hba1c

First hba1c Result Post-Pump

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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.

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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.

Diabetes Game Plan: 2016 Edition

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New year, new me.

Kidding! Don’t even get me started on those Facebook statuses…

Ever since I’ve had diabetes, my New Year’s resolution has obviously centred around (wait for it) diabetes. Eat well, get my blood sugar levels down, maintain a good hba1c result without too many hypos and exercise. Scrap that last one, who the hell am I kidding here!

If I’m being honest here, I feel that for the better part of the last five years, my diabetes management has sort of stayed the same. I’ve chalked up good hba1c results, but they’re extremely difficult to sustain inbetween endo visits. Making a dedicated effort that delivers those sustained results is also hard, especially when there are a million other things going on in life.

But I want to do better than okay with my diabetes. I’ve already been at it for five, going on six years. That fraction of my life with diabetes is slowly, but surely growing. I want to look after myself. I want to minimise my risk of future complications. I want to remain hypo aware. I want to remain independent, and in control of my diabetes. I want to live a long, and healthy life.

So instead of that overall improvement this year, I’m going to strive for stable overnight glucose levels.

Night times over the past few months have never been such hard work. I can’t remember the last night where I didn’t have to wake up at 1am, test and give a correction shot. My last full night’s sleep seems like a lifetime ago. And mornings where I have woken up in range without minimal effort overnight have been rare occurrences.

I also know that it’s been a long time since I’ve had a full, uninterrupted night’s sleep. It’s been a long time since I’ve woken up feeling refreshed. It’s been a long time since I’ve woken up feeling pleased with my morning number, and have that sentiment echo positively throughout my day.

So, perhaps this is an argument in favour of switching to the pump. However, until that decision is made next month, I still need to manage with Multiple Daily Injections.

So, in 2016, I’m making a resolution to focus on the back end of the day. Say, from 4pm to 10pm – the 6 hour window before I go to sleep for the night. In these 6 hours, I will focus on doing as much as I can to not spoil my overnight glucose levels. Staying away from high fat foods. Satisfying my desire to graze on junk food with something healthy. Being patient when testing and correcting after dinner.

I know that I can do this.

I hope that I will eventually return to a point where I have some confidence that my overnight glucose levels will remain stable.

I hope that I will be able to return to a point of getting a full, uninterrupted night’s sleep more often.

I hope that if I can get those overnight levels within range, I will have one third of a stellar a1c result up my sleeve and a lot more enthusiasm in my mornings.

Be Realistic, But Don’t Settle for Satisfactory

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How do you feel about a hba1c target of 6.5%? Chatter among the #DOC this week has been circling the new NICE (National Institute for Health and Care Excellence) guidelines for people with diabetes in the UK. I initially felt quite reactive to this like many others on social media, however some rational thinking has softened my view.

In Australia, I’ve always been told that I should strive for a hba1c of between 6 and 7%. That hasn’t changed in the 5 years that I’ve lived with diabetes. During that time, my hba1c has plummeted due to frequent hypoglycemia, it has gone up due to burnouts and it’s also fallen within the satisfactory range. And I can tell you from experience that a satisfactory hba1c level is extremely difficult to maintain while trying to live an active and ever changing life.

My main concern about this suggested target is that each and every person with diabetes is different. And we all have our own unique circumstances surrounding our diabetes. There are children, teenagers and adults living with diabetes. Some of us are newly diagnosed, while others have been living with it for several years. Some of us have a parent or carer to help us manage diabetes, while others do it on their own. Some of us are content with where we are at, while others are fine tuning and making room for improvement.

So, in that respect, a stock standard number for the masses is certainly not a one size fits all approach. That number will be easily achieveable for some, and completely unrealistic for others. That number is going to set some up for success after success, and others up for repeated failure. And while a number is a great means of motivation and goal setting, it isn’t always a true reflection of the hard work and effort we’ve put in to managing our diabetes.

On the other side of the argument, Mike at Everyday Ups and Downs points out that the lower target is a way of encouraging us not to settle for something satisfactory. I’ve been really excited at seeing borderline acceptable hba1c levels in the past, only to be told by doctor’s that it should be lower. My response at the time was more than dismissive, but looking back at it today, I finally get it. I should strive for a lower number if it’s a realistic goal for me, as it will further reduce my risk of complications in the future.

Mike also suggests the 6.5% target is a way of making doctors more comfortable with seeing lower hba1c numbers in patients. It’s news to me, but apparently some non-hypoglycemic patients are told that their hba1c levels are too low. Crazy!

So, what do I think of all of this? Don’t pay too much attention to what’s in the media or to others. Set your own goals that cater to you and your diabetes situation. Make them realistic. Have a team of people around to cheer you along. Take some time to relish an achievement, and then move the goalpost a little further back. And remember that nothing is impossible if you put your mind to it.

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Building Trust With My Endocrinologist

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I have struggled to place my trust in endocrinologists over the years. Trust that I can comfortably pour my heart and complete honesty on the table. Trust that I’ll receive total support and complete understanding in return. Trust that any and every judgement will be reserved. And trust that I won’t walk out feeling fragile and disheartened once again (you can read about that here).

Because trust might mean admitting that I had hypos every day last week. Trust might mean confessing to eating a massive dinner on Thursday and then having high blood sugar levels for the rest of the night. And trust might mean admitting to feeling overwhelmed and frustrated by diabetes at the moment. On some level, I’m scared of what will come next. Will she tell me that my diabetes control is terrible? Will she threaten me with complications? Will she tell me that I need to be locked away in a mental hospital because I can’t deal with it all?

Around two years ago, I was transferred from the ‘young adult’ to the ‘adult’ diabetes clinic at my hospital. I was no longer a newly diagnosed, high priority patient. I felt a great sense of independence, achievement and liberation over my diabetes. And I was finally given an endocrinologist who I could call my diabetes specialist (it was a bit of a russian roulette before). Over time, I’ve become more and more comfortable with her. I’ve been able to place a greater level of my trust in her. And each time I go there, I’ve felt confident in sharing more with her. And Wednesday’s appointment must have been my most successful yet.

First up was my hba1c result. It was a few points higher than last time, but I felt satisfied that it had gone up rather than down. I shared that I’d been having lots of hypos prior to my holiday. I’d become obsessive compulsive in checking my blood sugar levels, and was trying to correct them shortly after eating dinner. The holiday did a perfect job of taking my mind away from obsessive testing, and my blood sugar levels had stabilised nicely in these past few weeks I’ve been back. I’ve just had My Perfect Week!

Next up was insulin doses, and we talked through my lunch. 7.9 before lunch, cheese toastie on Burgen bread with 4 units of insulin, 4.6 after lunch. Perfect. As usual, that dreaded question of how many hypos in a week came up. And as usual, I gave a vague answer that did have some truth. I was having significantly less hypos, and none were happening overnight anymore.

I brought up my recent eye concerns. I told her about my twitch, and that I’d gone and had my diabetic retinopathy scan in the process too. My recent bloodwork came back with good kidney and urine functions and some apparently ‘amazing’ cholesterol levels also.

We went into the exam room, where she had a look at the injection sites on my stomach. I hate this part because I always get really ticklish at the pokes and prods! She couldn’t believe that I used 6mm needles because I am so skinny, and gave me some 4mm needles to try at home.

It felt great to review and talk over everything in there. And as I voiced my issues, I made some realisations about myself that my endo seemed to notice as well. I was a proactive patient. I seemed to be able to identify and stay on top of my issues. I was among the least concerning of her patients. And according to her, this was the best case scenario she could expect from one of her patients.

I definitely walked out of there with a stronger focus and motivation to get me through the next few months. I’m glad I rang for that cancellation and didn’t wait until January. “Don’t test!” my endo jokingly said to me as I walked out of there, a smile on my face.

I Don’t Feel Like I’m Doing Enough

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I’ve been stuck in a rut for a while. My hba1c levels are okay, I guess, but they’re not great either. And they’ve been stuck in that good, but not great phase for a long time. And right now, I just can’t stop thinking about this tweet from last week.

I have a love hate relationship with my doctor. I love how he can quickly dismiss my concerns when I’m not feeling well. But I hate that I don’t feel that anything constructive comes from seeing him. Every single visit usually goes the same way. He’ll tell me that my illness is “just a virus,” send me for a blood test and then tell me “you need to get your sugar levels down.” I’ll nod my head. I might even manage to mumble an “okay.” He’s usually running an hour behind, and I’ll be lucky to get five minutes in there before I’m pushed out the door. I know he’s not a diabetes expert, but it’s not like he even tries to offer any sort of genuine help.

Then there’s the endocrinologist. An endocrinologist appointment really does motivate me to do better with my diabetes. And I can talk to the endo, if its someone I’m comfortable with. But I don’t get to see them as often as I probably need to right now. If I’m lucky, I’ll get to see them twice a year. And if I’m extremely lucky, I’ll get to see the same endo both times. I’m due for an appointment right about now. In fact, I could really use an endocrinologist appointment right about now. And out of the whole six months that my appointment could have been scheduled for, it just had to be in the two weeks that I was on holidays. And now, the earliest I can reschedule for is January. January, for heaven’s sake. Being in the public health system can be so frustrating sometimes. 

And I just can’t stop thinking about that tweet. I think there’s a good reason I wrote it. I need to try harder to find the support I was calling for in that Tweet. It’s well and truly time for me to get back on track. I’ve had my break. Perhaps too long of a break. I’ve had a lot of fun and enjoyed a lot of good food. And now, it’s time for me to hit that reset button that comes after a good break.

Normally, I would have accepted that wait until January for an endocrinologist appointment. Normally, I would make those excuses about work and life and being busy. But today, I’m going to give my Diabetes Clinic a call and see if there are any cancellations that have come up. And I’m going to make more time for diabetes. Because right now, I don’t feel like I’m doing enough. And right now, I want to feel better about myself.