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Newly Diagnosed T1D very overwhelmed

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This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
D

Daisycoo

Active Member
Relationship to Diabetes
Type 1
Hi,
I’ve only been diagnosed a week. Very overwhelmed with it all, there is so much information to take in. Started carb counting and have a ratio of 1u:10g. Feeling a little frustrated, alone and defeated tonight, doing everything I have been asked to do by my nurse/dietitian but my BG is still super high. Managing the injections etc, even if the finger pricks have made my hands sore. Ranging between 16-32.7 on the meter, which isn’t good. Hoping this is normal for being a week in to this diagnosis? And it’ll settle down soon. Fuzzy vision/leg pains aren’t fun at the best of times. Nevermind, got to learn to live in my new normal. To be honest, it is a relief to know and finally have I diagnosis. Maybe I’m reading to much into it all at the moment. Never rains but it pours eh folks.
 
Welcome @Daisycoo and sorry you’ve had to join us. A blood sugar of 16 after diagnosis isn’t unusual but 32 is and you want to avoid that really. Have you been given a means to test for ketones? I’d phone your team and get some advice if you’re frequently going that high.

Having said that, don’t feel defeated. Nobody - absolutely nobody - gets perfect blood sugars all the time. The thing to get your head round about Type 1 is that perfection is impossible and things frequently need tweaking. So getting a high isn’t failing.

How’s your blood sugar at the moment? What insulins are you taking?
 
jeanettem1 said:
Hi, welcome to the forum. I don’t know where everyone is. I’m type 2 so can’t offer you any help. Will have a look on the other forums to see if I can get someone for you.
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We’re writing our replies 😛
 
jeanettem1 said:
Great
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Knowing the insulins will help @jeanettem1 Sometimes extra info is needed before another reply.

In the meantime @Daisycoo If you fancy some reading, two great books about Type 1 are:

Think Like a Pancreas’ by Gary Scheiner.

And Type 1 Diabetes in Children Adolescents and Young People by Ragnar Hanas (ignore the title - it’s great for adults too)

Having something to ‘consult’ can be a comfort and you’ll find you’ll dip into the books over the coming years. You’ll also find this forum helpful, I hope. Just speaking to other Type 1s who ‘get it’ is a massive relief even for people like me who’ve had Type 1 for years. It is hard to start with but it does gradually get easier, I promise.
 
Thank you for reassuring me. I’ll give both a read, luckily I love a book. Little ahhh overthinking moments, Google is the devil at times eh. I’ll give my team a call in the morning. Appreciate the replies 🙂
 
Welcome to the forum @Daisycoo , but sorry that you need to be here.

Diagnosis is a massive shock and a very steep learning curve, but you have already made a start to that, and found the right place for some help. There is so much experience on here to tap into, and no questions are considered silly, so just ask.

As @Inka has said it is not unusual to have higher levels at the start, but worth talking to your team about what is happening at present, especially if levels are hitting numbers in the 30s. They are likely to want to bring the glucose levels down gradually and once things are more settled your vision will return to normal for you. It requires some patience at the start, which is difficult as you are clearly wanting to get things more sorted. None of us can get perfect levels, but work with your team and they will help you to learn how to manage things as best you can.

Keep in touch and ask any questions that you have.
 
Hi and welcome from me too.

It is perfectly normal to feel overwhelmed at first and it will take some weeks and maybe months even to start to feel like you are getting a handle on things. Diabetes is tricky to manage, especially in the early days when your pancreas is still spluttering a bit of insulin out here and there and your team are trying to guestimate how much insulin you need, which can be highly individual, so it is a trial and improvement process. What they will be trying to do is bring your levels down slowly and steadily over the coming weeks because that is kinder to your body but do make them aware that you are going up into the 30s as that is not good.

I think it helps to understand that BG levels are quite variable even in non-diabetic people and there are something like 42 factors which have an impact on them, many of which are beyond our control and this is why perfect levels are not possible all the time, even when your team get your ratios and basal doses as right as they can be, but that will take time and steady adjustment and will be an ongoing process throughout your life but I can assure you that it absolutely does get easier. Not sure if you drive a car but if so, if you can think back to when you first learned to drive and how everything was complicated and needed a lot of concentration and thought, but then gradually you don't need to think about changing gear and indicating and all the other things you need to do and you just do it automatically.... Your diabetes management will become like that and it will need less conscious thought for individual tasks.

Anyway, just wanted to say hello and encourage you to ask anything you need to. No subjects are off limits. You may get more than one answer and there is often no single right answer because we are all individuals but it will give you an idea of what might be going on and what you can try to see if it will work for you.

Hope your team help you get those high levels under control soon as I am sure that must be making you feel pretty rough. Drinking plenty of water when levels are really high will help and do ask about testing for ketones if you haven't been given a means of doing so.
 
Hey,
Levels are a bit hit and miss, lower this morning. Feeling a bit better since reading the replies! Been a bit of a week so I appreciate them all. To be fair I think this diagnosis was a long time coming. Didn’t feel as yucky today, thankfully. Still waking soaked in sweat but not as bad as it has been. I imagine that could be my body trying to regulate everything that’s been thrown at it lately. On levemir and novorapid and there has been talk of a libre.
Does anyone use a libre to check levels and how are you getting on with it? Still counting carbs/weighing foodsbut managing to work out the insulin to match ok. Will call the diabetes team today, maybe things need adjustments.
I have noticed I’ve put on weight rapidly since starting insulin. Not enough to be worried about but enough to notice my jeans feel a little snug. Maybe the insulin + eating proper meals that’s doing it? I’ll take on all the advice you have all wrote and get back into drinking water properly again. I have noticed I’m not as thirsty which in some ways has been nice. Not worrying about being out and where toilets are is a huge plus. Makes the days easier, especially with a kid.
 
Libre is brilliant but you do have to understand how it works and learn not respond to the readings it gives you straight away (unless hypo of course) and it is still necessary to double check with a finger prick in certain circumstances, but being able to see what your levels are doing day and night is amazing and enables you to fine tune your diabetes management once you get your levels somewhere near in range. It can also useful for your clinical staff to make adjustments to your insulin doses in these early days as they have access to all your data and can see exactly what is happening with your levels.

If you lost weight pre diagnosis which is usually the case, then it is normal to put a little weight back on once you have insulin enabling your body to access glucose but you shouldn't put excess weight on unless you are eating more than your body needs. Could it be that you are currently less active than you were, due to the diagnosis. If you are now eating 3 meals a day when you weren't before, then that could certainly put weight on. I often just have 2 meals a day. Don't assume that you have to eat 3 meals a day. That was necessary with the old insulin regimes but the basal/bolus insulin system you are on, enables you to skip meals if you wish but obviously you don't inject bolus insulin if you don't have a meal.

Good to hear that you are feeling a bit better today and the thirst and toilet trips have reduced. NovoRapid and Levemir are a good combination. I love my Levemir but Novo was not so Rapid for me so I am trying a different bolus(meal time) insulin now, but those are what I started on and they work well for many people.
 
I have noticed I’ve put on weight rapidly since starting insulin. Not enough to be worried about but enough to notice my jeans feel a little snug. Maybe the insulin + eating proper meals that’s doing it?

It’s likely your pancreatic cells were failing for a while, so what you thought of as your normal weight was probably artificially low. Then if you lost weight prior to diagnosis, you’d go even lower. The insulin doesn’t cause weight gain. All it does is allow your body to work properly again (and stay alive!). So your body will put back the weight and over the next months you’ll settle at a normal weight for you. It’s a damaging myth that insulin causes weight gain. I’ve been on it nearly 30 years and am still slim just as I would have been if I hadn’t developed the diabetes. 🙂 Eat a normal healthy diet, give your body time to ‘reset’ itself and you’ll be fine.
 
Daisycoo said:
I have noticed I’ve put on weight rapidly since starting insulin. Not enough to be worried about but enough to notice my jeans feel a little snug. Maybe the insulin + eating proper meals that’s doing it?
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I certainly put on weight immediately after diagnosis, but I can’t blame the insulin, apart from the fact that it was now helping me use the food I was eating. I’d got so used to eating more and more as I struggled to maintain weight while I was undiagnosed (I was losing 1.5-2lb a week) that I had to stop and assess what I was eating, and realised that I was just eating a lot more (packets of nuts, bars of dark chocolate, etc) than I used to. Once I’d rediscovered the diet I used to eat, I stopped gaining and have been a stable weight for the past 10 years.
 
Robin said:
I certainly put on weight immediately after diagnosis, but I can’t blame the insulin, apart from the fact that it was now helping me use the food I was eating. I’d got so used to eating more and more as I struggled to maintain weight while I was undiagnosed (I was losing 1.5-2lb a week) that I had to stop and assess what I was eating, and realised that I was just eating a lot more (packets of nuts, bars of dark chocolate, etc) than I used to. Once I’d rediscovered the diet I used to eat, I stopped gaining and have been a stable weight for the past 10 years.
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That’s reassuring to know. My eating before was terrible. I could be putting on a little bit of weight, so not to fussed about it at the moment. Just an observation on myself. Have noticed I’m hungry and enjoying meals now which to be 100% honest has been lovely. Eating proper meals for proper nourishment instead of just grabbing a choc bar/coffee etc to get me through or perk me up, if that makes sense? I’m sure I’ll find a balance like everyone has said. Rome wasn’t built in a day eh.
 
Welcome to the forum @Daisycoo

A diagnosis with diabetes can be really overwhelming to begin with, but diabetes is a marathon not a sprint, and things will get easier, just as they have for @clarita84

Keep asking questions, and keep in close contact with your DSN, and keep plugging away.

Sometimes you are started on quite cautious insulin doses to begin with, because with a little help, the remaining few insulin producing cells in the pancreas can get a bit of a second wind and ‘help out’ with some home-grown insulin, so some clinics deliberately start off cautiously, to avoid risk of hypos.

And let us know how you are getting on over the weeks ahead 🙂
 
Hi guys. Doing ok today managing to match Novo to carbs and get BG down to around 14, still not great but lower that it has been, is a win today. Feel a bit off with the BG reducing but I’m guessing it because I’ve not been at any kind of a “normal” range. My BG was off the scale at the beginning of this hence the rush to hospital and diagnosis the same day. Just over a week into this new normality but feel I’m slowly getting things right, so to speak. I keep finger pricking when I feel off/wake through the night, especially if I’m sweaty to make sure it’s not a hypo/hyper though. Stomach still thinks my throat has been cut at times but distracting myself, especially if I’ve just ate. Sweating a ridiculous about during the night, not sure what’s causing that, could just be this bod getting used to everything/back to some kind of normality. Time will tell. Hope you are all well !! 🙂
 
Glad to hear things are settling down…my bg took a while to come down, apparently it’s better for your eyes to bring it down slowly…(according to my dsn). Hopefully your vision will settle soon, mine took a good 6 weeks.

It’s a marathon not a sprint and takes a while to adjust to your new life…might be worth reading up on the stages of grief to help you understand some emotions you might have.
 
Zoombie said:
Glad to hear things are settling down…my bg took a while to come down, apparently it’s better for your eyes to bring it down slowly…(according to my dsn). Hopefully your vision will settle soon, mine took a good 6 weeks.

It’s a marathon not a sprint and takes a while to adjust to your new life…might be worth reading up on the stages of grief to help you understand some emotions you might have.
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Thanks. To be honest I think the shock of diagnosis/close to loosing my life has worn off now. I have had a few teary moments but keeping busy has helped a lot. I’d rather it was gradually lowering, probably safer all round that way?! Little bit annoying as an avid bookworm and tea jenny (sweetener is awful but doing the do) although the books will still be there to read when I can 🙂. Little bit like the tortoises and the hare eh. Knackered before a good walk today but done it and feel better for it now, minus a few niggles of leg/foot pains. Sleep is a bit hit and miss, slowly getting more hours in which has been great. Especially with a kid. Kid told me today, she feels like the ‘old energetic mum’ is back so something is definitely working. Pulled an all dayer, that’s a huge huuggee win for this household.
 
Inka said:
Knowing the insulins will help @jeanettem1 Sometimes extra info is needed before another reply.

In the meantime @Daisycoo If you fancy some reading, two great books about Type 1 are:

Think Like a Pancreas’ by Gary Scheiner.

And Type 1 Diabetes in Children Adolescents and Young People by Ragnar Hanas (ignore the title - it’s great for adults too)

Having something to ‘consult’ can be a comfort and you’ll find you’ll dip into the books over the coming years. You’ll also find this forum helpful, I hope. Just speaking to other Type 1s who ‘get it’ is a massive relief even for people like me who’ve had Type 1 for years. It is hard to start with but it does gradually get easier, I promise.
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There’s no point me discussing insulin when I don't use it or any medication. I can’t say what it feels like or it’s effects as I don't feel it myself. It’s a nice thought but I’d rather know what I’m talking about before I gave advice.when and if I need to use medication I will then be able to discuss it. I only replied to let them know that someone was here and to reassure them that people were listening . In future I wI’ll not say hello to any one!
 
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