New and confused

Type 1 and LADA
1

Hi all, i've recently been diagnosed as a type 1 diabetic at the age of 28, and was hoping on some information that may help me as i'm still struggling to get my head around everything. I was diagnosed after experiencing all the usual symptoms (excessive thirst, nightly trips to the bathroom, fatigue)and taken into hospital for the weekend although i got there on my own i didn't collapse or pass out at any stage. On admittance my blood glucose was 24mmol which has got me wondering just how long have i had diabetes for without realising, maybe just putting some symptoms down to a hard days work or a bug. I've seen my Diabetic nurse since being released and she had told me my numbers are fine even suggesting they could be a little higher post meal time but i digress the thing i really would like to know is realistically how long could i have had type one diabetes for without knowing, could i already have some diabetic complications without knowing, and is there any chance i was a type 2 that has become insulin dependent without realising. i apologise if these questions seem silly but i don't see my Doctor for a follow up until the end of April and would really appreciate any and all advice/answers.

Cheers in advance

2

Hey Chops, welcome. I was DX'd in Oct of 2010. At that time I had developed neuropathy and retinopathy (both much improved over the last year). The best I can figure my first symptoms showed up sometime in 1998 or 99.Before my DX in 2010 my last Dr visit was in 1992 for a broken wrist. Was I T2 in the beginning? No idea what my progression was. No way to really know that I am aware of.

You have come to the right place for answers though. Keep at it. Keep learning and be your own best D team member.

3

Hi brownchops, welcome! I was diagnosed Type 1 at the age of 27 about 25 years ago. I was originally mis-diagnosed Type 2 and my endo says it was probably because I was still honeymooning or producing some insulin at the time.

Like you, I had all the classic symptoms of extreme unquenchable thirst, constant urination, major fatigue....just plain awful. I think I rationalized it initially as thinking I was going to the bathroom more because I was drinking lots of fluids, etc.

But the most important thing is that you're getting proper treatment and care now. Have your eyes checked out by an opthamologist who specializes in people with diabetes and keep up with all your doctors visits on a regular basis. That's key.

Take it one day at a time, read lots here and absorb. You're not alone and you can do this! :)

4

In terms of T1 vs. T2 - if you test positive for antibodies, you're definitely a T1. A c-peptide test will also show what level of insulin you're producing. If you're producing none, you're categorized as a T1. T2s generally produce lots of insulin, but are resistant to the insulin they produce. Over time, T2s can lose insulin production due to beta-cell burnout, but my understanding is that this can take a long time.

HOWEVER, this neat categorization of T1 vs. T2 isn't always clear, and there are many, many people who fall with gray areas -- they may not have antibodies, for example, but they don't have any of the other risk factors related to T2. For example, about 1/3 of T2s are of normal weight. There are a bunch of other examples and I am sure those folks will chime in.

Finding out for certain whether you fit into a particular camp is important for several reasons. T1 can only be treated with insulin. If you're not producing insulin on your own or producing low levels of insulin, many of the oral meds will either not help or will result in your beta cells burning out faster. There is some evidence that starting insulin sooner, before your beta cells "die off," can preserve beta cell function, leading to better control in the long-term.

In addition, if you have antibodies (indicating the more typical form of T1), you need to be alert to the possibility of developing other autoimmune conditions. I never knew about this until I started talking with people on this forum, so I make sure I'm routinely screened for thyroid function, among other things.

Given your age and how you describe the onset, it's pretty likely you're a T1. Contrary to popular belief, many T1s are diagnosed in adulthood. Unfortunately, doctors are not always aware of this and some will just automatically classify you as a T2 simply because you're an adult or maybe have a risk-factor or two traditionally associated with T2. I personally think this is a really dangerous trend.

So, when you do get to an endo, make sure to get screened for antibodies and have your c-peptide levels checked. If you come back positive for antibodies, make sure you are screened for other autoimmune conditions as well, such as Hashimoto's thyroiditis.

5

Hi Brownchops, and welcome. What kind of insulin regime are you on? Also, I wrote a blog of my top ten tips for the newly diagnosed Type 1 (click on the link to see) that you may find useful. I am glad that you found TuDiabetes, use this forum to get the support and answers you need!

6

The usual statistic for the percentage of Type 2s that are overweight or obese is 80-85% (not 66%). Then, many of those 15-20% "non-obese Type 2s" are autoantibody positive, have Type 1 autoimmune diabetes, and have been misdiagnosed; or have monogenic diabetes (aka MODY) and have been misdiagnosed.

7

A couple thoughts. I know it's easy to wonder how (and when!) this all happened when you're still in shock over your diagnosis, but that question is unlikely to have a clear answer, and the bottom line is to focus on what to do next - that will keep you more than busy!

As for Type - you don't change from one type to another. If you have antibodies and low insulin production and are, therefore, diagnosed Type 1 you have always been Type 1 and always will be. The confusion comes in because some of us who were diagnosed later in life were initially misdiagnosed as Type 2 due to doctor ignorance. Some of us (like me!) were able to manage for awhile on oral meds (15 months for me) or even on no meds at all before diagnosis. The reason for this is many adults are slower onset which is called LADA. It is still Type 1, just one that comes on more gradually. When I was diagnosed I'd been feeling tired for awhile but put it off to working two jobs and being close to retirement. I'd also been peeing a lot and drinking a lot, and it took me awhile to put this together with my steady wait loss and go "aha!"

As for where you are at now: You don't mention your treatment. I assume they put you on insulin. Are you on a basal/bolus regimen? I highly recommend the book Using Insulin by John Walsh to learn the basics you need to know, rather than waiting till the end of April for your follow-up. As for your nurse's comment that "your numbers are fine and they could be a little higher post meal time" - what are those numbers? I doubt that they need to be any higher unless they are very low.

8

Yes i'm on 24 units of Lantus in the morning and novorapid before each meal. regarding the nurse's comment on my numbers could be a bit higher she told me that if my blood glucose was below 10mmol two hours after a meal this was acceptable though i thought this to be a bit high i think she mentioned it because i told her i'd gone low a couple of times usually mid morning. Thankyou for the feedback it's greatly appreciated i'll defo check the book you recommended out.

9

I'm on 24 units of Lantus in the morning and novorapid before meals i'll check your blog out now and i really appreciate the feedback

10

11

Thanks for the positive words it means a lot, i'm trying to absorb everything i read and remain positive myself

12

nice one mate i'll try and do my best and i appreciate the kind words.

13

Cheers for that mate i'll ask the doctor about other autoimmune conditions it really is a massive learning curve

14

Cheers for that mate i'll ask the doctor about other autoimmune conditions it really is a massive learning curve

15

You could have had inadequate production of insulin for years, and yes you could have been having some complications developing before ever diagnosed. I guess if you know when you were last tested for it and were not diagnosed as having it, you know when you didn't have it!
The best news, however, is that with keeping the blood glucose in the target zone as close to normal as possible, those beginning complications and their symptoms seem to recede and do not develop further.
Your question about whether you were a T2 that has become insulin dependent is one that depends on diagnostics and who you talk to! What we believe changes with the newest research findings! So welcome! Read, read, read, and approach your diet and body with a positive, trial and error mode.

16

Thanks mate i feel fine at the minute so fingers crossed i am. I appreciate the reply

17

Yes, 10 (180) is definitely too high. Many of us use the goal of under 140 two hours after eating.

If you are having lows mid-morning - assuming this is several hours after breakfast - it could be from your Lantus. If it is an ongoing problem you might want to split the dose.

18

yeah i thought it was too high. I read something about splitting the dose though i wouldn't know when to take the second dose, i currently take the 24 units at 5am when i get up for work so would i take the second dose at 5pm?

19

You could do that, 12 hours apart is pretty typical though not an absolute. Your lows mid-morning definitely might be from the Lantus as that's when it would have the peak (though it's not much of one). You could split it evenly or not, depending on how well it works. You might need a tad more for the morning and less at night.

20

I was just diagnosed in early February...

I started on once a day Lantus, but split the dose a couple of weeks in.. because I would go much lower in the afternoon between 3 and 5pm.. and I also adjusted the times that I take them..

Most sources say Lantus does not have a peak; but I feel like FOR ME it has a slight peak effect about 8 hours in.. I also know my pancreas still kicks out insulin as I have a c-peptide of 1.1... it seems to wanna kick that insulin out in the afternoon... so adjusting the timing of the morning Lantus I take helped a lot...

Also, I think I had vague early symptoms starting about a year ago with fatigue and girl issues. I attributed it to stress, but the symptoms got progressively worse..

Anyway.. Zoe recommended Using Insulin by John Walsh: I got this book when I was first diagnosed, and absolutely adore it.