michelle88
Well-Known Member
- Messages
- 83
- Type of diabetes
- Type 1
- Treatment type
- Insulin
Hi everyone
I was diagnosed with T1 in November 2011 after 9 months of steadily losing weight (11 kg over 9 months), having no energy, always being thirsty and going to the loo all the time. My BG level at diagnosis was 22 mmol with an HbA1c of a shocking 14.1. My diet pre-diagnosis consisted of carbs, carbs, and more carbs (pasta and rice mostly). Since I'm in my thirties and slim, my GP told me I definitely have T1 and had to go on insulin straightaway. Needless to say I was devastated. Over the next few months I was on MDI, but my TDD was only around 10 units or even less. After a few months I got my HbA1C down to 5.8. My GP said it was the honeymoon syndrome. Out of curiosity I asked my GP if she could test antibodies in my blood (because I was still very skeptical about the T1 diagnosis), and surprisingly the test showed no antibodies present. According to my GP, only around 10% of T1s don't show any antibodies. Fast forward a few months later, I became pregnant and in March last year gave birth to a healthy baby boy weighing 7 lbs, not at all a "diabetic baby". My insulin needs during pregnancy doubled only during the last trimester, during the first and second I needed even less insulin than before pregnancy. I had a battery of tests done during pregnancy, and again one test showed no antibodies present.
My GP had by then referred me to an endocrinologist. Because I asked, this endo showed me all my blood test results done when I was diagnosed back in November 2011. What struck me was my C-peptide number - it was in the normal range, although on the lower end. My endo suggested doing another C-peptide test (this was a year and a half after diagnosis), and the result was slightly higher than the first test done at diagnosis. He then proposed an "experiment": going off insulin for 2 weeks, with me testing every morning and before each meal. My BG was in the normal range (between 3.7 and under 6 mmol) at all times. My endo then said to continue the experiment without insulin, but I was suspecting that even though my BG was fine before meals, it most probably was very high postprandial, and lo and behold, it was (up to 15 mmol). I told him I wanted to avoid those spikes (he said high blood sugars don't cause damage in the short run!!) and decided to go back to low doses of insulin. According to my endo, I was suffering from insulin resistance instead of an autoimmune disorder and he would prescribe me Metformin once I was done nursing. Bizarrely, he was hesitant to amend my diagnosis from T1 to T2, even though it was clear after all those tests I fit more in the T2 category. Doesn't insulin resistance define T2? He also said he could rule out MODY and LADA and that my family background (a lot of T2s on my mom's side, although both parents are non-diabetic) indicated a genetic predisposition to T2 but still, he wanted to be careful in declaring my initial diagnosis as a misdiagnosis. But to me, that's exactly what it is.
As of now I am still nursing so I cannot yet take my Metformin. In order to manage BG spikes, I am again on insulin (TDD around 10 units).
Has anyone experienced a diabetes misdiagnosis or know of someone who has? Would love to hear from you.
Michelle
I was diagnosed with T1 in November 2011 after 9 months of steadily losing weight (11 kg over 9 months), having no energy, always being thirsty and going to the loo all the time. My BG level at diagnosis was 22 mmol with an HbA1c of a shocking 14.1. My diet pre-diagnosis consisted of carbs, carbs, and more carbs (pasta and rice mostly). Since I'm in my thirties and slim, my GP told me I definitely have T1 and had to go on insulin straightaway. Needless to say I was devastated. Over the next few months I was on MDI, but my TDD was only around 10 units or even less. After a few months I got my HbA1C down to 5.8. My GP said it was the honeymoon syndrome. Out of curiosity I asked my GP if she could test antibodies in my blood (because I was still very skeptical about the T1 diagnosis), and surprisingly the test showed no antibodies present. According to my GP, only around 10% of T1s don't show any antibodies. Fast forward a few months later, I became pregnant and in March last year gave birth to a healthy baby boy weighing 7 lbs, not at all a "diabetic baby". My insulin needs during pregnancy doubled only during the last trimester, during the first and second I needed even less insulin than before pregnancy. I had a battery of tests done during pregnancy, and again one test showed no antibodies present.
My GP had by then referred me to an endocrinologist. Because I asked, this endo showed me all my blood test results done when I was diagnosed back in November 2011. What struck me was my C-peptide number - it was in the normal range, although on the lower end. My endo suggested doing another C-peptide test (this was a year and a half after diagnosis), and the result was slightly higher than the first test done at diagnosis. He then proposed an "experiment": going off insulin for 2 weeks, with me testing every morning and before each meal. My BG was in the normal range (between 3.7 and under 6 mmol) at all times. My endo then said to continue the experiment without insulin, but I was suspecting that even though my BG was fine before meals, it most probably was very high postprandial, and lo and behold, it was (up to 15 mmol). I told him I wanted to avoid those spikes (he said high blood sugars don't cause damage in the short run!!) and decided to go back to low doses of insulin. According to my endo, I was suffering from insulin resistance instead of an autoimmune disorder and he would prescribe me Metformin once I was done nursing. Bizarrely, he was hesitant to amend my diagnosis from T1 to T2, even though it was clear after all those tests I fit more in the T2 category. Doesn't insulin resistance define T2? He also said he could rule out MODY and LADA and that my family background (a lot of T2s on my mom's side, although both parents are non-diabetic) indicated a genetic predisposition to T2 but still, he wanted to be careful in declaring my initial diagnosis as a misdiagnosis. But to me, that's exactly what it is.
As of now I am still nursing so I cannot yet take my Metformin. In order to manage BG spikes, I am again on insulin (TDD around 10 units).
Has anyone experienced a diabetes misdiagnosis or know of someone who has? Would love to hear from you.
Michelle