Thank you for sharing your story!
I’m not afraid to go on insulin (I was on it for both pregnancies with gestational diabetes). And if it’s what will ultimately control my blood sugars then it’s what I need to do! In some ways I look forward to a bit of freedom I would gain if I go on insulin!
Not necessarily. I am on insulin with a cocktail of orals and very rarely have lows. When I do, they are usually mild and fair-to-middlin’ symptomatic (good).
I am very curious in knowing the result of your C-peptide test, along with your BG level at the time.
Years after being diagnosed T1D, I had a C-peptide test and it came back at the very low end of normal. Thus, some might conclude that I was not T1D. However, such a conclusion ignores the fact my BG was quite high when the C-peptide was quite low; they should track.
Keep in mind all tests have false positives and negatives. Since you appear to be very level headed, I would be inclined to trust your instincts. Get a Tandem Pump with G6 CGM, and join our T1D club… (Also plan to start with basal rates lower than typical.)
there IS a lot more freedom when you’re on insulin and if you get a CGM, you won’t have to be dealing with unexpected lows.
While I don’t have a CGM, just being on the pump and getting my basals and bolus ratios correct have eliminated most of the low. My A1c has been running between 5.8 and 6.2, with no serious lows and only a few minor lows that are easily dealt with.
There is a fairly steep learning curve, but once you get the hang of it, (carb-counting, etc.) it becomes second nature.
Good luck…you’ll get so much support here whether you go for insulin or not.
Read over all of the responses to your dilemma.
I too have gone thru all the testing route and in my case can’t get an A1c. below 7.5
My Endocrinology Doc. Does not at least in my case, trust A1c results. In my case she runs a “Frutosamie” test. Which she shows better how the glucose is binding better the the A1c.
Anyone good luck
@bjared i would agree with Ruth4 here. I am type one diabetic for 36 years now. i have the tandem x2 slim insulin pump with the dexcom g6 cgm. the CGM is a game changer as far as not having to check your blood sugar ever and be at ease knowing you can see it at any time. the tandem pump actually uses something called control iq and actually controls your blood sugar ranges for you. it is a life saver for me. i hardly ever check my pump anymore because i trust its doing what i need it to do keep me in check. Something to think about. i use humalog in the pump and i am an avid weightlifter who eats anywhere from 75-300 grams of carbs depending on my goals. so little to no carbs is not always the answer. my a1c is around 6.3 or 4 nothing bad. i rarely if ever have overnight lows because the pump keeps it at a manageable level while i sleep and has modes called exercise and sleep. Really worth trying if you get to that point. just an fyi hope some of that helps you. but diabetes is a very frustrating disease people who do not have it do not fully understand how exhausting it is being a diabetic. its a second full time job!
I share your intense desire to understand this thing. If there is one thing I have learned over 45+ years as a Type 1, there is no magic regimen for managing this disease. I have looked & experimented far and wide.
The best period was 10-15 years ago when I was running half and full marathons multiple times per year. I could eat almost anything, sometimes without taking insulin. Mentally top of my game. Doctors were impressed. But alas, all things must pass. Time moves on, the body matures, and routines change.
My fallback now is just to keep at it no matter how many “what-the…?” moments, take one day at a time, stay vegetarian, and celebrate the A1c victories when I can (now down to 5.5 for last 8 months).
Good afternoon,
Just joined the group and thought I would share some thoughts. I’m type 1 so not really qualified but I know the frustration of diabetes as I’m 40 years type 1.
One not sure how how often you test but you should always test, minimum before all eating so you can adjust plans accordingly.
Sorry I read letter once and can’t review as I type response. There seemed to be concern with weight, if sugar is maintained weight is up, and if running high tends to be down has been my experience.
We’re you surprised at the high A1c or was your body telling you? My family tells me often test you sugar when I’m irritable and it’s usually high. Sounds like the prescription let you down, and I do agree that you should be allowed to see endocrinologist.
Are you aware of the continuous glucose monitor? I think they can help a lot, but not for me due to activity and I have the pump which doesn’t leave a place to put it.
I hope you find something useful, and don’t hesitate to ask. We are not alone in fighting this silent killer.
Thank you Melitta for the article by Dr. Peters. I admire all she does. I have one comment about considering family history for T1 vs. T2. I became T1 at age 51. I was VERY lucky to be diagnosed properly from the start. My Father, his mother, 3 brothers, all have/had T2. I’m am glad my doctor did not allow that to determine which I had. Of course having T2 family history makes T2 a greater likelihood BUT that does not reduce the likelihood of T1.
Great news you were diagnosed properly, the bad news is, you can have both type1 and type 2.
If you are on insulin, it won’t matter as much to you. I finally spoke to and endo who had the answer I had always wondered about. The standard insulin dose for a type1. And it’s .5 units per day per kilogram. But there is some variance.
If you need more than 200 units in a day, that goes for anyone of any weight, you have insulin resistance (type2). This also goes for type1 so there you go. We can develop both because they are actually two unrelated illnesses.
Jus curious, is that TDD? Since I am type 2, I expect I still make a bit of insulin. My TDD insulin is .38u/kg. Part of that may be a combination of careful diet and daily exercise, reducing the glucose load and increasing insulin sensitivity.
That number is for everyone, it’s just difficult to know how much insulin your body makes. Mine makes none so I know all the insulin I get is the insulin I inject