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



## Northerner (Feb 21, 2014)

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?


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## Pumper_Sue (Feb 21, 2014)

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.


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## Riri (Feb 21, 2014)

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!


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## bigheadmike (Feb 21, 2014)

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.


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## DeusXM (Feb 21, 2014)

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.


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## SimplesL (Feb 21, 2014)

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.


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## Bloden (Feb 21, 2014)

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!


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## pav (Feb 21, 2014)

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.


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## Cleo (Feb 21, 2014)

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.


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## fencesitter (Feb 21, 2014)

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!


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## Copepod (Feb 21, 2014)

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)


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## delb t (Feb 21, 2014)

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!


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## DeusXM (Feb 21, 2014)

> 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!


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## pippaandben (Feb 21, 2014)

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.


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## cardinalGT (Feb 21, 2014)

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!)


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## Northerner (Feb 21, 2014)

cardinalGT said:


> 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


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## cardinalGT (Feb 21, 2014)

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


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## AlisonM (Feb 21, 2014)

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.


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## grovesy (Feb 21, 2014)

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.


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## Redkite (Feb 21, 2014)

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 ......


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## stephknits (Feb 21, 2014)

Really interesting to read everyone's stories.  For me I had the usual symptoms, particularly the tiredness and thirst.  But then I put it down to working, looking after family, poor sleep etc and I've always been a thirsty person.  I would never have gone to the doctor with these symptoms and was diagnosed through a routine health check.  With regard to weight loss, I had been half-heartidly trying to loose half a stone and did succeed quite easily for me.  Now I don't seem to be able to keep any weight on, I think it must be the low carb diet.  For the first time in my life I have to think about eating things that will keep me at current weight, feels very weird.


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## Bloden (Feb 21, 2014)

My doc sent me home at first too. She told me not to eat any sugar all weekend and to come back on Monday (it was a Friday). By the time I got home there was a message on my answer machine telling me go straight to A&E instead. In the meantime I'd been to the hairdresser and done the weekly shop - all in a bit of a daze...I'm diabetic?!!!


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## am64 (Feb 21, 2014)

Well I was not right for a while had been tested when 16 cos of thirst but came back fine ...im sure now that they were not even looking at T2 ...whilst a student they tested me with a negative result... during my 2nd pregnancy tested after a nasty turn ...but no all fine...it wasnt till I was 44 yrs that a gp was concerned as I had abcesses that I was finally dx with hba1c 7.2 ...the main sympton that was ignored was that I was sooooo tired ....I even remember looking at those sort of lorrys that had sleeping compartments thinking how nice it would be to have a bed availble whenever ...


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## Andy HB (Feb 21, 2014)

Looking back, I think my symptoms were around in one form or another for up to ten years prior to diagnosis.

The first possible indication was when I had a small insect bite on my lower leg. It became ulcerated and took quite a strong dose of antibiotics to clear up.

Closer to diagnosis, I had frequent bouts of lethargy, couldn't walk for more than 30mins without feeling awful and became aware that I could not keep up walking speed with my sister!

I was also drinking 2L bottles of fizzy pop like there was no tomorrow. Sometimes two or three in quick succession.

Then there was the unexplained bouts of sickness along with the occasional pear-drop taste.

Just before diagnosis, I had a problem with cellulitis which I eventually realised was down to puncturing my big toe with a nail in the floorboards whilst doing some decorating in the house. I hadn't realised that my toe was not looking good!

Oh yes, and once, I noticed that there were what appeared to be blood blisters at the side of the nail on several of my toes. They cleared up within a few days so thought nothing of it! 

It's the cellulitis episode that bothers me a bit because the GP didn't put two and two together. She just treated the infection without thinking about the cause. But, to be honest, by that time, I think the diabetes symptoms were already well established and I was diagnosed shortly after when I took ill in central London. So no additional harm was done.

Finally, when diagnosed, I had unexpectedly lost nearly 1 stone. On the good side, it gave me a good start for some proper weight loss later!

Andy


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## Pine Marten (Feb 22, 2014)

Gosh, you lot have been through some awful things! I don't remember any symptoms - I was having regular checks at the surgery for high blood pressure, and on one occasion my (now retired) GP was staring at my results on the computer and said, 'Oh, I think you're mildly diabetic...' and my heart sank! So a blood test later they confirmed I was 'mildly diabetic'(!), I was given the usual printouts saying eat carbs at every meal and that was that. My GP did say that I should try and control it with diet and exercise but that I'd probably have to take medication in the future. They offered me a Desmond course but didn't really explain what it was so I said, no thanks, as I didn't fancy the idea of sitting round in a group of strangers.

Fortunately they are much better now at the surgery and the new diabetic nurse has been very supportive.


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## Pigeon (Feb 22, 2014)

My symptoms started when I was on holiday in Edinburgh age 25, I remember it seeming a long way up the stairs to the apartment, and drinking loads of water and peeing all night. But my grandma passed away that week (after a long illness) and so I put my symptoms down to stress and grief. I remember drinking glass after glass of juice at her funeral but thinking I was dehydrated because of all the crying. Felt really tired and lost a stone gradually over the next 6 months, but again, put it all down to grief (I'd never lost someone close to me before then). As well as thrush and athlete's foot, I remember a horrible taste in my mouth that wouldn't go away, obviously ketones, with hindsight. And really dry skin, muscle cramps, but as it came on gradually I didn't really tie it all together, and forgot what normal was like. I remember running for the bus holding up my trousers as they were so loose, then needing to carry a bottle of water with me everywhere, but thirst never going away. 

Diabetes did cross my mind, but I thought you got type 1 as a child or type 2 when you were old and fat, so therefore aged 25 and under 8 stone, that didn't fit. 

Eventually went to the doctors after 6 months and mentioned the weight loss (but no other symptoms) and he thought it was a thyroid problem and ordered blood tests, thankfully they did everything. It was the Thursday before Easter then I went away over Easter weekend to my boyfriend's parents. I remember I kept hiding in the bathroom to drink more water as I felt really greedy keep asking for drinks.

Got back home Easter monday night to find a letter from the doctor saying I had diabetes and not to eat anything sweetand to go back to the GPs  urgently. We'd been eating chocolates and cake all weekend so that sent me into a panic. Went back to GPs next day who sent me to the diabetes clinic, BG was 23, spent about 3 hours there then was sent home with insulatard and a load of leaflets, went back the next day for more information and every couple of weeks after that for a while. Have to say they were great, I wouldn't have wanted to be admitted at that time. Everything made sense after I was diagnosed, and although I felt a bit like denying it, with the injections I felt so much better that I didn't mind that part of things. Think it was months later that the emotional side of it hit me.


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## gwnm (Feb 22, 2014)

i was told i had pre-diabetes about 2years ago after the doctor did a load of blood tests and was told it was nothing to worry about, then i was checked last year with a routine health check and told sugars was normal and no diabetes, this was in the summer where i would spend the day drinking loads of fruit juice and my drink of choice a nice cool glass of milk, if i was out then i would buy those little cartons of orange juice and drink one within seconds and finish all 3 by time i got home and a bottle of water, then i would have a carton of milk sitting beside me and drink that while i sat chatting to friends online, doctor put it down to it being hot and anxiety due to depression, then as it got colder i found i was still very thirsty but again doc said it was the medication i was on and to just increase my fluids and drink less coffee  i was on a constant diet trying to shift weight and getting no where no matter how i tried tried to exercise more but with limited mobility its not easy, and the less mobile i become the worse it becomes, like a catch 22 and i'm stuck in the middle. November i was checked with a routine check along with my thyroid function and told i had diabetes type 2 and needed to see the diabetes nurse, so seen her and am now waiting to have my  eyes examined and to go to something called Desmond, i had my 3month test done and now been put on metformin and that's it, everything i know about diabetes is what i have read here and read in the book that has been recommended on this site


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## happydog (Feb 22, 2014)

I had no symptoms whatsoever.  It was picked up at the walk-in centre because I had a severe side/backpain which was renal colic. They did a finger prick test and said that the meter reading was over 18. I seldom went to the doctor as I was always working and too busy with the family.  We have no one else in the family with diabetes of either type, I was of normal weight for my height, although I have lost about 2.5 stone since diagnosis. Friends remark about how thin I am now. One of the doctors that I saw said that it could be 1.5 because I have low platelets and and underactive thyroid and no family history.  He was overruled by the senior partner in the practice who said it is just type 2.  I guess he must be right as I have brought the level down to 36 with diet and exercise.  I did feel tired sometimes but regularly worked 70+ hours per week at that time in a stressful understaffed job.  I often did not get any time off at weekends, so might work 20+ days in a row.  I don't work there anymore . This forum saved me as no one gave me any help or support and just left me to get on with it.  I shall always be grateful to the people on this forum


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## maddisonsquare (Mar 16, 2014)

I never thought I had diabetes. I went to see my doctor with a list of 'ailments', including feeling unhappy, thrush, thirsty, peeing up to 5 times in the night, mood swings, tiredness and many others. Doctor just looked at me and said he wanted to test me for diabetes and go from there. I went away bewildered. Returned a week later to be told I had Type 2 and the rest is history as they say. I was only diagnosed a few weeks ago and am on Metformin and diet/exercise. I have a DESMONDS course in couple of weeks and am looking forward to this.
I am so glad I have found this site.


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## Northerner (Mar 16, 2014)

maddisonsquare said:


> I never thought I had diabetes. I went to see my doctor with a list of 'ailments', including feeling unhappy, thrush, thirsty, peeing up to 5 times in the night, mood swings, tiredness and many others. Doctor just looked at me and said he wanted to test me for diabetes and go from there. I went away bewildered. Returned a week later to be told I had Type 2 and the rest is history as they say. I was only diagnosed a few weeks ago and am on Metformin and diet/exercise. I have a DESMONDS course in couple of weeks and am looking forward to this.
> I am so glad I have found this site.



So many of the symptoms can be misinterpreted or put down to other things. It's great that you have a DESMOND course so quickly - many people find one of the biggest benefits is actually meeting people in the same boat


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## HelenHanfe (Mar 16, 2014)

Similar to a lot of people, I put my various ailments down to stress, as a family member was very poorly and I was working and spending evenings going to / from hospital....running around....not eating well.

I think I sort of had an idea, that it wasn't just stress, with the repeated thrush and with a small cut on my hand, that just wouldn't heal.   

I was then talking to someone, across the room and became aware of them being ' fuzzy ' to look at...and a lightbulb went off !  All the little things that were nagging me hit home - and reminded me of my (diabetic) father ! 

Ordered a pee test from Amazon, confirmed it, made a doctors appointment and went in, with a sample, which he tested and confirmed 100%.  

All became clear...eventually...but even with my father's history, put 99% of all my symptoms down to stress ! 

HelenHanfe


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## HOBIE (Mar 16, 2014)

Havnt got a clue Was 3    Seems a long time ago now


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## jules56 (Mar 16, 2014)

In hindsight I remember feeling very tired and unmotivated for a few months and suffering from dry eyes from time to time.  In the four weeks prior to diagnosis I started to feel more thirsty than usual and drinking orange juice and fizzy drinks to try and quench the thirst as water didn't seem to do the trick. Also had a very dry mouth and tongue with a horrible taste. At the same time my eyesight went fuzzy and it was this that sent me to the doctors.  I had gradually lost a stone in weight over about 6 months and have lost another stone since diagnosis in Oct 2013 with BG of 33.  I was diagnosed as a type 2 and put on metformin and then had Sitagliptin added by another doctor who told me he thought I had slowly evolving type 1.  Guess time will tell.


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## Sally71 (Mar 16, 2014)

My daughter went down with a nasty virus on the night of her 6th birthday, we think that was her trigger. Ever since she was a baby I could always smell ketones on her breath whenever she was ill (presumably starvation ones from lack of appetite), but that always went away again once she got better.  This time it didn't, at 8am when she had eaten nothing at all for over 12 hours, she smelt as if she had just troughed a large bag of Haribos! But in the absence of any other symptoms I thought I was being a bit paranoid and so decided to just keep an eye on her and try not to worry about it. Then she started becoming hungry and a bit thinner, and complaining of leg pains; that just sounds like a fairly normal growth spurt though, I thought I would look like a bit of a prat if I took her to the doctor when she was just growing.  The one I really missed was the drinking; she loves apple juice and we thought she was just being greedy, guzzling loads of glasses of juice a day.  With hindsight I can't believe we didn't spot it, now she drinks hardly anything by comparison!

What finally started ringing alarm bells properly was one day when she ate 4 whole Weetabix for breakfast  yet when we put her in the bath it was clear to see that she was as thin as a stick insect.  Where was she putting all that food, and children don't usually get THAT hungry and THAT thin when they are just growing.  Then the following weekend we went to a party; she asked for a drink, all I could find for her was water which she wasn't particularly keen on and I would have expected her to just sip it.  She necked the whole glass and then immediately demanded another one.  The very next day she spent all morning flopped on the settee and couldn't even be bothered to choose what to watch on tv.  At that point I knew I was not imagining things and that I should take her to the doctor.

Why I didn't spot it sooner has always bothered me, I was suspicious for a few weeks but didn't do anything until things got quite bad. I knew full well what the symptoms are but kept hoping that I might be wrong and that there would be some simpler explanation (after all I am not a doctor and I don't know if there are any other conditions with similar symptoms). In denial I guess!  Daughter was eventually admitted to hospital with BG of 46 and the very beginnings of DKA, if we'd waited one more day she'd have probably been in a coma


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## Brendan (Mar 17, 2014)

Wow loads of different stories but a pretty common theme about many people having problems before diagnosis.
Looking back now I think that I had D for quite a few years before diagnosis. Symptoms were:
Tiredness - Literally could not get out of bed on a Saturday morning as I was so tired after working all week. Kids would be playing on their own downstairs and I would be fast asleep. Not in line for parent of the year award
Pains in legs - Since diagnosed as neuropathy but I just thought it was a sign of getting old 
Thirsty - Could easily down a few pints of soft drinks at a time and felt it was "normal"
Weeing a lot - Put that down to the above
Losing weight - Lost about a stone and a half without a change to diet or exercise. just pleased with that definitely did not think it was something that needed to be looked into
Had pneumonia - Alsd in that period (about 6 years ago, I have been diagnosed for 2.5 years) I was hospitalised with pneumonia. Amazed that they did not do any checks then

All in all a very similar story to everybody else. The symptoms on their own do not seem at all serious or concerning but when considered together it is quite evident that I should have done something earlier.


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## DeusXM (Mar 17, 2014)

Out of interest, does anyone else think that a radio campaign quoting little snippets from all these stories might have been more effective in getting people to check their diabetes risk than the massive-posters-of-people-crying campaign that Diabetes UK went with?


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## Sally71 (Mar 17, 2014)

DeusXM said:


> Out of interest, does anyone else think that a radio campaign quoting little snippets from all these stories might have been more effective in getting people to check their diabetes risk than the massive-posters-of-people-crying campaign that Diabetes UK went with?



Or a TV one a bit like the coughing lady who ought to get it checked out in case it's lung cancer.  Those poster ads didn't exactly say much about what diabetes is, or how to spot it, did they!  Good idea Deus!


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## heasandford (Mar 17, 2014)

We were all in denial about it, despite apparently knowing the symptoms! 

I was 49, had been 8 stone 4 all my life except when pregnant, yet ignored huge weight loss (in fairness there is no scale in the house), drinking lots which meant weeing lots! People asked afterwards, weren't you tired - yes, of course, but I had 2 young children and a husband working away. It took me about 6 months to get the message, I ended up in hospital immediately after I saw my very on-the-ball GP, but despite having a BG of 29 I didn't get any medication for a couple of weeks. When I went back to the hospital they were suggesting metformin, I am eternally grateful to the senior consultant who told them all they must be joking and 'get the girl (!) on insulin now!' So I have never had to argue that one despite my age, and am now on a pump.

I wonder what would have made me act any earlier?


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## DeusXM (Mar 17, 2014)

Sally71 said:


> Or a TV one a bit like the coughing lady who ought to get it checked out in case it's lung cancer.  Those poster ads didn't exactly say much about what diabetes is, or how to spot it, did they!  Good idea Deus!



A much better option than the DUK one would have been something like a poster with a confident, healthy looking woman with "I was tired and thirsty all the time. I thought it was because I was a busy working mum. Actually, it was because I had untreated diabetes." Then follow up with some print saying 'Diabetes can affect anyone at any age, and if ignored can be serious and even life-threatening. But if properly managed, you'll be healthy as anyone and it won't slow you down. Check your risk at diabetes.org.uk'

I swear that would have a)made people understand their risk and symptoms better, b)made them less frightened about getting tested and c)made those of us with diabetes feel less like the walking dead or a tragedy in slow motion.


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## Bloden (Mar 17, 2014)

DeusXM said:


> Out of interest, does anyone else think that a radio campaign quoting little snippets from all these stories might have been more effective in getting people to check their diabetes risk than the massive-posters-of-people-crying campaign that Diabetes UK went with?



Missed that campaign - sounds hilarious, loadsa diabetics sobbing! At least they weren't smiling manically. Most publications seem to show us happily injecting while an equally happy friend looks on.


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## Bloden (Mar 17, 2014)

Me again! The symptom that finally sent me to my doctor was persistent thrush. It hardly ever seems to appear on symptom lists even tho its pretty common. Why's this? Cos it's "rude"?  I might've gone to the doctor earlier if I'd known.


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## AlisonM (Mar 17, 2014)

DeusXM said:


> Out of interest, does anyone else think that a radio campaign quoting little snippets from all these stories might have been more effective in getting people to check their diabetes risk than the massive-posters-of-people-crying campaign that Diabetes UK went with?



I like that idea Deus. It makes a lot of sense.


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## heasandford (Mar 17, 2014)

DeusXM said:


> A much better option than the DUK one would have been something like a poster with a confident, healthy looking woman with "I was tired and thirsty all the time. I thought it was because I was a busy working mum. Actually, it was because I had untreated diabetes." Then follow up with some print saying 'Diabetes can affect anyone at any age, and if ignored can be serious and even life-threatening. But if properly managed, you'll be healthy as anyone and it won't slow you down. Check your risk at diabetes.org.uk'
> 
> I swear that would have a)made people understand their risk and symptoms better, b)made them less frightened about getting tested and c)made those of us with diabetes feel less like the walking dead or a tragedy in slow motion.



love it - tell them now!


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## Copepod (Mar 17, 2014)

More agreement with Deus's idea. Obviously would need a few posters to cover a range of sexes, ages, ethnic groups etc. Northerner has direct links with DUK, so he's the best person to draw the organisation's attention to this thread.


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## Susicue (Mar 19, 2014)

My diagnosis was perhaps more by general consenses, I developed T2 when I was pregnant with my last child (26yrs ago). Which got better after his birth. But they always said it would come back in time.
And it did, having a blood test one time they included the BS one and it came back as 8 anything over 7 they said was a diagnosis. That was 10 yrs ago now, still diet controlled luckly.

No real symtoms before, apart from no  energy, no weight loss (unfortunatly)


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## DeusXM (Mar 19, 2014)

> No real symtoms before, apart from no energy, no weight loss (unfortunatly)



One of the things that throws a lot of people is that the most obvious sign of T1 diabetes is weight loss, whereas arguably in T2s, the complete opposite happens - insulin resistance leads to more insulin production, which leads to more fat storage and less fat metabolism.


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## LaughingHyena (Mar 19, 2014)

It is so much eaisier to put all the pieces together in hind sight, but yes I was another who probably should have realised something was going on much earlier. Looking back at photos it's clear I was not right for quite a while.

I was so so tired I could barely make it through the day without a nap. However like others I put it down to having two small children, one who didn't sleep through the night yet. Mums are supposed to be tired right.

I also had a dry throat, not drinking loads of water at once but wanting to have something to sip at almost constantly.

The one the finally drove me to the doctors though was my periods becoming very erratic and lasting ages each time. Though even after diagnosis I was told this must be due to something else once I got my blood sugars down it has never happened again.

I went to the doctors and was told to come back for blood to be taken, which I did a couple of days later.I was told to ring in a week for the results, but got a phone call from the hospital later that day telling me to come in NOW. I did ask if it could wait till morning but was told in no uncertain terms that it was not. Started on an insulin drip that night.

Come morning I felt like I had so much energy it was unbelievable. It was only then I realised how bad I had been feeling for the past couple of months.


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## KookyCat (Apr 15, 2014)

I missed them all, well my then Doctor did, I had twelve plus months of extreme thirst, mouth ulcers, ridiculous boils, tingling toes and fingers, blurred vision ( so severe at one point they upped my prescription by two points).  I lost three stone, had recurrent thrush, ear problems and an extreme craving for ice and sugary fizzy drinks and was suffering from nocturnal foot and leg cramps.  I asked about diabetes because my Dad died from complications of type two just before my symptoms started.  I was told I didn't fit the profile.  They did tests and I had a severe b12 deficiency and anaemia and the combo of the two does cause many of the symptoms.  However once that was corrected I still had the thirst, the total lack of energy and as others have mentioned a craving for milk and also fizzy water (nothing else would do it for me).  In late January this year there was a sudden loss of all energy, really terrible ulcers and nausea and what I thought was fainting.  Went up to bed with some chocolate milk woke up in HDU three days later having managed to survive a glucose level of 61.  I was quite the celebrity since they'd never seen anyone survive such high levels.  Looking back I think my symptoms started about six months before but the b12 issue obscured it all.  I didn't even notice the extra weight I'd lost in December I think I'd forgotten what it was to feel like normal.


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## Bloden (Apr 15, 2014)

Jesus! You should sue! Poor you kcat, you've been really ill! I hope you're on the mend.


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## KookyCat (Apr 15, 2014)

Getting there . My glucose levels are now between 4.5 and 6.5 except in the morning when they like to cruise at a slightly higher level, I can walk now which is nice and only having a few bad days a week now.  I considered a complaint to the trust but didn't have the energy, feeling the anger now though so might just do it.  Admittedly I was pushing them about type two because of the familial link and I have to confess I had no idea type 1 could arrive in adulthood, but would it have killed them to test blood sugar!  Weirdly the thing bothering me the most is some nerve damage in my hand caused by an arterial line I apparently pulled out several times, it's my right hand and it makes everything much harder.  I'm one big bruise from injecting with my left hand which is comical 

The important thing is, I'm still here!


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## Bloden (Apr 15, 2014)

Sounds like you've got a great sense of humour that'll help keep you thinking positive. You're seriously injecting with your left hand!  You should be this month's forum heroine.


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## Copepod (Apr 15, 2014)

KookyCat said:


> Getting there . My glucose levels are now between 4.5 and 6.5 except in the morning when they like to cruise at a slightly higher level, I can walk now which is nice and only having a few bad days a week now.  I considered a complaint to the trust but didn't have the energy, feeling the anger now though so might just do it.  Admittedly I was pushing them about type two because of the familial link and I have to confess I had no idea type 1 could arrive in adulthood, but would it have killed them to test blood sugar!  Weirdly the thing bothering me the most is some nerve damage in my hand caused by an arterial line I apparently pulled out several times, it's my right hand and it makes everything much harder.  I'm one big bruise from injecting with my left hand which is comical
> 
> The important thing is, I'm still here!



Bruise is probably less to do with using your non-dominant hand than just one of those things. Every few months, I get a massive colourful bruise, about 3 cm diameter, in either tummy or thigh. It's juts when needle breaks a capillary wall. 

Not so good that you managed to pull out arterial line more than once. Don't nurses know how to bandage properly these days?!? Make me sound like something out of "The Crimson Field" (WWI), even though IVs weren't used then.


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## KookyCat (Apr 15, 2014)

Yes left handed injections are fun, the left handed writing is less of a success though 

I do have form on the yanking of arterial lines/drips without conscious knowledge of course, but not sure why they didn't cover them.  They stitched it in twice and apparently went through the nerve on one of the attempts.  It's not numb anymore in fact it's rather sore and I'm assured this is good.  I have however, worked out a way to apply nailpolish with Timmy hand so the important things are covered


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## Bloden (Apr 16, 2014)

What's a Timmy hand?!


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## AlisonM (Apr 16, 2014)

It's the left hand, I know this cos I'm a southpaw myself.


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## Bloden (Apr 17, 2014)

AlisonM said:


> It's the left hand, I know this cos I'm a southpaw myself.



Why Timmy?


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## KookyCat (Apr 17, 2014)

I don't know, my Mum's a lefty and that's what she's always called it, I'll have to ask her

I call my right hand Tommy, but just because Timmy and Tommy go nicely together, I'm not clinically insane yet, it comes from not a total inability on my part to tell left from right as a child so Timmy and Tommy it was


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## Bloden (Apr 17, 2014)

There's lots of little lefties at work (I'm a teacher), so I'll have to teach them Timmy and Tommy. They love things like that!


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## chattygirl197811 (Apr 17, 2014)

Interesting thread... I was diagnosed in May 2010. I  had been weeing a lot, felt tired and constantly thirsty. I thought it was probably stress related as I was busy organising my wedding and house move. I asked my GP to test me for diabetes really to put my mind at ease I didnt expect the result to come back positive. I got the diagnosis the day after my wedding day! I was diagnosed type 2 but and then more recently it was suggested I have LADA .. Im still trying to get this confirmed!


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## tejbat6 (Apr 17, 2014)

what symptoms?, even the doc was bamboozled at first
Dx`d in 95 after throwing up around half 2 in the morning after having a meal out and 2 drinks at the most
final straw was going on hols with caravan and broke our journey at a site near Newark with pub across the road in old railway station (Carlton on trent ??)
woke up at 2am and dashed to the bog. had some difficulty deciding which end to put over the porcelain for an hour or so.
Then spent the rest of the night in the car passenger seat cranked back at 45 deg and left hand on the door which I dare not fully close
could not lay flat or sit up else it was `huughy` on an MT stomach
at the time we blamed the pub grub, wrongly as it turned out
rest of hols went ok.
swmbo demanded I see a doc when we got home. I said naaah, its ok now
So it happened again over the next month or so
With arm twisted up my back "we" went to see the doc
after weeks of various tests and hospital visits we got a phone call on xmas eve asking if "we" could see him at 5pm 
Phew! it was ONLY Diabetes
swmbo was not amused as Quote " I`ve got a fridge and freezer full of stuff for xmas and new year"
It was the strangest presentation of D he had seen
I had not noticed any/much change in drink/pee regime
I was working shifts at the time, think I was on permanent nights at the time (4.5 yrs of it) and cycling anything from 200 to 600kms on events on a weekend as well as a couple of hrs every other day during the week and using Hi5 energy drinks all the time
So the last thing on my mind, and the doc, was D
as with most things that go wrong with this heap of lard, investigating one thing usually turns up summat else of a more serious nature
they blamed my getting up to pee 2 or 3 + times during the night (off perm nights by now) on the D
Cutting an even longer story short it turned out to be prostate cancer and the knife 
Alls well that ends sort of well as they say...whoever they are :


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## tejbat6 (Apr 17, 2014)

*Ladas*

chattygirl187811 mentions LADA and 1.5
can one of you ex spurts explain it in very simple terms please
keep seeing it on various posts
sorry if its been explained before

Had a Lada once, wife worked in the office of a Citroen/Lada dealership so got a good discount. a 1.6. you could watch the fuel gauge needle dropping
gas pipe thick exhaust pipe. vicious brakes, either full on or not. same with the heating
suppose they needed it in Siberia
swapped it for a ..............Capri


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## KookyCat (Apr 17, 2014)

I had a conversation whilst in the hospital with two endocrinologists about 1.5, and they said it was quite common for people to be diagnosed as type 2 because the assumption is if your over thirty it's type 2 and they don't routinely do the antibody test.  I was lucky I suppose that I was admitted in such a state that they did the full range of tests and I was swimming with those antibodies so type 1 confirmed right at the beginning.  They also said that with latent autoimmune disease it can be gradual or quite sudden.  Just makes me wonder how many type 2's are actually slow growing type 1's.  Coincidentally when my Dad was in hospital just before he died, they suggested he may have been 1.5 because one of the test showed antibodies.  At the time I had no idea what that meant but it makes me wonder now.  I suppose they don't do the full range of tests because it's expensive but surely not as expensive as complications further down the line?

On a complete tangent I'd never realised how much "judgement" there is around type 2 until now.  The number of pharmacists and nurses and general folk whose attitude changes when I say type 1 instead of two is quite astounding, and these are people who should understand what a metabolic disorder is.  I suppose it hits home for me because my Dad used to talk about how he was treated sometimes and I didn't really understand, and now I do.


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## AlisonM (Apr 17, 2014)

According to figures I've read Kooky, it's around 22-25% of those diagnosed as T2 who are actually LADA. I was originally told I was T2 and had a real battle on my hands to get the tests done that proved I'm not. I am a classic T2 to look at, fat and over 40 but had no history of T2 in the family, even though there is a lot of obesity and high blood pressure, high cholesterol/strokes in the clan, there were no diabetics. I'd also been tested for T2 less than 6 months earlier with no sign of a problem. I'm different from the rest of my tribe as well, because I have low blood pressure, a couple of other autoimmune conditions that they don't and a permanently low red cell count/anaemia. All of this, plus the fact that the meds weren't working I took as signs that something didn't fit.


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## KookyCat (Apr 17, 2014)

I'm not an expert because I'm quite new to this but I did annoy the hell out of the consultant with questions so this is what I understand.  Type 1 diabetes is caused by an autoimmune reaction where your immune system forms a firm grudge against the pancreas, specifically the cells that produce insulin, so little to no insulin is produced.  Type 2 is a metabolic disorder, the pancreas still produces insulin but the body can't use it effectively, so drugs like Metformin are used to help the body use the insulin that is being produced.  LADA is latent autoimmune in adulthood, where the autoimmune reaction can be gradual, so it slowly destroys the cells that produce insulin, so it can appear more type 2ish than type 1ish because some insulin is still being produced.  However I understand that eventually the autoimmune will destroy all the cells producing insulin so insulin injections will be necessary, no idea how long eventually is though!


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## KookyCat (Apr 17, 2014)

That's interesting, I had no idea it was that many!  I also have a low red blood count and low blood pressure, but we have a few type 2s in the family line, with the classic cuddly apple shape as the predominant body shape.  They are also quite teeny, except for us three genetic kickbacks who are six foot plus and more athletically built (or as I like to say, I'm apple but stretched over long bones!).  I fear I'm rambling, it's all this not working business I don't get to talk for 8 hours a day.  Do you think the low red blood cell count and low blood pressure are related?  Just interested because every time I have my bp done or have a blood test I have to explain that it's normal for me, I dip into anaemia periodically and my bp is always on the low side unless I'm amped on caffeine then it's normal.


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## Andy HB (Apr 17, 2014)

Hi KookyCat. I agree with what you said in your post. In addition, I think Type 2's may start to lose their insulin production as well if the condition proceeds uncorrected. That's why some Type 2's have to inject insulin as well as possibly taking other drugs to overcome any continuing insulin resistance.

Andy


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## AlisonM (Apr 17, 2014)

Yes, that's about it, though some T1s also still produce a little insulin from time to time. The progression of LADA can be affected by a great may things and it's impossible to tell how long the deterioration process will take. I was on insulin within 6 months, but I've known others who took years to get that far.


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## AlisonM (Apr 17, 2014)

Andy HB said:


> Hi KookyCat. I agree with what you said in your post. In addition, I think Type 2's may start to lose their insulin production as well if the condition proceeds uncorrected. That's why some Type 2's have to inject insulin as well as possibly taking other drugs to overcome any continuing insulin resistance.
> 
> Andy



You're right Andy, especially those on sulphonyureas (Gliclazide, Sitaglipin and the like) which trick the pancreas into producing more insulin in the hope that flooding the system will allow the body to catch at least some of what's put out. The poor beleaguered pancreas can only do so much after all.


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## chattygirl197811 (Apr 17, 2014)

Tejbat6 I think the others have probably explained LADA better than I can. When I first heard the term it made me think of the massive ladder my nan used to have in her kitchen! Im still trying to get my head around it all. My understanding is that its adult autoimmune diabetes where the pancreas can pack in all of a sudden or slowly sometimes up to 6 years from initial type 2 diagnosis I was told. The upshot of it is the diabetes becomes type 1 or closer to type 1 than 2 if that makes sense!


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