Discussions By Condition: I cannot get a diagnosis.

HELP- Diabetes T1, T2, Gestational or Something Else?

Posted In: I cannot get a diagnosis. 0 Replies
  • Posted By: zaristra
  • February 9, 2009
  • 09:02 AM

Background info: 25 years old, 34 weeks pregnant and currently 140lbs. Not on any medication.

It all started in early June of 2008 because I had a typical bladder infection. I tried to take care of it at home but decided to get antibiotics because it was really uncomfortable. I called an advice nurse who ordered a urine test for me at the lab. I didn't see a doctor, I just peed in a cup and went home. The next day I was called and told that yes I did have a bladder infection and also... there was a lot of sugar in my urine and I needed to come in ASAP to do a fasting blood test to see if I had diabetes. I did the test and was diagnosed with type 2 diabetes. My A1C was 7.4.

So, initially I was diagnosed with what my primary care doctor called "Atypical Type 2 Diabetes.” She said she suspected I had been diabetic for two years or more and just didn't know it. She said I was a “weird case” of diabetes because I am young, not overweight, have no family history of diabetes etc. She said my LDL (bad ) cholesterol was extremely high while my HDL (good) cholesterol was very low and I had elevated triglycerides. Also she told me I would probably have a hard time getting pregnant if I ever wanted to both due to my diabetes and because she suspected I have Polycystic Ovarian Syndrome (PCOS), although she didn't diagnosis me with it because she said I didn't quite fit the criteria. To get pregnant, she said I would need to take fertility drugs and hormone therapy.

To her, all my test results looked like I am a middle aged, overweight, unhealthy person who ate nothing but fried chicken for breakfast, lunch and dinner. She said normally she would send me home with cholesterol medication, diabetes medication, hormone medication and would have me take an aspirin right away! I expressed that I really hate taking medication unless it's absolutely essential. She insisted that I take something to get my blood sugar under control and suggested once it has stabilized a bit then I could consider not taking anything. She prescribed Metformin to help control my blood sugar and also really wanted me to consider cholesterol medication so she referred me to an endocrinologist for that and to a nutritionist to get started on lifestyle modification.

I met with the nutritionist who suggested the C-Peptide test and the GAD Antibody test to rule out type 1 because I was already doing the lifestyle things she was suggesting and she just didn't think I was type 2. My primary care doctor ordered only the c-peptide test which came back extremely low. She then changed my diagnosis to late onset type 1. Then...at some point in the two weeks following my diagnosis, I got pregnant! My husband and I were always very careful to prevent pregnancy (using condoms) but with the news that I couldn't get pregnant without medical intervention we stopped being careful and within two weeks or so we were pregnant! Luckily, I found out I was pregnant the night before my appointment with the endocrinologist. When I met him and told him I was pregnant he basically ended the appointment saying that cholesterol meds can cause severe birth defects and it's a good thing I found out before taking any.

Next I started seeing an OB for prenatal care. He immediately disagreed with my primary care doctor's diagnosis of type 1. He said with my age, it is too rare to even consider that I might have type 1 diabetes. He basically blew off the c-peptide test saying that something about my pregnancy probably screwed up the results and that I had to be type 2. He explained that if it was type 1, since I was not on insulin, I would be in the hospital dieing “right now” (as in while he was talking to me).

I decided on my own that I would stop taking Metformin. My OB insisted that it was safe to take during pregnancy but I just wasn't comfortable taking it. I took it for maybe a month after my diagnosis. My A1C went up to 7.8 but then at my next check, because of my exhausting efforts to control my blood sugar with diet and exercise, my A1C dropped to 5.6. To this result and the fact that it happened months after I stopped taking Metformin, my OB expressed that he wasn't even sure if I had diabetes at all. I asked to see an endocrinologist again and he said I was fine and I didn't need a referral at this point. I got frustrated with this OB because he seemed like he didn't care about helping me figure out what was going on with my diabetes. He acted like it was no big deal but to me, figuring out if I am type 1, type 2 or if I even have it is a BIG DEAL!

I changed to another OB who is much more attentive but she has not been very interested in helping me figure out my diabetes either. She said I might as well stop worrying about what type I have until after I am no longer pregnant because the test results are not going to be reliable right now. My most recent A1C as of 1/20/09 was 5.7 with my random glucose at 129. To this, my new OB echoed the idea that I might not be diabetic at all. She suggested that maybe I just have gestational diabetes but I disagreed with her because I have learned in my own research that gestational diabetes doesn't usually show up until the third trimester and I was diagnosed before I was even pregnant. To that she said maybe that was just pre-diabetes and the pregnancy caused gestational diabetes. She also said it's possible that it might just be insulin resistance due to PCOS. Despite my last two A1c results being normal, my actual BG readings have been getting worse and less consistent then they were in the beginning when my A1c results were high which my OB said is pretty confusing to her. She wants to put me on Glyburide to help stabilize my daily BG levels but I really would rather not because I read that like Metformin, it is not a good idea to take this medication if you are type 1 and it's not FDA approved for pregnancy. Since they don't know what type of diabetes I have, how can they even properly prescribe medication to treat it?

So here I am 8 or so months after being diagnosed with diabetes and I still have no idea what type or if I even have it at all. I have been told it was type 2, then type 1, then no it must be type 2, then maybe I don't have it at all, then maybe it's pre-diabetes, gestational diabetes or insulin resistance... Basically I have been told I might have every aspect of diabetes there is... or maybe not! I have little hope of finding out the truth until after the baby is born because my OB won't order any of the tests that would help distinguish it. The GAD antibody test (which I have never had done despite my insistence) in particular would be nice to have done because I read it is used to differentiate between type 1, type 2 and gestational diabetes. Therefore being pregnant shouldn't mess up the results but rather it would offer insight at to whether this really is just gestational diabetes or not. My main concern is, if this is not diabetes then what is it? I have read about some rare diseases that can be misdiagnosed as diabetes and if I have something like that I need to be treated accordingly.

I feel like this has just been one big diagnosis disaster and I would really like to get to the bottom of it asap but my doctors just don't seem to care. Before I was diagnosed with diabetes, I never worried much about my health but now I have so much anxiety about what might be wrong. So what do you think? T1, T2, Gestational, Insulin Resistance, Pre-Diabetes, or something else completely?

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