Anyone else think their HbA1C doesn’t match their glucose averages?

Even if you test 10 times a day on a regular blood glucose meter, there are not enough measurements to make a case that your measured HbA1C might be wrong.

I now have 22,074 Dexcom G4 CGM readings over the last 3 months, and it’s been pretty accurate against my meter. That’s one measurement every 5 minutes!

My CGM average for that time, according to the upload at Diasend, is 6.7 mmol/L. That tells me I should have an A1c of around 5.8% or 5.9%, at worst, 6%, if I’m being conservative.

I just wanted one single A1C under 6% in my life to prove I could do it with only a couple of mild hypos a week, if that! But that’s another story.

So what comes back today from QML labs? HbA1C is 6.2%!

That’s quite a difference, don’t you think?

In the past I’ve had high haemoglobin and my endo would adjust my A1C down, but my haemoglobin was getting better and within normal range. I’m now kicking myself that I didn’t get haemoglobin tested at the same time. Still, what a difference!

So now I have to ask… how accurate is the A1C test? How different is the result between different labs?

There are lots of sites to convert average blood glucose to A1C, like here: http://www.diabetes.co.uk/hba1c-to-blood-sugar-level-converter.html … look further down that web page for the conversion from average blood glucose in mmol/L to HbA1C.

That site says my HbA1C would be 5.8%. So why was the lab result so much higher?

How interesting… look at the post by sugar2 here:http://www.diabetes.co.uk/diabetes-forum/viewtopic.php?f=15&t=20432. She says that she got an A1C at two different labs on the same day, two hours apart, and they came out different – 7.4 and 7.1. Maybe I’ve answered my own question. Labs really are different.

My standard deviation isn’t much over the three months, so it shouldn’t make much difference. Besides I have thousands of CGM readings. I seem to recall reading something about people being high or low glycators and that can make a difference to A1C.

There you go… found the research:

High and low hemoglobin glycation phenotypes in type 1 diabetes: a challenge for interpretation of glycemic control:  http://www.ncbi.nlm.nih.gov/pubmed/12200073

“…29% of the patients had HbA1c levels that were statistically significantly higher or lower than predicted by the regression equation. The observed individual differences in the relationship between MBG [MBG = mean blood glucose] and HbA1c were not related to erythrocyte age and there was no evidence of analytical artefact. We interpret these results as possible evidence of high and low haemoglobin glycation phenotypes within the population. We conclude that MBG and HbA1c are not necessarily interchangeable estimates of glycemic control and that haemoglobin glycation phenotype may be important for the clinical assessment of diabetic patients.” (Spelling corrected for UK/Australia.)

From what I can tell, high haemoglobin wasn’t an issue in the research, where I assume people had normal haemoglobin. It was more a phenotype distinction, or rather conclusion.

I’ve heard the terms “high glycator” and “low glycator” bandied about, but I wasn’t aware that it was because of phenotype rather than higher than normal haemoglobin values, which if high, would add to the inaccuracy, according to my endo and others.

I’m going to assume that I’m a high glycator, considering the differences between the lab result and the calculated result.

That would mean, if the research paper above was correct, that 29% of us don’t get an accurate A1C! Freaky considering our lives are judged by it.

Think about it! If someone was tested and got an HbA1C of 7.4%, their diabetes team would tell them they have to improve to get under 7%. Yet if they wore a CGM like me, and had tens of thousands of measurements and they were really 6.8%, they’d be congratulated on a great HbA1C.

HbA1C results seem to be taken as fact, when indeed there are extenuating circumstances that can’t be seen. At the other end of the scale, Anaemia will make your HbA1C lower, and so will being a low glycator, which is genetic. Blood disorders that have an effect on haemoglobin do matter, and so does your glycation phenotype.

I’ll take the average between the lab measurement and the A1C/CGM average worked out by formula. Far as I’m concerned I got my A1C under 6… I’ll even take a 5.9999%. I reckon that’s fair, don’t you?

(I welcome any corrections to the conclusions I’ve come to in this post. I’m not a doctor and there are others far more qualified to more properly interpret.)
 

Despite being mostly low-carb before, I’ve lost about 7 kg since November, essentially without trying… more by default.

For the weight loss, all I’ve done is gone gluten free (and not buying much gluten-free processed stuff) and mostly dairy free (although I can eat some hard cheese now).

I eat about 80-90% fresh, mostly raw food, and I’ve still had some sweet stuff here and there – bliss balls and raw-food “cakes”. I also eat meat, fish and eggs, the odd piece of gluten-free, low-carb bread or corn crackers, and I don’t worry about fat unless it’s hydrogenated, which I stay away from as much as possible. All other fats are fair game.

My total average carb intake per day (68 grams/day), over 3 months, is just a few grams less than it was at the same time last year, and I couldn’t lose an ounce for the last 20 years!

The real kicker, and one point point of this post, is that my A1c, a 3 month “blood glucose” average, has come down even more since back in February when I was 6.3%. I thought that was pretty darn good with only 1 month on a CGM. Going by my Dexcom G4 CGM averages to now, I’m amazed!

I’d like to show you something – just one box of a 90 day compilation of what having a CGM since January has done for me…

If you look at the CGM Average of 6.7 mmol/L (121 mg.dl) with 21,776 readings over 90 days, it’s a good indication of what my A1C would be – something under 6%.

There’s been some discussion about A1Cs on an international Facebook diabetes group for people with LADA Type 1 Diabetes. Lots of endocrinologists don’t like Type 1s to go under 6%. While my endo would disagree that under 6.5% is better than between 6.5% and 7% in terms of reducing long-term complications, I’ve read studies that say it definitely is better. I’ve read that the risk of microvascular complications begins to increase at an A1C level of 6.5% as do other complications.

Look at this chart from http://www.a1cnow.com/asset/images/chart-professional-about-a1c-risk.aspx.

While this chart seems to show not a heap of difference between 6% and 7%, there’s still some difference. I also don’t know how old that chart is or where the data has come from. Other research I’ve read makes a bigger deal of the under 6.5% thing.

The issue is how, with Type 1 Diabetes, one gets to under 6.5%. And please note that I’m only talking about adults, not kids. There seems to be a general assumption with some diabetes professionals that you can only get under 6% or even under 6.5.% by having lots of hypos – and that can not only undesirable, but if low enough, can be dangerous. Agreed!

Much as Bernstein and his diet was my saviour from DKA many years ago, I don’t have to, and don’t want to restrict myself to 30g of carbs per day. But the question he poses is still valid – why can’t people with diabetes have normal or near normal A1Cs? I’ll settle for more normal than “under 7%”.

There was a long time many of us couldn’t achieve good A1Cs unless we were either creatures of habit, eating the same thing every day and adjusting insulin doses and timing until we got it exactly right, or eating very low carb per Bernstein, and/or doing tons of exercise. And I’m sure others got there by doing other things. But the lows usually lurked and hit the lower the A1C.

Worse is that if you are hypo-unaware (don’t feel any symptoms of being low) they hang around until you test, and the danger is you can keep going lower. Everyone has a different threshold at which they start to feel they are going low. For me it’s not until I get to 3.2 mmol/L (58 mg/dl) – well into a hypo.

We now have some fantastic tools available to treat diabetes – more and more sophisticated insulin pumps and ever more accurate CGMs without any lag. Unfortunately, they’re still expensive, and out of the reach of many. I’m all for being a socialist in this respect. Health shouldn’t be just for those who can afford it. Governments and Australian Private Health Insurers (PHIs), take note!. Yes, I’m a dreamer!

Dr Michio Kaku, a Theoretical Physicist, has a published a book called: Physics of the Future: How Science Will Shape Human destiny and Our Daily Lives by the Year 2100. Yes, it’s a mouthful and as interesting as it sounds to read (well, to me anyway)! I think he’s a much better writer than a speaker, but I digress.

Dr Kaku proposes that microchips are slowly moving towards costing a penny each to produce. That in itself, will revolutionise the way we live. By default, I propose it will also revolutionise the technology we use to manage diabetes. It’s driven by microchips and clever programming. The more affordable the technology, the more people will buy it, and then it becomes even more affordable, while also becoming not only more sophisticated, but smaller.

Drug companies producing exogenous insulin also need to keep up by producing insulins that have a more effective action and faster onset.

I’m assuming that by 2100, we’ll have a cure for diabetes – maybe not in my lifetime, but there’s always hope for the future. In the meantime, I’d like to be the poster child for how much the Dexcom G4 CGM has helped to bring my A1C down. It’s probably further down than my endo would like, but I’d like to remind him that I currently have the tools at my disposal like never before, to very safely bring my A1C further down than I could ever get it without these tools. And it’s possible without lots of lows, and definitely nothing even approaching a ‘dangerous’ low. In fact, I only have a couple of very mild lows a week (often with unexpected activity), and in 90 days, only 1 low below 3 mmol/L, at 2.4 mmol/L, when I missed the first two alarms/pump vibration alerts because I was active and in a noisy place.

It’s so much safer and easier these days for people with Type 1 Diabetes to have an A1C under 6.5%, and even under 6% if you so desire (and still have a life), if you have the right tools and know how to use them to your advantage. And yes, I’m still learning! It’s even easier for people to have an “approved” A1C between 6.5 & 7% with these tools – all with no dangerous lows because a CGM will warn you the moment you go under your safe-limit, and you can take action right away.

It’s not as if we don’t have enough diet restrictions with diabetes, but add Celiac into the mix and you have a minefield.

True, if you have insulin, technically you should be able to eat anything. But that’s not necessarily the case for many people. Load up your body with a ton of simple carbs, including sweets, fruit and more, and you may well have a hard time keeping your blood glucose from spiking. It’s these spikes that contribute to long-term complications – whether they are from food, or from leaving your blood glucose higher than the normal range. Avoiding these spikes (and they can’t all be avoided by any stretch) is a game many choose to play.

Exogenous insulin (the stuff that comes from a pharmacy) just doesn’t work the same yet as endogenous insulin (the stuff your beta cells produce). Closest yet is by using an insulin pump with a continuous glucose monitor (CGM), but that still doesn’t work anywhere near as well as your own insulin. If I want to keep my blood glucose within a certain range, there are lots of things I can do to achieve that, or close to that.

People with Type 2 Diabetes, depending on what stage they are at – diet, diet and pills, diet and insulin – often have an even harder time with the whole thing, especially when they are encouraged to eat lots of so-called ‘healthy’ carbs.

When you add Celiac (ridiculously spelled “Coeliac” here in Australia) to the mix, especially at my age, food-life gets much more difficult, and downright annoying.

One of the major things I do is to keep the carbs down and keep the size of the meal something quite a bit less than giant proportions. I do best with a meal of 15-30 grams of carbs, and that’s just for dinner. If it fits on a bread and butter plate, even better. Breakfast and lunch is usually less. You have a far better chance of digesting a smaller meal in a reasonable time to coincide with peak insulin, and less chance of blood glucose spikes by keeping the carbs down.

But I’m no saint, and don’t pretend to be. I like cake, ice cream and chocolate as much as the next person. Because of that, I’m sure my HbA1c is in the low 6s and not in the 5s. So be it. Even with Celiac, I still indulge a little with my raw-food chocolate and nut Bliss Balls (I will post the recipe one of these days, when I actually remember to measure the ingredients).

Very often when you are first diagnosed with Celiac, you are also lactose intolerant for a time. I didn’t escape that. Any dairy at the moment sends my belly into a frenzy. How much time you stay lactose intolerant may depend on how well your gut heals. For some people that can take 6 months to 2 years. For some, an indeterminate amount of time (read: never happens).

I also have a problem with the yolks of hard cooked eggs – a new problem that started about 5 years ago. People think I’m nuts when I ask them how long they cooked the hard boiled egg they’re offering. It really makes a difference to me. There are nearly as many intolerances with gluten sensitive and Celiac as there are people with the problem.

I went to a Passover Seder last night. Apart from not being able to eat the Matzoh (wheat) and I couldn’t find any gluten-free matzoh locally, traditionally a hard boiled egg dipped in salt water is eaten as part of the meal. I took one look at the yolk and knew it had been boiled far longer than necessary. I couldn’t eat it.

I was lucky in another way at the Seder – it was a super religious Seder (not that I’m at all religious, I just like the tradition) and that means no grains at all in any of the cooking, no spices other than salt and pepper and so on. I made my way through very small portions of several courses, hopefully without problems. I can’t tell yet whether I escaped completely unscathed because it’s only the next morning, and a reaction can take longer. So far, so good.

My dietician advised me not to think I can’t eat many dishes, but instead to see how I could adapt recipes to gluten free and dairy free. Psychologically that’s a bit easier to take. Practically, that’s whole different kettle of fish (partial pun intended).

An entire adult life of cooking and entertaining has gone out the window for me. Hmmm – adapting recipes. Seriously? I have to make chocolate mousse with avocado? It’s taken me 3 months to even get used to the idea. I haven’t tried it yet. Don’t have the heart to.

Maybe the more time that passes, the more I’ll forget what real, rich, dark chocolate mousse tastes like. I dare say I could make my old version with no cream – I only used to add a very small amount of cream in my recipe. Maybe it’s do-able. On the other hand, making what is loosely termed as “cheesecake” with raw cashews and avocado? I won’t tell you what I think of that! But yes, other recipes can be adapted but many have to be completely forgotten because no adaptation works.

Not that I was a huge grain eater before, but some yes, and I did have lots of dairy. What I want is for my gut to heal and to keep my blood glucose within a good range most of the time. I’d have been better off being a juggling artist in a circus, with tightrope walking on the side.

The thing is… there is mounting evidence in the Celiac and general gluten sensitivity world that just going traditionally gluten-free isn’t enough. People are not healing like they’re supposed to. For example, some studies are showing related gluten-like prolamins in corn elicit an autoimmune response too. See here for one such study. Likewise many are sensitive to soy and other grains, as well as legumes. The ingestion of any of these may not allow the gut to heal properly, and may also give you symptoms indicating something is still wrong on a traditional gluten-free diet.

There’s an article that really opened my eyes when I wondered why I had such a huge reaction to some tuna and one brand of commercial mayo (made with eggs and soybean oil), the only thing I’d eaten that day. And on another day, the same thing. That was a big WTF at the time!

The problem with a traditional gluten-free diet is twofold… maybe even manyfold.

The amount of gluten-free products out there is increasing every day. You’d think that’s a good thing for people with Celiac and non-Celiac gluten sensitivity, right? Not necessarily so. Despite the fact that most mainstream doctors would laugh their heads off at the mention of “leaky gut” – they’d say there’s no such thing, and so would I have for the last 25 years, since I first heard of it. Now I’m not so sure. Call it “leaky gut” or call it something else, there’s still a problem!

The first part of what I think is a twofold problem is a claim (several, in fact by some traditional doctors and specialists) that a traditional gluten-free diet doesn’t always heal your gut. This evidence-based article explains why. There are also several videos and articles by Dr Peter Osborne and other gastroenterologists that claim the same thing.

Check out some of the Glutenology videos on YouTube. I particularly like this one:

The second part of the problem is this article, which explains why eating off-the-shelf gluten-free products isn’t such a good idea.

Gosh, so all that that means I can eat even less variety? So be it. In reality, no grains is probably better, and no corn, soy or other legumes, and for me, no dairy. Kinda makes me stay at the butcher and then at the greengrocers. No, I don’t buy supermarket fruit and vegetables if possible, but that’s another story.

There are two quite well-known diets out there that address the problem of gluten and traditional gluten-free diets. The first is The Specific Carbohydrate Diet (SCD) and the second is the GAPS diet. Both address the issue of additional toxins that prevent the gut from healing properly. If you are also lactose intolerant (whether temporarily or permanently), then obviously leave out anything dairy.

If you are perplexed about still getting reactions on a traditional gluten-free diet, or your second biopsy has shown that you’ve not healed properly, or if you just want to make sure you are eating in the most healing way if you have a gluten problem of any kind, have a look at the articles mentioned and especially both of the diets. I’m more inclined towards the SCD, but that’s a personal preference. I don’t follow it to the letter – yes I do eat some rice about once a fortnight, and I will have some traditional hummus and so on, but even the slightest of symptoms sends me back to SCD, without the approved yoghurt. It works for me. I may yet transition into full SCD.