Cheeseburger nightmares

For those of you playing at home, I have been trying to test out the limits of my pancreas to see if I really need the insulin I've been injecting. If you read my last post, you'll see I had just finished a cheeseburger and fries and my BGL had shot up, and I was getting some pretty strong palpitations. Unfortunately, my BGL stayed elevated for 3 hours and those palpitations lasted all night.

The graph above is the last 3 days BGLs, the first spikes was the cheeseburger. You can see my BGL had returned to an *OK* number by morning, though not a normal fasting BGL (the trick is to always aim for NORMAL BGLs... and don't let anyone tell you otherwise!). While a vanilla DE (diabetes educator) would love these numbers (all under 10.0, none dropping very low) I was too happy. Worse than that with each meal I was getting a sudden hit of adrenaline about 10-15 minutes after eating causing very uncomfortable palpitations and a really irritability that bordered on a panic attack.

Not-so-good while it lasted

By the time this morning roll around, I thought I had better jump back on the wagon and get back to a low carb diet and see if that was the cause of my adrenals going mental. I had some scrambled eggs with butter and crème fraîche (oo fancy!) and set off to work. I didnt get palpitations straight away, but about half an hour later I was getting that uncomfortable feeling in my chest. Bugger, time to admit defeat and take some insulin (even though I only got up to about 7.7). I then spent the day wrestling my numbers into line. Tonight I had a family Christmas dinner and had a little wine and cheesecake and other naughty (but nice) treats. I spiked a little (8.8) but did not get the palpitations.

Thoughts

What have I learned? Still nothing conclusive. All I know is that I can't cover even simple low carb meals with my own insulin stores, but that still doesn't prove anything regarding my type 1/2 conundrum. Where to now? Start up on the insulin again *sigh* and wait until after Christmas this hit up my GP to see what tests he can think of. Maybe another glucose tolerance test but this time with c-peptides or insulin levels. I'm not sure. I just want to get a really good picture of what's going on to inform me of my treatment options. I don't want to take metformin unless I need to, just like I don't want to have to take insulin unless necessary.

A day off insulin

I survived! If you read my late night post yesterday, you'd know that I have been frustrated with a lack of answers from my diabetes team. This frustration and curiosity (and being sick of injecting insulin) prompted me to give myself a day off insulin injections. A type 1 diabetic with no beta cell function would quickly find their blood glucose rising, putting them at risk of a potentially life threatening condition (ketoacidosis).

Today's BGLs

The first test was my morning reading (fasting BGL) and I was nicely surprised that it had stayed stable throughout the night. I wanted to give my pancreas a chance to contribute once again, but didn't want to stress it out too much, so stuck with low carb meals today. Breakfast was scrambled eggs, and lunch was BBQ, salad and coleslaw. Neither of these saw a big BGL spike. In the afternoon you can see the effect of a bit of exercise on my BGL (gardening). It wasn't much of a workout, but I felt really washed out after and didn't feel hungry (or very well) so didn't have dinner.

This evening I did some stress walking (also known as last minute Christmas shopping) which went ok, then in solidarity of my wife's pregnancy cravings, I partook of a cheeseburger and medium fries. You can see that it only took an hour to send my BGL up to 9.9 then down to 9.0, and not shown, 9.4 at 2300hrs. Incidentally I got shocking palpitations after eating the Maccas, which was an uncomfortable side effect.

Summing up

From today's numbers, I am producing enough insulin to cover low carb, reasonable meals, though not enough to quickly cover fast acting carbs (bread and potatoes). The question is: what does this mean? My feeling is that I may be closer to a type 2 than type 1, but we'll see.

Next step

I won't take any insulin tonight or tomorrow and will keep a close eye on my BGL. I will change up what I eat tomorrow and include some "HEART HEALTHY WHOLE GRAINS" (you have to say it like that... it's the law). I'm back to work, so I won't let my BGL go too high or else it may make me irritable, and I like to let my patients irritate me without help from a deranged endocrine system. Wish me (and my patients) luck!

Self Experiment 1: no insulin, modified diet

After a week of medical/nurse appointments that haven't given me any further clue as to what type of diabetic I am, I have decided to become a guinea pig and test out what my pancreas can and can't do. From my last post, you'll know that I have a normal level c-peptide alongside a fasting glucose reading. When a c-peptide reading is taken is important as insulin levels would normally fluctuate based on carbohydrates eaten. All my fasting c-peptide has proved is that I have "normal" insulin production when fasting, it has no bearing on if my pancreas can kick into high gear when eating (Phase I insulin response).

So tonight I haven't taken my long acting insulin (my almost-bedtime BGL is 5.7mmol/L). If my pancreas can be bothered, I should be able to maintain roughly the same level until morning. This is the first test. Then, tomorrow, I won't take any bolus insulin before meals and see how my BGLs go. I will still aim to eat a low carbohydrate/high fat regime (it's yummier anyway). My hope is that I have sufficient insulin production capacity to cover tomorrow's meals without me spiking too high after.

The main goal is to remain hydrated. Because I am producing insulin, I am at a lower risk of not taking exogenous insulin, but I'll be keeping a close eye on myself just in case. This is exciting (no needles tomorrow), goodnight all!

90 day diabetic

90 day update

Here is a look at the last 90 days of my glucose readings. You can see the big bounces at the start of the graph while my levels came under control. The one super low reading was an error on my machine but can't be deleted so you'll just have to take my word for it.

Results definitively proven vague

I went back to the endocrinologist at the start of the week and got my latest HbA1C result (the one that is a rough 3mnth average of BGL control). I was able to get mine down to 6.3% (6-7% is considered good diabetic control) considering my initial reading was 12.7% only three months ago, this is a massive difference. 
What was the vague result? Well, I had a c-peptide level taken as well and that came back at a "normal" level. Hmm? What does that mean? I'm glad you asked.

C-Peptide

When the pancreas (my least favourite organ right now) makes insulin, it does some fancy chemistry to fold the preinsulin molecule rapidly and efficiently using the c-peptide molecule. When finished, the preproinsulin molecule splits and the insulin part goes off and does its thing and the c-peptide is left behind to float around in the blood stream for a little while and then gets scavenged by the liver. Sooo... if you have a working pancreas, you will have detectable levels of c-peptide. It's not particularly useful to measure insulin levels as there is no difference between my own insulin and injected insulin.
What does a normal c-peptide level mean for me? Nothing really, it just makes things confusing. I already know I show no signs of type 1 specific autoimmune antibodies (again doesn't always mean much), but type 1 diabetes is typically a disease of beta cell destruction and insulin production cessation. Great news, I'm producing my own insulin, I'm cured... or just type 2... or what? Well, I'm not cured (a bag of Skittles proved that), I may be type 2 or I may be in the type 1 honeymoon (I think I talked about honeymooning in an earlier post... get educated somewhere else). Either way I now have more questions than answers, and an expensive specialist that isn't too interested in finding out. 

Where to now?

Not sure. It's time for self experimenting I guess. I can try oral medication for type 2 and see if that works, I can try stopping insulin and see if that works, I can insist on getting genetic screening to see if I have an in between form of inherited diabetes (MODY),or I can do nothing and see if I wake up and tell you about the weirdest 3 month dream I've just had. 

If you have any better ideas, comment below!

You're handling it very well

"You're handling it very well"

Am I?

I don't really know. If you mean my control is good, then thanks, though it's becoming more apparent that my pancreas is trying to help out still, keeping my levels more steady than they would otherwise be. I don't feel I'm in control, I feel like a mess, a big, conflicted, sugar-free mess (with that nasty after taste too). Everyone seems to have a horror story or a miracle cure. I worked on an amputee ward as a nurse, your horror stories are nothing to what I've seen poor control do. As for miracle cure, I will smile serenely and thank you for that wonderful news.

I thought I was handling it well, but I'm over it. To hell with diabetes and insulin and carbohydrates and med companies and doughnuts and everything else! Screw the injections and the highs and the lows and the cost and the fuzziness and the shakes and the exhaustion.

I have to book an appointment to see the endocrinologist in the next couple of weeks. Maybe I'll feel better when he tells me it was just a dream and to wake up and have some carbs.

This week.

This week's BGL - click to see it big (I think)

This is the graph of the last week's BGLs. I'm pretty happy with them for the most part. Once again, all of the spikes were due to things on my naughty (but nice) list. Finding a balance is still the mental struggle. It's not that I really miss sugar or starch, I just miss not having to think about what I am about to eat. What's worse is the knowledge that I am not counting carbohydrates or needed to yet.

Carbohydrate Counting

The basic principle here is figuring your ratio of carbs to insulin. I say "your ratio" because everyone has different biochemistry that means there isn't a one-size-fits-all formula. Too many carbs for the injected insulin and you've got a high reading, not enough and you may go low. Because my BGL has stabilised nicely (thanks to whatever residual pancreatic function I have left helping out) I can fudge the figures and take some pretty wild guesses with my insulin injections. In the eventual complete demise of my pancreas, I'll be on my own and control will be so much harder (I'm told). This is why I want to be good now, so that I can be better in the future.

I'm rapidly getting over the whole thing. I still haven't quite identified myself as a diabetic yet. I think of myself more as a patient. Luckily I have a good nurse, though his sense of humour is starting to wear thin.

On a side note, I said that I was planning to add exercise to my goal this month. Can we pretend I didn't say that and save the awkwardness for later? Ta. I swear I'll think about doing some push ups next month, maybe...definitely when it states to cool next year.

Going for control

I'm posting my last month's BGL stats, partly to brag, but partly to encourage me to be accountable for my ongoing health.

Each of the spikes usually involved beer, potato or eating out. The high points only go as high as 10.4 (My DE--Diabetes Educator--would say that anything below 10.0mmol/L is acceptable control for a diabetic). 95% of my tests have been on target, I'm really happy with this result. I have not experienced any major lows yet. Of the two lows recorded one was right before a meal that had been delayed by a few hours and the other was an erroneous result, the reading was 3.4 but an immediate retest (and a 2nd confirmation retest on a backup meter) showed me as 4.4.

The one thing I haven't done much of this month is exercise. It's one of the areas of diabetes that I am really unsure about and have been hesitant to try anything new other than the occasional walk. My goal for November (other than growing a moustache) is to add in some more physical activity. Sigh, it's a pity I like being sedentary so very much.

If I keep going with results like these my next HbA1C (glycoslyated haemoglobin... a three monthly average of blood glucose control) should be much better than the first one I had done in September. Stay tuned!

Pancreatic early retirement scheme

By now most people who know me (and anyone who stood next to me long enough to listen) has probably heard my pity party. The last time I blogged I was about to head back to the doctor to be diagnosed as diabetic (or pancreatic cancer). The good news... It's not a toomar. The last than peachy news was confirmation that I have diabetes; considering most of my extended family has type 2, I kind of expected it sometime in my future (I was no specimen of fitness after all). The doctor told me that not only did I have diabetes (a diagnosis I gift wrapped for him) but that I was type 1. Bugger.

For anyone who isn't aware, type 1 is when the pancreas, the clever organ responsible for the production and release of insulin has stopped being so clever and decides that it doesn't want to do its job any more. Unfortunately our bodies have no workers compensation scheme for retired or injured organs so the only way I can now get insulin is via injection 4 times a day. Luckily I've had thousands of patients to practice my superlative injection techniques before taking over care of my most important patient: me.

Now, let's clear something up: Type 1 is NOT a disease of lifestyle. It almost certainly had nothing to do with my love of large Quarter Pounder meals with a coke. It is not very well understood who will or wont get type 1. Genetics have some part to play, but there are also (according to most experts) an external triggering factor, be it viral, traumatic, or stress that switches diabetes on. I could not have prevented type 1 diabetes (so no judgey-judgey looks, I feel *language warning* shit enough already). Type 1 is essentially pancreatic failure, insufficient insulin supply to meet the body's demands. In most cases it is autoimmune in nature, where the body goes a bit haywire and destroys the pancreas. Nice. In about 60% of these people, there are antibody markers that indicate this process of self destruction. I have come up negative to these antibodies. What does that mean? Not much, depending on who you ask. I still need exogenous insulin to keep me alive (dramatic pause), luckily we live in an age of easy access to insulin (before 1922 type 1 diabetics died within 2 years of diagnosis from essentially starvation. Type 1 diabetes is a lifelong disease with no cure, however it can be managed and almost all long term complications avoided.

I have had to quickly brush up on endocrinology 101 and everything I had forgot (never bothered studying) from uni. I saw the diabetes educator, dietician, and endocrinologist to receive my programming. According to them (and Diabetes Australia) their aim for me is to have blood glucose levels (BGLs) into a "healthy" diabetic range, essentially 50% higher than the BGLs of a non-diabetic. Normal BGL is considered 3.9-7.8mmol/L (the low ranges before meals and the upper range after meals). Diabetic ranges are 5-10mmol/L. These soft targets would definitely slow down onset of diabetic complications but not stop them. I feel I deserve normal BGLs, and the ability to grow old and cantankerous with good kidney function, both my feet intact, and no higher risk of heart attack or stroke than my already poor genetics already give me.

To achieve normality, I have chose to make some big lifestyle changes in both diet (now) and exercise (baby steps, people). These changes have let my BGLs return over the last few weeks to the normal range, averaging 5.1mmol/L (a non-diabetic average). Even with these changes, I will still need exogenous insulin for the rest of my life (or until a cure is found), just not such massive amounts as if I was back on the Maccas diet. It's not that I can't have certain foods, it's that I CHOOSE not to eat it because although that cheesecake with a side of chips and gravy looks awesome, my long term priorities have shifted. I want to become a Granddad at some point. I want to be a geriatric driver terrorising the streets of Perth. I don't want to be every horrendous diabetic complication that I have ever nursed.

It's not all bad though. I found out that, more or less, whisky has no direct affect on BGLs. I can live with that. Anyone who wants to toast my long life can join me with a fine single malt (straight or on the rocks if you're feeling weak). Diabetes won't get me, but I'll have to watch the number of toast I make or cirrhosis might!

Questions? Comments?

A bit of a bad week

I hate the way life is not easily separated into neat portions that can be dealt with one at a time. Out of the blue I got a call from the dentist politely reminding me I hadn't been in four years, which I didn't mind, because the same week, I had developed a tooth ache and wanted to get it seen to. Two trips to see him, $1000, and a root canal later I've been told it'll only be two more trips and $1300 (a saving of $700 *apparently*) for a crown and we can go back to ignoring each other for another four years. 

On that note I returned home from the dentist to find a neighbour's dog had gotten into our yard and torn apart my daughter's favourite chicken ("I named her, Daddy, now she's dead.") and mortally wounded MY favourite chicken (Molly the Survivor's luck has finally run out), which I had to watch die of shock a short time later (silver lining, I got to cancel the vet visit which would have cost me big bucks for the same outcome). I know you might think they're only chickens, but they were pets, giving eggs and their own brand of affection. Anyway, all this is messy background info.

I have lost some weight recently. 13 kilos since the start of the year, with 10 of those being lost in the last 4ish months. No effort, no diet. When I thought about it last week I realised that it was weight loss in spite of an increased appetite and insatiable sugar cravings (think Ed from Men in Black). I also noticed that I have not been sleeping very well due to really broken nights rest. I put this down to the kids getting up for drinks/nightmares and the like, but every time I woke, it felt like my bladder was about to burst and I had to dash off to the loo. And I was thirsty. All. The. Time. In the middle of winter I noticed that I was drinking between 3 and 6 litres of fluids, but it was never enough. I woke up in the mornings so dehydrated that it has been hard to blink.

What I would have clearly spotted in a patient, I was unable to see the pattern in me. All these symptoms read like a check list of a health pamphlet: Diabetes. Yep, with a family history that's easier to list who doesn't have it, I realised a root canal and some dead chooks were the lease of my problems. I raced off and picked up a BGL monitor and checked my sugar level about 4 hours after eating: 19.1 (a little higher than a normal reading of between 4-8). Knowing that this may be a one off blip I have checked myself over the last few days and haven't had a reading below 11.

I have now seen a GP to get a 2 hour blood test to confirm what is almost certain. When I go back to the GP tomorrow, I will be told that I have diabetes (or pancreatic cancer, or some other terribly horrific ailment). I don't really know how I feel about this. Given my family history and my "fuller figure" there was always a possibility that I might be at risk, but I thought it was something to look forward to after I hit 40. I have a mixed bag of emotions about the whole thing with feelings like annoyance, guilt, frustration, shame, isolation, and feeling trapped. Above all, I don't like the feeling of being at the start of a journey I wasn't prepared for. 

I know I will be ok and that there is far worse happening to far better than me, but on R U OK? day and the eve of a GP appointment that I do not want to attend, in this instant, I'm not OK, but that's OK. I have such great and loving family, friends, and faith that I know I will be OK, but just for now, that's how I'm feeling.

Pity party over, now to invent a diet whisky.

Fence update

So the neighbour's house is up (walls and roof anyway) and I think to myself, "it's been seven months since they told me it's be a couple of weeks until the fence went up, maybe I should have a chat to the neighbour and find out where we stand." Well, on Friday I see DC (douchecanoe) and comment that the house is looking good (a little lie) and I am really glad that it has gone well for them (a bigger lie). DC says he is really happy and can't wait for it to be finished. Now that the small talk is over, I ask, "So, what's happening with the fence?" he replies, "I had a phone call from the fence guy today and he says 'any day now'"

What a load of excrement! What a coincidence that a tradie has no contact with someone for seven months and then out of the blue calls the morning I confront DC. Also, why the heck would you call just to say that you'd come "any day now"? So I thought I had better call the fence guy and see what any day meant, but more importantly find out if he had actually called DC. Today I call FG (fence guy) and ask what the go was. He tells me that he has not spoken to DC for many months and wouldn't be able to do any sort of fencing for at least two months as he is currently working on a massive contract.

It looks like it's confrontation time. Again.