How long can u be undiagnosed?

Interesting questions and ones I am going to ask when I see the specialist in a couple of weeks.

I too can remember a number of times when I had hypo like symptoms that went away after a snack nut these came and went in phases. I have no family history and never knew what these were until I was diagnosed in Jan.

Maybe this points to a faulty pancreas which became t1 when it gets too weak.

Did you test positive for anti bodies that attack the pancreatic cells which is typical of T1? I don't and wondered if these symptoms are signs of a slightly different T1.

When I was diagnosed over a year ago, the consultant said to me that it was likely that I have had the condition for many years however only when the pancreas completely packs up does the symptoms fully occur; which I think is true as like you I can remember times as a late child/teens needing to wee continuously etc etc.

All I temember is a very fast onset over Christmas of extreme, unquenchable thirst and not being able to see the writing on my new tv properly.
Decided to wait till Xmas n New Year were out the way. Went to GP on 6th Jan and told there was a bed waiting for me in hospital the next day. Went to friends house that night and got totally rat ***** on white wine....hba1c was 17.0 when admitted next day and first injection in my leg within 30 minutes.

Don't remember having symptoms for a long time beforehand.

About 3 years in the 1970's

Well, with LADA you have a slow onset form of Type 1. Looking back, I think I had this coming on for quite a while before diagnosis. I had intermittent blurred vision - couldn't see the coffee menu in Costa, intermittently needing the loo several times a night, hot flushes after eating and so on. So many intermittent symptoms but I didn't even register there was anything wrong. My diagnosis was a complete shock and as a result of a random blood test for something unconnected - although the unconnected problem went away as soon as my BG was under control. I didn't have the crisis point that most Type 1s have - just a very gradual decline.

Smidge

Just a few months for me, quite rapid and just got worse, feeling rotten, with all the classic symptoms, kept going until I ended up in a hospital. But that was a few years ago now.

RRB

I feel I must have been "lucky" my T1 was picked up on a routine test. Everyone was really surprised. All I had to do was going to hospital to see the nurse and go through a few things so never thought it was too bad.

Sort of explains the call from NHS 111 at 9:30pm to give me by test results. I assume someone was worried as my bg was 28.

The more I learn and hear from others on these forums the more I am working to improve my control. Thanks for sharing.

I often wonder how long I had diabetes before diagnosis and how long until I can expect complications. Like others I had no obvious symptoms that I was diabetic and it was only picked up by test for another medical complaint. Looking back the only clue that I had diabetes was I suddenly started sleeping well , prior to that I suffered with chronic insomnia. Not an obvious symptom , and as soon I as got my B/S under control the insomnia resumed :-(

my mother says she is sure my symptoms started in late may following a nasty infection -- diagnosis was middle of august after a lot of weight loss and constant thirst and drinking gallons of liquid per day and going to the loo constantly

I was diagnosed at the age of 12. I had an ear infection in September and then was diagnosed in December after all the classic symptoms appeared. and was told its not till the pancreas completely 'breaks' if you like that you'll probably get diagnosed but you might have had it for a little bit before being diagnosed as your pancreas probably was still giving out a small amount of insulin before finally giving in and stopping which leads to needing to manually put in insulin...

About 5 years ago after doing some mild activity at work, I had a hypo type experience, elevated body temperature, dizziness, shaky, heartbeat thumping could hardly breathe. I didn't know what it was, I just rested and it went away after 5 mins or so. I went to the quack and was referred to a cardiologist who gave me a clean bill of health (after perfoming an expensive angiogram on medical insurance I might add). Back at the doctors surgery I distinctly remember my GP saying 'your blood sugars are a bit high' and then seemingly dismissing it before referring me to a chest specialist who told me I was asthmatic.
The hypo type experiences when exercising have happened several times since that first occasion and I've tried every asthma drug available with little effect.
Then about 3 years ago I started having problems with my eyes being sore all the time and an opthalmic specialist has had me squirting steroidal eye drops into my eyes twice a day ever since - it doesn't help much. The soles of my feet have also been sore for about the same length of time, but I didn't even bother asking medics about that.
I started injecting Insulin on 9th October 2014 after going to the doc with rapid weight loss, thirst and excessive weeing. Within a couple of weeks the soreness in my eyes had pretty much gone, and my sore feet are nowhere near a bad as they used to be. I saw my diabetes consultant for the first time this week and he told me that diabetes develops over weeks rather than months and years! I told him what my GP had said about my blood sugar a few years back - he looked at my records and said 'erm, oh yes'.
I don't know for sure what the answer to your question is and my experiences could be a pure coincidence.

keishamarie said:

I was diagnosed at the age of 12. I had an ear infection in September and then was diagnosed in December after all the classic symptoms appeared. and was told its not till the pancreas completely 'breaks' if you like that you'll probably get diagnosed but you might have had it for a little bit before being diagnosed as your pancreas probably was still giving out a small amount of insulin before finally giving in and stopping which leads to needing to manually put in insulin...

Click to expand...

Strange you mention ear infection. My daughter had an ear infection in April this year. It was really bad pus oozed out of her ear like a volcano. In August she was diagnosed with diabetes. Before then she hardly drank anything all day. Then all summer she was getting thirsty all the time. In last few days before I took her to the doctor she said she could only think about liquid all the time. Should have known really but as it was the summer we were all drinking more. It wasn't till she went off her food in those last few days I really knew something was wrong.

I had no symptions at all,I wouldnt have known if I hadnt moved house and changed doctors,and had blood tests.
Three years ago to date I was in hospital for 3 months suffering from legionella which I picked up in Ciro,Im lucky to be alive,If I had diabetes it would have been picked up then.
I think that the legionalla may have caused the diabetes,as my organs did pack up for a time.
But I will never know.

I had gestational diabetes which was only picked up at around 24 weeks into my pregnancy, I was tested after my daughters birth and blood sugars went back to normal, then 4 years later I went on a skiing holiday displaying all the classic symptoms like peeing constantly losing a lot of weight, constant dry mouth etc etc, came home and first day back went to the docs and then sent to hospital. I have often pondered on this very question as I think I could of had type 1 for many years before eventual diagnosis which would of explained a lot of things, the doctors don't know the answer to the question either or at least the ones I've asked including a specialist type 1 doctor I met at a research programme I was involved in at Bristol Royal Infirmary.

The final bit before diagnosis can seem quick because that's when the overt symptoms show up; weight loss, frequent urination etc , Before this occurs there is a progressive loss of beta cells
They are even studying this 'pre diabetic' period by studying the development of diabetes from birth in children who are genetically susceptible to T1. http://www.diapedia.org/type-1-diabetes-mellitus/natural-history-of-pre-type-1-diabetes
I have LADA.
I actually had two periods of symptoms . During the first , I lost quite a bit of weight and had many of the classic symptoms of T1. (I tested myself,thought I had T2 since Type 1 didn't happen in adults!!! I was moving country and stupidly ended up not seeing a doctor .
Fortunately, I assume I had sufficient beta cells left so that my lower weight body was able to manage for some time.
I was careful because I 'knew' I had T2. I used a low GI diet and did a fair amount of exercise for 3 years.
I'm sure there were times that my glucose levels were higher than they should have been .They can't though have been high all the time. When everything collapsed, and I developed all the classic symptoms again , my glucose levels were very high but my HbA1c wasn't. . It would have been if my glucose levels had been that high for 3 months.
It was quite a shock to end up in hospital, to test antibody positive, and to be told that I had a slower developing form of T1 all the time.

Weirdly, they thought I was diabetic as a child... In nursery they called in my mum and said I was drinking and peeing a lot and so they were worried I might be diabetic. Mum took me for tests (which I assume would have just been standard blood glucose tests) and nothing was abnormal.

Then throughout my twenties I used to have loads of 'hypo' symptoms - so much so that I got tested a fair few times for diabetes - again just normal glucose tests which always came back clear.

I also used to have to get up and pee through the night for as long as I can remember - since starting insulin it's a complete novelty to not have to do this!

When I was diagnosed - and my consultant said he'd never seen such a high antibody score (my GAD was just shy of 2,000 - and its under 5 in peeps who aren't type 1). He also said he thought I'd probably been type one for a very long time, and that my diet (which had been vegan & gluten free for most of my life) had probably slowed it down.

Anyway - impossible to know for sure, but interesting to hear others suspect they had it a long time beforehand too...

Oh... The other perhaps giveaway that I was probably experiencing symptoms years before diagnosis was that a few times I tried to cut sugar out completely - due to the aforementioned 'hypo' episodes... Each time I did, I put *on* weight... So I'd lose the motivation to continue and add sugar back in - and every time, without fail, I'd start losing weight... At the time I used to joke about it - the more sugar I ate, the more weight I lost! But now I realize it's probably cos my numbers were terrible and I was peeing out whatever I ate... :-/

Lastly, in the summer before I was diagnosed I suddenly became very clumsy... I kept falling over or bumping into things and injuring myself quite badly... I'm generally not clumsy at all, which is why I thought something was up... Now, whenever I'm running a little high, I also notice I'm more accident prone...

Me too. I used to eat desperately, because I was so tired and was desperate for energy. And I ate really fast.

Very uncool.