I was diagnosed with T1D when I was 9. I had the best juvenile endocrinologist and nurse practitioner. Granted, I don’t really recall any advice they gave me or my parents but I remember getting warm fuzzies from them. When I went to diabetic camp, I remember seeing my nurse practitioner there and she helped me with my home sickness. When I went off to college, they let me stay one extra year to see them and I remember being so excited to introduce them to my first serious boyfriend (we were in college, home for break and he lived out of town so he was down visiting me when I had my appointment). I still remember them fondly and wish I could still go to see them.
Then, when I went to college it was time to find an adult endocrinologist. And I hated my first adult endocrinologist! I wasn’t the best about checking my blood sugar or eating right in college so when I saw this doctor, my A1C was higher and my blood sugar records weren’t great. My doctor just kept increasing my basal rates (hourly insulin rate). I was a little heavier one visit (thanks freshman 15, well junior 15, I suppose) and she very rudely told me I needed to lose weight. Another visit, I had lost a lot of weight (a lot being like 10 pounds or so) and she thought I was keeping my blood sugar high to lose weight. No, it was just a result of walking a lot around campus, thank you.
Luckily, when I graduated college I moved up to Northern Virginia and was forced to find a new doctor in my area. I actually found a nutritionist first (thanks to my boyfriend, now husband, who was shocked at my eating habits) and she couldn’t believe it but my basal insulin was 90% of my daily total. She couldn’t believe only 10% of my insulin was do to bolusing (or correcting for a high/putting insulin in for food/carbs). At least, I felt better about my eating habits because I was basically just eating a ton of carbs so that I wouldn’t get too low. My high basal rate was due to my wonderful (sarcasm) college endocrinologist. She never analyzed my numbers, just kept increasing my rates!
After seeing the nutritionist, I found an endocrinologist in the area. I wasn’t a fan of her either. She basically looked at my numbers every visit and threw up her arms and said “I can’t do anything with these numbers-they are all over the place!” Um, what’s the point of going to an endocrinologist if she won’t at least try to understand what is going on. She would also yell at me for not using my bolus wizard and for having numbers too high. However, I only had to see her once a year and the other three visits out of the year, I got to see her nurse practitioner, who I loved. The nurse practitioner would actually look at specific days and ask me what happened. Did you forget to bolus? Did you not count your carbs correctly? Did you work out? Etc. We would go through my numbers and make some sense out of what was going on. I also did a lot of basal testing so, instead of randomly increasing my rates like my college endocrinologist did, we corrected based on good testing.
Which brings me to my latest endocrinologist. I moved out of Northern VA in August and took a while to find a doctor in my area. I found one that is close to where I live that my insurance covers, so I went a few weeks ago (back in January). My doctor was very nice and seemed knowledgeable about diabetes, but I’m not sure she is the right one for me. I have never really “evaluated” a doctor before. My college endocrinologist I kept going to even though I disliked her and my Northern VA doctor I kept going to because she was close to my work and while I disliked the actual doctor, the NP was nice. But now I am thinking about getting preggers in a year or so and I want to make sure that I have a doctor that knows a lot about Type 1 Diabetes and even more importantly, T1D and pregnancy.
Now as I mentioned, this doctor was very nice but she said a few things that worried me. I had brought my Medtronic Minimed pump reports with me and she had no idea how to read them (my previous NP loved reviewing my pump based on the Minimed reports). She said “Oh, I have had one other patient that had a Medtronic pump and used these reports.” This worried me. Why does she only have one other patient with a Medtronic pump or only one other patient that uses these reports? I don’t know the statistics but I’m sure a good majority of T1Ds have a Medtronic insulin pump, making me think that she doesn’t deal with many T1Ds. I feel like that is the problem with adult endocrinologists. They are used to treating Type 2 diabetics, not Type 1. The other thing that she said that worried me was when I mentioned wanting to get pregnant soon, she mentioned that when she was in residency they had a T1D that was pregnant. Not the most encouraging that she didn’t say she has dealt with it lots of times. She was a very nice lady and other things she said to me revealed that she is very good at her job, but I don’t think T1D is her strength or at least she doesn’t see many T1D patients.
So, now I think I am on a quest to find a new endocrinologist. I say “I think” because I did like this latest one enough and honestly I don’t think they provide too much assistance anyway. I do all the basal testing myself and can spot trends and I know when I don’t bolus correctly or use the bolus wizard, it affects my blood sugar. I don’t get much benefit from seeing them every three months other than getting prescriptions or getting my A1C tested. It would be nice to have someone knowledgeable about pregnancy and T1D.
Do you have a good endocrinologist who helps you keep good control of your diabetes or are you still searching for the right one, or are not searching and are like me and trying to take control yourself and just using the doc for prescriptions?