How long was I diabetic before I was diagnosed?

[bretty]

i was diagnoised with t1 11months ago, but when i was told i was t1 i askd my local gp to look back on my records to see how long i had been complaining of my 3 main symptons (weight loss.thirst.tiredness) and by my gp's records i had been complaining of theses since 2001 nearly ten years.! i was sleeping for up to 16 hours a time and the last month before they told me i was t1 i lost 3stone. an that was not really fat that was muscle..

 

[Erin]

Well when i went to the hospital, i did so because my ketone strips were blue for a month and was gradually falling into coma-like sleep every day; also had incredible thirst and going to bathroom and everything looked foggy; also the water tasted funny like iron -- forget if this was before or after the meds. I diagnosed myself as diabetic. My nurse (the team at the hospital was great) said I probably had been diabetic for some time.

How long? -- my guess is a creeping diabetes for 10 years. The first symptom i think was carpel tunnel syndrome, then excessive thirst and voiding attributed to another drug.

The EPIDEMIC that everyone is talking about due to obesity and MacDonald's may have been prevented if we went back to the old days of the *yearly medical check-up*. Unfortunately, our real problem is a crisis is public health care. With the growing population, poverty stricken countries (e.g. China and India have the highest diabetic rates) and the aging population, i think we have a global problem.

I am fortunate to have been caught and treated in time. I wonder if any damage has been done to kidneys, heart etc. but there is no way of knowing with diabetes because one blood test in 10 or 15 years will not indicate diabetes.

 

[viviennem]

I have a male Type 1 friend who says the shock of losing his father prematurely brought his Type 1 on almost instantly, in his early 40s I believe. We haven't discussed it in detail.

My other Type 1 friend got gestational diabetes about 50 years ago, went straight to Type 1 and is now in her 90s!

Viv 8)

 

[Zanshin]

I had symptoms but didn`t think any of them were strange. I was 24, it was 1995 and a very hot summer. I would go out drinking at the weekend, wake up the following day very thirsty, drink loads of sugary drinks (Lucozade, Vimto etc !), and urinate a lot - I was thirsty because I`d got drunk the night before and was dehydrated, thirsty because it was hot, and weeing because I`d drunk too much - all made sense to me...

Then I went for a knee operation, they took a sample, and diagnosed me type 1. I don`t think I was undiagnosed for months and months, but I do think that the majority of people in their 20`s wouldn`t make the connection between the symptoms I had and diabetes. Worst of all, my mum is type 1, but we`d never discussed the symptoms!

 

[candi-girl]

May 2001 was really hot. I was at work at kept being thirsty, was at school too. I just couldn't stop drinking and peeing. In the end my Mum said I should see the Doc so we went. I had started throwing up and couldn't stay awake. I felt so bad. I lost 2 stone. I got diagnosed in the June. I think it took about a month, first 2 weeks i felt odd and the 2nd 2 weeks I just got really really ill.

 

[serankine]

My reply to this is a little different. My daughter was diagnosed november 2010 age 4.
I has read an artical in the magazine, thirsty tired and needing the toilet. My daughter was showing signs of all these wetting the bed etc.. Really unusual for her. Took her to the doctors with a urine sample. They tried to tell me it was a urine infection and to come back in 3 weeks. But wouldnt leave till they tested for diabeties but they said it was highly unlikely eventually they did the dip test that showed glucose then a B.G and it was 19. so sent straight to the hospitial. But if i didnt kick uo such a fuss it would have been another 33 months if not more till she was diagnosed.

 

[BrianSkye]

I think I had a rather unusual route to diagnosis.
A friend of mine went T1 shortly after having a kidney removed and I got lots of tales from him over his problems with his insulin regime. He always seemed to be getting a new meter so one day he gave me one of his and some strips. I tested myself out of curiosity from time to time over a couple of years and always got good results but then I noticed them creeping up so I saw my GP and we did the glucose intolerance test and failed. I made alterations to my diet but about a year later I became type 2 and moved into drug treatment. It was only a year or more further on that I got any actual symptoms.

 

[Olwin11]

I was diagnosed 3 months ago with type 1 aged 58 no history and symptoms seem to have come on pretty quickly ... Dr. did not bother with any immediate testing, sugars were 31 keytones over ++++4 , told Dr. excessive thirst and urination , lost 3kg in as many days .... I am not sure if I had this disease as an underlying problem for a while .. on reading the above threads perhaps it was ... I wonder if there is a way of telling .... I am thinking that there just might be damage done to eyes, feet or some other part of the body that this disease gets a hold of .... just wondering ... What do you think

 

[pinewood]

Interesting thread. I was diagnosed in December 2014. In June of that year I had a standard annual medical at work and my blood glucose result came back at 8.8mmol. I was told this was "perfectly normal and in range" even though my blood was taken at 5pm and I hadn't eaten since lunch. Apparently 4-9 was what they considered fine. I thought nothing of it but now I've been diagnosed think I must have had T1 back then too as it's way too high for 4 hours post eating. I'm disappointed the doctor didn't bother to investigate it any further - and also that I didn't look into it more - but expect it's because I'm in my early 20s and T1 wasn't on the radar.

 

[Celsus]

Interesting thread. I was diagnosed in December 2014. In June of that year I had a standard annual medical at work and my blood glucose result came back at 8.8mmol. I was told this was "perfectly normal and in range" even though my blood was taken at 5pm and I hadn't eaten since lunch. Apparently 4-9 was what they considered fine. I thought nothing of it but now I've been diagnosed think I must have had T1 back then too as it's way too high for 4 hours post eating. I'm disappointed the doctor didn't bother to investigate it any further - and also that I didn't look into it more - but expect it's because I'm in my early 20s and T1 wasn't on the radar.

A casual test of bg on an individual with no past history or observed condition will probably not cause alarm among clinical staff until persistently above 10-12mmol/l.

 

[Celsus]

I was diagnosed 3 months ago with type 1 aged 58 no history and symptoms seem to have come on pretty quickly ... Dr. did not bother with any immediate testing, sugars were 31 keytones over ++++4 , told Dr. excessive thirst and urination , lost 3kg in as many days .... I am not sure if I had this disease as an underlying problem for a while .. on reading the above threads perhaps it was ... I wonder if there is a way of telling .... I am thinking that there just might be damage done to eyes, feet or some other part of the body that this disease gets a hold of .... just wondering ... What do you think

Typically the onset of fullblown T1 is so rapid that hardly any developments towards complications can be observed at the point of diagnosis. The T2 is altogether different, as this typically can take 6-10 years from initial bg challenges till diagnosis is established. Especially the last 4-6 years before the T2 diagnosis is confirmed can be hard for some of the fragile bodyparts suffering most from high bg levels. Reason why T2 typically have more long-term complications vs T1 within the first many years after diagnosis.

 

[Alicia-Anderson]

I wonder why they do not do more tests, it seems a simple thing to do and fast?

I think mine came on very fast, I was abroad and got a bug, then I started loosing weight and drinking a crazy amount of water and getting out of breath when walking. quick google on my symptoms and it said to get a test so I did and was very lucky to havediagnosed myself. Got it confirmed at the doctors who sent me straight to hospital who said I would have been in serious bother in the not so distant future if I had not come in. :shock:

I suppose I could have had it for longer, but I certainly only got the syptoms come in a short space of time, but wow 51 BG is massive! you must have felt like a very ill jelly bean. Im glad your ok and glad your on track now feeling good.

I went away abroad for work, and the places where I went give there staff a proper medical every year, its not an option! why dont we do this in England I wonder? wouldnt it be a good thing for a company to ensure the health of its staff? (less sick and so on) Oh well! but it might just pick up some of these symptoms early on? and other conditions also.

This is surprising to me. I have had my daughter who is 4 1/2. And has every symptom there is. I bought my own meter and home supplies. She tested at morning 59 feeling very ******. And 203 after lunch. And doc said she is fine. Also drank 40 ounces at dinner one night. And will cry for a drink. Her specific gravity of urine was 1100. Apparently tested to verify. And the doc said they can't diagnose on low blood sugars. I'm shocked to see how many diagnosed on low blood sugars. Just confirms I'm not crazy. But her blood work is ok still. They refused a random. And every night she is hot. She is never covered and usually with no clothes. Anybody experience this? So worried about her I check her in the night all the time. Any suggestions would be great

 

[YorkshireAli]

I was diagnosed T1 in March 1996 at the age of 38. I'd had gestational diabetes during both my pregnancies, and had been tested clear of it three months after delivery in both cases. The last test was November/December 1995. I had some of the symptoms in probably late February (excessive thirst, loo and tiredness), and though I suspected it'd come back (my mother was late onset T1, so I knew what to look for), I sort of put it down to having two small children and thought that if it was diabetes, it might help lose the baby weight if I could put up with it for a bit (I know.....my thinking was a little skewed!). It didn't. I just got more and more tired, till my husband lost patience and told me to "see a f*ing shrink". I saw the doctor instead, and after doing a test, I was at the diabetic doctor within 30 minutes and on insulin straight away.

Still have diabetes, don't have the husband....

 

[azure]

This is surprising to me. I have had my daughter who is 4 1/2. And has every symptom there is. I bought my own meter and home supplies. She tested at morning 59 feeling very ******. And 203 after lunch. And doc said she is fine. Also drank 40 ounces at dinner one night. And will cry for a drink. Her specific gravity of urine was 1100. Apparently tested to verify. And the doc said they can't diagnose on low blood sugars. I'm shocked to see how many diagnosed on low blood sugars. Just confirms I'm not crazy. But her blood work is ok still. They refused a random. And every night she is hot. She is never covered and usually with no clothes. Anybody experience this? So worried about her I check her in the night all the time. Any suggestions would be great

@Alicia-Anderson Hi Sorry you're so worried about your daughter. Please don't hesitate to take her back to the doctor's for further checks if you feel something's not right.

Just with regard to your comment about being diagnosed on "low sugars", bear in mind that most people here are giving their blood sugar in mmols, which is a different system from the figures you've given. There's a handy converter here:

http://www.diabetes.co.uk/blood-sugar-converter.html

 

[Flakey Bake]

My type 1 journey took about 4 years. I had one high BG reading late in pregnancy and following the birth of my daughter I probably had about 1.5 years of feeling ill. Lots of infections, heart arrythmia, fatigue, weight loss, muscle wasting (the list goes on) I put it down to to having a baby, going back to work, sleepless nights etc. But I was really dying on my feet. I was too fatigued to realise how ill I was. My hubby dragged me to the doctors. They did the tests and I was called back the same day B=29.8 and told definately type 2. I initially improved with type 2 meds, but after a year of reasonable control, things got worse, much much worse. I fought with the doctors for about 1.5 years. My BG was consistently high teen/20s and I was taking the max doses of metformin, glipicide and sitaglipin, low carb diet, all to no effect. The GPs would not believe I could be type 1 because I was 39 years old and overweight - therefore I must be type 2 and stuffing my face with too much sugar! I saw a different GP and told him, if I didn't get insulin I was going to die. That worked, but it still took nearly 2 months to get referred. At the hospital they did the GAD tests and the result were through the roof. All hell broke loose, frantic phone calls to get me in as an emergancy. The nurse said 'you have to come back in now, you are TYPE 1, you need insulin NOW'! I was like 'well I have been for the last 4 years, but nobody would listen to me'. I have good care now, but I worry about how much damage occurred to those uncontrolled years when misdiagnosed. EVERYONE should be tested for type 1 upon first diagnosis of diabetes and again a year later just in case the anti-GAD titre were too low to detect during the early phase diabetes. So many older type 1's are misdiagnosed. A simple cheap test may save a lot of heartache. The effect of 4 years misdiagnosis effected me in other ways, confidence, blame and self esteem. I was trying so hard to control my blood sugar and failing for years whilst the GPs basically indicated that they thought I wasn't trying hard enough.

 

[TorqPenderloin]

This is surprising to me. I have had my daughter who is 4 1/2. And has every symptom there is. I bought my own meter and home supplies. She tested at morning 59 feeling very ******. And 203 after lunch. And doc said she is fine. Also drank 40 ounces at dinner one night. And will cry for a drink. Her specific gravity of urine was 1100. Apparently tested to verify. And the doc said they can't diagnose on low blood sugars. I'm shocked to see how many diagnosed on low blood sugars. Just confirms I'm not crazy. But her blood work is ok still. They refused a random. And every night she is hot. She is never covered and usually with no clothes. Anybody experience this? So worried about her I check her in the night all the time. Any suggestions would be great

As Azure mentioned, it sounds like you're talking about mg/dl measurements which is what I use to measure here in the US. Most people on this site are from the UK and measure in mmol/L. The easy calculation is to multiply by 18. So a reading of 180 mg/dl would equate to 10mmol/L.

Long story short, if your daughter has readings anywhere close to 59 mg/dl it's highly unlikely she has diabetes. I suppose it's possible and stranger things have happened, but I'm not aware of a single case when a child had numbers anywhere close to that and was diagnosed with diabetes. Most of the time they're almost 10 times that figure.


Side note: some people are also mentioning their HbA1c numbers which are measured in percentages.

Edited because I can't do basic math today, lol

 

[dannyw]

The equation is correct but 180mg/dl equates to 10mmol/L.

 

[Robinredbreast]

My reply to this is a little different. My daughter was diagnosed november 2010 age 4.
I has read an artical in the magazine, thirsty tired and needing the toilet. My daughter was showing signs of all these wetting the bed etc.. Really unusual for her. Took her to the doctors with a urine sample. They tried to tell me it was a urine infection and to come back in 3 weeks. But wouldnt leave till they tested for diabeties but they said it was highly unlikely eventually they did the dip test that showed glucose then a B.G and it was 19. so sent straight to the hospitial. But if i didnt kick uo such a fuss it would have been another 33 months if not more till she was diagnosed.

Diabetes symptoms in children were being petitioned to go into a child's red book. It can be a life threatening condition, I know, because of my granddaughter, but some children are are so unnecessarily misdiagnosed by GP's and hospital doctors, told 'it's a virus' and have then died, just shocking.

 

[ann34+]

Hi,
Just thought I'd share my experience. I first began to feel unwell in October 2006, I was tired and thirsty all the time, and then had bouts of blurred and/or double vision. I had an eye test, the optician said my vision was perfect, but I disagreed as I was seeing two of everything! My doctor referred me to the eye hospital, but I never got an appointment and the problem disappered anyway. I then began to have difficulty sleeping and had increased appetite but also weightloss ( I thought my dieting days were over and I'd got it all sussed!) Ifelt generally ill all the time, weak, tired and just drained all the time. my doctor prescribed antidepressants and sleeping pills- neither of which worked.
I was finally diagnosed in December 2008, whilst in holiday in India- I ended up in a coma in a hospital in Goa and needless to say I was extremely upset and confused when I eventually woke up!
I suppose I cannot be certain that I'd been diabetic since October 2006, but looking back, the symptoms all add up. I just wish that I'd had a blood or urine test done at some point, I know there's nothing anyone could've done to prevent the onset of type1 diabetes, but I'm sure that if I'd been diagnosed sooner, I wouldn't have become so ill whilst on holiday and had all the drama and complications that followed.
Tara

I also thought my dieting days were over! Also saw an optician and told sight perfect! It is the accommodation that goes in undiagnosed diabetes., also felt ill and unwell, at 25 i thought this must be what growing old feels like, so tired stopped work, developed a bad back as muscles not strong, told to run round the local park by GP, as a veggie tested for iron, that was fine. sent to rheumatology, always freezing, wearing long striped sox, consultant joked and asked what football team i played for and could not understand it when i said i could hardly carry a bottle of milk upstairs. Letter came back suggesting i might have some sort of mind problem and aversion to housework, got no where with medics, on constant repeat prescriptions for thrush meds, and 2 years later in life threatening diabetic coma at 30, told so ill that would take a year or two to feel better, Long long time ago, hoped things would have been better in 21st century. in young adults bone should be being built up, undiagnosed Type one diabetes is thought to interfere with this, in hospital this was not at the time known but when a bone marrow was done the consultant was called to do it , i heard them say my bones were like butter. no internet or Diabetes Forum then. Lost a lot of trust in doctors

 

[ElyDave]

I picked up a dose of flu when I was working away from home. Felt like I had a cold on the Wednesday, felt like I'd been beaten by Thursday, but as I was going home Friday took a dose of HTFU and carried on. Spent the weekend on the sofa.

Symptoms started appearing not long after that including the typical massive weight loss (I went down to 60kg / 9 1/2 stone), massive eating, massive drinking etc. The photos looking back are quite horrible.

During this period I carried on working and training as normal, but started getting night sweats, cramps, tiredness, fatigue etc even to the extent of sleeping on a towel. Instead of jumping out of bed at 6am I was crawling out of bed at 7 or 7:30, no morning runs and falling asleep by about 10pm or earlier. Running performance did not seem to suffer though, although my resting heart rate went up by 10-15bpm.

Early May I went offshore on a large platform (4 platforms with bridges, 7 floors and no lifts) even eating 3 cooked meals a day and puddings plus snacks I lost more weight. I started looking on the internet and came up with thyroid problems (diabetes never entered my mind) and made an appointment to see the doc in early June.

Sunday 2nd June 2013 I was up in Cumbria, to run The Yomp Mountain Challenge, 23 miles in the Cumbrian fells with about 1800m of climb. I finished in 4hrs 25 mins having eaten almost nothing all the way round, but suffered from nasty cramps from about halfway/two thirds distance. Drove home eating a whole pack of dates and another 250g bag of mixed fruits and nuts, maybe a muffin with my coffee as well.

Monday - visit doctors, wee in a pot, he says "probably diabetes" come back tomorrow for bloods. Tuesday bloods, Wednesday on my way home from London on the trains, get a call from the surgery " go to Addenbrookes now, they're expecting you". They weren't, I waited 3 hours to see someone (apparently I should not have been sent to A&E but straight to the medics), was admitted and stabilised, out the next day, travelled up to Aberdeen the following Monday.

My BG on admission was about 26 and Ketones around 3 IIRC.

I went back the following year and re-ran the race, finishing in a better place (25th) and in 4 hours 19 minutes including time take to stop and check BG.