Denial About Diagnosis


(Katie) #1

I’m a 22 year old female living in LA and was recently diagnosed with T1D. I didn’t go into DKA, I didn’t need to be hospitalized, I just recognized the symptoms, (unexplained weight loss, having to pee all the time, thirst, dry skin) bought a glucometer, and brought it into an urgent care facility over the weekend because my sugar was over 300 consistently for a few days. They diagnosed me with Type 2, gave me all the meds, metformin, glipizide, which weren’t helping much, so after a month they ran a C-pep and Antibodies test and changed my diagnosis to Type 1, but I’m having a really hard time accepting that it’s accurate. The insulin has brought my sugars down, but it takes a lot more than the doctors originally prescribed, I’m supposedly still in the honeymoon phase, but I need 1 unit for every 12 grams of carbs I’m eating, I’ve lost weight I can’t really afford to lose because I am afraid to eat because it seems like I’m never giving myself enough insulin to cover it. I’ve never had lows with insulin, only highs. It’s been 3 weeks since my diagnosis and I’m just having a hard time committing to learning about T1D and getting involved because I’m afraid my diagnosis could change soon. Does anyone have any thoughts or advice? Is there any chance I don’t have T1D? If not, how do I cope with this diagnosis and accept it?


(joe) #2

I am only guessing that you are gad positive and low c-peptide meaning your body is literally attacking its own insulin producing cells and you are making less insulin than you need to survive. You can call this anything you want to call it. If you are in shock because they said you are type 1, while I am sorry, it does mean you need insulin for the rest of your life and there isn’t anything that is going to change the facts.

Take some time here, a diagnosis is trauma and it will take patients and understanding to get through it. Please never forget denial is a mechanism to keep you from seeing the brutal truth all at once to protect your head from exploding. It is necessary., and natural.

Everyone goes through this. No one gets a break. We understand. No one here actually wants to have diabetes.

Please consider getting a CDE and developing a strategy that fits your life and not bending your life around diabetes. It’s tough enough with the testing and all, you deserve some say in a plan that makes you feel good.

The denial passes if you keep talking about it. We are here for you. We are rooting for you.


(Dennis J. Dacey, PwD) #3

Hi Katie @katieanneharris, first off, a Warm Welcome to TypeOneNation!
Next, I must admire your awareness and your determination to recognize something was out-of-whack with your health and then to aggressively pursue proper diagnosis and treatment. The first diagnosis you received is a common mistake made by too many doctors who just look at a blood sugar test and date of birth. We are addressing MD education.

I think denial is expected from most but especially in your case because it appears to me that you have always taken good care of yourself and probably exercise regularly and eat a healthy diet. In over 60 years living with diabetes I have often said a very familiar “why me”. Of the half dozen or so conditions that have the common factor of Diabetes Mellitus [Greek for: frequent passing of sweet water], I wold rather have that label TypeOne because I know that I didn’t receive this “award” because of something I did or did not do; T1D is an autoimmune condition wherein my body is attacking itself.

Something you may or not have heard about T1D and insulin is that nothing stays the same day after day - the balance between activity, food and insulin is in a constant state of flux. For me, just because I use the same ratios of carbs:insulin [I use several different ratios depending on time of day] and eat exactly the same foods every day and do the same activities [happens very rarely] it doesn’t mean that my BGL [Body Glucose Levels] will always be in the same range. Rather than trying to “be perfect”, an impossibility, I just try to have my average over a period of time be in a range acceptable to me and to the endocrinologists who guide and advise me in my care.

Try not to be afraid of taking the amount of insulin you need based on your BG checks and the diary you keep [that may be in writing or in your brain] about how common foods you eat affect you. Being a “little high” especially when learning is safer than going “low”. I adjust my meal bolus insulin aiming for a target range of 100 - 130 mg.dl.

Good luck to you adjusting - message me any time and post occasionally about how you are getting along.


(Katie) #4

Thanks so much for your advice! I really didn’t know that I should expect inconsistencies with my sugars even with the same foods and insulin doses, that helps to know. I guess I just need to accept it and do my best from now on, my insurance is in the process of approving a CGM :slight_smile:


(Dennis J. Dacey, PwD) #5

Hi Katie @katieanneharris, what ever “numbers” you get, either from a meter or CGM, use that information for guidance in dosing insulin. for instance, if you are constantly “high” after visiting a particular restaurant, it may be possible that the particular chef adds something like corn syrup to all foods, so count every meal there as “higher” carbohydrate.
In my thought, the numbers are neither good or bad but rather “markers” for future action. I recently resumed using a CGM after 15 hear hiatus and had my eyes opened; well I also began using a new insulin, Fiasp, and have had to change every pump setting. Over many years I appeared to be doing good on AVERAGE; the HbA1c reports average BGL and two different endocrinologists have told me to “get that number up”. Now I’m getting that number up but with a much lower standard deviation - meaning I’ve eliminated my BGL swings getting rid of peaks and eliminating dangerous lows.


(Katie) #6

Do you find that a BGM is worth it? I’ve just heard that it still requires lots of finger pricking to calibrate it and that it’s not always reliable. I had my first real low in the forties yesterday and I’m lucky I wasn’t alone when it happened because I collapsed, I’m thinking a bgm would probably have helped me avoid that. I’m glad you’ve been getting your numbers in a more stable range! My struggle is that I love to cook new recipes and experiment in the kitchen and so my diet isn’t very consistent but it’s my passion so I don’t really want to give it up, at the same time I have been over 150 at some point almost daily since I stopped the metformin so maybe it will require more consistency in dietary habits.


(Dennis J. Dacey, PwD) #7

Yes Katie @katieanneharris based on my limited experience I think my CGM is very worthwhile. I’ve only been using mine for the last five weeks - yeah, I kept resisting after having had one about 15 years ago that never worked correctly. I had never blacked out, needed EMS assistance until I had diabetes for more than 55 years.
I’m using the Dexcom G5 - the only CGM approved by Medicare, and find it is extremely accurate - and it has “assisted” me in changing every setting on my pump and for the past 24 hours my BG has stayed between 90 and 168 mg/dl without any peaks. Only two calibrations required each day, and the newer Dexcom G6 model does not require any fingerstick calibrations.
If you are using a Tandem t-slim pump, you may be interested in the Dexcom G6 combination - just yesterday, the FDA approve the “Basal IQ” for this combination system - auto reduction and shut off of basal plus it will increase basal [and I think bolus] if the user’s BGL is rising too much.


(bsteingard) #8

Hi Katie,
It’s pretty common to be misdiagnosed with type 2 if you develop diabetes as an adult, but it rarely (if ever) goes the other direction. If it makes you feel any better, I take 1 unit of insulin for every 7 grams of carbohydrates I eat. The doctors like to start out with a conservative dose because they don’t want you to become hypoglycemic. As the others have said, it will take some time for you to figure out what doses work for your body. (It’s only been 3 weeks! It’s ok if you’re not an expert already!) And it will change over time, too. When I first started taking lantus I was using 33 units. Now, almost 10 years later, I’m down to 20. And my humalog doses have changed more times than I can remember.

There are a lot of different options for checking your glucose levels. Again, you’ll need to decide what’s right for you. Blood glucose meters are more accurate, but they won’t tell you which direction things are moving and can only give you data for specific moments in time, so you’ll need to check more often to get a complete picture. CGM’s aren’t quite as accurate (and some brands require blood glucose checks for calibration), but will provide a lot more data, which will be helpful in figuring out your insulin doses. I just started wearing a Freestyle Libre (after 24 years of blood glucose testing) and it’s been incredibly helpful, but I didn’t make that switch until I felt I really needed to.

I’m not sure what your target blood sugar is, but if you’re worried about low blood sugars, you can target to a slightly higher blood sugar level. My blood sugar tends to drop overnight so I aim for 150 before I go to bed. Even my daytime target is 120. It’s ok if you’re not in the “healthy” 80-100 range. My advice would be to aim for stability and then work towards the lower blood glucose/A1c readings. And hopefully in time you’ll learn to feel a low blood sugar coming (so you won’t need help to treat it). If not, then a CGM that has built in alarms might be worth looking into.

Good luck! We’re all here for you!


(K) #9

I think every diabetic whether Type II or Type I goes through some denial, I did for years, luckily I was a young kid and didn’t cause to much damage to my body. You will find that most doctors and nurses that are not specializing in diabetes often give confusing and silly advice, I had a primary care doctor prescribe Metformin because I had a high A1c and he knew that I have been Type I for over 45 years. I ignored his advice and my endo and I had a good laugh. This disease is yours to manage on a hourly basis or suffer the consequences. A good Patient Educator can help you and spend the necessary time to explain and give you realistic advice for your lifestyle. CGMs are your best friend, Dexcom does require calibration finger sticks, Abbott Libre lasts for 10 days and only recommends finger sticks when you are very high or low it also can give you a reading every minute, dexcom is every five. Keep in mind that CGM measures are on a 20 min delay when compared to a blood stick reading. You can forget you have this and deny it, but you are only hurting yourself and those around you that care about you. Buck up Katie, plenty of knowledgeable diabetes here to help you manage this and still experience the same life you had before the diagnosis.


(Jadeen) #10

Hi Katie!

I, too, was misdiagnosed as a Type 2 when I was 19, and then the diagnosis was changed to Type 1 when I went to an endocrinologist. My honeymoon phase was, as yours is and will be, incredibly unpredictable! While it was nice not having to take as much insulin, I can appreciate the consistency of my doses now that I’m not honeymooning anymore.

As to your concern about your diagnosis changing, I think you just need to take it day-by-day for now. Today, you’re diabetic, so you’ll need to do all of the diabetic things. Maybe tomorrow that could change (unfortunately, it likely won’t), but you have to take care of yourself today.

I wanted to reply to your post to 1) tell you not to get discouraged–you’ll learn your “new normal” and everything will stop feeling so overwhelming very soon! And 2) even though you’re t1d now, you can still do everything you did before, you just have to compensate in different ways. Don’t ever abandon cooking! It’s your passion and you can manage your diabetes while still doing the thing you love! Yes, consistency in eating habits helps in managing diabetes, but as long as you do your carb counting and dose before meals, you’ll still be able to live your best food life. Just takes a couple of added steps (and a good carb calculating app [coughmyfitnesspalcough]). :slight_smile:

Also, don’t sweat your missteps too much. It’s almost like when you get a new phone and it’s so nice so you’re super careful with it because you don’t want to scratch the screen or drop it and then once you get used to it and the newness wears off, you just toss it around everywhere. You’ll get accustomed to the highs and lows (literally and figuratively) and realize that you can only do your best. There isn’t one single “perfect” diabetic out there, so you’re 100% not alone!

And as for the denial, I’ve had diabetes for 10 years and I still refuse to accept that I have it sometimes. Let yourself have those times. Burnout happens. Just find yourself a good support system, whether it’s family, friends, or an online community like here. You’ve got this!


(Marcela) #11

Hi! I also live in LA and have been Type 1 diabetic for almost 14 years. If you ever need help with anything feel free to reach out! I know it can be extremely overwhelming but you will get the hang of it! It is a huge lifestyle change so don’t get discouraged and just know that you have others out there just like you. I just found this forum about a week ago and it has been so helpful already. Again, feel free to reach out if you need anything!


(Andy) #12

LA area here as well.

I was in DKA when I got diagnosed and by that time, I’da let them shoot gasoline up my arm just to make the DKA stop.
That being said, it is overwhelming. all the facts and figures and equations that you are supposed to chalk down to memory right away. All the concerned friends and relatives throwing unwarranted (and often times misleading) advice your direction…
I read your profile. Seems to be a pretty hectic life. Diabetes isn’t gonna slow you down.
You just need to get your doses figured out and life gets alot easier. At least the diabetes part.
As for that guy in your picture sucking on your forehead? I hope he’s a friend. (sorry, my dad genes come out on occasion. I have a daughter about your age.) I’ll tell you right now, that is not the best or most effective way to test blood sugar.