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Hi all, newly diagnosed Type 1

Discussion in 'Greetings and Introductions' started by Chris1983, Jul 7, 2019.

  1. Chris1983

    Chris1983 Type 1 · Member

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    Hey everybody, I've been lurking around the forums and decided to join up and introduce myself.

    I'm Chris and was diagnosed with what they think is Type 1 diabetes around 5 weeks ago. Sadly my blood results seem to have gone wandering and it's looking more and more likely that they will have to do the test again. My levels were extremely high so I've been prescribed insulin, needles and all the other stuff that comes as part of the package.

    My levels were sitting at around 22-25 but with a bit of trial and error I've managed to get them down to an average of 6-8 after meals, I've had the occasional mishap and gone to low/high again but it's all part of the learning curve I guess.

    It's all been a bit scary and confusing but there seems to be a treasure troves worth of knowledge on here, I don't personally know anybody else with diabetes so I'm looking forward to interacting with you guys and hopefully I'll be able to help others out where I can.


    Chris
     
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  2. Mel dCP

    Mel dCP Type 1 · Well-Known Member

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    Welcome to the club none of us wanted to join... you’re right, it’s a steep learning curve, but you’ll find plenty of support here. Have a look at the Type 1 Stars thread while you’re here, there’s a bunch of us who’ve had it for varying lengths of time just shooting the breeze and living life to the max! Some of the guys here have been at it over half a century, some of us a couple of decades, some just a few weeks or months. Tagging in @Knikki @porl69 @helensaramay @Robinredbreast @WuTwo @MeiChanski @slip @Jaylee @Delticmatt100 - it’s a sunny Sunday but I’m sure someone will be along soon to say hi.

    You’re not alone x
     
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  3. Marie 2

    Marie 2 LADA · Well-Known Member

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    Hi! It looks like you have made great progress so far! Yea, it's a learning curve and sort of always will be. But it's pretty easy to figure out and will just become a normal way of life. A lot of us don't know other type 1's in our everyday life so if you have any questions, there are always people here ready to try to help!

    Welcome!
     
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  4. WuTwo

    WuTwo Type 1 · Well-Known Member

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    Nope - definitely not alone! There's always someone around on the board who can help, chat, advise, or just giggle about the things that other T1's really understand.

    I don't know any real life T1's but I know a good few on here. Come and visit this thread:

    https://www.diabetes.co.uk/forum/threads/type-1stars-r-us.150597/page-961

    And if you have any specific queries - don't be afraid to ask, or be worried that it's a daft question. We all ask questions all the time!
     
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  5. Chris1983

    Chris1983 Type 1 · Member

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    Thank you for your replies!

    I've always been a big eater and one of those people thats always ate what they want when they want, getting used to not being able to do that anymore has been a bit of a challenge but I'm getting there with it slow but sure.

    Sadly my doctor hasn't really given me any useful information, she just slung some printouts at me and sent me on my way so it's great to have a place like this to come to for help and knowledge
     
  6. Marie 2

    Marie 2 LADA · Well-Known Member

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    It sounds like you are a type 1, but I know you are not sure yet.

    But for right now it's more about learning to dose for what you eat and learning to control your blood sugars and how to do that.
    If you are a type 1, you are probably still in the honeymoon phase, which means you are still making some insulin until eventually you won't at all. This makes it a little trickier to learn dosing at the beginning because it will keep changing over time.

    But it's pretty easy to learn and it will just become the normal thing to do. Just keep up the testing your blood sugars so you know what they are doing throughout the day. And keep something like orange juice or a very quick simple candy like gummy/jelly bears for the occasional hypo which we all have at some point.
     
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  7. Scott-C

    Scott-C Type 1 · Well-Known Member

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    Hi, @Chris1983 , on the food front, there's a surprising amount of latitude with T1.

    Sure, you do need to think ahead a lot more than a non-T1 (there are things which you will learn about like the timing of insulin, called pre-bolusing, insulin-stacking, and the absorption rates of different meals) but, on the whole, you can still walk into any restaurant on the planet and eat pretty much anything on the menu.

    Sure, there are some meals and food types which are more bother than they are worth, and you'll learn as time goes by which ones those are for you but, rest assured, if you want to go out for a full fry up brunch or a Chinese buffet, or a five course tasting menu, or street food in Asia, or even just a cheap and cheerful Greggs steak bake, these are all totally manageable for a T1.

    There's a few useful reference books which are worth a read:

    Think Like a Pancreas, Gary Scheiner - covers the basics.

    Pumping Insulin, John Walsh - mainly aimed at people using insulin pumps, but has some very detailed info about how insulin works which is useful for people on pens too.

    Sugar Surfing, Stephen Ponder - discusses how to use cgm, continuous glucose monitoring, which takes a lot of the unpredictability out of T1 and helps tighten up adjusting ratios, basal dose, learning about pre-bolusing and stacking and generally being able to spot and then fix a developing trend before it gets messy.

    Good luck!
     
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  8. Chris1983

    Chris1983 Type 1 · Member

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    To be honest I've never been big on chocolates or cakes so it's a saving grace that I'm not really missing out on those things. Insulin wise I usually take 4 units with breakfast, 6 units with a large meal and 8 units if it's something I shouldn't really be eating (I have weak spot for McDonalds). It seems to be working so far, obviously things might change slightly if this is indeed a honeymoon period as Marie stated.

    A question I have: Lets say I take 6 units and the meal drives my levels up, lets say its 18 after 2 hours, can I take some more of the fast acting insulin to compensate it or is that a no no?
     
  9. Mel dCP

    Mel dCP Type 1 · Well-Known Member

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    Have they given you any indication of what your correction doses might be?
     
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  10. Chris1983

    Chris1983 Type 1 · Member

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    Apart from a handful of leaflets they've given me nothing, been trying to figure it all out myself to be honest. They told me I had diabetes over 5 weeks ago, took some more blood to determine which type and I still haven't had the results back, last I heard they were trying to track down exactly where the blood is. Truth be told they have been pretty much useless, I'm just really glad I've found a place like this where I can get some actual answers from people experiencing the same thing as me.

    So by correction doses I'm guessing you mean that I can indeed put a small amount of top up insulin in myself to pull my levels back down?
     
  11. Marie 2

    Marie 2 LADA · Well-Known Member

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    I can only tell you what I do which is calculate how much insulin I take to what carbs I eat. So what I take will vary to what I eat.

    Different types of insulin can vary, but most are most effective at 1 to 3 hours , but can keep working say up to 5 or 6 hours later.

    So usually you will learn to adjust your insulin to how many carbs you eat, not a set amount. So more carbs, more insulin.

    Correction doses are when you are to high, but you want to be careful of what we call stacking, which is taking more insulin while we still have insulin working. That can causes hypo. Some Prebolusing would help.
     
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  12. WuTwo

    WuTwo Type 1 · Well-Known Member

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    I found Using Insulin by John Walsh very useful - I use pens, not pumps and didn't really want his Pumping Insulin because I thought there might be a bit much not too relevant.

    I agree that Think Like a Pancreas is handy.

    Once you've finally been diagnosed the Diabetes Team will see you, and you will be taught a bit more and hopefully offered a place on a DAFNE course (Dose Adjustment for Normal Eating).

    In the meantime there's a fairly useful online course BERTIE https://www.bertieonline.org.uk/
     
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  13. helensaramay

    helensaramay Type 1 · Expert

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    Thanks for the tag @Mel dCP and welcome to the club which includes international try scoring rugby players, Oscar winning actors, renowned musicians and a prime minister. This may sound a bit of a throw away thought but it inspires me to continue to do what I want and make sure I manage diabetes rather than diabetes managing me.

    As others have said, there is a lot to learn. One very important thing to learn is diabetes has not read the rule book. So don’t expect perfection; and don’t try to control diabetes.

    There are lots of helpful, knowledgeable people on the forum with type 1. However, 9 out of 10 people with diabetes have type 2. So, another important thing to learn is type 1 and type 2 diabetes are different conditions with different causes and different treatments. This means a lot of what you read on the forum is targeted towards type 2 and not necessarily relevant to someone with type 1.

    My last lesson is expect to keep learning and don’t expect to know everything about diabetes at the start ... or ever. Some people are getting great results with closed loop management (insulin pump, CGM and clever software). Whilst this sounds very exciting, I strongly recommend mastering the basics of calculating insulin doses and timings without any of these gadgets. Unfortunately, they can fail and if you don’t know the basics, you have no back up.

    Ask questions and expect inconsistencies.
     
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  14. Robinredbreast

    Robinredbreast Type 1 · Oracle

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    Hi and welcome to the club no one wants to join ! :rolleyes: but In time in will get easier as there is a lot to take in and it can be scary at first, but with support and advice, you will get there.
    Take care and if anything is worrying you or you just want to have a moan, just post and someone should be along :)
     
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  15. Chris1983

    Chris1983 Type 1 · Member

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    I just want to say thank you to you all for your replies, its really reassuring to know I have people I can talk to about this stuff.

    It's going to take some time but I'm starting to get a handle on it all now, like most people I didn't really know anything about diabetes until it cam knocking on my door.

    I've had a couple of tantrums and felt a little low about it all at first but my head is getting into the right place now, it is what it is and all we can do is soldier on through it and look out for each other.
     
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  16. Scott-C

    Scott-C Type 1 · Well-Known Member

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    Yes and no.

    In these early days, you might be in honeymoon, so your pancreas might be producing insulin occasionally which might drag it down so a correction on top might drag it too low, although at 18 there's a lot of leeway.

    Fast-acting operates over about 5 hrs. If it turns out that after 5 hrs you're back to where you started pre-meal then that indicates the amount was about right, but to avoid the spike some cautious experimentation with pre-bolusing might be useful - insulin takes about 20 mins to get distributed around the body before it starts working, so if you inject at the same time as a meal, the insulin will be playing catch up with the glucose, whereas injecting about 20 mins before lets the insulin deal head on with the glucose leading to a lower spike. The timing does vary between individuals, though, and will also depend on the gi of the food type though: pulses, for example take a long time to break down into glucose and be absorbed, so I'll rarely pre-bolus at all for a bean based meal, whereas if there's some toast involved, that'll break down pretty quickly, so 20 to 30 mins would suit that, for me at least. Be careful with this if you decide to try it - get it wrong and your bg can drop quite rapidly if the food is taking longer than expected to digest. Many people try it by adding 5 min increments with various food types to see what works for them.

    The other issue is what bg level you started at before the meal. If you started at 5 or 6, up to 18 is a big bounce, and while pre-bolusing might have mitigated that a lot, there may also be questions about whether the dose amount was too little - seeing where it's at after 5 hrs will give clues on that. If, though, pre-meal was already 10 to 12, insulin has a much tougher job to do I can easily need twice the amount of insulin at higher levels - , so I would probably have been tempted to do a correction of a few units to bring it down to around 5 to 6 for eating - T1 sometimes requires patience!

    The carb count will also play a part. Although we do have leeway in this, moderation also plays a big part. I'm not going go be hoovering up an 18 inch pizza and chips any time soon, but a half pizza and a side salad does the trick. Sometimes just reducing the portion size is enough to make it more manageable. I go to an Italian restaurant near me once a week or so - a panini and bowl of olives, say, 50g , or bit of lasagne, say 40g, does me fine, and about 80g of tortellini is good too, whereas I'm always a bit astonished by the people who are tucking into a bowl of spaghetti and a plate of chips..

    Once you get the basics like dose amount and timing right, and decide whether honeymoon is influencing things, then, yes, inter-meal corrections are a valuable tool. It's frowned on by nurses as it conflicts with DAFNE advice to avoid doing it, which advocates leaving corrections until meals, but, heck, we're grown adults and can make our own decisions about these things. Now that cgm is slowly becoming more common, many of us take the view that it makes perfect sense to correct if we see a line which left uncorrected would take us too high - why wait till you're too high when you can pin it while still in range? It is trickier to do with strips because it's not as easy to see the trend or keep track of insulin on board, but, yes, if I was at 18 I'd be tempted to do a correction between meals.

    Here's an example of a correction I did. I'd pre-bolused 8u about 30 mins before lunch, put it down as 50g but it was at the cafe next door to my work so it was a bit of a guestimate. By 13:20 I could see it had been trending upwards for 20mins, you can't see it on the graph, but at the time there was a prediction showing and that and the trend and past experience were suggesting that I'd underestimated the carb count and it would carry on to above 8 so I fired in a 3u correction which pinned it nicely. It would normally only have been 1 ir 2u for that, but I quite like a biscuit or two in the afternoon, so thought I may as well do 3 to cover that too.
     

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  17. Chris1983

    Chris1983 Type 1 · Member

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    Thanks for the advice Scott, its greatly appreciated.

    I think for now I'll stick with the routine I'm using, it seems to be going ok and any time I go that bit over it's because I over/underestimated what I was eating, its that learning curve again. I will take into consideration that I can have a small top up if required, its good to know.

    Pasta actually took me by surprise, I love the stuff and always thought it healthy, I was mortified when I had a spag bol and it threw me into the 20's. I did eat about about a full bag of it though, I have a massive appetite for a skinny guy which has caused a couple of issues, I find it hard to cut back on my portion sizes.

    I also didn't know that I should use my insulin 15-20 minutes before actually eating, my doctor said to just take it with food, a time was never specified although I suspect she just read it on Google somewhere, she doesn't really seem to know a lot about the subject.


    This is all really helpful stuff, thank you for your replies
     
  18. JAT1

    JAT1 Type 1 · Well-Known Member

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    [/QUOTE]A question I have: Lets say I take 6 units and the meal drives my levels up, lets say its 18 after 2 hours, can I take some more of the fast acting insulin to compensate it or is that a no no?[/QUOTE]
    Scott C has given a very informative reply to this. Just to add, keeping a journal, recording what you ate and the amount of insulin taken, is very useful so that the next time you eat the same or a similar meal you can estimate that you will need more insulin. Other things, stress and exercise for instance, also contribute so the result may not be the same but eventually you will get a grip on your insulin to carb ratio. Fixed bolus doses do not take into consideration different meals and different carb counts consumed. I was on fixed doses at first and later I switched to carb counting and dosing based on the meal I was going to eat.
     
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  19. Chris1983

    Chris1983 Type 1 · Member

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    A question I have: Lets say I take 6 units and the meal drives my levels up, lets say its 18 after 2 hours, can I take some more of the fast acting insulin to compensate it or is that a no no?[/QUOTE]
    Scott C has given a very informative reply to this. Just to add, keeping a journal, recording what you ate and the amount of insulin taken, is very useful so that the next time you eat the same or a similar meal you can estimate that you will need more insulin. Other things, stress and exercise for instance, also contribute so the result may not be the same but eventually you will get a grip on your insulin to carb ratio. Fixed bolus doses do not take into consideration different meals and different carb counts consumed. I was on fixed doses at first and later I switched to carb counting and dosing based on the meal I was going to eat.[/QUOTE]

    Thank you for your reply

    I've just been reading up on carb counting on here, I think it would be wise to attend one of the courses available to truly learn the ins and outs of it.

    I've noticed a lot of members here stated that they use a low carb diet, how does that affect weight? While I can see the benefits of a low carb diet I don't want to be losing any weight, I'm 6'2 and weigh less than 80kgs already
     
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  20. Mel dCP

    Mel dCP Type 1 · Well-Known Member

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    I haven’t lost weight eating low carb, unfortunately I’m still eating more calories than I burn, so I’ve gained about two stone. But I like eating this way for the effect on my blood glucose levels, bacuase I never could get the hang of dosing properly for high carb foods.
     
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