Unusual suspects : age at diagnosis

A short while ago I was musing about one of the questions which form part of the scope of my little side project. It got me thinking, and in order to have a slim chance of having something to say when the subject eventually comes up for discussion I began to wonder just how old people generally are when they are diagnosed with various types of diabetes.

In the old days, of course, things were much more straightforward - even the conditions themselves were referred in terms of 'juvenile' and 'maturity' onset. But I'm forever coming across folks in forums who were diagnosed with 'type 1' (which is typically thought of as a condition that develops in childhood) well into their autumn years.

There was an obvious answer to satisfy my curiosity - just ask you lot. So I decided to conduct a quick straw poll and asked around the good people of the DOC for their age at diagnosis. Now of course this was not carried out with much, if any scientific rigour - but I find the results fascinating nonetheless.

First off I was absolutely humbled and amazed as ever by people's generosity of spirit in the DOC. Within hours of tweeting, "I'm just curious..." I'd been inundated by responses from people who had never heard of me before and my little tweet was bouncing all over the twitosphere with RT after RT. Facebookers and forum peeps waded in and before you could say, "well I wasn't expecting that" I had over 220 responses. Two hundred. And twenty. Many of the 'proper' research projects I see and read have sample populations in the 10s. People even continued to respond for a short while after I'd gathered the results in from the various places.

While I recognise that I was asking a particularly skewed demographic, I found it interesting that after logging 70 or 80 anonymised responses into a spreadsheet the proportions of people in the different age groups remained almost entirely unchanged right up until that 221st person chipped in. So while I completely accept the limitations of the survey I do wonder whether it isn't that far off the real picture.

So what did I discover?
The first and perhaps most surprising thing I discovered was that members of the DOC are much more likely to be type 1. I'm not absolutely sure why this is - perhaps because the management of type 2 is often downplayed by healthcare professionals and people are (mistakenly) led to believe that type 2 is somehow 'less serious'. People with type 1 it seems are more likely to feel like they are struggling and to seek help and support online. So while in the UK population type 1's make up only 10% of diabetics, in my survey they represent 72% of responses!

Oldest and youngest
Of the type 1's the age at diagnosis ranged from just a few months old right up to 66. Type 2's were similarly stereotype-defying ranging from 17 up to 66 again. The average age for diagnosis with type 1 was 18, while the average age for type 2 diagnosis was 45. I didn't specifically ask the question, but at least a dozen people volunteered the information that they had first been diagnosed as type 2 and later reclassified as type 1 or LADA. The average age for the first diagnosis in this group was 35. It would seem that if you are diagnosed with diabetes in your 30s then you stand the highest chance of your Dr putting a tick in the wrong box, and if the treatment you are receiving isn't working despite your best efforts it might be worth asking for some more tests!

Just the facts ma'am
For those who fancy poring over the numbers/proportions for themselves here are the basic analysis tables that Excel squirted out:

	Type 1	Type 2	Total
Number	158	63	221
Average Dx Age	18	45
Dx uncertainty/change	12
Avg Age at initial Dx if changed	35
By age group	Type 1	Type 2	T1 %	T2 %
<= 17	90	0	57%	0%
18-34	47	7	30%	15%
35-44	14	24	9%	38%
45-64	5	29	3%	38%
65+	2	3	1%	5%

So while, as you might expect, over 50% of T1s are diagnosed by the age of 18, almost half of them aren't. Coupled with which the number of people diagnosed with type 2 in their 20s - early 30s is a pretty meagre 15%, with the several of those being later reclassified). One T1 respondent mentioned that at 18 they were told they were 'too old' to be type 1. For another this happened in their mid-20s.

It would seem that getting diagnosed at an unusual age is, well... er... not that unusual.

Family support for T2s

Way back when this blog was just beginning Jane wrote about the lack of support offered to families and partners of adult diabetics. Quite rightly there seems to be support available for parents of children with diabetes, but for those diagnosed in adulthood there seems little in place in terms of help and education unless partners, spouses or carers are able to push their way into appointments with the patient.

It seems that bastion of high street chemistry Boots is trying to change that, at least for the families of people living with type 2 diabetes. Research undertaken by Boots and supported by, among others, Dr Katharine Barnard, Health Psychologist and Senior Research Fellow at the University of Southampton suggests that families could be pivotal in supporting and motivating someone with type 2 diabetes, who at the very least should have access to good information about how their diabetes is treated and what sort of checks they should be receiving.

With 80% of the NHS’s 9.8 billion annual UK diabetes bill being spent on treating complications*, mobilising the wealth of latent support represented by these willing family members could prove a powerful weapon in better management of Type 2 Diabetes and in improving lives. Eight in 10 (81%) family members say they’d use extra support if it were available which is why Boots UK has launched a new Diabetes Information Service that not only provides support for people living with the condition, but also valuable advice and guidance for their families to help them start having better conversations.

* largely preventable

I get a bit nervous when these kinds of organisations start wanting to dish out advice to people with type 2 diabetes. Partly because I see so many people on internet forums who have a terrible time coping with their type 2 based on some of the questionable advice they get from their healthcare professionals! There was also a fairly disastrous campaign by Lloyds recently which provoked quite a lot of disquiet among diabetics by failing (as is often the case) to properly differentiate between types of diabetes.

I really hope this initiative goes well. A family which understands the crucial role carbohydrates play in the management of type 2 diabetes is less likely to say, "Oh surely that won't matter?". A family that understands how difficult type 2 can be to control is less likely to think, "It's only diabetes, just take a tablet and carry on as before". A family which all eats the same diet together make it easier for the person with diabetes to stay on the wagon. A family that understands the potential consequences of poor control will be better at motivating their loved through the dark days.

I haven't had a chance to see the Diabetes Information Pack, and have only briefly looked at the the information on the Boots WebMD website. Thankfully I didn't see much evidence of the usual "people with type 2 diabetes must eat lots of starchy carbs" nonsense, but I can't guarantee it isn't there lurking in the shadows so be wary. Encouragingly they also suggested that self-testing is important in the management of everyone with diabetes (well they do sell the equipment after all). If only we could get GPs around the country to feel the same way.

If you have a family member with type 2 diabetes how able do you feel to offer support? Comments please!

Disclosure: I was sent 'press release' information about Boots new Diabetes Information Service, but was not paid to write this post (I wish!)

Owning your targets

I replied to a forum thread today, and only as I was posting did it strike me that I've completely changed the way I view my blood glucose target range in the last year or so. A mother with a teenage type 1 diabetic daughter was expressing concern about the extra fingerstick blood glucose tests, basal testing etc that would be part and parcel of her move to pump therapy. She then said she had to text to remind her daughter to do a test, and text back the results. It made me wonder how that felt for a young person. Whether they would feel that the tests were for them at all.

And then I realised that was exactly how I had felt about these things too.

The recommended levels for adults with type 1 diabetes in the UK are 4-7 mmol/L (72-126mg/dl) before meals and less than 9mmol/L (162mg/dl) by two hours after meals. This is, frankly, a tiny target to try to hit. To be honest the permitted percentage of inaccuracy on a BG meter is 10%. So the meter itself is only accurate to one sixth of the target range some of the time. I've had 20-odd years of consultants telling me that I was 'doing fine', but 'should try to have not quite so many highs and avoid those lows'. I've always just smiled through gritted teeth at such comments. "There speaks a person" I would say to myself, "who has never tried to guestimate the carb load and absorption rate of a meal, and tried to match it precisely with the activity profile of an insulin injection, taking into account any abnormal activity level during the day." If they wanted me to hit their stupid target, they should have made the darned thing a bit bigger.

In a small, but incredibly crucial way though, my mindset has changed. The shift was so slight I only noticed it when trying to look at the same issue from someone else's point of view. The range, is still as tiny, but it is now my range. Whereas before I would grumpily think, "well that's just impossible... I'll aim for 4-10, but for you to ask me to do any more than that is just unreasonable" I now see 4-9 as my target for me.

I've never tested so much in all my 20 years with diabetes as I have over the last 14 months. I've never voluntarily gone without so many meals to check on my basal insulin's activity. In all likelihood I would not be doing so without meeting other diabetics online. Diabetics who hit their own tiny target ranges. Not every day, but often enough to prove that it is at least possible.

Once you understand that the target (whatever you decide that it is) is your own, all the effort required to aim for it, and let's not pretend that is isn't a LOT of effort, somehow becomes much easier.



Edit: Just re-visiting this post after several years and I have realised that in the time in between I have altered and changed my targets on more than one occasion. And this is fine too. Currently I'm finding 4-10 gives me less opportunity to berate myself over high readings with an additional soft lower limit of 5 which I will treat as if low to give myself a little more wiggle room. What's important is that I feel these are what I have decided to do for me. Not some impossible nonsense handed down from on high.