The very last thing that I was expecting to hear was that my hba1c had gone up after three months on an insulin pump.
I mean, I wasn’t expecting dramatic improvement straight away. I knew full well that my pump is not a magic wand. I knew that my glucose levels were fluctuating far too much pre-pump. When we looked at my Ambulatory Glucose Profile with Gwen back in May, she said just as much to me.
But I definitely believe that this variance is much tighter today. I feel I don’t peak above 15mmol half as often as I used to. Lows aren’t too bad either, but they are definitely a work in progress. I’ve been putting so much work into my diabetes. More than I used to on injections.
So I guess I went in there, mentally prepared to hear that my a1c result was the same. But definitely not half a point higher than my last one.
For a while now, I’ve stared at half decent a1c results. The doctors have been quick to dismiss me, but I’ve never truly felt satisfied with my results. Deep down, I knew that my levels were fluctuating far too much. I knew that I was peaking way too high after meals, and having far too many lows. I knew that my a1c result was not an accurate representation of what was going on with my levels. But I never had the courage to ask for help. I pushed these thoughts to the back of my mind, telling myself I would fix that problem before my next check up in six months time.
But I never quite got around to it.
So, I guess there was a damn good reason for the rise in my hba1c result last week. For the first time in a long time, I have a clear picture of where my glucose levels actually sit. It definitely means that I have made some progress. But at the same time, my goal post feels a lot further away. I am realising just how much hard work lies ahead of me in order to get that a1c to where I want it to be.
As I made a long drive home in peak hour traffic and pouring rain, it was hard not to feel disappointed. It was really hard not having Gwen, who recently retired, there with me that day. She had been with me all the way through my journey, and I’m sure that she would have understood exactly where I was at. I’m sure she would have known exactly what to say.
I dream of the celebratory dinner I’ll have when I get my a1c to where I want it to be. I dream of the satisfaction I’ll feel. The grin on my face. The sense of achievement. The victory. Feeling somewhat in control of this unpredictable disease. And the cake.
I am motivated. I know that I have made some solid progress in these last three months. I know that I am going make it to that dinner table one day.
Its hard work, but you will get there. The pump provides a lot more freedom, so you tend to not follow as many routines, be more adventurous with food, etc. which can cause glycaemic impact. But once you do figure all that out with the pump and know what you’re doing its a little easier to control BGLs. Also, if you normally do a HbA1c via blood test, but did this one via fingerprick on those little machines, the finger-prick based HbA1c machines read much higher (nearly 1mmol higher).
Thanks, Ashleigh. Yes, my educator has told me there can be a variance compared with pathology results.
Being fairly new and “green” to all the diabetes talk…I know I had a hba1c test back when I was diagnosed and was told it was 9%…but nobody ever told what the heck that means…I was just told it wasn’t good 🙁
Can someone PLEASE explain this hba1c to me in layman terms. When I see Endocrinologist it is all fairly rushed and I seem to forget to ask about this every time cuz she is so busy using me as a guinea pig in regards to insulin etc! I know I am up for another hba1c test VERY soon since changing insulin and starting Jardiance (btw GREAT pill that will help you wee out excess sugar BUT 5% end up with thrush…do I need say more!!!)
Specialist STILL hasn’t determined whether my case is a complicated Type 2 or Type 1….not that I care what it is called…I just know my pancreas has “carked” it and MIGHT be producing the tiniest amount of insulin but she doesn’t know yet!
I spent half the night trying to keep my BSL from going too low…this is a first for me! I don’t like going to bed with a BSL below 5 because my sugar drops REALLY quick and without warning! It is SO NOT under control! Hubby said that he is 100% sure I will end up with the pump…I hope not because from what I understand…rapid-release insulin is used and my body HATES it! My sugar is behaving if I “starve” myself but as soon as I just think of food…the monitor spikes like crazy! I decided to have a creamy chicken cuppa soup the other day! BSL went from 7.4 to 16.2 within 20 minutes of eating the soup…it is just CRAZY! I am glad it wasn’t 2 min noodles then! I unfortunately am a carboholic but was surprised to be told I MUST eat carb when in insulin! I had to go into hospital done months ago at the beginning of my diagnosis. They had me on “diabetic” diet and my BSL plummeted because there was not enough carbs in it! So I have been indtructed NEVER to have “diabetic” diet on planes, hospitals etc cuz that is for ppl who control their diabetes with diet and not insulin! Would have been nice to know BEFORE I almost hit the floor in hospital from a sudden BSL drop and shaking like I had Parkinson’s and sweating like I had run a marathon! That was my first hypo and have Serbs been instructed to eat BUT how can I when just thinking of food makes BSL spike at 17-20 and that is with insulin in me 🙁
What can I say…I hate diabetes! I feel it is completely controlling my life with foods…no foods…monitoring BSL with Libre and blood strips…pancreatic pain when BSL is too high and feeling bloated and yuck…so blurred vision I can’t read ANYTHING…headaches…sweating profusely…not sleeping…THIRSTY…shaking…feeling wonky and dizzy. I ONLY feel good if I manage to keep BSL at around 7.5 – 8.
Hba1c is your estimated average glucose over a three month period. For example, our recommended hba1c of 7% translates to an EAG of 8.5mmol. I’m so sorry to hear of what you’re going through. In my experience, giving insulin 15 minutes prior to eating some foods helps with the spikes, and in time you’ll figure out what works for you and what doesn’t. Diabetes is, indeed hard!
Jeremy, T1D traveler
That’s the funny thing about A1C – you’d like a good number, but you’d like to achieve it without so many highs and lows.
I don’t have mine checked often enough; it was 8.0% a couple years ago, but last month after working hard to fix some of my problem spots (post-dinner, for example) it was down to 6.9%. Not too many big swings during that time too, so it seemed like a more “real” 6.9.
Frank do you not want to say what your number was? 🙂
Thanks Jeremy. I’ve never really shared my A1C online – I think it’s just something I’d rather keep to myself 🙂
I just read an item form Mike Hoskins “DMine” about his A1C. It is a great article, check it out. Mike is one of the most informed diabetes journalists, yet his A1C is about like yours. My A1C has been so high and so low it is amazing, but I think we lower our A1C when we move from management to second nature.
Hang in buddy, you will get there and besides, take heart, this A1C is not as bad as it might seem.
Thanks Rick. I will be sure to check it out.
Hey Frank, I think you are doing such an amazing job with your A1c and sharing with all of us how its all going…every post gives me insight and courage and helps me to accept my ups and downs more…
Thanks Rachel 🙂 it means a lot to hear that.
Working Towards a Lower hba1c - Type 1 Writes - Diabetes Blog
[…] August, I learned that my hba1c had gone up after three months on a pump. I was extremely disappointed at the time, but did take solace in the fact that my BGLs are far […]