Hello! New T1 diagnosis

[jasmine]

Hi all,

My name is Jasmine, I just wanted to say hi and vent a bit I guess, I hope that’s okay!

I got diagnosed two days ago, after going to the GP with excessive thirst. Expected to be told all was fine, instead got sent to the hospital to see the endocrinologist, told I almost definitely have T1, and send to the emergency department because my ketones were high. There was some sort of admin error at the hospital, so I accidentally got admitted into resus because they thought I was going into DKA (not really sure I want to know what that is right now), it was very dramatic, lots of people running around me and hooking me up to machines and not telling me what was going on. And then my endocrinologist burst in and said I wasn’t meant to be in resus, I just needed blood tests and monitoring, but then he left and the hospital staff kept me in there anyway for the rest of the day.

I’m super shocked and upset, and feeling quite abandoned I guess? The diabetes nurse taught me how to do the finger prick and inject my dose of insulin before meals, but not much else? Just ‘test your ketones if your BG is over 15, and call us if your ketones get too high’. Nothing about what I should/shouldn’t be eating, or what to do if my blood sugar was above the target range (which it has been basically the last two days)

A doctor rang me once yesterday morning, told me to test my ketones, promised to call back, never did. It’s really hard for me to get enough blood for glucose testing (although I am getting better!) and I sort of dread it since it’s always coming out high. I’m finding that even hours after meals, when I have the symptoms the doctors say are a hypo (weakness, hunger, dizziness) my BG is still like 11-12+, which is really stressing me out, because I feel scared to eat like I normally would (dw I AM still eating and following their injection instructions, just really worried about it)

I sort of feel like I just got told there’s a bomb inside me that could go off at any time, and I’m being expected to manage it with almost no instructions. I might call the hospital tomorrow to see if I can speak to someone — I’m not even sure what to ask though? Just tell the receptionist ‘hey I got diagnosed a couple days ago and have no clue what to do’?? My next scheduled call with the nurse is in a week, which feels like a really long time to make me manage with what feels like very little guidance.

So yeah. Feeling very overwhelmed and scared and stressed! It’s been a pretty crazy 48 hours, but I’m glad to have found this forum!! I’ll have a nosy around xx Thank you for reading!

 

[Inka]

What you’re feeling is completely normal @jasmine A type 1 diagnosis is a huge shock, and requires a massive amount of changes with no gradual lead-in.

To answer a few questions: the recommended diet for Type 1s is the same healthy diet recommended for everyone. Type 1 is nothing to do with diet and everything to do with insulin. The hypos you’re experiencing at 12 are what’s called false hypos where your body has got used to high sugars so thinks a 12 is too low. This will gradually reset itself. Your priorities are to avoid ketones and to avoid hypos. Your insulin doses will almost certainly be ‘wrong’ and will be adjusted over the coming days/weeks. One reason for this is safety (to avoid hypos) and another is to bring your blood sugar down gradually. Sudden changes aren’t good for the body and a gentle decrease is better.

 

[Inka]

Please don’t worry too much about all the details. Keep things simple for now. Type 1 is a marathon not a sprint. Eat properly, keep hydrated, follow your instructions, avoid ketones and hypos as much as possible, and be kind to yourself.

When you’re ready to read up on things, these are the books often recommended for Type 1s on this forum:

Think Like a Pancreas’ by Gary Scheiner.

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

Think Like A Pancreas is American but I liked the chatty style and it contains some great information, as does the Ragnar Hanas book. They’re books to read over time and to refer to. Type 1 is a huge learning experience.

Things will gradually get easier, I promise 🙂

 

[mashedupmatt]

Hi @jasmine and welcome to the forum - sorry you've had to join us (in a nice way!) - quite a couple of days you've had to say the least! It is stressful and overwhelming, but we're all here to help and there are lots of us who have had similar experiences - The Ketones is the "K" bit (in a way) of DKA - if you test and it is under 1.5 (I'm presuming they gave you a meter with Ketone Strips?) then this is OK - Drawing blood for a finger-prick does get easier with practice (Make sure you warm your hand/finger beforehand and it's easier - I use a warm cup of tea!) - as @Inka has said your BG Levels will be high to start with and it is important to bring them down gradually so you will have been told to administer a very conservative dose for now (Don't get too fixated on the numbers at this very early stage) - Feel free to ask any questions you may have (Nothing is considered "silly" here) and we all genuinely want to help - It really does get easier 🙂

 

[rebrascora]

Hi Jasmine and welcome.

Yes, it can all be a bit scary and overwhelming to begin with but the important thing is that you have insulin. Do you have 2 different types of insulin or just the one that you inject before meals and what is the name of it/them?

So pleased you have found the forum because it is a goldmine of practical experience which is of course just what you need at the moment because that doesn't just develop overnight after you are handed an insulin pen.
What doses are you taking of the insulin?
I am guessing they have just started you off on fixed doses ie the same doses each day regardless of what you eat.

It is important to bring your blood glucose (BG) levels down slowly rather than drop them straight down into range immediately because for one, that risks you having a nasty hypo and it puts undue strain on the delicate blood vessels in your eyes and kidneys and feet, so adjusting your doses slowly and steadily over the coming weeks to slowly bring you down into single figures is the aim, so try not to worry that your levels are still pretty high at the moment.

A healthy diet for a Type 1 is the same healthy diet as for someone who is not diabetic. ie. there is no special diet, just sensible everyday meals. Initially because you are likely on fixed doses, then try to keep the meals of a similar moderate size, but eventually you will learn to adjust your doses for when you want to have a special celebration meal or a snack or just a quick grab and go meal. Try to include a sensible amount of carbohydrate in each meal as the insulin is designed to work on the glucose released from the carbs you eat. If you have something like an omelette which has almost no carbs without some bread or chips or whatever, then any insulin you inject could drop you too low, so try to eat balanced meals for now, with a good mix of carbs, protein and fat.

Testing gets easier and eventually you will also get a Constant Glucose Monitor (CGM) which consists of a sensor which is applied to your body often the upper arm and a phone app to pick up readings from it. It is important to learn to finger prick first because CGM is not always accurate and you have to know when to double check it with finger prick readings, but it does eventually mean you need less finger pricks and it is much more convenient to be able to just look at your phone. Plus the CGMs also have high and low alarms to help you keep in range when are more experienced at using your insulin.

Anyway, fire away with any questions you have but most importantly, know that you are not alone with this and we are here to support you every step of the way. I am 6 years down the road with Type 1 and I have learned almost everything I know from the good people here and they have given me so much confidence to manage it well and that confidence is really comforting. I do hope we can do the same for you. Sending (((HUGS))) because we know how vulnerable it makes you feel at first.

 

[everydayupsanddowns]

I’m super shocked and upset, and feeling quite abandoned I guess? The diabetes nurse taught me how to do the finger prick and inject my dose of insulin before meals, but not much else?

Awww @jasmine

A diabetes diagnosis can be such an overwhelming time. But hang in there… it does get easier.

I think HCPs have to try to feed in information a little at a time, to stop it being completely overwhelming - but of course that can leave you feeling like you are flapping around with no information

Try not to panic about your levels not coming straight back into range immediately. It can be easier on the eyes and nerve endings to allow it to coast down slightly more gently - and this can actually help prevent damage.

Those books that @Inka mentioned are frequent favourites with folks here. You might also want to register with the Learning Zone (the orange tab in the main menu), which is packed with modules you can take at your own pace.

 

[saffron15]

@jasmine welcome to the forum. Whatever else happens you will be pleased you found the forum. I joined last August a month after I had been diagnosed with type 2. I felt shocked, bewildered and as far as medical profession concerned unsupported. I got care and compassion and knowledge from this forum and a lot of the really good eggs were type 1.

It seems to me if you are type 1 you get more medical help than type 2 and don't have to shift your diet but it is part of your life forever. I have been very impressed how knowledgeable and helpful the type 1s are here. If one doesn't know the answer someone else will. In addition there are a steady group of parents who have helped very young children with the diagnosis. The concensus seems to be at least nowadays electronic tech makes it easier to cope but just like it hit me like a ton of bricks expect to grieve for your change of life but also be surprised at your resilience as you sort things out.



Good luck

 

[jasmine]

Please don’t worry too much about all the details. Keep things simple for now. Type 1 is a marathon not a sprint. Eat properly, keep hydrated, follow your instructions, avoid ketones and hypos as much as possible, and be kind to yourself.

When you’re ready to read up on things, these are the books often recommended for Type 1s on this forum:

Think Like a Pancreas’ by Gary Scheiner.

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

Think Like A Pancreas is American but I liked the chatty style and it contains some great information, as does the Ragnar Hanas book. They’re books to read over time and to refer to. Type 1 is a huge learning experience.

Things will gradually get easier, I promise 🙂

Thank you so much for typing all of this up! I was honestly kind of a mess when I wrote this post and you have no idea (or maybe you do hahah) how reassuring this was all to hear, thank you!! I didn’t know that they were trying to bring my sugar down slowly, I thought something was wrong.

And I’m so glad to hear the false hypos are normal (although they are not fun at all right now, I sort of hoped I would feel better in myself after starting insulin ). I guess it’s fine for me to just take my snack-dose of insulin and snack when I feel like that? Or is it better to ride them out?

 

[jasmine]

Hi Jasmine and welcome.

Yes, it can all be a bit scary and overwhelming to begin with but the important thing is that you have insulin. Do you have 2 different types of insulin or just the one that you inject before meals and what is the name of it/them?

So pleased you have found the forum because it is a goldmine of practical experience which is of course just what you need at the moment because that doesn't just develop overnight after you are handed an insulin pen.
What doses are you taking of the insulin?
I am guessing they have just started you off on fixed doses ie the same doses each day regardless of what you eat.

It is important to bring your blood glucose (BG) levels down slowly rather than drop them straight down into range immediately because for one, that risks you having a nasty hypo and it puts undue strain on the delicate blood vessels in your eyes and kidneys and feet, so adjusting your doses slowly and steadily over the coming weeks to slowly bring you down into single figures is the aim, so try not to worry that your levels are still pretty high at the moment.

A healthy diet for a Type 1 is the same healthy diet as for someone who is not diabetic. ie. there is no special diet, just sensible everyday meals. Initially because you are likely on fixed doses, then try to keep the meals of a similar moderate size, but eventually you will learn to adjust your doses for when you want to have a special celebration meal or a snack or just a quick grab and go meal. Try to include a sensible amount of carbohydrate in each meal as the insulin is designed to work on the glucose released from the carbs you eat. If you have something like an omelette which has almost no carbs without some bread or chips or whatever, then any insulin you inject could drop you too low, so try to eat balanced meals for now, with a good mix of carbs, protein and fat.

Testing gets easier and eventually you will also get a Constant Glucose Monitor (CGM) which consists of a sensor which is applied to your body often the upper arm and a phone app to pick up readings from it. It is important to learn to finger prick first because CGM is not always accurate and you have to know when to double check it with finger prick readings, but it does eventually mean you need less finger pricks and it is much more convenient to be able to just look at your phone. Plus the CGMs also have high and low alarms to help you keep in range when are more experienced at using your insulin.

Anyway, fire away with any questions you have but most importantly, know that you are not alone with this and we are here to support you every step of the way. I am 6 years down the road with Type 1 and I have learned almost everything I know from the good people here and they have given me so much confidence to manage it well and that confidence is really comforting. I do hope we can do the same for you. Sending (((HUGS))) because we know how vulnerable it makes you feel at first.

Thanks you so much for your help! Yes I’m on 8 units of Lantis slow acting, and 0-3 units of Novorapid whenever I eat - 3 for big meal, 2 for small meal, 1 for snack. I didn’t realise I needed to make sure I was eating some carbs with each meal, I will start doing that now! Thank you so much for the kind words and reassurance, it makes me feel so so much better

 

[Inka]

Thank you so much for typing all of this up! I was honestly kind of a mess when I wrote this post and you have no idea (or maybe you do hahah) how reassuring this was all to hear, thank you!! I didn’t know that they were trying to bring my sugar down slowly, I thought something was wrong.

And I’m so glad to hear the false hypos are normal (although they are not fun at all right now, I sort of hoped I would feel better in myself after starting insulin ). I guess it’s fine for me to just take my snack-dose of insulin and snack when I feel like that? Or is it better to ride them out?

I’d ride out false hypos with some sips of water, and a bite or two of something without insulin. I know they feel horrible, but double check (ie test again to make sure it is a false one) then just have a tiny bit of something to soften the feelings.

 

[Tdm]

Sounds like you had quite a start on your diabetic journey!
BUT is does get easier, really it does.
'Think like a pancrease' is a good book when you have the mental space to read

 

[rebrascora]

Good to hear that you are on a proper bolus(NovoRapid)/basal(Lantus) insulin regime and that you are not totally on fixed doses of NovoRapid but adjusting according to the size of the meal/snack. That seems like a really sensible approach to start off with and allows you a little bit of flexibility to have snacks if you want them.
It really does get easier, but the nurses have to see how your body responds to these doses in order to adjust you carefully towards the correct doses and even then, the correct dose is only correct for an unknown amount of time until it needs adjusting again. Diabetes is great for keeping your mental agility sharp because it never stays the same for long. It is like a very long running strategy game. One of the key things to know is that you will make mistakes, we all do. Sometimes they are stupid mistakes where you just aren't paying enough attention and inject the wrong insulin at the wrong time and sometimes you do every by the book and it still turns out wrong. The great thing is that you gain experience and knowledge and confidence from mistakes, so don't beat yourself up for them because they are all part of the learning experience. I found it really hard at first because I was brought up to be a bit of a perfectionist and I wanted to get it right all the time and that simply isn't possible because balancing Blood Glucose levels is an extremely tricky process. I am sure none of us gave a thought to what a clever little organ our pancreas was when it was fully functioning until we had to start manually doing one or more of it's jobs ourselves. Makes you really appreciate how amazing the human body is when it works properly!

 

[SB2015]

Welcome @jasmine to the club no one wants to join.

A diagnosis of diabetes is always a shock, and you have certainly had a baptism of fire. You had high glucose levels at the start and your team will want to bring your levels down slowly. Hypos feel weird and later on will occur only when you are below 4, but at present what you are experiencing are false hypos. The same horrid symptoms but just your body objecting to the change that is happening now that you have insulin again.

It is good that they have started you straight on the basal (background)/ bolus(quick acting insulin for meals) regime as this will be the most flexible. You are already getting to grips with this and it WILL GET EASIER. Do you remember learning to drive? It all seems complicated at the start but then much of it becomes automatic. That is how it is with managing T1. Lots to learn very quickly but it will just become normal.

Plenty of help to tap into on here. No questions are considered silly, and do feel free to have a rant. We all need one at times and we ‘get it’. Very pleased that you have found the forum and look forward to hearing more of your progress.

 

[silver minion]

Welcome @jasmine sorry to hear about your stressful introduction to diabetes.
It's normal to feel overwhelmed at diagnosis regardless of type. Unfortunately with type 1 you are thrown in at the deep end. Glad that you found the forum and felt able to vent.
Lots of good information and advice from Type 1s who collectively decades of experience.

 

[trophywench]

Yep - chucked in at the deep end having omitted to enquire if you could swim. Good thing is, curiously, the deeper that water is, the quicker you come up to the surface again !

I now have this mental picture of @mashedupmatt dangling his fingers in his mug of tea to try and get them warm ..... because although having an overdeveloped sense of the ridiculous isn't a pre requisite when diagnosed, I have found that it has managed to keep me (relatively) sane, over the last 50 years.

 

[HayleyR]

Oh @jasmine what a horrible time you've had It's bad enough being diagnosed and then trying to digest what it all means but then not to be given the support you need! It is all very overwhelming at first but step by step it does get easier - really it does. I'm so glad you've joined us, as you're not alone and we're here to here to support you on your journey. Please ask as many question as you want; I find it's quite comforting to speak to others who understand 🙂

 

[SimonP]

And I’m so glad to hear the false hypos are normal (although they are not fun at all right now, I sort of hoped I would feel better in myself after starting insulin ).

The one good thing about this is that once you are back down to normal levels, you will have had some practice knowing what it feels like to start going hypo. CGMs are a great thing, but it's also quite useful to use the old school skills of listening to your body.

 

[Bruce Stephens]

Thank you so much for the kind words and reassurance, it makes me feel so so much better

If you like listening to things, Jen Grieves has a podcast Type 1 on 1 where she interviews a variety of people connected with Type 1 diabetes, sometimes Gods like Partha Kar and sometimes more ordinary people who have unusual forms of diabetes. In particular, her friend Ami Bennett developed Type 1 diabetes a little after Jen started the podcast and she was interviewed on episode 2 series 2. Later, they did a miniseries called Type 1 on 1: the Diaries, where they just chatted informally about their lives and diabetes. (I don't know a good way to link specifically to the Diaries, unfortunately, but there aren't that many episodes of the podcast so they're not that hard to find in a podcast player.)

 

[jasmine]

The one good thing about this is that once you are back down to normal levels, you will have had some practice knowing what it feels like to start going hypo. CGMs are a great thing, but it's also quite useful to use the old school skills of listening to your body.

Oh right, I didn't think of it like that! Thank you, that will help me be a bit less frustrated by it! It's like I'm having practice hypos

 

[trophywench]

I found out that if I'm in a tizz and confused by whatever's gone amiss with my diabetes treatment cos my BG isn't doing whatever I thought it would, I have to just stop and speak to myself like I'm my friend, who was always more sensible than me. (or indeed, one of our mothers) Give myself a talking to. Right, madam! Calm down - and think about this logically!

Pertinent questions - What has happened ? What were you expecting to happen that has not ? What is/could be the reason ? Is there a way you know that will sort it out ? Are you able to do that ?