Prior to diagnosis, did you ignore/miss any symptoms?

[Northerner]

I was just thinking about my diagnosis and how many of the signs I missed, now obvious with hindsight. During the 18 months prior to diagnosis I had gradually lost around 21 pounds in weight. I had been feeling generally lethargic and although I was still doing my running my stamina and fitness had declined. Three months prior to my diagnosis I ran my slowest ever half marathon, barely making it round before the cutoff time - here's me finishing, with the support ambulance just behind me! 😱

I'd also developed an insatiable thirst, drinking up to 30 pints of milk a week. I put this down to the fact that I was also drinking more alcohol, and therefore becoming dehydrated. Eventually, in May 2008, I picked up a bug which totally overwhelmed my pancreas and I ended up in hospital with DKA.

So, I missed a lot of the signs, putting a lot of them down to life (and getting older!) in general. What signs did others miss, or were you diagnosed out of the blue from a general check up? Or if diagnosed as a child, what did your parents tell you happened?

 

[Pumper_Sue]

I was one of the lucky ones , even though it was almost 50 years ago my mum recognised the symptoms straight away and took me to the GP who laughed in her face and said she worried to much I was far to young to have diabetes. Mum stood her ground and insisted he checked me out so to shut her up he told her to bring in a urine sample when she next passed the surgery. Out of her pocket came the jar with said specimen. He tested and was apologising as he grabbed his coat coming across the surgery. He bundled both mum and I into his car and took us both to the hospital. The rest is history.

 

[Riri]

I was diagnosed in 1998 after 3 visits to my GP over a period of a few months. I was losing weight, drinking gallons of water, extremely tired and having thrush all the time. My sisters were amazed, when we went out for a day shopping, how thin I'd become (7 1/2 stone) and at the number of empty bottles in the car - probably about 20. They urged me to go back to the doc, thinking the worse they told me afterwards. I saw a different GP and he thought diabetes immediately. It was a Friday afternoon and he arranged for me to go to Shrewsbury hospital on the Monday morning with the caveat that I would ring 999 if I felt ill over the weekend. TBH, inwardly, I had thought diabetes for a while but because I'd seen doctors, there was no history in the family and my age (33) I thought it was unlikely! Diagnosis confirmed by diabetes consultant and put on insulin immediately in Shrewsbury hosp and the rest is history as they say!

 

[bigheadmike]

I was diagnosed because my Troop Commander made me go to the Medical centre, i lost alot of weight but because i was spending alot of time in the gym i thought it was this, i was also really thirsty, so i was drinking alot of water, then because i started getting cramps i started drink isotonic drinks to stop this, which probably compounded the problem. i went to hospital put on a drip for 6 hours then had some insulin given to me then i was discharged and sent back to work.

lucky this forum was here because i didnt have a clue.

 

[DeusXM]

I had all the classic signs - constantly drinking, constantly peeing, and I looked like I'd just been liberated from a concentration camp. It even happened on trip when my mum and I went to the West Midland Safari Park with my friend and his mum - and his mum even said it was a bit like I had diabetes as a joke because I was always so thirsty....and I was quenching that thirst with regular Coke, so you can imagine what was probably happening with my blood sugar!

I even went through a stage just prior to diagnosis where I decided my soft drink of choice was going to be Lucozade, so I was getting through 3-4 cans of that a week while running on a defective pancreas.

By the time I went to the doctor (at my own insistence because I was like a skeleton, my Mum just kept saying it was a phase as I was 14 and therefore was going to grow 'up' before I grew 'out') I think I already knew it was diabetes without really knowing what it meant. But I'm sure everyone here has had that 'oh' feeling when it was confirmed and suddenly the abstract notion of having diabetes is actually very real and tangible. I remember when the doctor confirmed it I just suddenly felt incredibly hot all over with pins and needles all over my body and then it's all just a bit blurry.

We went home, packed a bag, and it was only at about midnight in the hospital after I'd watched Last of the Mohicans on the TV it began to dawn on me that this wasn't a temporary game or novel change of scene.

 

[SimplesL]

I didn't really show any signs; I wasn't thirsty/hungry etc.

In September 2010 I was "picked up" out of the blue during pre-op tests which turned out to be an early non-invasive breast cancer. (Buy one get one free!!)

My late father and 1 of his brothers had T2 which none of us realised increased our risk of developing it. Since then my older brother has also been diagnosed.

I hadn't recognised any signs but I did suffer with cramps at night unless I drank a tumbler of water before I went to bed. Never any need to get up at night to visit the bathroom. Also my toes tingled on occasion; which since my suger levels have been reduced have not returned. My HBA1c was 8.9 on diagnosis so perhaps I was picked up before any damage done as my control has been good since.

Latest HBA1c is 6.5 & I hope with any luck to go nearer to 6.

 

[Bloden]

I had the classic symptoms too - thirsty, peeing like a cow, always hungry, and big weight loss. I also had thrush constantly, but didn't know it was a symptom (neither did friends who are nurses). I put it all down to having moved abroad!?

After approx 8months of this, I went to the doctor, but she just treated the thrush and persistent cough (another symptom) and sent me home - she was a locum, not my regular doc.

2 months later I went back again cos of thrush, and my regular gp diagnosed me immediately and sent me to A&E. And I was there for a week. Thank goodness I'd done a course in medical translation a coupla years before, otherwise I wouldn't have known what the heck was going on!

 

[pav]

Thinking back, the doctors missed the signs of me being diabetic, as I had been several times with problems associated with diabetes.

In the end I gave up going, It was work who sent me again to the doctors as I was in a bit of a mess with the usual drinking water like a fish, and looking general unwell.

I had put it down to the long hours that we were working, rarely got to see home for more than a few hours a day.

 

[Cleo]

Very interesting thread that you started Alan !

I started showing classic signs in August '95, I was living in France at the time and it was quite hot - so the fact that I was drinking loads of water to me, seemed very normal. In September went on holiday to the US and like Riri, I also got a visit from the thrush monster, which became so unbearable that my then boyfriend took me to the hospital which is when they ran blood tests and discovered that my beta cells where no longer doing their job. The rest is history as they say.

 

[fencesitter]

I think the doctors missed lots of symptoms for William. At the time he had a suspected deep infection in his leg, and as he has lymphoedema they were not thinking along any other lines. In fact it turned out to be a (benign) tumour in his femur, which was growing fast due to all the sugar and causing a lot of pain! He was on huge doses of antibiotic for the suspected infection, and all the drinking/peeing was put down to his body trying to flush out the antibiotic. Things we missed: in the months prior to diagnosis, he had a lot of mouth ulcers and once he collapsed in PE and just needed to sleep, and he was very thin. He also had bad constipation. GP gave him some kind of liquid to help with that, but no questions were asked at the time to link all these issues. I think that constipation should be on the list of symptoms to think about - linked to the increased thirst/peeing. In the end, a nurse who was dealing with the antibiotics decided to ignore the doctors and test him. So pleased she did before he got any more poorly!

 

[Copepod]

I was bit tired in the months before diagnosis (at a SCUBA diving medical in New Zealand), but I'd been working 100 hours in 10 days, mostly on dolphin / seal swimming / viewing boats in high summer, then 4 days off, which I spent driving & hiking all over South Island, New Zealand, so perhaps not surprising I was tired. High summer temperatures meant that feeling thirsty was normal. Uniform included fleece shorts, so a slightly itchy crotch was also explainable. Tended to need to go for a wee as soon as I woke up, but again, nothing too extreme.

So, I was probably lucky that sugar in urine was spotted a medical, although I didn't need medication or insulin until I returned to UK a few months later. Not too unusual for a slow onset of type 1 diabetes in an adult (I was 30 years old)

 

[delb t]

Ah still brings a tear!...H went on a school trip- mountain climbing! had mentioned being thirsty the day before ,picked him up after the few days..still mentioning thirst/ jeans were falling down! and had resorted to eating snow at the top of the mountain! spoke to a nursey friend who said it may be diabetes get him checked. All day I rang and rang to get a cancellation at the docs -when he came home that day from school he said its getting worse I couldnt see very well today.Anyway had managed to get a cancellation and armed with a sample off to the docs.She said I think you have Diabetes and sent us to the hospital....that bit was hard very hard.Anyway off we go to the hospital/tests huge injection etc and told to eat within half an hour.It was the early hrs of the morning by this time and we were racing round the streets looking for a Macdonalds obviously we felt it was like the last supper lets get him something he wants! gets to one ..shut Im pounding on the window[ not cool] gets to the next...the tills are down! Im shouting at the girl- hes got to eat now!!!and phew he got the meal .. on hindsight my daughter had said when she came back from Uni on visits how skinny he had got but we just didnt see it!

 

[DeusXM]

my daughter had said when she came back from Uni on visits how skinny he had got but we just didnt see it!

That's the thing, I think. The weight loss with T1 always seems to be pretty dramatic but because it's a daily process, I think those who encounter you on a daily basis don't see it. It's only when you look at photos and you suddenly realise how much you've lost.

I think what really sold it for my parents was when I came back from cadet camp at RAF Fairford, which was about a week before I was diagnosed. I had a chin and cheekbones. I come from a long line of people with very round faces and it was only when I got down to six stone that my face stopped being round!

 

[pippaandben]

In the 2 years before diagnosis had tingling feet which led to blood tests and under-active thyroid found. Seemed to help feet but at flu jab time had urine test which showed a tace of sugar and subsequent blood test showed "a little diabetes but nothing to worry about". Roll forward 2 years and tingly feet returned and after blood test diagnosed type2. Raced through all medications to maximum dose and then - and only then - had the thirsts and lost 2 stone in 4 months. Blood test 111. On insulin within the week. Dr still refusing to do test for LADA but in my own mind am due to history.

 

[cardinalGT]

I had all the common symptoms - weeing, thirsty, absolutely could no keep awake - kept failling asleep really easily - especially during breakfast.

In the end what drove me to the doctor was my dentist. I was suffering from something called "desqamitive gingivistis" - basically the skin on the gums starts to peel away and the gums are inflammed. He couldn't do anything for me (but got excited enough to whip out his camera and take a picture of my mouth - at least he did not charge me I suppose!)

Doctor took a blood test and it took nearly a week before getting the results back. Got sent off withh 1000mg dosage of Metformin and told to "eat less sugar". It has been an interesting journey since. First reading on my meter that night was 23!

She told me a month later she was in 2 minds whether to send me straight to hospital that day. (That freaked me out)

11 months on and although I am now on 2000mg of Met, my readings are mostly in the 6.0-7.0, I eat better and I am fitter. I still think there is some fine tuning to do and I think I can do better, but I will reach the first anniversary of diagnosis in March. (And survived being diagnosed abroad, were healthcare is NOT free!)

 

[Northerner]

In the end what drove me to the doctor was my dentist. I was suffering from something called "desqamitive gingivistis" - basically the skin on the gums starts to peel away and the gums are inflammed. He couldn't do anything for me (but got excited enough to whip out his camera and take a picture of my mouth - at least he did not charge me I suppose!)

That's something I've not heard of before, sounds nasty When I think about it, I also had a dental-related problem that was most likely associated with my undiagnosed high levels. About 10 years previously I had had a root canal done due to an infected tooth. Then, around a year prior to diagnosis the infection reappeared! It seems that a tiny bit of infected tissue had been left behind after the RC, and my bacteria-friendly condition had reawoken them. I ended up losing the tooth, but at the time had no idea what had caused it - now it seems obvious! 🙄

Well done on turning things around, I hope you are rewarded with good results at your annual review 🙂

 

[cardinalGT]

ooh root canal - brave boy.
I did read somewere that "dental issues" were not uncommon around the time of diagnosis - usually some sort of infection associated with the high sugar levels. I think the issue is that diabetes does not manifest itself as a specific dental problem - just another side effect of high sugar levels probably. The Desq.Ging was incredibly painful, frustrating as it is almost untreatable and left me in tears most days. In all my life I dont think I every felt so unwell as between Jan and March last year when I finally got diagnosed.

Unless you are feeling really brave / can keep your lunch down dont google desquamative gingivitis - it is gruesome!

CGT

 

[AlisonM]

Looking back, I was very tired and lethargic for months before I collapsed, no matter what I tried to do it was all a dreadful struggle. I wasn't sleeping well, or eating well and I had one infection after another. I had few other symptoms though until the last 10 weeks-ish. Then I started getting very thirsty and like Northie, drinking loads of milk, which all went in but didn't seem to come out again. I didn't pee more often, just more suddenly if that makes any sense and there were a couple of really embarrassing accidents. The exhaustion got worse over the last week or two until I was found, by my landlord, almost unconscious and dragged off to St George's. I was lucky to survive and, even then, I was misdiagnosed as T2 and had to survive the first year on the wrong meds which was a total nightmare in itself. I lost about three stone in weight because I was hardly eating anything and felt sick a lot of the time.

One other small detail, I'd had a routine test for diabetes 6 months before I collapsed, it was negative. Not even pre-d.

 

[grovesy]

As I had impaired glucose tolerance for 10 years before becoming Diabetic, I did not have any symptoms as such.As I had annual fasting blood glucose that is how I was diagnosed.
followed by a GTT.

 

[Redkite]

It's incredible to me to read that so many of you had symptoms for months before diagnosis. My son's onset was extremely rapid in comparison - we first noticed he was drinking more than usual halfway through a two-week caravan holiday in France. At first he drank normal amounts, but as the holiday went on he seemed to be always thirsty (not strange since it was hot, but he would drink a whole carton of orange juice - and now I know this is 20 odd grams of sugar 😱 - and then want more to drink with his food, and that WAS unusual). Of course he kept needing the toilet, but four year olds on long car journeys always need the toilet! When we got back to the UK, we went for a country walk that weekend (Sunday) and he threw a tantrum about his legs being too tired and wanting to be carried (the whingeing started only a short way into the walk), and to this day I feel sad and guilty that I was so unsympathetic with him - he must have been feeling dreadful.

The next couple of nights he kept getting out if bed to go to the toilet (4 or 5 times), so with a sinking heart I made a GP appointment - first available being Friday morning. The GP asked for a urine sample but said he was sure all was ok as my son "looked fine". So we went out shopping and only got back mid afternoon to find a message on my answering machine from the hospital saying they were expecting us and where were we?!!! He was duly diagnosed that day (I was shocked to read that Riri was diagnosed on a Fri, but not admitted to hospital or given insulin treatment until Mon! My son would not be here today if we had been sent away to come back on the Monday). There was no consultant or DSN until the following Tues, so we spent 4 nights in the hospital. Not a happy time ......