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Diagnosis: how was it done?

Hello Everyone,

Thank you for the 19, very interesting stories about how you were DT1 diagnosed. I have asked the same question on a similar Australian Internet site, showing already similar trends RE diagnosis.

I intend to make a summary and a draw a few stats from the posts RE T1D diagnosis, and will discuss with you what should be done with such a document. From the top of my head, approx. 50% of the people are not properly diagnosed, and this is more likely to happen if you are an adult. It seems a much too high percentage... If it is OK with you, please keep sending your posts with diagnosis stories, good or bad, whatever is your age.
 
Hello,

I've not posted before but just wanted to post a slightly more positive tale - I guess I was incredibly "lucky" compared to many who've been diagnosed as adults! I had all the standard symptoms. Went to Lloyds for a diabetes test after about a month of feeling rubbish and eventually looking up my symptoms on the web (I thought initially that I was just coming down with flu).

Fasting blood sugar 17.1mmol (had no idea at the time what that meant). Pharmacist told me needed to see doctor. Did so. And have to say, my GP was fab. Ketone test straightaway (ketones through the roof). Initially he said to go to get a "proper" blood test at the hospital, but while I was waiting for that he called my mobile and said that actually he was too worried about how long an official blood test would take to process, and told me to hotfoot it straight to A&E where he'd already called them to let them know I was coming. At this point I didn't appreciate the seriousness of the situation - figured I'd be given some insulin and sent on my way, perhaps. Three days on an insulin drip later and they finally let me out. Which is, of course, exactly how it should have been. And although I didn't count myself lucky at the time, in retrospect what happened to me was several thousand times better than it seems most other T1's diagnosed as adults and even some diagnosed as children have faced.

I can't fault my GP who, by his own admission, knows very little about Type 1 diabetes - but rather than this meaning he dismissed my concerns, he instead erred on the side of caution, and I'm very grateful to him. My status as a T1 was never questioned - I guess the fact I was in full fledged ketoacidosis helped with that at least - but I'm constantly stunned at the number of T1's who are misdiagnosed and wrongly treated as T2's simply because they don't fit a GP's expected demographic.

Of course, the aftercare I received is a different matter (had to teach myself to carb count, and the dietician I saw gave me advice relevant to an overweight T2, and not a T1 verging on underweight) but I can't fault the diagnosis itself and the initial care I was given (although I NEVER want to spend time in an NHS hospital again).

CJ
 
Hello,

I live in the Birmingham area and I have to say the treatment i got was amazing.
I went to the doctor with extreme thirst, he did a urine test and found sugar, 15 mins later he got the nurse to do a finger prick test which was 26mmol/l, he stayed with me for ages even though ht was doing surgery, rang the diabetes clinic and straight away sent me there to the local hospital where i was given advice, insulin etc and saw a dietition.
It was really well dealt with and my doctor rang me every day for the following 5 days to check I was ok and would write me any prescription I needed right away. My diabetes nurse also gave me her mobile number and the number of the clinic and an emergency number for advice.

I hope this restores some faith in the NHS?!

I was really pleased!

Amy
 
I have to say my diagnosis was fairly good. My father was in General Practice at the time so I'd only had 2 weeks or so of archetypal drinking of water, endless visits to the loo (mainly at night, oddly) etc, when I mentioned the symptoms to him. Dad knew what it was immediately, but got me in to see one of his partners the same day, arranged the visit to hospital and told me not to eat any carbohydrates at all (yes that's right, a doctor in 1982 telling a diabetic not to eat carbs...proof that some HCPs DO know what they're talking about!). So my bg level on admission to hospital the following day was "only" 11.5 mmol/l with no ketones.

Not too sure where things went wrong after that, always had quite good blood numbers, but my first complications started only 11 years later...

First "known" diabetic in the family, no history of it going back over 100 years.
 
5 WEEKS thats all i have been in this wonderfull world of diabetes :lol:

after about 2 yrs of no sleep bc of peeing all night, a constant thirst which i thought it was bc of me liking a good drink. i got very sore legs which was neuropathy well nerve damage due too the wastage of fat on my legs it took 2 doctors over 6 weeks to finally get too the bottom of it 1 doctor told me i had to drink full fat milk tae build my legs up lol then i finally got bloods took and 4 hours later i was in the hospital wae a bs over 33 happened on a friday was in and out like a yo yo over 4 days type 1 diabetic now
 
It was my wife that noticed I had lost a bit of weight, and was drinking quite a bit. She was a bit worried.

So I booked my self on of the Bupa Welllbeing medicals that i get through work. I was poked and prodded for a few hours, and my blood and urine was tested. I had a fasting BS of 18. I was refered to my GP, who in turn refred my to a diabetes consulatant. There I was told I was Type I, I was prescribed my bag of drugs, and BS tester and sent home. That was on the 31st March.

Since then I have seen my DSN, been shown how the inject, and my BS levels are dropping.

This has all come as quite a shock, I was not vastly over weight to start with, I regualary go to the gym, and I play rugby.
 
Marky said:
This has all come as quite a shock, I was not vastly over weight to start with, I regualary go to the gym, and I play rugby.Marky74

Hi.
Sounds familiar. When I was diagnosed 11 yrs ago I was fit, healthy, not overweight and generally in all round good health ? So I thought !
After having tests for an unrelated condition I was told I was a Diabetic, T2.

Given loads of advice, diet sheets from Dietician, more advice and there began my 'Road to Hell.' ( apologies to Chris Rea)

Why - all because of that very same advice. Check out ALL the diet advice round here, work out what is best for you in conjunction with a BG meter and testing. Then stick to what works for you. 8)

Just getting into bunker. :twisted:

Ken :D
 
Hi,

I think I started out like many of the other people on here, lots of peeing, drinking and utterly shattered. I lived in a flat with my parents and we were top floor and I couldnt walk to the top of the stairs without having to stop for a break half way up.
i went to Lloyds Pharmacy and got a test there. I hadnt eaten in 15 hours and my BS was 14.8 mmol/l so i was referred to my docs straight away.
i was originally diagnosed with type 2 diabetes in 2004. in 2008 they diagnosed me as type 1 after me struggling so long with tablets that weren't working.

i don't feel that i have received decent diabetes care as my docs and nurses failed to tell me the basics about carbs etc and everything i know i have learned from the wonderful people on here.

i am still having problems trying to cope but at least i have equipped myself with the knowledge of my disease.
 
scottishkate said:
One thing that really bugs me though is that the consultant at the hospital told me not to worry as there would probably be a cure by the time I was 21. He was trying to cheer me up but I clung to that hope for quite a long time. I'm 27 now and am quite ready to be cured now thank you very much!
Katie.
Click to expand...

Lol, I seem to recall one of the doctors or nurses saying the same thing to me. It obviously didn't make that much of an impression on me, since I'd forgotten it until I read your post :lol:
 
my son was diagnosed last year, apr 28, age 13. It started with him drinking lots of fluids and comlaining of being thirsty, he hadnt had a virus or anything like that, just sort of crept up on us. prior to him being thirst all the time, he would make a glass of milk last about 2hrs at tea, same with other drinks, but we noticed he was drinking loads, didnt realy notice the weight loss as he was/is skinny plus he was playing loads of football for his village team

i mentioned to my wife about him being thirsty all the time and that it could be a sign of diabetes (have a friend who is type 2 and he mentioned when he was diagnosed, he was thisty/drinking a load) so i went and got a home testing kit from superdrug and we did two home tests, that showed his blood sugars to be high, so we booked into see the gp

went to see the gp a couple of days later, explained the sysmptons and he got a testing kit out and did a test there and then, meter showed HI, so he asked us to wait in the waiting room while he phoned the hopsital to get him admitted and also to verify the result of the meter reading

went to hospital where they re-did the test and aslo keytone tests. His blood sugar was 27 and keytones were 3, though he wasnt feeling poorly, and that was that, he stayed in overnight and we saw the consultant the next day and came home totaly different

think we caught it early, as he has had a good honeymoon period, nearly 11 months, he was taking no insulin for about 3/4 months last year as his body was producing enough to cope. in fact it got to the stage where the diabetic team werent to sure what was happening, so we had a glucose tolerance test in mar, just so they could see what was going on, but it looks like his honeymoon period has come to an end, though he is still able to bring himself down during the night, so he's on Novorapid prior to meals, varying doses due to carb counting and levemir 6 units in the moring

we seem to be getting caught out a lot more will lows now as well, seems to be having them every other day or so. We keep adjusting the carb to insulin ratio with meals. :D
 
scottishkate said:
One thing that really bugs me though is that the consultant at the hospital told me not to worry as there would probably be a cure by the time I was 21. He was trying to cheer me up but I clung to that hope for quite a long time. I'm 27 now and am quite ready to be cured now thank you very much!
Katie.
Click to expand...

My first consultant told me "in 10 years' time" I wouldn't need to inject every day. Although I don't remember injections being a big deal (was never tempted to skip them, having clear memories of how awful I felt pre-diagnosis) nevertheless I took his statement literally for about 9 years!
 
Around July last year, I started getting extremely thirsty, but a lot of my friends had throat infections and had similar symptoms so I assumed I'd caught it too, so I got antibiotics, then developed thrush, my sister told me that she gets thrush when she's on antibiotics, so I ignored it, then around December, I started to slowly lose appetite, and whenever I craved a drink, it was sugarry. After so many months of constant thirst, I'd just gotten used to the thirstiness and the constant trips to the toilet in the middle of the night.
Then on the 9th Jan 09 I went into my GP because I was deathly pale, I was just sleeping all day, which he thought was normal for a 18 yr old girl :| but I can assure you, I hate lie ins haha. And the thrush had been going on for months. He told me I just had a stomach bug, without examining me, and sent me home with paracetmol and pills to stop me vomiting.
The next day, my boyfriend and his mum came to see me and their faces dropped when they saw me , "lauren, you look like you're dying" needless to say, I was upset haha. I spent the entire weekend drinking orange juice, when on the Sunday morning I woke at 6am and didn't stop vomiting til 10am. Then for the rest of the day, I was sleeping on and off, and vomiting, I couldnt keep water down. Then around 11pm I turned to my mum and said 'i think i'm actually going to die tonight' and she wasted no time in getting in the emergency doc, who tested my blood, which was 29, and i had turned the keytone strip dark purple, which is the highest level of ketones it can measure. I was taken to hospital in an ambulance straight away and spent 12 days in on drips.
Theres my story haah sorry its so long
xo
 
My experience was only two years ago but i remember clearly.

I remember feeling dreadful and tired all the time and finding any moment in the day to nap or sleep, only to find myself waking up in the middle of the night to gulp large amounts of water from the bathroom tap. Eventually i developed thursh which was VERY uncomfortable and would constantly wonder why it was happening to me. The usual symptoms then followed with dramatic weight loss, loss of appetite, a need for sugary drinks to clench my thirst, and i noticed it took me twice as long to ''walk'' home, it was more like a shuffling motion with short and shallow breaths with the hint of peardrops.
My family, my mother in particular, was alarmed at my weight loss always telling me to pull my trousers up and always noticed me disappearing to the toilet after dinner (obviously to pass large amounts of water) however she thought i was suffering with Bulimia! bless her. One day i thought i was poisoning myself with the amount of water i was drinking so i looked it up online only to find a link with diabetes. I clicked the link and identified EVERY symptom on the screen with myself. At that point i told my mum i needed to go to the doctors right away. We went, i gave a sample, the doctor put a test strip in and glanced at me alarmingly and asked if i was feeling alright, to which i replied 'yeah im not feeling too bad' lol she then explained that there was sugar in my urine which meant only one thing. I was sent for a blood test the following day and confirmed as a diabetic later that night with a reading of 27+ i believe, then straight onto insulin the following morning. It was as quick as that, no messing around.


Did anybody notice at how quickly your body took to the insulin before you started to feel 'normal' again?
 
Gosh, most people on here have similar horror stories! I think the NHS should be better trained to deal with us!

I'm in the mist of being diagnosed but have been told I'm by the doctor she's fairly certain I'm a type 1. I was originally told I was type 2. I'm sure that was due to my age. (41 at time of dg) However, I had a very rapid onset, less than 6 weeks with the usual symptoms, extreme thirst, massive weight loss and blurred vision being the ones that bothered me the most.

I thought I had the flu, then that my rheumatoid arthritis was flaring up but when we came home from the grocery store and I downed a whole litre of apple juice the light bulb went on in my head. I called the doctor the next day.

My bg were in the 30's, with ketone's and sugar in my urine. She made me an appt to see the diabetic doctor for the following week and sent me home because as she put it " I looked good in myself" I knew looked like **** and felt like ****.

I went and bought my own bg monitor and started monitoring my levels. Went it went up and wouldn't take it because it was too high I went to the A&E. This was on a Friday or Saturday afternoon. (can't quite remember) I was also having bouts of nausea and vomiting and just not feeling well.

The doctors in the A&E confirmed the diabetic diagnosis and again told me "You look good in yourself" Take some mylanta and see your diabetic doctor at your appt next week." :shock:

I'm surprised I'm still here with the treatment I first received! How I avoided going into a coma I don't know! :?: :!:

I've been on metformin, gliclicide, byetta and novonorm. All except the novonorm worked for a short period a time and then stopped. The dose would be raised, it would work and stop.

The novonorm didn't work at all. My bg shot up into the high 20's. I developed an infection in the nailbed of my toe and lost over 5lbs in one week. I felt and looked like I did when I first got sick with this dx.

I was started on insulin and my bg are more or less under control. I'm still learning the ropes on this. I don't eat many carbs and have had to add them back in. Yuck! plus I'm being tested for coeliac dx. I found once I cut out most of the bread, noodles and potatoes etc.. that I stopped feeling so ill. I've had problems with nausea and vomiting since I've been diagnosed. I've lost about 45 + lbs.

I do feel the care I received was poor and the patient education was/is terrible. This is something (where I live) that needs worked on.

I've enjoyed reading about all your experiences.

Sorry this post is so long. :oops:

Smiles, O'blooming thistle
 
Great post O' Blooming,
a lot of what you say mirrors my experience and many others from reading what everyone else has to say. It is amazing to me that you can be allowed to wander round for so long on the verge of DKA. I look back and shudder! :shock:
 
Hi,

new to this forum and this is my first post. (found this whilst looking for info on pumps).

I was diagnosed 25 years ago at the age of 13.

Like all on here I was thirsty very thirsty, I remember drinking water straight from the tap at school, and if you knew school toilets thats the last place you'd want to drink from, but I was a kid and I had never heard of diabetes or its symptoms.

The bed wetting started, and I was really embarrassed by this and managed to hide this for a while from my parents....its amazing how if you lie on the wet patch for long enough you can dry this out.

My youngest sister had serious digestion problems since birth and she was having various tests done and she was about 4 so my parents had not really noticed my ever increasing thirst as they had been distracted with my sister.

The bed wetting and constant trips to the toilet got worst, and I lost a lot of weight, I had always been thin, but I lost about a stone half, and for a boy who was not over weight before I looked unwell.

I remember I had been riding my bike and told my friends I needed to stop, I got off the bike and bang, the cramp in my legs was unreal, every muscle from my waist, down to my toes had cramp. My legs where just fully locked and I fell over, I was rolling around on the floor in tears due to the pain...trust me cramp in one muscle hurts, but every muscle in both legs was agony.

I couldn't ride the rest of the way home so my friends went for my parents. I think this was the wake up call that I was unwell, they noticed my weight loss, and pale appearance and the thirst and the toilet aspects, combined with the bed wetting and the penny dropped for them. I remember my grandad getting some urine strips from a gentleman he worked with, and me weeing on the strips, sure enough ketones, the number of re tests and family members doing test to make sure that it wasn't a faulty strip, but it was just me who had the strange colour reaction.

The next day I was taken to the doctors, who tested my urine and told my mum that he was referring me to the hospital, and he would send a letter and they would write back with an appointment. Can you believe a postal referral at this stage!

Anyway my mum, had the good sense to take the letter from him and we both went straight up to the hospital. A BM was done and this came out at 33, this meant nothing to me or my mum and the consultant started to talk into his dictophone saying the imortal words "Adolescent Type 1 Diabetes."

Thank goodness for the nurse, a lady called Ina Hampson, who was fantastic, I was taught the diabetic basics and given a glass syringe, methylated spirts and insulin. It was my condition, and I had to do the injection. I was not kept in hospital, as they had the opinion that was not real life, I had to find the right regime for my life. We kept going to the hospital every morning for about two weeks, and I was given the crash course of being a diabetic. Funnily enough I was taught how to count carbs back then, but the carb counting was fixed Eg 40grms for breakfast...no more no less. Sadly Ina was diagnosed with breast cancer within 18 months and died shortly afterwards, but she was one of the NHS stars, I wish I could have thanked her as an adult. How many can remember a nurses name from when they were 13 and now nearly 40.

My parents had a bad time that week at the end of Jan, my youngest sister was diagnosed with Ceaolic's Disease and on the same day them having an appointment to see the dietician for me and then for my sister. It was decided that this was too much info for one day, and they were to deal with my prob and then the following week my sister.

The following december my eldest sister asked for xmas for White bread, as all our diets had switched to high fibre (exception being the Ceaolic who was on her own bread which had to be home made with special flour).

Worst aspect was the unknown, the consultant talking to the dictophone and not me or my mum. The reusable glass syrnge with a needle that looked like a six inch nail, when compared to todays pen needle, and having to compare colours on bm sticks to the side of containers....how far things have come. Thank goodness!
 
Accident really! Two of my adult children suffer from Hypothyroidism through Hashimotos Disease. I had commented to my daughter that I often felt tired and had put it down to age and a busy life style, not really seriously thinking anything was wrong - apart from this I felt fine! Eventually (just to err on the side of caution) decided to visit my GP), Imagine my shock when the results came back and my Dr said there were three issues, diabetes, cholesterol and slight kidney problems. I was shocked, devastated and very upset, I really had none of the symptoms she asked me about, aside of the slight tiredness, have always tried to eat and live a healthy life, and never been overweight, how then could I be a Type 2 diabetic I just did not fit the typical type? I asked for more tests, which my GP agreed to, as even she was somewhat puzzled. Sadly, of course, the first tests were correct. All I can do now is be thankful that I found out in time to take remedial action. This is not something my parents, who lived into their 80s suffered from, no other immediate relative suffered from, I now know my maternal grandmother and an elderly aunt were diagnosed T2, but both (how shall I put this politely), were rotund ladies, I am more my mother's build, her average weight all her adult life was around 7 stone, top weight ever was around 8 stone!

After 18 mths, I still feel this is a big mistake - I know it isn't. but it is a feeling of 'diabetes has picked the wrong type' - that may sound riduculous, but that is how i feel. Even the new advert on TV aimed at children tells them if they are overweight, eat junk food and don't exercise they are liable to suffer from all klnds of later life diseases including T2 diabetes and I feel like saying, 'Yes, but that wasn't me as a child', it is as though they are saying this is the punishment you get for the way you live now, and this is not always the case! I am sure there are other T2s like me, but no way had I suspected diabetes 8). Not moaning, just still, somewhat perplexed.
 
Oh, and by the way, want to say how great it is to have this site to share experiences and problems with, sometimes have a moan with, to empathise with and to try and support others with - thanks to one and all :D
 
I was really thirsty and started to get up in the middle of the night multiple times to go to the toilet. Went to my doctor for a thrush remedy and at the end of the appt I mentioned I had these symptoms for the last couple of weeks. She said it's probably nothing but to get a blood test because it could mean I had diabetes.

Being a fit and healthy 24 year old I thought nothing of it, never been ill before so I didn't get my blood test dome for another week or so.

Finally took a morning of work to get the blood test as the symptoms mentioned above went from an 'annoyance' to me needing to take a bottle of water with me EVERYWHERE and getting up 2-3 times a night.

I was due to go to Italy on a business trip for a week and the day of my flight I started to get tired walking up a flight of stairs and feeling generally ill. I looked up the symptoms online, unfortunately I had pretty generic 'flu like' symptoms and thought it'll pass in a couple of days like every other time...

Got to Italy on Thursday evening, worked Friday and had to leave wary as I was falling asleep. Went to Milan sightseeing on Saturday but had to come back early as I was sooo tired just walking around. Spent all day Sunday in bed and my mouth was so dry that if i didn't have a sip of water every couple of minutes I couldn't swallow! At that point I thought I better go home. I jumped on a plane home and went to my local GP on Monday lunchtime. He sent me straight to A&E in an ambulance as I had moderate-severe diabetes ketoacidosis. I had a BG of about 30ish and Ketones at a 'very dangerous level'

The consultant said he had never seen anyone in my condition not in a coma let alone still standing.

I was put on a drip of saline and a sliding scale of insulin. HAd to take the most disgusting potassium tablets and was subjecting to a number of various test for 4 days. After a couple of chats with the DN, and a big bag of 'goodies' I was let loose.

I'm just glad I came home early, was meant to be in Italy for another week - by which time i would have either been dead or in a dodgy Italian hospital not able to speak a word of Italian!

No real complaints about the NHS, apart from all the trainee doctors who make a real pigs ear of taking blood. Both my forearms were bruised for at least a week after leaving the hospital...

Sorry for the long story! It is good to have somewhere to vent though...
 
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