Diagnosis

[Hollymay589]

How did you get diagnosed with T1 diabetes?

 

[kaylz91]

Elevated hba1c, asked in for fasting finger prick which was raised, asked to go back to see a Dr that afternoon, she checked for ketones which were present so I was admitted to hospital xx

 

[Jaylee]

How did you get diagnosed with T1 diabetes?

Hi,

Bit like an episode of the "Sweeney." Took as a kid to the family GP at the time with the usual symptomatic suspects.
Fobbed off.. Scrawny & dying on my feet with DKA.
Rushed round a kiddie ward for a second opinion by my dad in a Rover 2000. Car dumped by the entrance. Introduced to a sister on the ward after a nurse friend of my mum's took one look at me.
Given a bed for the week & banged on a "drip" with the word "Diabetic" bandied about over my head...

 

[ert]

Severe stomach cramps, blood sugars high '20s, ketones 5, BMI 19 with athlete level low body fat, so was put in for a c-peptide test and GAD antibody test straight away. c-peptide was below 0.2 nmol/l which at diagnosis, is type 1. Initially the surgery, made a mistake on the form and tested for GP2 antibodies and not GAD antibodies, but when GAD was finally tested for later, it was positive.

 

[In Response]

Went to see the doc as I was weeing every 2 hours including through the night.
Initially, I was diagnosed as having a UTI but as things were the same after 2 weeks of antibiotics, they did a urine test and realised I had diabetes. I do not know what my BG was as the surgery did not have a meter to test (it was about 15 years ago).
This made more sense and explained the blurred vision, thirst, thrush and exhaustion.

There was no blood test such as GAD-or c-peptide. The doc decided I must have Type 1 because I was "too slim to have type 2". Not exactly scientific but the diagnosis was correct.

 

[Juicyj]

Came back to the UK from a holiday after losing a lot of weight, no moisture in my mouth but peeing a lot, thrush, dry hands and no energy. Went straight to the GP then onto hospital.

 

[Choosehappy]

I was losing my breath very easily and couldn’t stand for long, really thirsty all the time drinking full large bottles of Coca Cola, Vimto and Pepsi, any drinks I could get my hands in I craved them all. I was getting really skinny too (didn’t realise until hospital told me- I work from home and due to lockdown there was no one around to notice my weight loss of 2 stone making me underweight) i was going to the toilet like 6 times throughout the night and just feeling generally tired and unwell. I didn’t know what was wrong with me as I had been to a and e and they said my blood sugar was high but blood tests concluded no issues.... really bizarre because a month later I was rushed to hospital again with an even higher blood sugar and ketones of 5.5. I was in hospital for days and my new diabetic nurse reported the initia doctor internally through the nhs as she said it was unacceptable that they sent me home with a high blood sugar previously telling me I was fine

 

[JoeyGraf20]

Lockdown happened, gyms closed, so I decided to control my diet a bit better and drink more water. Start losing weight so thought "Great" this is really working! Drinkjng maybe 7 litres of water a day so obviously peeing alot so thought that was helping with digestion hence the weight loss...from March to September lost 4 stone. Too much for my liking but who am I to argue with this God like body I was getting with very little effort

One symptom I couldn't explain was a dry mouth for the amount I drank so on the off chance I googled it "which you shouldn't do as Google will always say you're dying"....turns out....I was dying

GP got me an urgent appointment after being previously told a telephone appointment would take 6 weeks to book. Was admitted to hospital with a Blood Sugar of 38 and Ketones of 8.3 (which is bad apparently)

2 nights in hospital on a drip of insulin in one arm and sodium and potassium in the other and I came out a Type One Diabetic

Been an interesting experience for me but after 3 months and a bit of tweaking with my long lasting insulin, even with it being over Xmas I am getting readings below 5 and 7 for the passed 5 days despite big Xmas meals, desserts, beers

Tip from a newbie to the game: take it seriously, but don't get disheartened...

Its a big change to anyones life but takes time, knowledge and patience. I class myself quite lucky that:
1. I got diagnosed
2. I live in a ages where technology is King (or Queen)

Couldnt imagine this 50 plus years ago so count my lucky stars for technology, research and development

Here if needed anyone

Photos of me in hospital, me in March, August then start December, and my Christmas Dinner and dessert.

 

[Maco]

I was 14 when I was diagnosed, my mam was a nurse at the time & my dads a type 2. I wasn’t showing any major signs apart from drinking a full 2litre bottle of pop a night & going to the toilet maybe 10 times a night obviously with very elevated levels. Went on for a few nights then something clicked with my mam, took me straight to a&e where I was admitted into the hospital for the night. Next day sent straight home with a carb counting sheet some nova rapid & long acting insulin. Steep learning curve.

Wasn’t until I was diagnosed & knew what a low blood sugar felt like did I actually realise that on a number of occasions I had been hypo while playing footy etc.

 

[JaneC]

You sound as though you’re amazingly getting to grips with and even seeing huge benefits post diagnosis, so impressed! Really enjoyed seeing your Christmas meal, delicious and great choice, our diet changes a bit but doesn’t have to be a punishment diet as you've proved. Long may the positivity continue.

 

[karen8967]

I was 49 had a thirst i couldnt quench was constantly tired then lost a lot weight in a very short time ended up in hospital with dka that was nearky 4 years ago.

 

[dje55]

Was 12 years old (over 30 years ago). On holiday in Donegal which involved lots of long walks. Couldn't walk far for tiredness, peeing behind a bush every 10 minutes and unquenchable thirst.

Taken to doc after my sis (student nurse) recognised symptoms. Dipped urine, showed loads of glucose and ketones. Bloods taken - never aware of results. Admitted to hospital next day for treatment and to learn how to be a type one diabetic - can still see the small suitcase of equipment I was given! It held a huge glucometer, disposable insulin syringes, two vials of insulin, mediswabs, cotton wool, finger pricker, spare lancets, a massive tub of test strips, uristix, a diary and Dextro tabs! Those were the days...

Basically had the four classic Ts - tiredness, thirst, thin, running to Toilet.

D

 

[oldgreymare]

With hindsight my first symptom was changed vision age 51 - had to update my glasses prescription for first time in decades. Then after returning to Singapore from a trip to the UK started loosing weight (welcomed at first), increasing thirst, peeing and lethargy. I had my suspicions, but kept putting off visiting my GP as I was still travelling a lot. Finally did make an appointment, had loads of tests for many things - definitive diabetes diagnosis was an oral glucose tolerance test. Referred to a Singapore hospital endocrinologist who put me straight onto insulin for three months (to see if my pancreas was suffering from recoverable Type 2 burnout) before asking for c-peptide and GADAb tests. Sadly result was c-peptide of 0.25 nmol/L = low and GADAb of 76 = roughly 10x normal range, so confirmed as Type 1.

I think I was honeymooning for about another 18 months, but after that totally dependent on injected insulin and had a few DKA episodes until I got my BG levels under better control.

 

[MarkHaZ123]

Wasnt feeling too good so went to the docs. They did bloods and I was referred.
I was treat for type 2 for a year and half before then going onto insulin for type 1 as my bloods just sky rocketed without anything changing. Averaging 15+ daily with 20+ through the night.

Soon back to normal with insulin and good management

 

[TypeZero.]

Around July/ August 2019 I lost small amounts of weight 2-2.5kg which I thought was normal because I tend to eat less on holiday in the summer.

Came back to the UK and was losing about 7-8kg every month from September 2019.

I lost so much weight that my body fat percentage was around 4-5% and my weight loss actually slowed down because I was so underweight.

During this time I had dry skin, fatigue, random muscular cramps in the night, pain in a vein in my leg, lost hair every time I touched my head, extreme insatiable thirst, urinating frequently, facial/body/head hair was taking ages to grow.

I had searched up my symptoms multiple times online and it kept saying I was in diabetic ketoacidosis, me being ignorant I thought there’s no way in diabetic. The funny thing is I did so much Wikipedia research on type 1 diabetes and autoimmune diseases but I was confused so I just left it at that and denied me having it.

I just ignored everything and got used to it. My mum really encouraged me to call the GP so I did (I thought it was a waste of their time to be honest).

Turns out my GP was like a 1000% sure I’m diabetic, he did extensive testing, like 11 different tests, he was so sure that he even did a coeliac test (due to relation with type 1 diabetes).

I got a call 20 April 2020 and my doctor said I’m diabetic and that I need to go to the hospital right now. Me still being ignorant, I went to the hospital thinking they’re just going to hand me some tablets and I’m going to go home.

I see a consultant and he says I need to stay 1 night, max 2 nights. I get hooked up to a saline, glucose and insulin drip. I was so depressed and crying whenever the nurses weren’t there. I was so confused at the time like why me. Basically on my first night in hospital I taught myself everything about type 1 diabetes: antibodies, onset, treatment, risk factors, even potential cures I was so depressed and crying all the time (no exaggeration), because of the sheer sadness my blood sugar was going even higher, in the end I taught myself carb counting and the different insulins - I realised I basically had to starve myself and administer more insulin to leave the hospital. So at the end it takes me 4 days to leave the hospital and I probably would’ve stayed longer if I didn’t go very very low carb in hospital.

Walked out the hospital... first thing I did was inject 2 units of insulin to go from 12 to 6

 

[Fairygodmother]

Same symptoms that the rest of you report, but back in 1969, when there seem to have been fewer T1s, it was horrifically difficult to get a diagnosis. One doc told me to go away and check my faeces for worms, another thought I had epilepsy/pneumonia/diabetes. The latter said this when making a home visit just three days before Christmas; I was bed bound, gasping for breath, very very emaciated. “Will you be here after Christmas?” he asked, “I’ll do some tests then.” I don’t think I would have been, I’d be nurturing the daisies.
Luckily, the next day my mother rang 999. I was slipping into a coma, just about remember an oxygen mask. I was put in the bed next to the sister’s office where the deaths door patients went, and spent the next ten days there.
Thank goodness for the dip sticks and blood sugar meters we have now.

 

[Medina27]

For years I had symptoms of TOO MUCH natural insulin. A symptom still largely unexplained but told anecdotally by some Type 1's. I would get hypo's despite NOT being diabetic or taking any medication

Then I started to get the opposite problem (symptoms of TOO LITTLE insulin) Thrush, frequent urination and thirst etc and was diagnosed as diabetic after a blood test

 

[Seacrow]

In July 2002 my eyesight changed dramatically overnight. I went to Specsavers, and the optician said that was perfectly normal. Coming up to Christmas, I realised I was drinking a lot, peeling a lot, my breath smelt funny and these were diabetes symptoms. No way was I going to be hospital over Christmas, so I made a GP appointment for January. Walked into GPs surgery, said hi, I think I have diabetes, here's a urine sample. GP did the dip tests, said hang on a moment, and phoned 999 for an ambulance (right in front of me!!!). She put the phone down, and said, yes, you have diabetes and are going to hospital now.

In retrospect, I should have gone before Christmas. The GP said later she had such an extreme reaction because both sugar and ketones were off the scale on the dipstick.

 

[Ushthetaff]

August 1980 started drinking lots and lots and lots ! Enough to fill a swimming pool but no matter how much I drank couldn’t get rid of thirst , getting up in middle of night to stick head under cold water tap to drink more! What goes in must come out so
Must have pee’ d a river , my mum took me to the docs and he did a urine test told me I had diabetes, made an appointment to see specialist at hospital, it was in 2 weeks time! He gave me a “ diet “ sheet , which basically said eat salad. I lost nearly 2 stone in the 2 weeks before goin to specialist and I could have slept on a razor blade , went to hospital to see diabetic specialist
I waited outside the door went in he looked at me and said you’ve got diabetes I could smell you outside the door.
I then went straight to hospital for 2 weeks to be “ stabilised” got diet sheet dieticians etc , put on insulin , nurse injected me the first evening next morning was given a syringe told to fill it and stick in in my leg ! And the rest is history. Only sugar free thing I could eat in them days was Orbit chewing gum lol , I did post a good few months an article called “ back in the day “ it’s worth a look if your newly diagnosed it will tell people what it was like pre technology lol
Be well keep jabbing