From New York, USA:
During my first pregnancy at the age of 18, I was diagnosed with gestational diabetes which went away after giving birth, but I developed it again with my second pregnancy. After my second child was born, it didn't go away and I was told I have type 2 diabetes, but since I am a thin woman 5 feet tall, 105 pounds), I do not fit the profile.
After taking Glucophage for three years, my blood sugars went out of control, and I saw an endocrinologist who told me I had type 1 and had always had it, but no one caught it. I find this hard to believe since my father is in the medical field in the US Navy and had me checked for just about everything as a child because I was so sickly.
I was put on insulin and had dramatic reactions to it. With only a few units, my blood sugars would drop dangerously low and was then told by my endocrinologist that I was "insulin sensitive" and have "brittle diabetes". Soon my blood sugars returned to normal with only Glucophage [metformin], and I was able to stop the insulin.
After years of being told I produce no insulin, I am able to go off and on insulin. I need to take it for a month or two a few times a year, and the other times I am only taking Glucophage. I don't understand why, if I have type 1 and produce no insulin, I can go months without taking it then one day I need it again. However, when I do need the insulin it is very out of control, I am on a sliding scale for when it is needed and I cannot control it too well.
About nine months ago, my six year old daughter (who has hypothyroidism) was diagnosed with type 1 diabetes as well. My doctor said he found this odd since type 1 was not hereditary and that typically a mother doesn't pass to a daughter (something with the X,Y chromosomes). She is also on a very small amount of insulin and is most of the time out of control.
I am getting pretty frustrated that no one has answers for me. There is no family history other than us, and I am not convinced that we even have diabetes.
To answer the easy part first, I think that your daughter probably has what is called the Autoimmune Polyglandular Syndrome Type II in which a number of autoimmune disorders may be linked. The most common are diabetes and hypothyroidism, hypothyroidism, but you might talk to the doctor about getting an antiglutamyl transferase test for the celiac syndrome which is the next most common component. The negative family history is routine, but these autoimmune syndromes are indeed inherited in a pattern of cell surface proteins called HLA antigen types, and there are also unknown environmental factors that are needed to trigger diabetes in the genetically susceptible.
Your own case is rather hard to disentangle from an e-mail. One would like to know, for instance exactly how and when blood sugars were measured and what your hemoglobin A1c is.
The definitive test for diabetes is a properly taken fasting blood sugar of greater than 126 mg/dl [7 mmol/L] that is repeated at least once. Normally, an antibody test confirms the diagnosis of nearly all people with type 1 diabetes, but in your case it would be too late to do the test. What would help at this stage would be to get a blood insulin level if you were not on insulin and a C-peptide level if you were. These would be normal or elevated in type 2 diabetes and undetectable in type 1. There are of course other forms of diabetes.
In any case, what is important is good control of blood sugars irrespective of specific diagnosis. The term brittle is no longer considered a valid diagnosis but just a term for poor control.
Original posting 27 Mar 2003
Posted to Diagnosis and Symptoms
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