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Discussion in 'Type 1 Diabetes' started by Mad76, Apr 25, 2019.

  1. Mad76

    Mad76 Type 1 · Well-Known Member

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    Hi there everyone,
    I'm quite new on here, been reading for a couple of weeks and finally have got the courage to post.

    To cut a long (very traumatic) story short I went to see my gp after experiencing extreme thirst, lots of weeing, and blurry vision. He pretty much immediately diagnosed me as type 2. Had high bg levels (14) so started on metformin

    2 weeks later I find myself extremely Ill. Rushed to hospital. Very nearly died, spent 3 days in ICU in DKA.

    Since been diagnosed as type 1. Am now on novorapid 3 times a day. Lantus overnight. Plus metformin.

    It's been really stressful but I'm trying to be positive and learn all I can about this. Feel like my whole life has changed overnight.. the gp tells me diagnosis at the age of 42 of type 1 is very rare.


    Any words of advise would be welcome. I'm feeling completely overwhelmed. And live in fear of DKA again.
     
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  2. Mike d

    Mike d Type 2 · Expert

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    I'm not T1 but there are experts on here that are .... just be patient as someone (a few no doubt) will be back to you before you know it. Take care
     
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  3. EllieM

    EllieM Type 1 · Moderator
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    Welcome to the forums. Unfortunately plenty of T1s get DKA at diagnosis but very few get DKA after that, as it requires persistent high blood sugars and lack of insulin. You're not going to get it if you keep testing and keep taking your insulin. I've been T1 for 49 years and have never had a DKA (was diagnosed early by a T1 mother so did not have one at diagnosis). Though I've had plenty of periods of mediocre blood sugar control I've never even been near a DKA. And excepting a zombie apocalypse (at which point my survival chances are zilch) I'm not expecting to get a DKA in the future either.

    Hypos are another matter unfortunately, but the technology to control T1 is now very very good, so I could argue that there's never been a better time for a T1 diagnosis. :).

    Yes, there is a lot to get on top of as a new T1: carb counting, balancing insulin to meals and exercise, corrections doses, hypos. But it is all manageable with time, and when you've got the hang of it you should find that you actually have more food freedom than T2s, because you're not carbohydrate intolerant, you "just" have to work out how much to inject for your meals.

    Not sure why you're still on metformin if you're T1? Hopefully your doctor can explain and hopefully he'll now realise that T1 can occur at all ages, which may save his next undiagnosed T1 patient's life.

    There are plenty of T1s on these forums, so you are not alone. Remember managing T1 is a marathon not a sprint, you will become a pro in the end even if it seems like a lot to learn in the beginning.

    Good luck.
     
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  4. Kittycat_7_

    Kittycat_7_ Type 2 · Well-Known Member

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    Hi,
    Welcome to the forum,
    Will tag @daisy1 for her welcome pack for new members.
    Some of it is for type two.
    I'm sorry to hear how poorly you've been.
    Take care
     
  5. daisy1

    daisy1 Type 2 · Legend

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    @Mad76
    Hello and welcome to the Forum :) Here is the Basic Information we give to new members and I hope you will find it both interesting and helpful.

    BASIC INFORMATION FOR NEW MEMBERS

    Diabetes is the general term to describe people who have blood that is sweeter than normal. A number of different types of diabetes exist.

    A diagnosis of diabetes tends to be a big shock for most of us. It’s far from the end of the world though and on this forum you'll find well over 300,000 people who are demonstrating this.

    On the forum we have found that with the number of new people being diagnosed with diabetes each day, sometimes the NHS is not being able to give all the advice it would perhaps like to deliver - particularly with regards to people with type 2 diabetes.

    The role of carbohydrate

    Carbohydrates are a factor in diabetes because they ultimately break down into sugar (glucose) within our blood. We then need enough insulin to either convert the blood sugar into energy for our body, or to store the blood sugar as body fat.

    If the amount of carbohydrate we take in is more than our body’s own (or injected) insulin can cope with, then our blood sugar will rise.

    The bad news

    Research indicates that raised blood sugar levels over a period of years can lead to organ damage, commonly referred to as diabetic complications.

    The good news

    People on the forum here have shown that there is plenty of opportunity to keep blood sugar levels from going too high. It’s a daily task but it’s within our reach and it’s well worth the effort.

    Controlling your carbs

    The info below is primarily aimed at people with type 2 diabetes, however, it may also be of benefit for other types of diabetes as well.

    There are two approaches to controlling your carbs:

    • Reduce your carbohydrate intake
    • Choose ‘better’ carbohydrates
    Reduce your carbohydrates

    A large number of people on this forum have chosen to reduce the amount of carbohydrates they eat as they have found this to be an effective way of improving (lowering) their blood sugar levels.

    The carbohydrates which tend to have the most pronounced effect on blood sugar levels tend to be starchy carbohydrates such as rice, pasta, bread, potatoes and similar root vegetables, flour based products (pastry, cakes, biscuits, battered food etc) and certain fruits.

    Choosing better carbohydrates

    The low glycaemic index diet is often favoured by healthcare professionals but some people with diabetes find that low GI does not help their blood sugar enough and may wish to cut out these foods altogether.

    Read more on carbohydrates and diabetes.

    Over 145,000 people have taken part in the Low Carb Program - a 10 week structured education course that is helping people lose weight and reduce medication dependency by explaining the science behind carbs, insulin and GI.

    Eating what works for you

    Different people respond differently to different types of food. What works for one person may not work so well for another. The best way to see which foods are working for you is to test your blood sugar with a glucose meter.

    To be able to see what effect a particular type of food or meal has on your blood sugar is to do a test before the meal and then test after the meal. A test 2 hours after the meal gives a good idea of how your body has reacted to the meal.

    The blood sugar ranges recommended by NICE are as follows:

    Blood glucose ranges for type 2 diabetes
    • Before meals: 4 to 7 mmol/l
    • 2 hours after meals: under 8.5 mmol/l
    Blood glucose ranges for type 1 diabetes (adults)
    • Before meals: 4 to 7 mmol/l
    • 2 hours after meals: under 9 mmol/l
    Blood glucose ranges for type 1 diabetes (children)
    • Before meals: 4 to 8 mmol/l
    • 2 hours after meals: under 10 mmol/l
    However, those that are able to, may wish to keep blood sugar levels below the NICE after meal targets.

    Access to blood glucose test strips

    The NICE guidelines suggest that people newly diagnosed with type 2 diabetes should be offered:

    • structured education to every person and/or their carer at and around the time of diagnosis, with annual reinforcement and review
    • self-monitoring of plasma glucose to a person newly diagnosed with type 2 diabetes only as an integral part of his or her self-management education

    Therefore both structured education and self-monitoring of blood glucose should be offered to people with type 2 diabetes. Read more on getting access to blood glucose testing supplies.

    You may also be interested to read questions to ask at a diabetic clinic.

    Note: This post has been edited from Sue/Ken's post to include up to date information.
     
  6. urbanracer

    urbanracer Type 1 · Expert
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    I got T1 at the age of 54 and although statistically rare there seem to be quite a few of us here who've been diagnosed in later life.

    On reflection, I'm grateful that I didn't have to endure the daily ritual of testing and injecting during my younger and more carefree days (see - you can put a positive spin on anything!)

    Welcome to the forums.
     
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  7. Deleted Account

    Deleted Account · Guest

    Welcome @Mad76

    There are some very experienced people on the forum with type 1 who are very happy to answer questions ... there is no such thing as a silly question.

    One thing you will find is that 9 out of 10 people with diabetes have type 2 diabetes. This is a different condition to type 1 and much of the advice is not applicable. However, as the proportion of forum members follows the general population, much of the content of the forum is type 2 focused. You can learn a lot from this but please read it carefully and make sure it is applicable, For example, many people with type 2 find low carb high fat diet helps them to maintain their diabetes management without drugs. This diet is less common for people with type 1 and many of us maintain good management eating normally.

    One myth about diabetes is that it is a childhood disease. Unfortunately, even doctors do not know that more than half of people with type 1 are diagnosed over the age of 20. This includes me - I was slightly disappointed to learn I did not get a childhood disease at the age of 36 as I liked the idea of being a big kid!
    I am not a fan of Theresa May but her ability to deal with the stress of running the country (especially with Brexit) as someone diagnosed with type 1 diabetes at a similar age to you. You are not alone.
     
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  8. Muneeb

    Muneeb Type 1 · Well-Known Member

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    Been type 1 for over 18 years, but I got it from a young age. I was the same at first, carefree just doing what was needed to get by. I then realized the potential harm I was doing to my body and focused on my diabetes management (A lot of good stuff on here and facebook groups).

    One thing that really changed how I managed my diabetes was getting in to fitness, it gave me an excuse to be the fittest and healthiest I've ever been, eat clean (which helped massively with insulin dosing), increased insulin sensitivity (and consequently reduced the amount I needed).

    I'm not going to say that its still not a challenge on a day to day basis, especially when you are ill etc. But now if my glucose levels go over 10 mmol I have messed up significantly, whereas before running at 10 was average for me and I never batted an eye lid (neither did the diabetic consultants).

    We are all here to help, anything I can help with I will definitely do so. As mentioned above just e careful about if advice is aimed at type 2's or type 1's as although some things are applicable across the board not everything is.
     
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  9. becca59

    becca59 Type 1 · Well-Known Member

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    @Mad76 Similar story to mine. Like @urbanracer I was 54. After discharge from hospital, during a conversation with my GP, he told me that I should be able to reduce my testing to twice a week eventually. He still didn’t get it. They are badly trained regards diabetes in my opinion. I attended a conference a couple of years ago where a high % of the delegates were diagnosed as adults.
    Life does change, it cannot be denied. But as the weeks go by and you start to feel more confident and less nervous you will be surprised by how it just fits into your life. I feel far healthier now as I know eating healthily and exercising regularly is important. But more importantly, it doesn’t stop me doing anything. And it shouldn’t stop you.
     
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  10. Goacher55

    Goacher55 Type 2 · Well-Known Member

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    That is one of the best lines I’ve ever read you’ll be surprised how it just fits into your life.. so true
     
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  11. Mad76

    Mad76 Type 1 · Well-Known Member

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    Thanks for those lovely replies, I'm going to answer. And then ask you more questions !

    I was diagnosed 3 weeks ago. Have managed to have 4 apps with the nurse. But I think shes sick of me and my questions!! The NHS doesn't have time for me to keep making apps with my lists of we questions... but it's all so new
     
  12. KK123

    KK123 Type 1 · Well-Known Member

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    Hi there, I am so glad you are now ok. Your story incenses me though, yet another Dr who is happy to make assumptions based on age and probably just the 'look of you'. Sends you off most likely with NO means of being able to test your glucose over the coming days which if nothing else, might have shown you dangerously increasing glucose levels. WHY do they do this?, it is reckless as far as I am concerned. ANY newly diagnosed diabetic should be viewed on the basis of 'they may just be type 1', give them a monitor, give them a ketone tester, get them back in in a fortnight, maybe do some actual tests if there is doubt and THEN categorise them into types and treat accordingly. I was exactly the same as you when I first went to the Doctors (aged 56) and the ONLY reason they didn't diagnose me right then as type 2 was because I was slim, that's it! If I had been an overweight person I am sure they would have blithely sent me on my way. Instead they did a quick ketone test and the next thing I know I was en route to hospital on the verge of DKA. If they had sent me home on that day (as they did you) I may have died and that is no exaggeration.
     
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  13. Chowie

    Chowie Type 1 · Well-Known Member

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    Welcome. There is very good reason why juvenile diabetes got renamed to T1. It will seem chaotic and impossible, but it gets so much easier overtime. A few here even think they are normal humans, the rest of us are beyond help, however Diabetes has nothing to with that.
     
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  14. Deleted Account

    Deleted Account · Guest

    I agree but I wonder why JDRF have not changed their name. Perhaps it is to justify their focus on children.

    <<Sorry. I didn't mean to derail the conversation. Feel free to ignore my outburst.>>
     
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  15. Mad76

    Mad76 Type 1 · Well-Known Member

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    This is so true
    The gp literally looked at me. Said I'm type 2. Gave me pills and sent me on my way. Not even mentioning any chance of type 1. It took me nearly dying to be diagnosed. I'm really upset by this, but trying to move on ...
     
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  16. dawnmc

    dawnmc Type 2 · Well-Known Member

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    maybe you need to bring this to the attention of the practice so they can learn from it. An appropriately worded letter maybe.
     
  17. endocrinegremlin

    endocrinegremlin Type 1 · Well-Known Member

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    Your nurse is not sick of you and your questions. I know that much. I have been diabetic for 21 years and I still ask bundles of questions. Their job is to help you and answer the questions. But if it makes you feel better, why not just pop up a bullet list of quests here and the T1s can have a go at answering. I am sure we will all have different answers but if you read between the lines and consider how you feel you might get something that works for you. And my biggest piece of advice? The 'diabetic handbook' is more like guidelines. My diabetes hates most of them. We are all unique. We can only ever try our best. It is ok if you read ten posts saying 'yes my diabetes does think and think 'well....wait, mine doesn't''

    Welcome. It is gonna be ok <3
     
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  18. Mad76

    Mad76 Type 1 · Well-Known Member

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    Thanks so much people

    So I have a list of questions. Should lil d I post each one as a separate thread. Or will that be too much ?? Shall I post them all together ?
     
  19. KK123

    KK123 Type 1 · Well-Known Member

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    I think most of us prefer all together as it gives responders an idea of all of the person's circs. x
     
  20. PeterHud

    PeterHud Type 2 · Active Member

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    Welcome @Mad76 to the forum. Sorry to hear about your story ... You will find there are a million of questions and you will probably say "why me" the info out on the internet is vast.

    I was diagnosed last November at 55... Now it's carb counting and I now do what I did before ... All I was missing was insulin and just slots into my daily routine.

    Yes hypos are a problem at first but after a while you end up knowing what to do.

    DN are just amazing and when I see them I always have questions so don't be afraid to ask them or even ask them on here.
     
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