Diagnosis: how was it done?

[Pinson]

Hello to All,

I would like to ask you all : how was the diagnosis of your T1D done?
For us, it was not very good, so I would like to know if what we went through is often observed or not.
My child who is now 12 yo, was diagnosed 6 years ago. As parents, we observed the classical symptoms: extreme thirst, going to the toilet all the time, irritability, loss of weight, sunk eyes. I could see my child was not well, so I looked in my family medical book and suspected my child had T1D. We took him to our GP, and decided first not to mention our suspiscion. But I told him that there was not one bed sheet, blanket, or towel dried in our house anymore, and that my child, at the age of 5, was drinking over 2.5 l of water per day. He suggested we should make a chart and give our kid some stickers if he would not have a wee during the night.
We then said to him we had thought about T1D, which he rejected. We asked for a blood test, he refused. We demanded a blood test, and he sent us to the lab. 4 adults sat on my screaming child and we managed to take a blood sample, whidh revealed a BSL of 22 half a day later. Our GP did not use a BSL test or a simple urine test, which would have given a fair idea about the problem in 20 seconds....So pointless to tell you I keep a horrible memory of this time.
I would give a 2 out of 20 to this GP...
What about your experience of T1D, either for yourselve or your child?

 

[Jen&Khaleb]

My son was 8 months old. On a Monday he was thirsty and I had mentioned to my sister that I hoped he didn't have diabetes (I was aware of the early symptoms). I had taken him to his first playgroup on the Wednesday previous so I thought he picked up a virus from being around the other kids. On the Tuesday he seemed a little better and was eating and drinking fairly normally. I did notice his nappies seemed heavier than usual but put that down to him drinking more the day before. During Tuesday night I got up twice. The first at about 11pm and he roused easily and seemed okay. The second time was about 4am and I noticed his breathing seemed a little different. I then got him up at 6am (Wednesday) to find he was lethargic, looked dreadful and refused his bottle. I took him straight to the hospital emergency department and after telling the triage nurse he was thirsty on Monday she immediately did a BSL with a standard meter which obviously read "HI". His blood sugar level was 86 mml/l so we were flown to a major hospital so he could spend several days in intensive care and another 3 weeks in hospital.

I think because my son also has Down syndrome it is expected that other serious health issues could occur and health professionals are aware of this. I had met another lady who went back to the hospital (same one as me) 3 times with her child and was told he had a virus and she should take him home. His BSL was 106 mml/l when he was finally diagnosed.

Most other people I have met noticed changes in their child over a period of weeks and bed wetting was at the top of the list and sudden weight loss.

I am sorry to hear you look back on the time of diagnosis with anger but even though my son and I were treated very well I can't say I look back on that time with any fond memories either. I am probably somewhat grateful that my son will never remember a life without diabetes but it has potentially shattered any chance that we will lead independent lives in the future, not to mention his increased risk of complications.

I wouldn't hesitate to get a second opinion today after my experiences with doctors. A doctor with every letter of the alphabet after his name told me at ultrasound that my baby definitely did not have Down syndrome. That's a whole other story though. I wouldn't have thought 2 years ago I would be an unemployed single parent.

Well, I look forward to hearing the stories of other members.
Jen.

 

[SophiaW]

I'm sorry to hear that your experience of diagnosis was not a good one. My daughter was diagnosed three years ago at the age of 4. She had recently started school and came down with a nasty virus. It included a temperature and head cold and as a result (I thought) she was very thirsty. However after she got over the illness the thirst did not go, it progressively got worse to the point of her being sick from trying to take on board so much fluid. She also began wetting the bed at night which was unusual and she had very little energy and was incredibly tearful. We visited our GP who immediately did a finger prick test and a urine test for keytones. The results were as she had expected and she referred us immediately to hospital where our daughter spent a few days being treated and had further tests. The specialist confirmed type 1 diabetes and we've been living with it ever since.

 

[totsy]

hya,
i was feeling extremely ill,blurred vision,dying of thirst,weight loss etc so my mum told me to nip to lloyds, i didnt eat/drink except water overnight and went 1st thing at morning, my bloods were around 15mmol so they sent me over to drs with a referral note and the nurse phoned to say id to have a gtt 10 days later,
i got feeling iller and iller and by the friday i honestly thought i was dying so got other half to buy a monitor, my bloods were in the high 20,s so i rang gp who told me to go to a&e,
i got there and my blood was 32mmol and plus 3 ketones so was put on drips and kept in, was diagnosed and started on injections the day after :?

 

[Shivani]

My mother had type 1 diabetes before i was born, most of my childhood my symptoms were ignored by my parents and doctor, they were busy trying to look after my her and i honestly don't resent them for that (she was not in control, lost the use of her legs and suffered alot). However she died when i was 11 years old, my father decided to take me in for a blood test. After taking the test, i heard nothing from my Doctor and as my father was working 2 jobs, I went ignored again.

I didn't think twice about it, thought it was normal that i was thirsty all the time, that i had to use the loo 3 times in an hour, blamed my teen self for the fatigue and moods.

When i turned 19, i got married and moved houses, my new doctor by area default rang me within days of receiving my file, there was panic as the receptionist tried a few times before successfully getting hold of me. It was then i was sent to the hospital for a full check up and i was diagnosed with Type 1 diabetes. I should have been on insulin when i was 12 years old, maybe even sooner.

Can't dwell on these matters i guess, however i sometimes wish someone noticed me earlier.

 

[Smile]

I know I shouldnt complain that much because there are younger people than me with it but anyway, it all started off with getting food poisoning from fish and chips. After that I was fine but then an illness suddenly hit me with the usual diabetic symptoms but put it down to the fact that I was taking my Mock GCSEs and I was going to go to the doctors and then it suddenly stopped. It went away for a while then I was struck down with vomiting, lost a stone and a half in weight in less than 24 hours and got rushed to hospital unconscious and nearly went into intensive care. The first words I woke up to were, "Thank god. You nearly died." I think I cant cope as well as other people because of the terrible diagnosis.

 

[suzi]

For my son Andrew, he had been off colour for a couple of weeks, then the bed wetting started and the 2+litres of fluids a day (our house has always been sugar free juice/mineral). Anyhow i knew something wasn't quite right, he had lost weight (infact he'd lost 16lb's) and tried to make a Drs appointment, 3 days later and no joy of an appointment i took him along to the treatment room. Waited 2hrs in treatment room, explained symptoms to nurse and she did a urine test, 4+ keytones and she said a finger prick would confirm that she believed Andrew had Diabetes, bs 33.4, straight to hospital. The hospital was fantastic and i have nothing but praise for them, that was 3yrs ago and Andrew is now 10yrs old, with both T1 diabetes and Coeliac disease. Like all children he has adapted incredibly well and manages his condition with more guts and determination than i think i ever could.
Suzi x

 

[Sweet3x]

It sounds like I was really lucky. My father is T1, and when I started drinking lots, wetting the bed and being bad tempered, they took me straight to the doctors. I was 12 at the time. I can't recall how it all happened, but I vaguely remember being told I had to go to hospital that day. Was taken to Sydenham Childrens hospital, spent a week in there, did my injection on my own the first time they gave me the needle and showed me how to draw up the dose (they did the first injection, in the evening) and all was well and good. I don't think my BS was too high, thanks to mum and dad spotting it quickly. I have no idea whether the doctor needed pushing, but knowing my mum he wouldn't have got far if he'd put up a fight.
As I say, all in all, I seem to have had it easy compared to some

 

[chocoholic]

Mine is a long story, so won't bore others by repeating it but in a nutshell, I was wrongly diagnosed as Type 2 in 2003 and correctly diagnosed as Late Onset Type 1 in September 2008, purely because I insisted on referral to a diabetes specialist, who within minutes of seeing me guessed my original diagnosis was wrong.
Back in 2003, other than a big unexplained weight loss,I was only picked up as being diabetic by my attending my first blood donoring session and I feel it was fate that I went that day.

 

[LittleSue]

I was 8 and had had concussion, road accident and glandular fever within 12-18 months. Never seemed to get over the glandular fever. Hard to pin down when the diabetes symptoms started but I had the classic ones. I'd weighed just 2st 12lb for 18 months (despite growing taller). Seveal visits to the GP who wouldn't believe there was anything wrong. He told mum it was all in her head and she was too fussy. At last a friend's T2 grandpa saw me and suggested diabetes. GP still insisted I was fine but reluctantly tested my urine. Then referred me to hospital outpatient clinic saying "they won't see her this week". Luckily the school nurse said go to hospital NOW and stay there til someone sees her. It was adult diabetic clinic day so we went there rather than A&E. I was admitted for 2 weeks. Stupid GP never got his head round me being diabetic. This was 1973, I'm always saddened to hear same thing happens even now.

When I was diagnosed all mum knew about diabetes was an elderly T2 relative, who died not long after diagnosis. So she thought I wouldn't live very long.

 

[lilibet]

Had some thirst whilst on hols but only noticably for one day - easy to put down to the italian sun

Returned from hols Sunday, on Weds was up peeing a lot, decided to monitor it (UTI etc?)
On Thursday evening was very thirsty. Not just my usual lots of water but NEEDED it. Thought it might have been what I had eaten but was drinking enough to double over in pain so again though id keep an eye on it. On Thursday night into Friday I was up 12 times for toilet, no other UTI symptoms.
Called Doc Friday morning, went to see her, told her I thought I had diabetes.
No weight loss, fatigue, smell of ketones, blurred vision, thrush, family history, too old for type 1, too healthy and slim for type 2 so concluded it wasnt likely. However, insisted on BG be taken.

6 hours later I was in A and E with a bg of 27.
The real fun began with the triage nurse who when taking the bg asked me what diabetic meds I was on. When I stated I hadnt been diagnosed yet/on any, he raised his eyes, let out a whistle and then nodded his head. He then threw a gown onto a bed on a cubicle, told me to put it on and bag my clothes. When I asked how he knew Id be staying in if I hadnt seen the doc, he then made more scary overtures about how I WOULD be staying in, no doubt etc. Then my real panic began.

50 mins later Doc finally came, took blood to check if my blood acids/kidneys were ok :shock: , went away for ages, came back again and then said we'll get you to a ward. I by this point was in floods of tears and querying how on earth I could be type 2. Got a withering look and a sigh, stating that I was type 1. Also told that its unfortunate I was diagnosed on a Friday because otherwise I would just be seen at a clinic (DNS later told me that they would have had me admitted if id presented as I had). Through the bouts of crying, was told that I was 'at least taking it seriously'.

Went to ward, left for another hour, injected with 10u insulin by another doc. Then saw another doc a few hours later who was horrible, then put me on a drip with iv fluids, actrapid. About 2 hours after that I had a hypo of 0.5 where a nurse told me I felt funny because I had sat up too quickly. After this was treated, fell asleep. Saw yet another doc, then moved to another ward, where I saw no one until the following day when I got out.

Lovely

 

[mikeyuk]

Was on holiday with my folks in the south of ireland when I asked for like my 15th drink inside an hour my mum became suspicious, she was Type 1 too. So took me back to the apartment and took my bood (with a jagger no less, no pen for me!) , was off the chart. She phoned the doc and he told us to come home immediately.

Remember being gutted my holiday was over

Don't remember much about my hospital time, cept for when they wanted me to exercise so I could experience a hypo. Remember running up and down the halls and feeling absolutely terrible at 4 or so. They wanted me to go lower and said it wasn't even that bad a hypo, but I still feel quite low at 3.8 to this day.

 

[Stod]

I am shocked, although I suppose I shouldn't be, that almost everyone has had a terrible experience when they were diagnosed. I thought I was alone in this respect.

I was diagnosed 30 years ago at the end of the 70s, at age 20! I had been ill on and off throughout my teens and my (criminally negligent) GP put it down to 'growing up'. By the time I was 20 my weight had dropped to about 7.5 stone (I'm 5ft 9), I was so tired I could hardly even get off my bed to go to the loo - which I needed to do every 5 mins, or so it seemed, and I was guzzling lots of non-diet fizzy drinks (only diet Tab existed then). I thought I must be dying of cancer...

I went on the bus to see my GP, and he (an ex-army doctor) told me I had some kind of virus, although he did take a urine sample. He then sent me home - a three mile bus journey. I was so tired when I got home I had to go to bed. I was woken by the phone ringing - it was a receptionist at the surgery telling me I had to make my own way to A&E immediately. I had to get a taxi to the nearest hospital (2 or 3 miles away) and eveyone sprang into action when I arrived in the Metabolic Unit. I was in a gown, in bed, with a drip attached and having injections before I knew what was happening. Yet, I still didn't know what was wrong with me.

I remember being wakened some time later by a doctor, who told me the terrible news. T1 & ketoacidosis. I never cried or got upset, because I was just so glad to learn I wasn't going to die. The doctor's attitude was just matter-of-fact; she showed little in the way of empathy. My BSL on admission was 32 mmols!! However I was very quickly educated in exactly what lay ahead. It was so different back then with glass syringes, re-useable metal needles, both of which had to be stored in industrial methylated spirits when not in use. Disposable needles and syringes didn't appear for 2 or 3 years. I remember having to take the syringe and needle out of the liquid then flush them through with water that had been boiled. I could then put theem together. There were two bottles of insulin; soluble and isophane, I can't remember what they were called. But I do remember you had to calculate your dosage because the pork insulin was not 100% strength - it was a case of having to divide whatever the set dose was by 2, or was it 4. Anyway, it made an already complicated process almost incomprehensible to me. There were no blood testing meters then either, it was all done by urine tests. It was 2 or 3 years before I got my first meter and it cost me £40 (in 1981-82!). In total I was in hospital for around 3 weeks, which I didn't mind as I was steadily getting better. The real challenge came when I was discharged. As we all know, that's when it really sinks in...

I had hoped that thing would have improved over the years, and I'm a bit saddened to hear that people are still being 'treated' poorly by the NHS. However, compared to the suitcase full of stuff i had to lug around with me back then, things have greatly improved!

 

[diabetesmum]

Some scary stories

In comparison I guess we were relatively lucky when my older daughter was diagnosed. I already had a good relationship with my GP, a young female doctor who was quite 'progressive' in her ideas. Anyway, DD who was 8 at the time had been lying around for weeks being lethargic and grumpy (not like her!) and I kept thinking she must be hitting puberty early. Then she started to drink loads and wee all the time. Then we moved house, and one night surrounded by packing boxes and chaos, I decided to take notes (literally) of how often she drank/wee'd. It was a LOT. So next day I made a Dr's appt for a couple of days' time (how foolish was I, though I didn't know much about DKA then), and took her along with a sample in a bottle. The GP dip stick tested it and confirmed there was a lot of sugar there, but no ketones. She asked us to come back the following morning for a fasting blood test, which we did, and then she called us later in the day and told us to go straight to hospital. The BS on admission was 27.1, but still no ketones, which is a mystery, but something I'm grateful for, knowing as I do now how dangerous DKA is. We were home within 3 days and DD did her own injections within a couple of weeks.

Fast forward 15 months, and my younger daughter (then 2) began drinking and weeing a lot and wetting the bed. It was during a warm spell of weather in May, and everyone kept saying she was fine and it's just the warm weather making her thirsty. So I felt like I was being paranoid, and anyway didn't really want to face what deep down I knew was the truth. But by now I was all too aware of ketoacidosis, and made myself test her BS, though I couldn't look at the result and her big sister did instead! It was 24.7 and she had moderate ketones. I was at once gobsmacked and completely unsurprised, it was a strange thing.

We went straight to the after hours Dr and I basically told him the diagnosis. He didn't argue but sent us to the hospital, where we had a horrendous time as they struggled to put a drip into her poor little hand. Even the Dr was traumatised afterwards.

We were sent home the next day as we already knew how to manage things. That was 5 years ago now and they are both on pumps. We have our ups and downs, but living with diabetes is 'normal' for us now. I can't remember what it's like to parent without diabetes!
Sue

 

[scottishkate]

I was 9 and had a flu-like bug accopanied by lots of trips to the loo and drinking huge amounts of water. My mum new straight away what was up (my dad is type 1) and took me to the GP. A finger prick later and a test result of 24 and that was me a diabetic. Me and my mum were sent off to the local hospital where I wouldn't let anyone do my injection - I did the first and every one since myself (I've always been headstrong!). Only stayed in hospital for one night and was sent home the following day as the doctors could see I was pretty clued-up about diabetes and was coping fine.

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!

I think that my diagnosis was problably harder for my dad than for me. But there's no one to blame - it's just bloody life!

Katie.

 

[acko]

Hi all,

Very interesting reading your accounts of what happened to you. Some bad :x Some good

For myself the problem was my parents. My dad was a T1 and he knew what was happening to me when I started drinking, weeing, drinking again. I was exhausted and felt utter ****. Also very bad tempered. My mum understood this to. I had nearly 3 weeks of this (i was 11) before they took me to hospital or GP can't remember. I guess they were scared. They did admit they suspected what was wrong!!

Anyhow the hosptial (York) were pretty good and looked after me. They got me straight and controlled after about 5 days in for 10 days. The care has been pretty good since. Always remember a male nurse who took me out for a kick around once my BS was where they wanted it. Also remember the brused arm I had where they fed in drips.

Pete

 

[caitycakes1]

Hi all,

Went to the docs, p*****g like a racehorse, dreadful thirst, mouth like the desert and blurred vision. Docs sent me to the optician!!!!! Optician sent me straight back to GP with a letter. He did urine test and it was +++ ketones. A grave-faced GP told me I had diabetes and that there wasn't a snowball's chance in hell that it wasn't (his very words). He had me admitted to hospital. BS level was 23. Spent 3 hrs in hospital whereupon I was sent home with a carrier bag full of needles, insulin etc which I felt like throwing over the nearest hedge and heading for the hills. My optician was the one who basically diagnosed me!!!!!

Caitycakes x

 

[deeby]

Hi everyone

This is my first post so feeling bit nervous! Really felt tho that I wanted my say on this one!

Went to docs last October with thrush - he said he'd do a blood test just to be sure but he'd never had a positive result for diabetes before....Bingo! Bs of 26 but he said I had T2 due to my age (50) although I mentioned that my uncle developed T1 at 48. Was told to go away and wait for clinic appt with their DSN. Began to feel more and more ill - all the usual signs. Saw the DSN and asked for another blood test and a monitor but was told I'd just worry myself to death if I tested my own bs and to come back in 3 months when they would do a Hba1c and make a decision about medication. Looking back, I can't believe I accepted that - I'm usually quite assertive but I guess I felt they must know what they were talking about.

Over the next few weeks I went back to the docs on a weekly basis, feeling awful, drinking like a drain, losing weight etc - was told it would all clear up when I was put on medication.

I don't actually remember the end of it all - woke up in intensive care being told, like an earlier poster, that I was lucky to be alive. The trauma of the illness also caused acute renal failure although that has now righted itself.

I now get treated at the Diabetes Clinic at the hospital as I have no faith in my GP practice. I've since heard of quite a few people who have developed T1 later in life - including one lady who developed it in her 80s!! My aim now is to get my surgery to accept that they made a mistake so that no-one else has the same problems with diagnosis that I did. If anything, I think it's made it even harder to accept and deal with the illness.

Cheers
Deeby

 

[Jen&Khaleb]

Mainly this is a response to Deeby...

Why is it doctors put such emphasis on age these days. I have a baby with down syndrome because I was not in the high risk area regardless of markers at my scan. I know parents well under 30 with problems not in their age group. Plenty of people develop breast cancer under 50. Whatever the diagnosis, the outcomes don't improve by doctors not looking at the symptoms. Maybe we should all be consulted over the phone and age not be a question that should be asked. Surely with your high bs you should of had immediate treatment even if you were T2. Did they think you had just eaten 10 donuts?

I just get more upset by the medical profession every day. Sadly, both my parents were medical professionals but both happily retired as the breakdown in the hospital systems occured.

Doctors seem to have forgotten how to listen.

Well, I hope things get better for future generations but feel they might get a whole lot worse before this happens.
Jen.

 

[cyb3rminx]

i started feelng very tierd, drinking lots peeing lots and i lost a stone in two weeks even though i was eating for england and then i began with blurred vision, i went to the gp and was told i had a virus a week later i went back to be told to go see an optician. i ignored the gp and went to my lloyds chemist who checked my bs. after re testing them because they had never seen a reading so high (33.3) they told me to go to a&e. a few blood tests and i was told i was dt1. so for two weeks i was walking round thinking i had a virus taking paracetamol lol funny bloody virus. i have been dt1 since may last year and still do not have good control as my nurse thinks i have finished honeymooning now so have had to have doses highered and lots of tests. I think doctors should be more aware of what people tell them i told my gp that i thought i may be diabetic but she dismissed me because i am not a gp at the end of the day i was right and if i had not been for the chemist offering the test who knows what may of happened.