1. Get the Diabetes Forum App for your phone - available on iOS and Android.
    Dismiss Notice
  2. Guest, we'd love to know what you think about the forum! Take the Diabetes Forum Survey 2020 »
    Dismiss Notice
  3. Diabetes Forum should not be used in an emergency and does not replace your healthcare professional relationship. Posts can be seen by the public.
    Dismiss Notice
  4. Guest, stay home, stay safe, save the NHS. Stay up to date with information about keeping yourself and people around you safe here and GOV.UK: Coronavirus (COVID-19). Think you have symptoms? NHS 111 service is available here.
    Dismiss Notice
Dismiss Notice
Find support, ask questions and share your experiences. Join the community »

How long was I diabetic before I was diagnosed?

Discussion in 'Type 1 Diabetes' started by Catherine_h, Nov 15, 2010.

  1. Catherine_h

    Catherine_h · Well-Known Member

    Messages:
    45
    Likes Received:
    4
    Trophy Points:
    28
    I have been diagnosed just a year now and am pleased to say life is starting to feel normal again.

    Recently, I have been thinking about before I was diagnosed and have realised that I had lots of symptoms of type 1 diabetes including athletes foot, thrush, palpations, quick breathing, tiredness, thirst and weight loss. My GP, hospital etc missed the diabetes mainly due to my age (42) - luckily I found this forum and the kind people here probably saved my life!

    When I was at last diagnosed my blood sugar was 51 and I was very ill.

    Does anybody know how long it takes for Type 1 diabetes to develop? I’m just curious as to how long I had the problem before I knew!
     
    • Like Like x 2
  2. jopar

    jopar · Well-Known Member

    Messages:
    2,222
    Likes Received:
    104
    Trophy Points:
    83
    It's hard to say really how long anybody is diabetic before dignoises of the problem...

    As most T1 diabetics are dignoised when they've reached crisis point, so nobody really knows at what point the pancreas starts failing and how quick it actually fails... A lot of T1's who are dignoised as adults will say similar to you, that they suffered niggly health problems several months before hitting crisis point...
     
  3. phoenix

    phoenix Type 1 · Expert

    Messages:
    5,671
    Likes Received:
    3,674
    Trophy Points:
    178
    They think LADA can take up to 6 years before needing insulin. (and I have heard of longer). I'm convinced that I started developing it over 3-4 years before I was eventually diagnosed in much the same state as you were.
     
  4. Catherine_h

    Catherine_h · Well-Known Member

    Messages:
    45
    Likes Received:
    4
    Trophy Points:
    28
    Thanks for replying!

    It really does make me question why my blood was not tested in the months before I was diagnosed at numerous visits to the doctors, hospital and A & E!

    Catherine
     
  5. noblehead

    noblehead Type 1 · Guru
    Retired Moderator

    Messages:
    23,621
    Likes Received:
    19,622
    Trophy Points:
    278
    Catherine,

    Difficult one to answer really, but I do remember being ill for some time before diagnosis with headaches, gradual weight=loss and increased thirst/urination, were I to put a time on this I would say no more than 6 months.

    Nigel
     
    • Like Like x 1
  6. Curleous

    Curleous · Well-Known Member

    Messages:
    85
    Likes Received:
    0
    Trophy Points:
    26
    I was diagnosed t1 last year aged 44 and am pretty much convineced that i started experiencing symptons maybe up to 2 to 3 years before diagnosis. They were only minor ailments again so was not tested by doctor.
     
  7. Tara

    Tara · Member

    Messages:
    9
    Likes Received:
    4
    Trophy Points:
    23
    Hi,
    Just thought I'd share my experience. I first began to feel unwell in October 2006, I was tired and thirsty all the time, and then had bouts of blurred and/or double vision. I had an eye test, the optician said my vision was perfect, but I disagreed as I was seeing two of everything! My doctor referred me to the eye hospital, but I never got an appointment and the problem disappered anyway. I then began to have difficulty sleeping and had increased appetite but also weightloss ( I thought my dieting days were over and I'd got it all sussed!) Ifelt generally ill all the time, weak, tired and just drained all the time. my doctor prescribed antidepressants and sleeping pills- neither of which worked.
    I was finally diagnosed in December 2008, whilst in holiday in India- I ended up in a coma in a hospital in Goa and needless to say I was extremely upset and confused when I eventually woke up!
    I suppose I cannot be certain that I'd been diabetic since October 2006, but looking back, the symptoms all add up. I just wish that I'd had a blood or urine test done at some point, I know there's nothing anyone could've done to prevent the onset of type1 diabetes, but I'm sure that if I'd been diagnosed sooner, I wouldn't have become so ill whilst on holiday and had all the drama and complications that followed.
    Tara
     
    • Like Like x 4
    • Hug Hug x 1
  8. tom79

    tom79 · Well-Known Member

    Messages:
    54
    Likes Received:
    2
    Trophy Points:
    28
    I wonder why they do not do more tests, it seems a simple thing to do and fast?

    I think mine came on very fast, I was abroad and got a bug, then I started loosing weight and drinking a crazy amount of water and getting out of breath when walking. quick google on my symptoms and it said to get a test so I did and was very lucky to havediagnosed myself. Got it confirmed at the doctors who sent me straight to hospital who said I would have been in serious bother in the not so distant future if I had not come in. :shock:

    I suppose I could have had it for longer, but I certainly only got the syptoms come in a short space of time, but wow 51 BG is massive! you must have felt like a very ill jelly bean. Im glad your ok and glad your on track now feeling good.

    I went away abroad for work, and the places where I went give there staff a proper medical every year, its not an option! why dont we do this in England I wonder? wouldnt it be a good thing for a company to ensure the health of its staff? (less sick and so on) Oh well! but it might just pick up some of these symptoms early on? and other conditions also.
     
    • Like Like x 2
  9. Catherine_h

    Catherine_h · Well-Known Member

    Messages:
    45
    Likes Received:
    4
    Trophy Points:
    28
    Hi

    Yes, when I was diagnosed with a blood sugar of 51 I was really really unwell but the hospital discharged me with no medication and told me to see my GP! they were following guidelines for type 2 because of my age!

    Thanks to this forum (you can see from my previous posts) I got myself back to the hospital for the correct treatment eventually!

    I did complain to the hospital, mainly because I did not want this to happen to anybody else ever!

    I received a long apology, for a list of errors, although the response did state that if I had been diagnosed during the day I would have been treated straight away and discharged the same day! I'm not so sure! The hospital have said they have changed proceedures now, I do hope so although I'm not sure how I could check???

    I'm still really really shocked by the treatment I received, I remember begging for insulin (my brother is type 1 and I knew I needed treatment) I was told by nurses to stop complaining and they were treating my correctly!!

    I know now that many of the symptoms I had for months, maybe years before I was disgnosed were diabetes. I was tested for everything angina, heart problems, codeine allergy and more but never once was my blood tested for diabetes!

    I feel so much better for typing all that! You can probably tell I'm not happy with the way the hospital treated me in the past!

    Luckily I have a great diabetic team around me now!
     
    • Like Like x 2
    • Agree Agree x 1
  10. sugar2

    sugar2 · Well-Known Member

    Messages:
    833
    Likes Received:
    10
    Trophy Points:
    38
    I was diagnosed as a child...and my Mum thinks I had been showing symptoms for about a month.

    What I don't understand Catherine, is why they didn't test you for diabetes, as you brother is type 1? My brother phones me to "complain" every time he goes to the Dr, as they test him for diabetes, because his sister has it. He is quite used to having the finger prick test as he calls it now. I think this is a good thing (and so does he!).

    Interesting thread!
     
    • Like Like x 3
    • Agree Agree x 1
  11. Sookie

    Sookie · Member

    Messages:
    14
    Likes Received:
    2
    Trophy Points:
    43
    I was officially diagnosed at 19, however the reason I got diagnosed in the first place is because my old Doctor (family Doctor for most of my childhood) had retired and the new Doctor saw that I took a blood test when I was 13 years old that showed signs of T1 Diabetes. Within hours of getting my file (His words not mine) he rang and left me 4 messages on every possible number he had of mine. Reason why my results were overlooked was not explained by the practice, I got an apology though! Also unfortunately my father was dealing with the death of my mother who died from complications with uncontrolled Diabetes.

    Who knows when I really became Diabetic its a mystery :)

    EDIT: Oh the reason I was tested at 13 was due to me falling very sick at school with food poisoning, my now retired Doctor thought it may be something to do with my Appendix and had me take a blood test and I was also tested for Diabetes because of my mother. I think thats what had happened, it was a nearly 13 years ago and my memory is worse than a fish! :)
     
    • Like Like x 2
  12. markc328

    markc328 · Newbie

    Messages:
    3
    Likes Received:
    2
    Trophy Points:
    23
    Hi Catherine,
    My story is very similar to yours. I was diagnosed at 36 years old. I was a keen runner,doing 10 miles 3 times a week & felt fit as a fiddle (ex-military) .

    My GP missed the diabetes completely & i kept getting thrush & terrible fatigue but the GP Kept saying "You 36 & fit...stop being paranoid...here's some cream for the thrush & stop doing so much running!"

    I finally self diagnosed by doing a free Sugar/Cholesterol test at my local pharmacy...my Blood Sugar was 31..happy days.The pharmacist nearly fell over with shock, as did I.

    I have no idea how long I was diabetic before diagnosis & have been left with some permanent symptoms of the previous high blood sugar ( Bad tinnitus, visual problems & a massive distrust of GP's!) but according to my (new) GP, its probably only a few months before diagnosis that you develop the condition however, I have my reservations about that.

    Best Regards & good luck for the future!
     
    • Like Like x 2
  13. noblehead

    noblehead Type 1 · Guru
    Retired Moderator

    Messages:
    23,621
    Likes Received:
    19,622
    Trophy Points:
    278
    Mark,

    I did read recently that type 2 diabetes can be undiagnosed for up to 3 years, but with type 1 I would imagine we are talking about weeks or months rather than years as the pancreas all but shuts down.

    Nigel
     
    • Agree Agree x 1
  14. jessie

    jessie Type 1 · Well-Known Member

    Messages:
    275
    Likes Received:
    38
    Trophy Points:
    88
    I swear I had a 'niggly pancreas' my whole life. Since being diagnosed at the age of 30 (I started to get ill about 3 months before) I'm generally less lethargic, less thirsty and heal so much better than I ever have. Probably just a coincidence though!

    Jessie.x
     
    • Agree Agree x 1
  15. noblehead

    noblehead Type 1 · Guru
    Retired Moderator

    Messages:
    23,621
    Likes Received:
    19,622
    Trophy Points:
    278
    I don't get ill as much as I us to either Jessie, do you think it may be down to the fact that we take better care of ourselves? I know that my diet has never been better and I am sure this is a deciding factor here.

    Nigel
     
    • Agree Agree x 1
  16. jessie

    jessie Type 1 · Well-Known Member

    Messages:
    275
    Likes Received:
    38
    Trophy Points:
    88
    Good point Nigel, a lower carb / careful diet definitely makes you feel less sluggish!
     
    • Agree Agree x 1
  17. susieg

    susieg Type 1 · Well-Known Member

    Messages:
    112
    Likes Received:
    15
    Trophy Points:
    58
    Reading all your stories is fascinating, I thought I was the only one o be diagnosed T1 later in life. I had no symptoms previously, only headaches, (not thinking for one second it was diabetes) then November 2010 I just sarted feeling very tired, (old age, I'm thinking) then the thirst and urinating frequency, then my eyes went all fuzzy and hurt. I got soooo tired, my other half insisted we go to the GP, my regular GP was away, I saw a Locum, who looked at me and said straight away, you're diabetic.... took a test and a urine specimin, and I had keytones and BG of 33. off to hospital for 3 days, T1 at 62 ????????????? I questioned them, no...not T2. T1 !!! on insulin twice a day, BG now down to 6's and 7's and I feel wonderful again... how mad is that... no infection to trigger it off and NO one else with T1 in my family. I still expect them to tell me it was all a mistake and I wasn't diabetic after all... but one sweet and whooosh !! BG ut to 14.. so I've accepted it now. but is it odd that I was diagnosed that late on?
     
    • Like Like x 2
  18. phoenix

    phoenix Type 1 · Expert

    Messages:
    5,671
    Likes Received:
    3,674
    Trophy Points:
    178
    In T2, there may have been detectable problems with a rise in fasting blood glucose thirteen years before the occurance of T2. There are also unfortunately many people who develop it but it goes undiagnosed until complications set in.
    http://www.medicinenet.com/script/main/ ... key=101072

    It can also take many years to develop T1, the older the person at diagnosis, the more likely it is to be a slowly developing form. Though adults can also have a rapid onset.
    LADA is a subset of autoimmune T1 .One model suggests that in LADA (latent autoimmune diabetes of adults and also in what some researcher's have called LADY (latent autoimmune diabetes of the young) there is a series of autoimmnune attacks followed by beta cell regeneration (we know this cycle of the production of some new cells followed by cell death and regeneration continues to happen in many long term T1s from the Joslin 50 years trials). Each 'attack' leaves the beta cells at a lower level than before. Eventually there aren't enough beta cells left and the person develops overt diabetes. Sometimes they are diagnosed with sufficient cells remaining to manage with oral medication, but sooner or later they will become insulin dependent.
    This diagram illustrates the model.
    Autoimmune Diabetes Not Requiring Insulin at Diagnosis (Latent Autoimmune Diabetes of the Adult)Definition, characterization, and potential prevention. Paolo Pozzilli, MD1 and Umberto Di Mario, MD:Diabetes Care Aug 2001
     

    Attached Files:

  19. ewan

    ewan · Well-Known Member

    Messages:
    134
    Likes Received:
    9
    Trophy Points:
    38
    I am appaled at these posts of not being diagnosed!!!!!

    It must be the easiest thing to diagnose ? thirst, constant widdling, breath a simple cheap wee test

    just shows the level of care we get

    i work for the NHS they never give us medicals and my gp has'nt for years and years

    I would argue very bad practice
     
    • Like Like x 3
  20. HLW

    HLW Type 1 · Well-Known Member

    Messages:
    723
    Likes Received:
    7
    Trophy Points:
    58
    ewan I think the problem is sometimes people don't realise there is something wrong, maybe they think they are going to the loo more due to age for example, and sometimes people can have quite obvious health problems but just don't go to a doctor about it - because they don't like doctors, they don't want to make a fuss, they don't want to seem like a 'wimp', they simply can't be bothered, they are too busy etc etc, there can be lots of reasons.

    Also sometimes the symptoms are not that obvious - they were for me, I went to the doctor and told him I had diabetes, but some people don't have many or any symptoms. It varies from person to person.
     
  • Meet the Community

    Find support, connect with others, ask questions and share your experiences with people with diabetes, their carers and family.

    Did you know: 7 out of 10 people improve their understanding of diabetes within 6 months of being a Diabetes Forum member. Get the Diabetes Forum App and stay connected on iOS and Android

    Grab the app!
  • Tweet with us

  • Like us on Facebook