T2 +10yrs +neurosurgery = T1 ???
So glad to have found this place!
Was dx diabetic at age 51, type 2. Lower end of obese, BMI 31. Was put on Metformin then, and didn't take the dx very seriously as my BG levels seemed to remain more or less level regardless of what I ate. Over the next seven or eight years, needed higher doses of metformin for higher A1c's, but day to day readings were pretty regular, again regardless of what I ate. I was testing only once a day in AM, however. After maximum dose of metformin, added glimiperide, which seemed to make no difference at all.
Then, out of the blue, I developed an epidural abscess at C6, with infection from C1 to T2. After emergency surgery, lost kidney function (creatinine >7, GFR <8), blood sugars to 500. In the hospital for 26 days, several dialysis runs, carb controlled diet and insulin. Went home on IV antibiotics and insulin, and two months at home before being ok to go back to work. No metformin because of nephrotoxicity, but surprised by feeling much more in control with insulin injections and testing 4 times a day.
Even so, it seemed a good idea to see an endo. To my total surprise, he said he'd bet I'm really T1. My half-sister had told me that my dad's family had lots of diabetes, though we didn't know what type, and I have some autoimmune stuff going on. The endo is very pro-pump and wanted to test me to see if insurance would cover it. C-peptide was 3.5, but the GAD was positive, so I've got a purple pump here and a training class set for Nov 9.
In the meantime, eating exactly the same way, and doing exactly the same activities, my BGs have jumped 30-40 points in the past few weeks. I haven't been sick, and I use a scale to measure carb portions, so don't know whar's going on.
Please forgive me for this super long post. I guess I'm still boggled by the T1 dx and trying to make sense of it!
Was dx diabetic at age 51, type 2. Lower end of obese, BMI 31. Was put on Metformin then, and didn't take the dx very seriously as my BG levels seemed to remain more or less level regardless of what I ate. Over the next seven or eight years, needed higher doses of metformin for higher A1c's, but day to day readings were pretty regular, again regardless of what I ate. I was testing only once a day in AM, however. After maximum dose of metformin, added glimiperide, which seemed to make no difference at all.
Then, out of the blue, I developed an epidural abscess at C6, with infection from C1 to T2. After emergency surgery, lost kidney function (creatinine >7, GFR <8), blood sugars to 500. In the hospital for 26 days, several dialysis runs, carb controlled diet and insulin. Went home on IV antibiotics and insulin, and two months at home before being ok to go back to work. No metformin because of nephrotoxicity, but surprised by feeling much more in control with insulin injections and testing 4 times a day.
Even so, it seemed a good idea to see an endo. To my total surprise, he said he'd bet I'm really T1. My half-sister had told me that my dad's family had lots of diabetes, though we didn't know what type, and I have some autoimmune stuff going on. The endo is very pro-pump and wanted to test me to see if insurance would cover it. C-peptide was 3.5, but the GAD was positive, so I've got a purple pump here and a training class set for Nov 9.
In the meantime, eating exactly the same way, and doing exactly the same activities, my BGs have jumped 30-40 points in the past few weeks. I haven't been sick, and I use a scale to measure carb portions, so don't know whar's going on.
Please forgive me for this super long post. I guess I'm still boggled by the T1 dx and trying to make sense of it!
Replies to This Discussion
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Permalink Reply by Brian (bsc) on -
We have often had stories of misdiagnosis, but your's seems like a classic. You probably were LADA, but you may also have validly had T2. The average time till insulin dependence is 6 yrs with LADA, but lots of people are not diagnosed properly or never diagnosed. You just went longer. And once you had the infection, your blood sugar soared, and the high blood sugars taxed/poisoned your remaining beta cells. And it was only then you needed insulin and anyone even questioned your diagnosis.
Your c-peptide is 3.5, which is "normal." You are probably insulin resistant. It is common for people with LADA to have thier insulin production go up and down and need to make changes. And it is also common to take some time to come to terms with your diagnosis.
Best of luck with your pump and classes. You might find the book "Pumping Insulin" by Walsh really helpful with your new pump.
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Permalink Reply by Melitta on
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Hi HFW: I am glad you found us! Have you joined our LADA group? Your c-peptide is normal; you are GAD positive, which means Type 1 autoimmune diabetes/LADA. I agree with BSC, Pumping Insulin by John Walsh is a great resource, and using a pump is really preferable for control, in my opinion. Finally, a diabetes diagnosis/misdiagnosis is a big shock; there is a huge emotional impact that is rarely discussed, including grieving. Use TuD to ask questions, get answers, and get support!
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Permalink Reply by hfw on -
@BSC
@Melitta
Thanks for your responses. I'm reading Pumping Insulin now and learning a lot, even though I'd read much of Using Insulin as well.
This has been quite a year. I still have trouble believing how terribly sick and near dying I was, from something that came on suddenly and with no warning at all. And then to find out that I've been dealing with at least two autoimmune disorders, both with a likely genetic basis. It does help to see how the pieces fit. I wish there were more relatives, especially on my mom's side, to verify what I think I know...
Is there a difference between LADA and Type 1.5?
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Hi HFW: LADA and Type 1.5 are "slang" terms; LADA is just slow onset Type 1 autoimmune diabetes in adults. Type 1.5 is commonly used to refer to Type 1 diabetes with some insulin resistance (or somewhere between 1 and 2). It's all very confusing! Personally, I think the big difference is between autoimmune diabetes (or immune mediated destruction of the pancreatic beta cells; GAD, ICA, and/or IA-2 positive) and non-autoimmune diabetes.
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