How long did you think you had diabetes before diagnosis?

[Seeker2016]

Am interested to know if it was greater than 10 years especially and what complications you had by the time of diagnosis and how you are feeling now.

 

[DeejayR]

I had what I think were signs of hypos for about a year but didn't connect them with diabetes. I was diagnosed T2 when I went for an OAP MoT. I feel great now. How are you?

 

[Seeker2016]

I am in shock. Sudden type 1 diagnosis in May. GP awful and blase. I am 45, and was a fitness fanatic really, ate well, exercised, had a lot of problems with feet, ways very cold last 5 years and lots of urination. Drank coke and lucozade endlessly to curb thirst. Crazy.

 

[ickihun]

I had symptoms 40yrs ago (at 6yr old) but only diagnosed 13-14yrs ago. Thrush, tiredness and energetic burst. Then sugar cravings and thirst. Great now. On mixed insulin and metformin for pcos. No weight loss since restarting on metformin.
Working to reduce insulin as I'd like to be on metformin only but I have a holiday and xmas to interfer with my need for long term reduction plan.
Have been able to half my insulin needs to date due to tips and wisdom off posters here at diabetes.co.uk forums.

 

[whosbear]

I believe I had diabetes for about 20 years before diagnosed.

 

[ickihun]

I am in shock. Sudden type 1 diagnosis in May. GP awful and blase. I am 45, and was a fitness fanatic really, ate well, exercised, had a lot of problems with feet, ways very cold last 5 years and lots of urination. Drank coke and lucozade endlessly to curb thirst. Crazy.

Where you diagnosed type 1 immediately? Were you hospitalized?
It is a shock but I was relieved as I knew something wasn't right and couldnt lose weight.
I too had a good diet and very active and strong.
Having mobility problems just recently so weight not shifting again. Inflammation seems to cause havoc!
Type 2s are told to lose weight, if over weight, for better insulin levels.
I'm afraid I have to prove I'm type 1 and 2 by gastric reduction op. They just see my weight.

 

[Seeker2016]

Ickihun, , wow are you serious. Having had it so long did you have complications already.

To answer your question, I was seeing a GP regularly for unrelated issues, 3x a year at least. I trusted him, the last time he did a blood test on me was 2004. Nothing since, in 2016 may I said to him, I had insomnia for 4 months. Which I have hand before, and constant tiredness for at least 5 years. He ordered routine blood test. Came back 36.1 mmol. Got a call from St Georges to go to a&e immediately, I felt ok, well the same as my usual ****** self for the last 10 years. GP then tested me for ketones, present. Before testing he was skeptical and said "you don't look unwell", I have always been thin, but was down to 9 st from 10.5.Never been more than 11st. Am 5"8. He then said oh I see you were boderline diabetic in 2004. Nobody had ever mentioned this to me then or ever and there was never a follow up. Needless to say I furious with my GP practice and saw dsn next day,she showed be how to inject insulin, gave me a leaflet, told me I was type 1. Left me to it. I have seen her 3x since diagnosis. All the information I have is from amazon books Gary Scheiner, Bernstein,Ruhl and forums. The support was appalling. I have lost all respect for GPs. My dsn is great but overloaded. Horrible time.

 

[Seeker2016]

To add HBA1c on diagnosis was so high that it wasn't on the chart. Worst year of my adult life so far. And most frightening. I have lost feeling in my right foot toes and have neuropathy in both hands and cataracts started in both eyes. I don't know what the moral of the story is except I feel pretty unlucky.

 

[ickihun]

To add HBA1c on diagnosis was so high that it wasn't on the chart. Worst year of my adult life so far. And most frightening. I have lost feeling in my right foot toes and have neuropathy in both hands and cataracts started in both eyes. I don't know what the moral of the story is except I feel pretty unlucky.

No moral of your story hun. Bad things happen to some people. I wish it didn't but it does. The way forward is to work with what you have and improving what you can.
So this is your starting point.
Your journey starts now.

I can see wonderful things for you. Positivity can make a huge difference.
Research is out there regarding improving neuropathy. Google it and do a search on these forums.

Myself I'm unaware of any complication except insulin resistance and reoccuring thrush at 8-9mmol/l. Higher bgs in themselves don't cause me anything other than old symptoms. Of what I'm aware.
However, in the past year eating to my meter and low carb and occasion high carb treat I'm experiencing inflammation. Inflammation of my pelvic joint and reoccuring scatica. I jumped off a small wall after having my second baby to get a shock of no suspension. My joints had hardened back up after pregnancy hormones no longer were protecting me.

 

[ickihun]

I believe I had diabetes for about 20 years before diagnosed.

Do you have complications?

 

[Neohdiver]

Am interested to know if it was greater than 10 years especially and what complications you had by the time of diagnosis and how you are feeling now.

No more than a year.

My doctor is one of the few who always does a blood glucose test as part of my annual physical. (It should be standard operating procedure for everyone, as common as it is - and how cheap the test is.) His criteria is two readings in a row of fasting BG readings above the cutoff. I suspect if I'd had a second reading in 2014 (after the first high September reading), I'd have been diagnosed in 2014, rather than 2015. (My fasting BG was ~ 7.2, and although I didn't start testing until after diagnosis, I've never seen a reading above 10.) I'd had some slightly slow healing post dermatological surgery in the year preceding diagnosis, but otherwise no symptoms I was aware of.

My spouse, on the other hand, likely had it for several years (I don't know about more than 10), but she was diagnosed with mild cognitive impairment around the time she was diagnosed with random BG readings around 21. She went in becuase of blurry vision - and I suspect the blurry mind (that continues) is a result of diabetes - rather than alzheimers. The blurry vision resolved, but the blurry mind continues. I wasn't aware, at the time when I was pushing her to have memory tests, about a connection between Alzheimers and diabetes - but when I was diagnosed, got my blood glucose under control immediately I was gobsmacked about how much clearer my mind was (symptoms I was experiencing, but not aware of) That got me wondering about my spouse (since her lack of mental clarity isn't progressing the way I woud expect Alzheimers acquired in her mid-50s to progress).

Her A1C is in the mid 6% range - but she still spikes to between 200 & 300, which we discover whenever she bothers to test.

 

[therower]

I would say that I was diagnosed about 3/5 months after first starting to get symptoms.
Excessive weight loss, excessive thirst, blurred vision etc etc. Because symptoms came on gradually didn't think anything was unusual at first.
It was only when I was emptying the fizzy drinks store at work in the space of 2 days that a work colleague said " you're not right " that I realised something maybe was wrong.
Following evening urine test at GPs . Positive. Next day injecting insulin.
Guess I've been lucky to have a doctor on the ball. Annoying that you haven't been as fortunate.
Hope you can better care and understanding in the future.

 

[col101]

I'd no idea before diagnosis. Blood test for unrelated issue showed bg off scale, next day hospital with dka and foot infection needing surgery. Now 6 months later neuropathy and poor mobility after 3 inactive months in hospital. Things are improving though, early days managing bg as t1d.

 

[Freema]

maybe 4 month maybe 1 year, got totally scared , didn´t sleep for 3 nights, I thought I was "lucky" to find out early, and therefore right away I decided to loose all overweight and get in supergood shape, also lost all appetite for the first weeks, went 1000 calories, and looked at all foods as poison in the beginning , and of cause changed my diet to the best possible,being so lucky I had no real big damage yet... thought that maybe I would be able to keep the scary complications away if taking it serious right from the start...

I think maybe I´d have been imobilised in a few years if it had not been detected , and that I´d just gotten thicker and thicker... actually I was about to be so fat that I hardly could clean myself when going to the toilet... couldn´t hardly reach behind myself...

now almost 20 kg´s lighter I can do so much and has found again the joy of walking and doing fitness and dreaming of a trip to the Austrian Mountains in summertime

I had a lot of bad hypoes when young and drinking at partys, but I didn´t know they were dangerous for my brain

Have got 1damage after all, when I sweat I do get very tiny little blisters on my skin maybe 30 each time I excercise... but after all this is hardly anything and it doesn´t hurt and they are only 1-2 millimeters

 

[Freema]

Ickihun, , wow are you serious. Having had it so long did you have complications already.

To answer your question, I was seeing a GP regularly for unrelated issues, 3x a year at least. I trusted him, the last time he did a blood test on me was 2004. Nothing since, in 2016 may I said to him, I had insomnia for 4 months. Which I have hand before, and constant tiredness for at least 5 years. He ordered routine blood test. Came back 36.1 mmol. Got a call from St Georges to go to a&e immediately, I felt ok, well the same as my usual ****** self for the last 10 years. GP then tested me for ketones, present. Before testing he was skeptical and said "you don't look unwell", I have always been thin, but was down to 9 st from 10.5.Never been more than 11st. Am 5"8. He then said oh I see you were boderline diabetic in 2004. Nobody had ever mentioned this to me then or ever and there was never a follow up. Needless to say I furious with my GP practice and saw dsn next day,she showed be how to inject insulin, gave me a leaflet, told me I was type 1. Left me to it. I have seen her 3x since diagnosis. All the information I have is from amazon books Gary Scheiner, Bernstein,Ruhl and forums. The support was appalling. I have lost all respect for GPs. My dsn is great but overloaded. Horrible time.

it´s a scandal that the GP didn´t tell you that you were borderline-diabetic .... so iresponsible of him

 

[Seeker2016]

That's putting it lightly. He said to me, why didn't you say something, I m your GP. I was dumbfounded, I thought he was the Doctor. It's strange that they don't do blood panels at least once every few years. Now am on insulin till I die. Horrible.

 

[Freema]

That's putting it lightly. He said to me, why didn't you say something, I m your GP. I was dumbfounded, I thought he was the Doctor. It's strange that they don't do blood panels at least once every few years. Now am on insulin till I die. Horrible.

stupid GP I already hate him

 

[Seeker2016]

It's not his fault I have this,but it was completely preventable.

 

[catapillar]

That's putting it lightly. He said to me, why didn't you say something, I m your GP. I was dumbfounded, I thought he was the Doctor. It's strange that they don't do blood panels at least once every few years. Now am on insulin till I die. Horrible.

You seem to think that had you been told earlier you would have avoided becoming insulin dependent? That's not how type 1 works.

If you've got concerns about how you were treated you could ask for an explaination, maybe via whatever version of PALS applies to the GP, probably just a letter to the practice manager. Or you could request copies of your medical records so you could have a look at it yourself.

It's very unusual for type 1 to be slow onset over 10 years. I would have thought it would be pretty unusual for a type 1 to be undiagnosed for anything approaching 12 months, type 1 is characterised by a fast onset. Perhaps for type 1.5/LADAs a longer period is possible. But type 1.5/LADA isn't even officially recognised as a type, so that would mean that you had a really very unusual clinical presentation, very unlucky that you were so unusual.

 

[Seeker2016]

You're right, the presentation was very odd indeed. They couldn't work out a type when I was diagnosed, had high mmol 36.1 and ketones, but not in DKA. I am insulin dependent, and assume that's what my DSN classify as type 1, although it's completely incorrect,late slow onset has been touted as a possibility, whatever happened, it's too late, if it was late onset lada etc. it would have been good know a long time ago and "prepare". Going straight to insulin as a type 2, seems odd to me. Whatever the story the anger and disappointment is there for me still.