Age at diagnosis of type 1 diabetes only please

[Ally beetle]

I Just thought this may be an interesting poll and wanted all type 1 diabetics to tell us what age they became diabetic, the reason the think they became diabetic and what your levels were if you can remember, if you could give us a brief description of how long it took you to get on top of diabetes if you have and any other useful info that would be great.

If you read this and feel left out as you are not type one I am doing the same poll for type 2 diabetics and other types of diabetics

 

[Radders]

Diagnosed at 29. I had been suffering from flu so maybe that was a trigger, and I definitely have it in my genes although not in my immediate family. I have no recollection of what my numbers were since they meant nothing to me at the time.
I didn't get taught to carb count and so I can't really say I got on top of things until I was in my forties, although I coped. Had some very hairy moments!

 

[Sprogladite]

I was 7. Absolutely no family history of diabetes of any type in the family and not a clue what caused it. I don't recall what my numbers were but I wasn't taught to carb count and actually was actively encouraged to eat carbs because this would "stabilise" my numbers. It wasn't until a couple of years ago when I started showing signs of retinopathy I started taking it seriously. Now on a quest to get a pump 🙂

 

[Robin]

Diagnosed aged 51. HbA1c of 16.1% ( 152 in new scale).
Went to GP because feeling tired, losing weight, peeing for Britain etc.
Misdiagnosed as Type 2, put on Gliclazide, which did nothing for my levels,( Liver function tests suggested problem, so Metformin not allowed)
Referred to hospital, eventually seen 3 months later, put on Metformin as LFTs back to normal, hospital didn't query Type 2 diagnosis
Seen 3 months later, background insulin added, given GAD antibody test as hospital beginning to suspect wrong diagnosis.
Back to hospital 3 months after that, OK, you're Type 1, stop taking the tablets, go on to basal Bolus regime.
The total timescale took a year, during which I hardly dared eat any carb.
Great grandmother has diabetes listed as cause of death, but don't know any other family member, though we do have other autoimmune conditions scattered round the family. ( Rheumatoid arthritis, Crohn's etc)

 

[AJLang]

Diagnosed when I was 2. No family history. No obvious trigger. No idea what my levels were. My GP told my mum there was nothing wrong and I was acting like I was because of being jealous of my brother. Very lucky, and thanks to my wonderful mum, that I was diagnosed after an emergency admission to hospital.

 

[Ally beetle]

I was 32 I think. I became diabetic when I gave up smoking and took a tablet called champix to help so the tablet may have caused it I do not know I yellow carded it just in case.

My blood glucose level was about 30 mmol when I tested it at work and ketones +++

It took me about 2 years to get on top of my diabetes but I still have blips when I go off the rails. The turning point for me was when I did a carb counting course and got accu-chek expert meter then got a pump and that was amazing. I have used a freesyle libra and loved it but could not continue because of the cost I am looking forward to the time I can have a closed loop system.

 

[trophywench]

Mike - Everydayups&downs - did this a few years ago before he took part in the panel that updated the NICE Guidelines for T1 at the time.

Then it was pretty equally split between under 20 and older. Be interesting to see what the further split brings now!

I was 22 and been married 15 months - I've always joked that getting married caused it - but at the time they had thoughts that it could have been exacerbated by the bad bout of gastro-enteritis I'd had in the February - all this 'new' stuff about gut bacteria etc isn't new at all - just better defined.

 

[Matt Cycle]

I was 18, 2/4/86 (I knew it was April but thanks to Google I could work out the exact date 🙂). No idea what caused it, it was certainly bad luck on my part 🙄 - the only relation my Mum knew of with it was my first cousin twice removed - must have been early days of insulin, but not exactly a close relative. I had all the classic symptoms which came on rapidly and I tried my best to ignore, well I had A Levels to study for 🙄 and ended up in hospital with DKA. 😱 Not sure what my levels were at diagnosis but I have a recollection of my GP who later told me I would have been dead in a day or so if I hadn't gone to see him when I did saying 40 something but I can't be certain about that.

Started off on carbohydrate exchanges (10g CHO) and twice daily Humulin I. Switched to the relatively new MDI after a year in 1987 with Actrapid and Ultratard and my DSN was great but had to work some things out myself. Finally went on a carb counting course last year (after 30 years of T1). Diagnosed with background retinopathy around 5 years ago but apart from that and hypo awareness issues I think I've got a reasonable handle on it. 😉 Due to go on the pump anytime soon.

I read somewhere the average age of diagnosis for T1 is 14 so I'm not sure you'll get a representative view of the T1 diabetic population as there seems to be a higher proportion of adult diagnosed T1/LADA on the forum than would be expected.

 

[Lisa66]

I was 11. No family history and also no idea what my levels were. Suffering the classic symptoms of excessive thirst etc. Admitted to hospital after results came back to gp. I guess I got on top of it pretty swiftly. Sent home after week or two in hospital and got on with it. Fixed doses of insulin to match fixed carbs. Taught to carb count from start.

 

[Sally71]

My daughter was 6 - we think a nasty virus triggered it, although we also have family history, my mum is T1 and she had an aunt who was also. I knew a few weeks before that something wasn't quite right but thought I was being neurotic at first, and will always regret not taking her to the doctor a bit sooner given what I knew about the symptoms of T1. Although I actually also knew hardly anything about DKA and how quickly children can deteriorate when they have it. When I finally got her to the GP he had his T2 head on and insisted on a fasting blood test (DSNs since told me that he really should have just done a finger prick then referred her straight to hospital if that was anywhere above normal). Fasting blood test came back at 18, finger prick was then done and that was off the scale (+33), lab test at hospital came back at 46 and she was going into DKA.

We were lucky and have a fab hospital team who are very pro pump, and a trial was just starting comparing pumps with MDI in newly diagnosed children, so we got a pump only 8 days after diagnosis. Trying to learn all about that and carb counting and everything about diabetes in general all at once was pretty mind blowing but somehow we got through it (with a lot of DSN support) and have never looked back. Hba1c has been 51-53 most of the time since, I'd like it closer to 48 but can't quite manage it! I have had difficulty stopping myself from being too obsessive about the numbers, and then get times when my brain just shuts down completely and doesn't want to deal with it at all any more, but most of the time we get on OK. But we now have puberty to cope with... 😱

 

[Greyhound Gal]

I was 45. Had routine blood tests for my psoriasis medication and showed an HbA1c of 123. Was repeated 2 days later with result of 122. GP said she thought T1 and referred me to the hospital. Took 3 months till I was seen there and straight onto insulin- mixed initially and then after finding this forum I requested the change to MDI.
In 2.5 months I'd got down to 61 with just slight changes to diet and insulin, then as my signature shows continued to fall and my HbA1c at the last test was 36. Next one due n Nov.

 

[everydayupsanddowns]

Interesting! There's quite a clutch where I was Dx, but not so many 'classic' diagnoses in childhood. Wonder what makes us 20s lot so likely to join a forum??

 

[Kaylz]

I was diagnosed at 24, Hba1c of 101, was at the doctor for another reason and they did blood tests, they called me in for a fasting finger prick, was told to go back that afternoon to see a doctor, she tested my ketones, not sure what they were but was told I'd need to go into hospital that night, not sure what caused it as I didn't feel unwell at all x

 

[New-journey]

I was diagnosed age 58 and only symptom was that I lost so much weight and muscle. I think I was in denial about other symptoms! I had a phone call late in the evening asking me to urgently come to the surgery in the morning. I didn't sleep as was so scared and next morning was told I had type one and my my blood test was 21. Luckily I had no ketones so just went home armed with a box of tricks which I had no clue what to do with! My first HbA1c was 104 and had to fight to get any bolus insulin, it took seven months. My next result was 49 and has been dropping ever since, still waiting for a course on carb counting but feeling loads better. At first I felt terrified and was so scared, it affected my confidence but now much more confident and the fear has mostly gone. As I have had PTSD (it was triggered again by diagnose) it is important to feel safe and I now do feel safe again. So an emotional as well as a physical journey! Without this forum I know I wouldn't be doing as well as I am. Sorry that was a long answer!

 

[paul.johnson]

Diagnosed 26yrs old on 2nd Jan so lousey xmas and new Year. Had Flu went yellow,peed alot,so drank alot.In the RAF so straight to hospital in Ely and diagnosed
Didnt carb count until a few years ago.Just loaded up with carbs,still do but adjust the amount of insulin.
havent a clue what HbA1c was,

 

[Pumper_Sue]

I Just thought this may be an interesting poll and wanted all type 1 diabetics to tell us what age they became diabetic, the reason the think they became diabetic and what your levels were if you can remember, if you could give us a brief description of how long it took you to get on top of diabetes if you have and any other useful info that would be great.

If you read this and feel left out as you are not type one I am doing the same poll for type 2 diabetics and other types of diabetics

Aged 4 1/2
Mum realised I was diabetic because I was standing on tip toe to turn the tap on and just drinking water without stopping.
When taken to the Dr he told mum she was an over anxious mother with nothing better to do and just to put her mind at rest he would test a urine sample if she dropped one of the following week so mum handed him one already prepared.
One very shame faced GP who couldn't apologise enough, he closed the surgery then and there and took me to the hospital with Mum even stopping at the fire station on the way so dad could be told.
That was almost 53 years ago.🙂

 

[Flower]

I was diagnosed aged 12 in 1978. Really unwell with a flu like virus prior to diagnosis. Stick thin, could hardly stand up. No home blood testing back then so I don't know what my levels were but the gp came and got me from home and took me into hospital in DKA.

A lot of Type 1 in my family, grandma, Uncle, cousin and me. Started on 1 insulin injection a day that you had to religiously feed at the right time, I had a set diet of 110g carbs split into breakfast, mid morning snack , dinner, mid afternoon snack and tea. No correction insulin and fun urine testing. MDI really through me off balance being told to have what I wanted and just inject for it. I was a lot better with a set pattern to follow.

Using a pump has been a life changer. Still waiting for a carb counting course but have picked it up over the years!

Due to complications and no hypo awareness I feel a bit on a knife edge and don't always feel very safe but I keep plodding on and hoping for the best.🙂

 

[Ally beetle]

Thank you to all that have already taken part already

 

[Ally beetle]

Interesting! There's quite a clutch where I was Dx, but not so many 'classic' diagnoses in childhood. Wonder what makes us 20s lot so likely to join a forum??

That is an interesting idea about why so many people are on a forum are choosing 20-29 age range.

 

[Ally beetle]

Diagnosed 26yrs old on 2nd Jan so lousey xmas and new Year. Had Flu went yellow,peed alot,so drank alot.In the RAF so straight to hospital in Ely and diagnosed
Didnt carb count until a few years ago.Just loaded up with carbs,still do but adjust the amount of insulin.
havent a clue what HbA1c was,

The way you got diagnosed is allot how i found out. it just did not occur to me it was diabetes