What was your diagnosis experience like?

[Iamoverhere]

What was your diagnosis for type 1 like? Mine was pretty stressful - diagnosed 8 days before my first international holiday. The nurse wasn’t really much help. She gave me my insulin and a leaflet and told me to come back in four weeks time I found the whole thing really stressful. I didn’t find the care I received very kind or inclusive either. I wondered if other people experienced different things or a similar experience to me?

 

[Marikev]

Hei, I have seen a few type 1 diagnosis stories on You Tube and they seem to be the more ‘dramatic’ ones, involving hospital stays, drips and sometimes ICU. I’m sorry yours was such a negative experience for you.
Being diagnosed with any serious/ chronic condition I guess tests our fortitude and response mechanism. What is that line ‘no body ever expects the Spanish Inquisition‘. Type 1 diagnoses often seem to come out of the blue it seems. Whatever else I thought was wrong with me type 1 diabetes was nowhere on the list!
There‘s a lot to take in and learn about this condition and what we previously knew about Diabetes is never enough to actually learn to live with it. It ain’t going to go away.
For me it was a kind of relief to find out what was wrong with me, I had been back and forth to doctors for 3 years trying to find out why I wasn’t well.
One of the doctors in the ER room told me I would have to take insulin for the rest of my life and I asked her, rather pathetically, if I lost some more weight, exercised a bit more and ate more sensibly..could I quit the insulin? She thought for a few moments and said.. NO! They told me I had diabetes but were trying not to put a label on it till the blood test results came back..2 weeks later, the day before I was due to leave on an overseas trip.
I was told over the telephone that I had type 1 diabetes and the senior doctor who made the call expressed his sympathies, which I didn’t quite understand at that point. One of the nurses in the ER room had told me the best thing to have with diabetes was a good GP, at the time I had an excellent one, who even called me while I was in hospital to see how I was getting on. My current one is still sceptical that I even have type 1. My age and body shape would be a much better fit for type 2! The diabetic specialist nurse at the surgery has told me ‘it’s my diabetes’ so I need to deal with it… I guess it’s an odd condition in that we can chose how we treat ourselves, the medics give us the basic tools and let us get on with it for the most part.
I went on my holiday, with 14 year old grandson to ‘look after me’, his mum gave him a crash course in hypo management and it was probably the best thing I could have done. Think the alternative would have been to be sat home probably moping and thinking too much .
Wishing anyone who has read this far a good day, best wishes from southern Norway.

 

[becca59]

54 pretty unwell. Rapid dramatic weight loss. Extreme thirst. Itching skin til it bled. Severe cramp. Type 2 diagnosis by Gp. 3 days later in A+E on a drip. Those were the worst bits. The consultant on A+E call was the person who became my diabetes consultant for the next 10 years. The clinic I attend in Leeds is brilliant with supportive staff. The next day I was carb counting and insulin injecting with daily phone support from a DN. A month in I went as a staff member with 30 children abroad on a trip. I managed pretty well. The DN told me to do my best. Do not worry about being high. Better to be high and cope than hypoing. Best bit of advice she gave me. 10 years later my care is still through the hospital. Have a new consultant who rang the other week and sounds lovely. Closed Loop is their aim for all the patients who want it. It won’t be quick but it’s coming.
Diabetes is all consuming, but I believe being given the tools and support at the start, to get on and deal with it, helped enormously. That and a brother who was already 32 years Type 1, so family had also been there and got the T-shirt. And a brilliant amazing husband who supports my daily trials and tribulations.

 

[In Response]

My diagnosis?
It started on Boxing Day travelling to my SIL. I needed a wee en route which is unusual for a 2 hour journey. Then, when I got there spent 3 days and nights walking past the smelly cat litter outside the bathroom door.
Looking back, it probably started earlier. I had had a virus. Become run down and tired.
After the New Year, I went to the walk in clinic and met the newly qualified GP. Told her about my constant weeing. She told me I experienced a burning sensation each time. I didn't but she wasn't listening. She gave me a prescription for antibiotics for a UTI and sent me on my way.
After a hiking weekend in Snowdonia (with more frequent wee breaks behind bushes - but, at least there weren't many other hikers around in rainy January), I went back and saw a different GP. She listened to me and suggested a urine test. The words "urine test" are a trigger for my bladder to dry up. But as I knew that was not the cure, I drank a pint of water and, eventually filled the cup. A test showed glucose in my blood. I had diabetes and, according to the doc, I was "too slim to have type 2".
I was booked in for a blood test and an appointment at the diabetes clinic the next day where I met my DSN and endo. Was given Insulatard mixed insulin and blood test meter.
I was not told a target BG but she called every day for a week and adjusted my dose.
I returned after 3 months, told I was doing well and switched to Lantus + NovoRapid but on fixed doses.
I started adjusting my doses and after 3 years saw a locum endo who, after pointing out I had gained weight (but still had a healthy BMI unlike him), suggested an insulin to carb ratio of 1 to 15.
I gradually increased this to about 1 to 12.
Twelve years later I attended a DAFNE course where I learned very little but was then entitled to a pump.

 

[Ushthetaff]

My T1 diabetes diagnosis was in 1980, I remember about 2weeks before I went to doctor, I was drinking loads peeing loads lost loads of weight etc etc etc , went to docs took pee sample then told you’ve got diabetes, don’t remember any blood test , was given a piece of paper with foods I could eat ,basically lettuce, an appointment was made to see consultant , after 2 weeks of hell ( feeing like **** still sleeping losing weight and generally feeling like ****) I saw consultant , he told me I knew you were diabetic before you came in as I could smell you standing outside my door, then taken into hospital for 2 weeks to be “ stabilised “ , was given a syringe with insulin in it told put that in you leg and that was my “ training” remained in hospital for 2 weeks then home and out into the real world armed with not a lot the rest was a huge learning curve . In comparison to today I should imagine quite brutal but definitely character building . Back then there was onlyT1 or T2 and no bs testing unless it was done in hospital

 

[Nicola M]

This isn't my story per se as I was so young but it is the story of my diagnosis. I was diagnosed a week after my first birthday in 1998 and I've asked and asked and asked about my diagnosis many times from my mum/dad so I know it like the back of my hand.

A week after my first birthday I was unwell and my mum thought I just had a virus, I was tired, peeing a lot and drinking a lot. She'd called the local GP in the morning who didn't want to see me as they believed it was a virus but said if things got worse to call again. My mum put me down for a nap in the afternoon but then went to check on me as I suppose mother's instincts she was worried, I'd been sick in my cot and was looking a lot worse than in the morning. By this point the GP was closed so she called out of hours who told her to take me to a walk-in centre. I was seen straight away there and my mum was told I'd need to be instantly blue-lighted to the hospital, they didn't explain anything as to why so off we went my mum was very worried by this point. Once at the hospital, a lot of doctors/nurses hooked me up to drips etc and I was moved to the ICU where my parents were finally told I had diabetes. To say it came as a shock was an understatement. My mum always likes to tell me how my first diabetic nurse (a man) was absolutely lovely and took my parents through everything they'd need to do, including the classic injecting into an orange and then into his arm for practice!

There's all sorts of insulins on my records from when I was diagnosed, couldn't tell you what any of them are but there are lots of humulin's with various fractions (30/70, 20/80, 10/90) and my first BG meter was a Glucotrend colorimetric. I wasn't moved onto Lantus/Levemir and Novorapid until I was 10.

 

[Juicyj]

Mine happened on a holiday too - we were off skiing and drove to the Alps in a convoy of cars and so every time I had to stop for the loo so did everyone, which was most service stations en route to the alps and back again, but that week I felt utterly exhausted, no energy lost loads of weight, got a nickname of Mrs Stickymouth as mouth was so dry I could hardly talk without a drink in my hand, the day I arrived home went straight to the GP and wrote down a long list of symptoms, GP looked over the moon when he proudly declared that's diabetes and that's type 1, I crumbled as I knew how devasting it would be, straight to hospital and onto insulin, the nurse wasn't very helpful as stated I needed to keep my BG levels in a range of 5-9 mmol/l or something similar, which on diagnosis was a completely unrealistic target and this contributed to my depression as was unachievable. I hadn't felt well for ages, had suffered labyrinthitis for a while which left me feeling really poorly and that didn't come back again after diagnosis, but have since been also diagnosed with hypothyroidism which goes hand in hand with auto immune conditions. First year of diagnosis was a deep depression for me, lucky to have had some amazing DSN's who've been rocks though, now using Tandem Slim with G6 and that's been a great system for me.

 

[ert]

I had stomach pains that lasted for more than 48 hours. My GP decided to test my blood sugar with a finger prick and it was in the high twenties. My BMI was 19 at the time so they assumed correctly with the very high blood sugars, sudden onset and my weight that I was type 1. I tested positive for GAD antibodies and my c-peptide was trace.

 

[ATB123]

What was your diagnosis for type 1 like? Mine was pretty stressful - diagnosed 8 days before my first international holiday. The nurse wasn’t really much help. She gave me my insulin and a leaflet and told me to come back in four weeks time I found the whole thing really stressful. I didn’t find the care I received very kind or inclusive either. I wondered if other people experienced different things or a similar experience to me?

I was diagnosed with T2 first, 6 years ago. Managed well for first couple of years on meds, then control went downhill. I was on holiday August last year, caught a virus, maybe Covid, and my blood sugars went completely haywire. They had been high before but went super crazy, not coming below 20 at all, lost loads of weight Saw the GP when I got back, he sent me for tests and put me on long acting insulin, then when the tests came back, said oh you're not type 2 you're actually type 1 and gave me novorapid too. No training or education, bit I was OK with that. And yeah, I'm doing OK, just had last hba1c back which was 49 so massive improvements. Now looking to fine tune things as much as I can.

 

[scorpius14]

If we're talking the days leading up to diagnosis (T1d), I felt super thirsty and hungover like I had a ton of alcohol the night before (haven't even had any alcohol at all), bearing in mind I was taking in a lot of sugary fluids at the time and progressively felt like I was losing my ability to taste sweet things and water started to taste metallic before I started to throw up at the thought of drinking anything. Had to go straight to a+e and be on a stretcher because I could not walk and had a constant feeling of nausea and need to be sick like a migraine would do.

 

[ROE100]

My diagnosis back in the 80's was a bit strange but it was just the circumstances - Mum thought was I was looking too thin (she was not aware of the constant drinking and peeing and cramp in both legs each night which started during my O'levels final exams - I was enjoying life started college (hated school) first boyfriend and getting skinny (was always a plump kid) - I thought life was wonderful. I think i was really diagnosis over a operating table (i was not present) mum was a theatre sister and mention my weight lost (even though she kept feeding me cakes) and it was suggested i could be Type 1 - she brought home a pee test strip from the hospital - every colour dark and then a call to the family doctor (who was a relative) who then said go to St James and see the main man who was a personal friend of hers and he would look at me. So of to St James no tests were given just a meeitng your Type 1 and here go see the diabectic nurse who will go through everything. And that was it. I continued to see the main man at St James and often went on the days that weren't for diabectics was often got a student being testing and told to look at my eyes as there weren't expecting a diabectic that day they thought i must have something wrong so really looked for issues in my eyes often asking what my issues were as they couldn't find anything - me being me said i can't advise/help.

So yes very strange no tests, no seeing the GP, no hospital admission jsut a meeting - you are Type 1 and bascially here you go.

 

[Iamoverhere]

I'm glad I'm not the only one who has had a rough experience. I find it so crazy I had to get on with it by myself. My sister works in healthcare so I was lucky to have some help!
It does feel like it is here you are and off you go.

 

[samwisegc]

My diagnosis was FUN. I am a 35 year old and was relatively healthy I went for a walk to the shop to get some stuff and when I was walking back I couldn't breathe it took me 30 mins to make a 5 min walk got home messaged my best friend and asked them to take me to hospital and passed out in their car I remember only snippets like when they got me into the wheelchair and a nice older lady helping me pick my water up then I woke up the next day and was told I have diabetes nothing more complicated which in hindsight I'm glad they didn't try and tell me more I wasn't fully with it and I wouldn't have understood later on I found out I went into DKA and am type 1 the second most terrifying thing that has happened to me

 

[Circuspony]

In my early 40s, it was summer so drinking a lot seemed fine (& then obviously needing the toilet a lot because I was drinking a lot). I also started losing weight and I didn't really have much to lose - so having more sugary stuff to help the weight gain. My friend had been away for a couple of weeks and when she came home she was horrified by how thin I'd got and persuaded me to see a GP. I later found out she was worried about cancer.

I'd actually been to the GP about 3 months earlier complaining of joint pain and swollen hands. If only they'd done a finger prick test.....

I'd also been to the optician complaining about blurry vision but was told it was because I'd missed the previous year's eye appointment and I was just getting more short sighted. In passing the optician mentioned that dramatic changes in vision can be linked to diabetes but I was too thin to worry about that. I did buy a blood test thingy from the chemist but it was one where you matched the sensor to the colour coding and when it came up dark blue that looked like it could either be low or very, very high. As I obviously was too thin to have diabetes I ruled it out.

I had a phone consultation and the GP was obviously concerned enough to ask if I could come in just before they shut up for the evening. He dipped a stick in a urine sample and did a double take. He then did a finger prick and it just came back as HIGH. He then dashed off to get the nurse's machine and that also said HIGH. Ketones (I didn't even know what they were) were about 5. He did mutter about sending me to A&E but I said I felt alright so instead he asked me to come back first thing in the morning for blood tests.

Those blood tests took 48 hours and my hba1c was 148.

They still didn't send me to A&E!! The diabetic nurse was involved by now and was convinced because I was 43 I must have type 2. I think she may have done a double take when the skinny lady walked into her room but she persisted with prescribing gliclazide, but did at least give me a BG machine. I went back 3 times over the next fortnight and they just kept increasing the dose. August bank holiday turned up and by the Tuesday I felt so ill I phoned the GP surgery again to get another GP who said "I don't know much about diabetes but you have an appointment with the nurse on Thursday so why don't you wait until then".

On Thursday my BG readings were still HIGH on her machine so finally they told me to go to A&E. One set of bloods at A&E and it was like a scene out of ER where the consultants come running. Apparently the last person with a Hba1c at my level went into a coma.

Fortunately for everyone I am extremely exercise sensitive so that had likely helped with keeping my BG rises from killing me.

Can't fault the diabetes team at the hospital because once I was in their system they looked after me properly. I have no idea if they ever spoke to the GP surgery but the consultant was furious that they hadn't referred me straight away.

 

[Tannalla]

Choatic, in a word. I was 19 and at uni and feeling awful. I was losing weight, sleeping all the time, I looked grey and was struggling to function. I went to my uni GP and she felt worried enough to send me to hospital. I spent several hours at the hospital where they asked a few questions but didn't really do anything, to be told that I was living the student life too hard and to calm down and stop going out drinking. Cut to several months later with my symptoms getting worse and down to 8 stone I developed a kidney infection which would not clear up even after 3 courses of antibiotics. My little local backwater town GP says he thinks I might be diabetic so sends me off for a glucose tolerance test. God I have never felt so horrible. Within 10 minutes of drinking the glucose solution I was barely conscious so lo and behold, they tell me I am in fact diabetic. I went to see the consultant who looked me dead in the eye and told me that based on my appearance, the blood and glucose test results I probably had little more than three months left before being very seriously ill and potentially dying. He was gobsmacked that the orignal hospital had not picked up on my symptoms as they were all classic warning signs. (Bear in mind the original hospital was a large well known university teaching hospital, I won't name names.) He immediately made me an appointment to learn about insulin, injections etc. However, the doctor I was supposed to see ended up getting into an accident so I had to go into hospital to be taught by the diabetic team. It was awful. I saw one nurse in the whole 24 hours I was there who gave me a cursory lesson on injecting and then left me to it. My follow on care from the orignal hospital was sketchy at best. I had to make several complaints to PALs as I was not receiving check up appointments or consultant apointments. I chased for well over 18 mmotnhs at one point just to see a diabetes nurse! To say my early diabetes journey was traumatic is an understatement. It has definitely had a knock on effect for my whole diabetes journey.

 

[Lee Welton]

I was diagnosed in 1982 aged 7. Diabetes or 'the sugar' as it was known then wasn't well known and I was ill at home for 7 days, had been seen by two doctors and told it was a virus, drastically losing weight, sleeping, peeing constantly and very sick until a locum doctor came out and within 5 mins rang an ambulance, told my parents to get my stuff together and I'd be blue lighted to A&E. He said I was very sick, needed a drip and intensive care, and if I survived the night I'd be OK. I don't remember much after that apart from bright lights, sucking ice cubes, pipes and wires everywhere and the Green Cross Code man visiting me during the night from a bright light and set if white stairs from the sky ! Weird !! I spent 7 days in the children's ward, received no training or information that I can remember apart from how to inject an orange. I was sent home eventually, lasted 2 days and rushed back in. Luckily, and I don't know how, I made it through teenage years and finally learnt about control, insulin and looking after my levels at about age 24. I'm 50 now, luckily with no serious side effects to date and I'm very strict with my CGM insulin regime. How I'm not suffering from all the years of self abuse due to no control I do not know. I'm incredibly lucky but hope that my experience is now a thing of the past and anyone newly diagnosed gets all the help, advice and support I missed out on.

 

[JanieMc]

What was your diagnosis for type 1 like? Mine was pretty stressful - diagnosed 8 days before my first international holiday. The nurse wasn’t really much help. She gave me my insulin and a leaflet and told me to come back in four weeks time I found the whole thing really stressful. I didn’t find the care I received very kind or inclusive either. I wondered if other people experienced different things or a similar experience to me?

In 1974 I was 8 years old. My mum’s dad and brother were both diabetic. She recognised the symptoms in me. My thirst, going for a wee half a dozen times in the night, being so pale and drinking so much milk or pop. Yet I was skinny. She took me to the doctor and explained her concerns. The blood test result a couple of days later was 28. I went straight into hospital. Over three weeks in there I learned how to inject insulin ( those old heavy glass and metal syringes with needles that you’d use until they went blunt). I learned about counting carbs and complications that could occur if I didn’t ‘behave’.
In those days everything was regimented; a set amount of insulin at specific times and a set amount of carbs to match. Needless to say, it didn’t work. I was really conscientious but not balanced. They blamed me and my parents to the point of threatening to have me put in care. A chemistry/ biology expert friend of ours intervened with a warning letter to my doctor, who then backed down with the threats. If there was no way to test and quickly correct your blood sugar levels, if setting insulin amounts and carb amounts didn’t factor in day to day energy use or hormones or any other of the factors that determine blood glucose balance then the doctor was on dodgy footing.
It took until the 90s really before things started to get better; Faster insulin, blood glucose testing machines and the new approach of matching your insulin to whatever you were eating, DAFNE, sensors, pumps - loads of stuff now. This has fixed me. It’s my 50th anniversary this year and I am fit, healthy, exercising and consistently 93% in target. The doc tells me that he has no advice for me - I’m beating all the algorithms apparently. So I plod on. I’m still here. Yay!

 

[garethj101]

Horrendous. I had a battery of tests and wasn't told what they were looking for. I then received a phone call from a GP I didn't know who bluntly told me "we've got your results back and as you were probably expecting it's type 2 diabetes". I was in shock. No-one had mentioned the possibility to me, and as at that time I was an NHS Commissioner of health intervention services, I wasn't ignorant of diabetes. He couldn't get off the phone fast enough and I was left without anyone to speak to.

 

[Grant_Vicat]

My mother told me that I had been very active and suddenly started to lose voltage. I was badly sick and the Hospital thought it was asthma, because I was very thin and blue. A student nurse had listened to all the details given by my mother. "Can I have that nappy please?" The rest is history. Thanks to Kathleen Thornton who passed away in 2011.

 

[Marikev]

My mother told me that I had been very active and suddenly started to lose voltage. I was badly sick and the Hospital thought it was asthma, because I was very thin and bl n had l to all the details given by my mother. "Can I have that nappy ple?" The rest is history. Thanks to Kathleen Thornton who passed away in 2011.

@Grant_Vicat your signature says you do not have diabetes? Or is this the diagnosis story of someone else?