Mixed emotions from my endocrinology appointment

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Yesterday, I had a doctor’s appointment with a new endocrinologist. I was very anxious about the visit because I really want to find a good endocrinologist before my hubby and I try to get pregnant. We moved to Richmond last August so I’ve been on the hunt for a doctor since then.  I’ve had really bad luck with endocrinologists in the past so I don’t want to make the mistake of going to the same bad doctor (well bad fit for me) multiple times.  I had decided to seek out a new doctor each time until I found “the one”.  This isn’t a very easy process though because you can’t ask the receptionist questions about the doctor to avoid wasting time with a visit.  I have tried to ask questions, but they aren’t very forthcoming with answers.

I went to a doctor back in January and while she was very sweet, she had made a few comments to me that slightly worried me.  She seemed very educated about Type 2 diabetes but didn’t seem to have dealt with many if any Type 1 diabetics.  She said that during her residency one, she helped one Type 1 diabetic through pregnancy.  This statement worried me and while I liked her just fine, I wanted to seek out somebody that might have dealt with more than one Type 1 diabetic.  So with a recommendation from a friend, I sought out this new endocrinologist and had my first appointment with her yesterday.

And I liked her a lot!  She was very nice and friendly.  She seemed very smart.  She didn’t make any comments to me where I felt like she didn’t know or understand Type 1 diabetes.  I discussed how my husband and I were looking to get pregnant soon and she seemed to really take that to heart and set me up with a diabetes educator to help me prepare.  Granted, I did do most of the talking.  I feel like with the help of the Diabetes Online Community (DOC), I know a lot more than in previous appointments and I went in there with a take charge attitude, questions ready and she did a great job listening to me and answering my questions.  The only negative I really saw from the appointment was that we didn’t really look at my numbers too much.  She asked me what areas I was having trouble with and I told her and she quickly reviewed my CGM data but didn’t really spend much time analyzing them.  I’m not letting that bother me too much yet.  We set up another appointment in 6 weeks so I’m taking yesterday’s appointment as a getting to know me appointment and maybe in 6 weeks we will go into more detail about my numbers.  Also, my old endocrinologist in Northern VA would download my data for me from my pump at the appointment and knew how to read my CGM data reports.  The doctor didn’t download or ask to download my data but that’s not necessarily indicative of her not knowing how to read my reports  so I’m not giving up yet.  My 6 week visit should hopefully confirm that I’ve found a good doctor or might make me realize I’m still on the search.

Yesterday’s appointment went well, a lot better than I expected.  I’m looking forward to going back in 6 weeks.  But if you noticed, I titled this post “Mixed Emotions” and that’s because along with the doctor’s appointment, I also got my blood work done.  I wasn’t expecting to get my A1C results until next week because of the holiday weekend but I got an email this morning with them and my A1C is 7.3.  🙁

I am so bummed.  I have been trying so hard recently.  I’ve been watching what I eat, exercising, using my CGM, testing my blood sugar way more than I need to, changing my infusion set more often than in the past, carb counted, bolused aggressively for highs, lowered my alert threshold to 200 for a high versus 240 before.  I’ve basal tested to exhaustion.  I’ve done everything I could possibly think to do to get my A1C below seven and it’s sitting up there above the line at 7.3.

My husband and I were talking last night about what the number would be.  He guessed it would be 6.8.  I thought that was a pretty good guess.  My average glucose result have been around 150 for my 7 day and 14 day.  In the past it’s usually been between 180 and 230.   I was all ready to celebrate my first time ever being under 7.  Sure, 7.3 isn’t bad.  But I’ve been 7.3 before.  Heck, I’ve even gotten as low at 7.1.  Last year when I was 7.3 and 7.1, I wasn’t trying nearly as hard as I’ve been recently.  I don’t know what I was doing then to not have been trying hard but still be doing better than I have been now.  Last August when I was 7.3, I had just come back from a 3 week trip to Europe and a 2 week trip in California where I was so busy having fun, I wasn’t thinking about my diabetes much at all.  I also bought a house last August so July was spent stressing about finding a house-definitely far away from worrying about perfect blood sugars.  My endocrinologist made a perfect statement to me yesterday.  She said “I haven’t been bad, but I haven’t been perfect either”.  Perfection is so hard to achieve with Type 1 Diabetes.  She did write an encouraging letter to me when she gave me my results.  And I was 7.6 back in January so maybe I’m still fighting to come down from that high back then.  But that 6 months ago so I don’t really think that could be why I’m still higher.

I’m happy that I think I have found an endocrinologist that I might stick with but I’m so bummed and down that all my hard work hasn’t paid off.  I’m not sure what else I could be doing to get below 7 but all I can do it keep trying and hopefully one day I will be able to celebrate.

At least I have fireworks to look forward to for tomorrow-Happy Independence Day to all my fellow American readers!

Happy Fourth of July!

Happy Fourth of July!

20 thoughts on “Mixed emotions from my endocrinology appointment

  1. An A1C of 7% = an average of 154 mg/dl, so you’re hovering right in that area. So a couple things: first, previous months will affect your A1C not just the last 14 days. So if you keep it up, the next one will probably be even lower. Second, meters are often inaccurate (as we all know) so there’s a chance that it’s not properly reflecting where you are. You might want to set your target even a bit lower than where it is now in order to make up for any discrepancies in accuracy that you’re having.

    Your most recent month has the greatest affect on your A1C (because red blood cells, which the A1C measures from) are always dying. But you always have a little bit of influence from previous months. So that’s why a current A1C might seem better or worse than expected. Keep it up! You’ll get there.

    • Yeah very true about the meters. And I didn’t realize the most recent month affected the A1C that much…that could explain it because I’ve been lax with working out the past few weeks and I did have about two weeks in June which were frustratingly higher-probably because I wasn’t working out as much. I guess that could be it.

      Yeah, I probably do need to lower my target more. I get so scared to be low but I’m slowly overcoming that fear. Thanks for the tips and the encouragement! Some days it’s so hard to stay positive about diabetes so any encouragement is definitely appreciated, especially on a bad day. Thanks 🙂

  2. Things WILL work out, so don’t get discouraged. I commend you for taking the correct steps in order to achieve a healthy (soon-to-be) pregnancy. If I could rewind time, I would have done it the “right way”. Praying that this endo turns out to be everything you’ve wanted!

  3. What Allison said 🙂 Make sure your meter(s) are calibrated, and lower your high threshold. Mine is set to 150, and last month my A1c was 6.3. Yes, I have some lows, but setting my low threshold alarm to 80 usually helps rein them in before they get too bad. It’s definitely a balance you have to work out for yourself, and just do what you are comfortable with. Because once you get pregnant, there’s even more variables, adjusting, changing insulin needs, etc to deal with!! Good luck, you CAN do it!!!

    • Wow 6.3 is amazing! My high threshold is 200, so I should lower it, 150 seems so low though-does your alarm go off a ton? Even just eating breakfast in the morning increases my blood sugar by 100 so it would be a guarantee it will go off every morning haha. I have changed my insulin to carb ratio though so hopefully that will help too

  4. I also second (third?) lowering your high threshold. I “baby-stepped” (pun intended) mine down to 170 from 200. Try a week or two at 190, then a week at 180 and so on. Also, don’t be afraid to play around with your basal rates and setting temp basals, etc. I know it’s hard and I need to take my own advice, but have confidence in your CGM – it will let you know when something is up and you need to give immediate attention.

    I hope you’re able to get in to your CDE soon, mine has been amazing in helping me get my numbers down. I hope you have a similar experience!

    And, also HIGH FIVE to you. You’ve gone down .3, which is great! If (when) you’re down another .3+ at your next appointment, you’re right in the baby-makin’ range. You’re doing awesome.

    • Thanks 🙂 Yeah, dropping 0.3 is good so I should be happy but I was 7.1 last year and ended up going up to 7.6 this January. It’s just so crazy that I wasn’t even trying that hard last year when I was 7.1. This year I feel like all I think about is diabetes. Oh well, as you said hopefully I will drop down another .3 and I’ll be there. It’s so hard to pull the trigger on lowering my high threshold-my alarm goes off enough as it is haha. Thanks for the kind words! 🙂

      • Girl, believe me, I was nervous too. Thought I’d never get a good night’s sleep again. BUT, I find that with the high alert being lower, I’m much more pro-active to not have it go off at all. And if it does, I’m faster to fix the problem (while trying not to over-treat).

        I also feel like I’m so much more diabetes-focused this year. I am really trying to get into good habits now so that when I do get pregnant it’s not quite as drastic a lifestyle change, at least as far as effort I put in.

        You got this.

  5. I agree about lowering your threshold down by 10 every week or so. I keep mine at 160 now, low is set to 75. Also, I cannot stress enough how much pre-bolusing helps. I started by pre-bolusing for 10 minutes and now I’m up to 20, especially for breakfast. I used to skyrocket to 240 after breakfast and now it’s unusual for me to go about 190 before coming down. 100% due to pre-bolusing.

    • Yeah, I skyrocket afte breakfast every single time! I try to pre-bolus but I find breakfast is the hardest to do-maybe why I skyrocket so much 😛 Good advice on lowering it by 10 every week..I was a little scared to go from 200 to 160 or 170 but starting at 190 would probably be better. Thanks!

  6. A few appointments ago, my endo told me that the difference between a 6.9 and a 7.1 (or whatever numbers they are, I don’t really remember) is getting rid of the postprandial spikes, particularly after breakfast. (That’s when I became so addicted to the Super Bolus!!).

    Also, one thing I found that ruined the A1C average (other than bolusworthy snacks) is hovering in the high range overnight. My CGM threshold was set to 180 so it wouldn’t annoy me with all of those alerts after meals, but I’d find myself hovering in the 160/170 range for hours overnight — hours where it’s slowly hurting my A1C and I’m doing nothing to fix it.

    So I changed my nighttime threshold to 140. Most people set their overnight thresholds higher so as not to be annoyed by them, but I figured that if I could spend my overnights in the 100-130 range rather in the 140-170 range — for six, seven, eight (I wish) hours at a clip, it would help my A1C. It did. Since I don’t have nocturnal post-meal, it works for me. As far as I know, you can only have separate thresholds based on time with the Medtronic system — not the Dexcom.

  7. You’re doing great! You might not be where you want to be, but you’re heading in the right direction!

  8. Hey, 7.3 is definitely heading in the right direction. You are more than your numbers. I’m sure you know that, but it never hurts to be reminded now and then. You WILL get there.

    • Thanks! Yeah, I am more than my #, thanks for reminding me…I am definitely healthier than I have ever been and even though my A1C didn’t reflect it, I think my blood sugars have been under a lot better control. I was so ready to celebrate being below 7 though 😉

  9. I often find articles about bad luck appointments with endocrinologists (the similar stories to yours) and I start to understand that to find good specialist, specially endocrinologist, is really hard thing, am I right?

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