How long did you think you had diabetes before diagnosis?

catapillar

Well-Known Member
Messages
3,390
Type of diabetes
Type 1
Treatment type
Insulin
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.

Have you had a GAD test?
 

Seeker2016

Well-Known Member
Messages
54
Type of diabetes
Type 1
Treatment type
Insulin
No, I am now moving to new hospital, with an endo consultant who says they need to start the diagnosis again, because the endo is skeptical of what the GP surgery have said. Apart from insulin and blood tests, and of course the dietitan who told me to eat more pasta, and starchy carbs, it's been an uphill struggle to get anything useful out of the surgery.
 
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CharleyE

Newbie
Messages
2
Type of diabetes
Type 1
Treatment type
Insulin
When I started to notice weight loss and extreme thirst I immediately thought it could be diabetes. I thought I had it for about 6mos. Just had to wait to see a doctor because they were booked up.
 
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Indy51

Expert
Messages
5,540
Type of diabetes
Type 2
Treatment type
Diet only
Probably at least a year or maybe even 2, although I had a history of impaired glucose tolerance prior. Twice before I'd quit smoking and gained 20 kgs and ended up with a prediabetes diagnosis. Once I'd start smoking again and lose the weight, my BG would "normalise" but knowing what I know now after lots of reading, getting the diagnosis of Type 2 after quitting for the 3rd time and gaining weight again, it was probably inevitable. If I'd known then what I know now, maybe I'd have taken the prediabetes stuff more seriously, though a lot of the stuff I now know is current research. Given the BS dietary advice still being dished out by Diabetes Australia, I'd probably have been no better off :rolleyes:
 
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teeekilicious18

Well-Known Member
Messages
101
Type of diabetes
Other
Treatment type
Other
being left untreated for a decade and had the feeling of the symptoms for a year... only then i can get checked.
 
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chalup

Well-Known Member
Messages
1,745
Type of diabetes
Type 2
Treatment type
Other
I was diagnosed with type 2 and full menopause at the age of 37, 11 years ago. Knowing what I know now the signs and symptoms were there from puberty on although I passed the gestational diabetes screening with both pregnancies. I did not know at the time to ask what the numbers were or what they meant.
 
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MissMac

Well-Known Member
Messages
234
No idea...my symptoms literally seemed to happen in a week and BAM! I have not felt right for SOME time but put that down to shift work...when that finished it's almost like I had the wriggle room to realise this was not normal! I have a friend who did the same as me and when circumstances meant she wasn't working for a while...got checked out by her Dr and has a raging cancer...and they say nursing is a good profession!! I feel FAB now (other than last nights antics) just wish that the "once I am awake I am awake" would sometimes leave me alone...it's just the 3 hours of sleep for me today! x
 
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Scolleen

Member
Messages
19
Type of diabetes
Type 1
Treatment type
Pump
Dx when I was 20 and was in good shape and health at the time. I did not have any symptoms and it does not run in my family. I found out through a pre employment drug screen and was advised that I maybe had it for only 3 months or so before being dx. I did have a trauma/accident about 3-4 months before but they could never confirm if that is what caused the diabetes or not. Still feeling lucky that I found out when I did tho.
 
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12
I think I had diabetes all my life but was never tested for it .Had a medical 4 years ago had high blood pressure so got a test done was 38 HBA1c but had no symptoms .Was type 2 for 9 months now type 1 is that rare

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catapillar

Well-Known Member
Messages
3,390
Type of diabetes
Type 1
Treatment type
Insulin
I think I had diabetes all my life but was never tested for it .Had a medical 4 years ago had high blood pressure so got a test done was 38 HBA1c but had no symptoms .Was type 2 for 9 months now type 1 is that rare

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Were you misdiagnosed as type 2 and told you are type 1 following cpeptide and antibody testing? Or were you diagnosed as type 2 and put on insulin?

If you had hba1c of 38 and no symptoms four years ago, I don't think you can suggest you had untreated undiagnosed diabetes at that point.
 

paganlass

Well-Known Member
Messages
125
Type of diabetes
Type 2
Treatment type
Diet only
Dislikes
nhs. religion for the sake of it.
Diagnosed type 2 in July. Had no idea it was routine blood test. But wen I think back my only symptoms were blurred vision off and on and tiredness. But I put the tiredness down to running round all day looking after my disabled husband and doing everything. My hba1c was 94. Since diagnosis I have lost 16 pound and got my bloods down to 5.6-6.1. On lchf diet. No more tiredness and no more blurred vision.
 
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When I was tested 4 years ago my sugar levels were 38 and no symptoms they said I was type 2 but the nurse said I would be on insulin with in 9 months she was right a I am 53 years old and have all ways been fit
 
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catapillar

Well-Known Member
Messages
3,390
Type of diabetes
Type 1
Treatment type
Insulin
When I was tested 4 years ago my sugar levels were 38 and no symptoms they said I was type 2 but the nurse said I would be on insulin with in 9 months she was right a I am 53 years old and have all ways been fit

Are you talking about a hba1c of 38? Or blood sugar level of 38?

A hba1c of 38 is a normal non-diabetic result. Whereas, a blood sugar level of 38 is extraordinarily high, definitively diabetic level.

Being on insulin doesn't make you type 1. It is possible to be insulin dependent type 2.

Were you initially misdiagnosed as type 2 and further investigation in the form of GAD and cpeptide testing showed you are type 1? Or were you diagnosed type 2 and put on insulin to treat your type 2 diabetes?
 
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I was on tablets for type 2 the tablets stoped working and doc out me on insulin as he said my Pancras as stopped .I don't no what GAD is or cpeptide is i was not tested for any of them as far as I no
 

MagicFirefly

Well-Known Member
Messages
64
Type of diabetes
Type 1
Treatment type
Pump
Dislikes
Dangerous drivers
Marmite
I was 9 when I was diagnosed. I had the usual symptoms, nausea, unquenchable thirst, constant urination, stomach ache, exhaustion, loss of appetite, weight loss.
My mother suspected it but didn't want to appear to be an over bearing mother by taking me to the gp. It wasn't till I had weird spots appear over my body, mostly abdomin that she took me and mentioned the other symptoms. My gp asked for a urine sample and then sent me to Alder Hey Children's Hospital without really saying what he suspected. I was hospitalised for 10 days, partly due to a bout of gastro I picked up from A&E.

I do think I'm extremely lucky. As a child, we were given loads of support from the diabetes team Alder Hey. From the ward staff to clinic staff. We saw the specialist nurse, a dietician who explained carb counting, the consultant who I will never forget and highly experienced and skilled ward staff who were able to answer any queries in between.
Now that I'm in adult clinic, I have no issues here either. If I need any support, I simply ring the clinic. My gp I have full faith in because he also specialises in endocrinology so despite whatever else I see him about, he asks how it's effecting my diabetes. I feel totally comfortable talking to him about anything.

Some of the stories I've heard about poor diabetes care, especially after diagnosis, really worries me. Do professionals expect that because we're adults that we automatically know it all? That the diagnosis would not make us feel like the world caved in? There are still so many myths and ignorance about diabetes. Education is key. Why is this not happening? I read a report a little while ago that basically said GP's were failing at diabetes care.

A guy I know, diagnosed with type 1 from GP 8yrs ago. Never been refered to the hospital. Also never been to gp regular to have his hba1c done. Didn't even know what that was till I told him. How many other people are the same?
 

chewy22

Well-Known Member
Messages
51
Type of diabetes
Type 2
Treatment type
Non-insulin injectable medication (incretin mimetics)
I had lot of medication so reckon it was hiding it as I just had backache no other symptoms but suffer from osteoarthritis of back neck and knee for yes. But when my dad died suddenly in September 14 2014 I was suffering with back really bad. And my own doc was on holiday so relief doc said could be kidney infection so was going to blood test this was in Dec and in-between my own nurse came back and said il do diabetes test I said don't be daft I've just have backache. But Christmas eve I got result was type 2 my readings was 25. Im struggling alot at min as was given appointment to see our diabetic clinic but was cancelled now been told have to go back on waiting list. This is since April. Im on 3 metformin 2gilizade in morning 1snd half at night and 2 sitagliptin a day and it still in the 10 /11. I have cellulitis and LymPhoedema so everything is getting me down. I find if I don't eat sugars are low but cant not eat I've cut bread pastry certain fats. Daft a

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catapillar

Well-Known Member
Messages
3,390
Type of diabetes
Type 1
Treatment type
Insulin
I was on tablets for type 2 the tablets stoped working and doc out me on insulin as he said my Pancras as stopped .I don't no what GAD is or cpeptide is i was not tested for any of them as far as I no

Sounds like you are a type 2 diabetic on insulin?

A GAD test is a test for the antibodies associated with type 1. A cpeptide test tells you if you are producing your own insulin.

Sorry for derailing, and sorry that my interfering doesn't get you any closer to how long you might have been diabetic pre-diagnosis. Especially without clarity on what the result of 38 four years ago is referring to.
 
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I thought that type 2 was controlled by tablets and type one by insulin. I was on tablets but they stoped working. I was told to keep my sugar levels around 10 . 12 anything below 8 . I get symptoms of hypo
 

catapillar

Well-Known Member
Messages
3,390
Type of diabetes
Type 1
Treatment type
Insulin
I thought that type 2 was controlled by tablets and type one by insulin. I was on tablets but they stoped working. I was told to keep my sugar levels around 10 . 12 anything below 8 . I get symptoms of hypo

Nope. Whether you are on tablets or insulin is how you are treating your diabetes. How your diabetes is treated doesn't determine what type of diabetes it is.

Type 1 is a autoimmune disease - where your immune system kills off the insulin producing beta cells in your pancreas.

Type 2 doesn't turn into type 1 because you need to inject insulin. A type 2 diabetic might need insulin and that means your pancreas has stopped producing enough insulin due to the type 2 damage, the insulin producing beta cells get worn out by trying to produce enough insulin to keep up with insulin resistance (is my massively over simplistic understanding).

Getting symptoms of a hypo at 8 is a "false hypo". Normal blood sugar is 4-7. A person should feel normal at these levels, if you don't, that's because your body has got used to running high so it takes a bit of time and gradual readjustment to get used to running back at normal levels by gradually bringing you blood sugar down with the support of your healthcare team. If you've been told to keep your levels 10-12 that's probably because you are new to insulin and they want to get you over those false hypos by bringing your blood sugar back to normal, slowly and cautiously because the false hypo aren't very nice.