New diagnosis- 2 days ago- type 1 at 51yo male

[robketts]

Where to start...I have been on insulin for 2 days and my bg seems to be all over the place...averaging 14mmols...is this normal at first?

 

[Mike d]

Highly unusual to be a Type 1 at your age? Are you sure?

 

[robketts]

Yes..that is what I have been told..it came on pretty quickly. Drinking lots of water after Christmas. Raging thirst! Did urine and blood samples and it was explained it was more common in under 40s but said type1..

 

[robketts]

It has happened very quickly from going to the doctors on Thursday..urine taken..phone call at work from doctors later that day telling me to go to the diabetes centre...they seemed very sure..I wish they weren't tho thanks for replying as I am quite worried...

 

[Mike d]

You're in (what I'd label) the very rare category, expressed as a percentage of all with the condition. You should be concerned (natural response) at least initially (I'm a Type 2) but there's quite a few T1s here and you'll get advice; guarantee it. Be good. Mike

 

[Antje77]

There is no age attached to getting T1, it's only that more often than not in adults it comes on a bit slower.

averaging 14mmols...is this normal at first?

Yes, very much normal. With insulin, the only way to find out the correct dose for you is by trial and error, it's not like 'blood glucose is this high so you need this much insulin', and neither does it go by weight.

Some people manage on less than 10 units per day, others need 200. So you can imagine erring to the side of caution is preferable at the start; trying to eat away multiple times the dose you need is very hard (as anyone who ever mixed up their long and short acting insulins knows. Try not to repeat that particular mistake, it's no fun.).

Give yourself time to learn, there's a lot to take in but it will get better!
A great help for me in the beginning was keeping a log of food, insulin doses and blood glucose before and after food, a great help in finding out how much insulin covered what kind of food. If you decide to keep a log you can take it to your diabetes nurse at your next appointment and it will help the both of you with tweaking your dosages.

Good luck, and please come back with all your questions!

 

[EllieM]

Where to start...I have been on insulin for 2 days and my bg seems to be all over the place...averaging 14mmols...is this normal at first?

There are some reports that organs (eg eyes) can be damaged by too fast a reduction in blood sugars. Combine this with the fact that they don't want to overdose you and they tend to lower your blood sugar down to normal over a week or so (or longer? I don't really know as I was diagnosed preglucometers). The real risk to your health is diabetic ketoacidosis which happens when you have persistent high blood sugars combined with too low insulin levels. Now they've identified you as T1 and started insulin that is unlikely to happen. (Did they give you a meter which tests for ketones? T1s are typically at risk for this if they either skip their insulin or have increased insulin needs due to illness.)

Good luck.

 

[robketts]

Thanks @Antje77 your reply is so reassuring! I have an appointment with my diabetes nurse on Tuesday..I am checking my bg and ketones with a machine...the process of testing and injection is fine with me...but the disappointment of getting high readings is hard..but now I know its trial error I feel better...I am making changes now..I was active...but am going to do exercise most days and cut more sugars out as well...no birthday cake yesterday as it was my birthday

There is no age attached to getting T1, it's only that more often than not in adults it comes on a bit slower.

Yes, very much normal. With insulin, the only way to find out the correct dose for you is by trial and error, it's not like 'blood glucose is this high so you need this much insulin', and neither does it go by weight.

Some people manage on less than 10 units per day, others need 200. So you can imagine erring to the side of caution is preferable at the start; trying to eat away multiple times the dose you need is very hard (as anyone who ever mixed up their long and short acting insulins knows. Try not to repeat that particular mistake, it's no fun.).

Give yourself time to learn, there's a lot to take in but it will get better!
A great help for me in the beginning was keeping a log of food, insulin doses and blood glucose before and after food, a great help in finding out how much insulin covered what kind of food. If you decide to keep a log you can take it to your diabetes nurse at your next appointment and it will help the both of you with tweaking your dosages.

Good luck, and please come back with all your questions!

 

[robketts]

Thanks @EllieM ..loving this forum..really helpful

There are some reports that organs (eg eyes) can be damaged by too fast a reduction in blood sugars. Combine this with the fact that they don't want to overdose you and they tend to lower your blood sugar down to normal over a week or so (or longer? I don't really know as I was diagnosed preglucometers). The real risk to your health is diabetic ketoacidosis which happens when you have persistent high blood sugars combined with too low insulin levels. Now they've identified you as T1 and started insulin that is unlikely to happen. (Did they give you a meter which tests for ketones? T1s are typically at risk for this if they either skip their insulin or have increased insulin needs due to illness.)

Good luck.

 

[urbanracer]

Where to start...I have been on insulin for 2 days and my bg seems to be all over the place...averaging 14mmols...is this normal at first?

It was 2 weeks before my 54th birthday when I got the news and it's more common than the statistics suggest.

Going by my experiences you can expect a bit of yoyo-ing until some stability is reached. Let it take it's time and don't try to rush it whatever the temptation. For me it took about 11 to 12 weeks.

You might feel pretty lousy for a few weeks too as your glucose levels come down. This is also normal as you need to get used to the lower levels.

 

[jackois]

Hi there, I was diagnosed at 59, six years ago.

I found, in the early weeks, that being boring and sticking with the same meals for the first few weeks allowed me to start working out whether my insulin use was staying steady or not. Weighing ingredients and keeping good records of blood sugar, food intake, exercise and so on allowed me to see trends developing. After that, I started adding different foods and developing an understanding how I reacted to them.

Beware also, the honeymoon phase. As the insulin you are taking relieves the strain on your pancreas, it may start to make it's own in spits and spurts. In the first few months I was never further than 6 feet from jelly babies which I use as a hypo aid.

Other than being methodical, the most helpful health professionals I saw was a nutritionist, who helped me understand the way carbs work, slow release, good carbs, etc.

Like me, hopefully in a few months, it will all be routine and you'll wonder what the fuss was about.

Good luck with it all.

 

[Antje77]

no birthday cake yesterday as it was my birthday

Happy belated birthday! Hope you still managed to enjoy it, despite no cake and your head overflowing with this new diabetes stuff!
Next birthday you can have cake again and dose for it, promise!
It may be that you'll choose to have a smaller piece of cake because it's easier to dose for, but cake nevertheless

 

[KK123]

Hi there @robketts , just wanted to add it's not that rare at all. I think that in the good old days they categorised any type 1 over 18 as 'type 2 on insulin' because they assumed only children could get type 1. Now with less ignorance about, they are correctly diagnosing people of all ages as type 1 (a slower form, ie LADA) rather than basing it on a lack of understanding of the conditions which you will notice exists even in this forum, I was 56. Take it slowly, it does take a long time for your levels to lower and stabilise. x

 

[robketts]

Hi everyone...thanks for all the really helpful replies..it is very reassuring that I am not the only 50 plus to get diagnosed..talking to people on here will help me enormously

 

[JAT1]

I was diagnosed Type 1 at 63 and I've read of others here who were older still.

 

[Antje77]

39 at diagnosis, so not over 50 but maybe it counts as well...

 

[Circuspony]

I was 43. They'll bring your blood glucose levels down slowly because it's safer for your organs. You may well find your vision goes "off" don't rush out to buy new glasses it'll take time to go back to normal - i got a lot of dispoable contact lenses in different prescriptions.

The older patients tend to have extended honeymoons and this can make for some real rollercoaster rides with BG at times

 

[Japes]

Definitely another over 50 here. Initial T2 diagnosis at 50, changed to LADA just before I turned 53.

 

[Marie 2]

Lol I was 46 and then misdiagnosed for over 8 years. As a type 1/LADA we still make some insulin for a while, lots of times for years. 50% of type 1's are diagnosed after the age of 30.

And all of us can vary how we respond to food, exercise, stress, hot showers. So yes, they give you a basic starting point and then you start learning from there what doses you need and when. Start carb counting as in the long run that will give you more freedom in what you eat and what your numbers end up at. You will want to dose per what you eat, because 20 carbs nets a far different blood sugar than 60 carbs. They just try to break you in slowly as it's a big learning curve at the beginning.

 

[JPW1]

Diagnosed T2 supposedly at 42....now probably T1/LADA at 49! Took me about 3 weeks to see normal blood sugar levels after I started insulin, now it's great (most of the time!!!). All the above is what I'm doing - follow this advice and it'll all come together, but you'll have wobbles and highs and lows now and again no matter what you do.