initial steep learning curve. In no time at all you will begin to see concepts that you recognize. Don’t expect too much from your doctors and other medical professionals. They don’t see the world from your perspective. You now have skin in the game. Our medical system does not care for chronic diseases like diabetes very well. It won’t take long before you know way more that the doctors about how to treat and live with diabetes. Doctors are not gods. They do need to respect your informed perspective. I see doctors as allies in my fight, but they don’t know everything. I am the most important person in my medical care. Doctors work for me, not the other way around.
A good attitude, knowledge, and staying motivated are a potent triad in dealing with diabetes. Permit yourself the failures that will come. You are just human! More importantly, draw the right lesson from failures. Try not to make the same mistake more than a few times!
Good luck to you. You have your whole life ahead of you. Pay attention, learn, and you will do alright.
