From Tiverton, Devon, England:
Three and half years ago, I went to my doctor because I felt unwell, sleepy during the day and lethargic. I'd lost a bit of weight too, but I didn't have any symptoms of diabetes. I had a blood test which showed my sugar was higher than it should be, 7.4 mmol/L [133 mg/dl]. My general practitioner arranged a tolerance test a few weeks later which confirmed I had diabetes. My fasting blood sugar was 11.7 mmol/L [221 mg/dl] and two hours later, it was 18.3 mmol/L [329 mg/dl]. I'm 24 years old and was diagnosed at 21 with type 1 diabetes.
Over the past three years, I have not followed the typical path of a new diabetic. I have needed insulin on and off and I've never needed very much. At the moment I only need six units in the morning and six at night of a mixed insulin. I work in a hospital myself and have a medical background. I've worked with diabetics who are on 50 to 60 units of insulin a day. Even most diabetic kids are on more insulin than I am. My A1cs have always been in the normal range. I just don't understand how I can need so little insulin. I thought type 1 diabetes meant a total loss of insulin. Surely, I should be on at least 20 or more units. My BMI is 21.
My diabetic team is puzzled as they say I can't have type 2, considering my weight and lack of family history. Yet, they can't explain why I need such small quantities on insulin. Do I need further tests? Do you think my diagnosis is right? I know that some diabetics have a honeymoon period, but I've been told there's no way I can still be having that three years after my diagnosis.
I'm fed up with all this uncertainty. I don't know what's going on. Does it matter that I don't fit the typical type 1 picture? Can't I just be slightly different? I'd be happy just to take my 12 units a day, but the medical staff are making it difficult by constantly raising their eyebrows in surprise every time I see them. It makes me feel really odd. I'm just fed up with all this.
I'd really like your opinion. The team is reluctant to un-label me diabetic but, at the same time, I don't fit their typical textbook diagnosis. I just hope I haven't been living with a condition I don't actually have for the last three years. I feel like I'm being messed around.
I want to get pregnant and have children, but I'm terrified that, if I go into hospital to have the labor, I will be given more insulin than I need. I've had several illnesses over the past couple of years and I was always told I would need to increase my insulin, but, on these occasions, I became profoundly hypoglycemic. I've never needed to increase my insulin for illness. What if labor is the same? What if they treat me like every other pregnant diabetic, which I'm not. I'm scared that I'll go low, or worse, in labor. I'm also terrified of being admitted to hospital one day and them giving a typical insulin dose, which would be two or three times the dose I am receiving now.
You raise a number of questions. However, your oral glucose tolerance test was absolutely abnormal. You have diabetes. Your thin body habitus and young age of onset are characteristic of type 1 diabetes. However, some individuals do not have the precipitous loss of beta cell function that is usual for patients with type 1 diabetes. That is good. If you have not lost your function, it is more likely your blood sugars will be closer to normal. You may have a form of type 1 diabetes with a lower autoimmune loss of beta cells. By living a healthy lifestyle and maximizing your control, you are going a long way toward maximizing the period where your control will be good. If I were your physician, I would find it helpful to intermittently evaluate your ability to make insulin on demand to know what your insulin production reserve is. In addition, I would want to know if you have any markers of autoimmune diabetes, such as an anti-GAD antibody. This test is positive with autoimmune type 1 diabetes. Clearly, I do not think you have been living with the incorrect diagnosis.
In terms of pregnancy, it is helpful to consider that, at this point, you are probably free from any complications from diabetes. Although there may be some risk above that of a person without diabetes, you would still be able to get pregnant if your sugars remain normal. I would count on using insulin as hormones produced in the placenta actually antagonize insulin's effects. The usual pattern is to use more insulin the further you go in your pregnancy. You would have to be ready for an intense rise with frequent monitoring and insulin injections. This plan and any talk of future pregnancy should be carefully discussed with your physicians. In the big picture, I am glad your diabetes is not difficult to treat. It could be worse.
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