(I’m about to talk about my A1c without actually sharing my A1c because I don’t like to share specific numbers. Hopefully it will still make sense because I need a little advice or stories of similar experience.)
This summer has included quite a bit of travel and recently increasing amounts of stress. There is no good correction factor to lower a stress induced high BG value, so I have been running consistently higher than I would prefer.
I have gobs of pictures of Dexcom graphs saved on my computer and I keep an eye on the averages stored on my VerioIQ meter. I don’t download my full Dexcom results until right before an appointment because I use an old laptop that takes about 15 minutes to start up (the ONLY reason I still have it is for the CGM download).
I took a look at the averages (and standard deviations) in Diasend and the Dexcom report, and plugged it into the Estimated Average Glucose widget on the ADA site. I knew I wasn’t going to be happy with the results, but I wanted to go into my appointment prepared for the news. It appeared that my A1c was going to be at least a point and a half higher than it was three months ago.
I was really upset and considered canceling the appointment. However, I made a deal with “someone” who had been putting off a necessary appointment of her own that if I would go, she would go to her appointment as well.
My endocrinologist came in the room and we made a little small talk. My vitamin D levels are still low, which makes sense considering I can’t remember to take the pills. I’m pretty sure she is pregnant but at that “you can’t ask in case you are wrong” stage so I awkwardly avoided that topic. She asked how I was feeling and I told her that I was nervous about my lab results.
My A1c came back a full point lower than I expected. I told her that it didn’t match my averages. If it didn’t match my meter results, that could be easily explainable. As many times as I can test per day (8-10) there still are not enough data points for a comparison, but a CGM should give a more reasonable estimate considering I wear it 24/7.
She looked at the print outs from my devices. Just when she thought she could identify a pattern that needed to be adjusted, she would change her mind and notice that the problem wasn’t actually consistent. Argh! No changes to the pump settings.
At least we came up with a plan. When I get my labs done next, we are also going to measure my fructosamine level. The thought is that I might have something related to my red blood cells or hemoglobin levels that is artificially lowering my A1c (even though my full RBC count in my lab report is normal?).
At that point I remembered to ask her about my other recent frustration – the repeated moderate ketones with normal blood sugar results and significant stomach pain. Unfortunately, she was stumped by the ketones too. I am getting moderate ketones according to the blood ketone meters, but negative/trace ketones on the Ketostix.
I told her I hadn’t been calling the office when it happens because I was not sure what they could do. She agreed and said that their recommendations would only be regarding avoiding DKA – which is clearly not what is happening. She couldn’t explain why they are showing up in my blood and not “other places” either and she is not really familiar with the blood ketone meter. Her plan is for me to test for ketones periodically when I am feeling fine to see if the meter is off, if the ketones are related to the stomach pain, or some other reason yet to be determined.
I know I asked the ketone question before (twice) but I didn’t mention the “only in the blood” part? Has anyone experienced having moderate ketones in a blood test but negative ketones on a urine test? I know the blood tests are supposed to be more time sensitive, but would they also be more accurate? If they are moderate on the blood test, shouldn’t something show up on the urine test, even if it is delayed? Remember, my bg levels have never been over 130 with a flat line on the Dexcom when this is happening.
And the fructosamine… anyone have experience with an artificially lowered A1c? Were you anemic or any other similar red blood cell issue? I understand that a bg meter is not going to give me an exact match but am I wrong to assume a CGM should be closer? The estimations were off by a full point!
(I should add that I have an enlarged spleen. It has been thoroughly studied for cause and the official result is that… I have an enlarged spleen.)
Dr. Google was no help, the endocrinologist is stumped, anyone out there have any ideas?