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Type 1 My first few days with type 1

O

olster

Active Member
Messages
26
Type of diabetes
Type 1
So Ive recently been diagnosed with T1D at the age of 17 and I was in hospital with DKA and at the time my blood sugar was too high to read (above 40 mmol). Now ive been discharged after 5 days in hospital (been out for 3 days) my blood sugars sit around 9-14 and sometimes spike to 17 in which case i will check for ketones as i was directed too.

I raised my concern of my high sugars to my diabetes doctor and she said they're nothing to worry about, because they are still finding the right doses of insulin for me, provided my ketones are below 0.6.

Is this normal? im eating 3 meals a day getting no more than 150g carbs a day (i have to force myself to eat carbs even though im scared to and dont want) and only around 1500 calories a day ( i used to eat around 2400 a day so i have no idea how im going to put all the weight that i lost back on), they told me to eat as normal as im still growing and i need the carbs but i have a huge fear of eating carbs as i know they raise blood sugar and high blood sugar is going to lead to me having future complications, these complications make me anxious 24/7 as i cant get them out of my head.

So my question is, is it normal to have these blood sugar ranges? Should i be scared? and will i ever be able to get my sugars at the correct levels? (provided i put in the effort)

Thanks
 
Welcome to the club.When I was first diagnosed it was scary so I understand how you feel.

Carbs will raise your BG only IF you do not have enough insulin to convert them to energy. As you have been told, it will take some time to get your doses right and it is typical to err on the side of caution at first to avoid hypos so, for a while your BG will be running a bit high as . your doses are sorted.

Prolonged high BG is a problem but, as type 1 comes on very fast, it is very unlikely that you have been experienced prolonged high BG so there is nothing to worry about whilst your insulin doses are being sorted. Type 1 diabetes is not a reason to concern yourself with eating too many carbs.

Some type 1s may reduce their carbs because they find this helps them maintain their levels but there are many on this forum who do not.

Approximately, 9 out of 10 people with diabetes have type 2. Therefore, most of the people on this forum have type 2. They are much more likely to reduce their carb intake. Everyone who comments on this forum has valuable input but it is important to consider whether it is relevant to you.

You will find there are many things that affect your BG. Carbs are the most obvious but there are other things like illness and stress. As you have just been diagnosed, you are probably feeling a bit stress which will also push your BG up. Over time, it will become normal for you to inject, test and count carbohydrates.

So, back your last questions:
- is it not unusual to have BG in the ranges you are seeing when you are first diagnosed with type 1 and working out your insulin doses.
- if you put the effort in and get the right advise and support from your health care team, there is no reason why you should not be able to bring your BG levels down.

And, finally, you are part of a club which includes some very active and successful people like Steve Redgrave (does a 17 year old remember him?), Halle Berry, Este Haim and Theresa May. Many people do not like the last person I named but I think you have to admire her ability to do a very stressful job with type 1 diabetes (regardless how well she does it) and all of these people highlight that diabetes should not stop you doing whatever you want.
 
relax and just dont rush. i would test if over 14 for ketones but if its just a spike its not likely. ive just calculated my carb intake at about 46 im aiming to reduce my insulin needs and lose a bit of weight. my ketones i like to check once a week or so stays at 0.2. it will take a few weeks to get the right doses of your background insulin and your fast acting boluses. they will gradually move them up a few units at a time. it quite important that you eat normally but healthly so dump the junk and ready meals. you should be eating around 2000 cals for now. 1500 will cause weight loss. once your stable inside your targets then play about with your diet if you wish.
 
First, welcome to the forum. I've had type 1 diabetes for 54 years now and you need to realise that your fluctuating sugar levels should be sorted out by insulin adjustments over the next few days and weeks, as helenramsay has told you. You have no need to panic - though I can totally understand why you feel you should. The whole thing is a massive shock and it takes us all time to get used to the new stuff we have to cope with.

I would suggest that you get back to something like your normal diet. Your insulin requirements are being worked out by doctors. They believe the way you are eating now, is the way you would be eating normally. If you aren't eating fairly normally, then the insulin adjustments they work out will be wrong for you ever eating normally. Most people are REALLY hungry when diagnosed with type 1, so I don't know how you've been managing to eat so much less. It must be pretty awful trying to keep your food intake so much lower than normal . You seem to be very aware of calories. You need protein too, to rebuild muscle, to say nothing of all the fruit and veggie stuff with the essential vitamins and trace elements they contain. You need to eat normally to give your body a chance to recover from DKA.
 
Hi, @olster , welcome to the forum!

Don't worry about the high levels for the moment. When you've been up as high as above 40, it's usual for docs to bring you down in stages, a bit like how a deep sea diver decompresses in stages instead of just coming straight to the surface.

Your body will be used to higher levels, so if you bring it right down into range straight away, that can cause a bit of shock to the system, so better to do it slowly but surely.

The levels you are at now would only really be a problem if you were to stay there for months on end, and that is very unlikely to happen. You'll get there eventually, so be patient.

Try not to be scared of carbs raising blood sugar. The main thing you'll be learning over time about T1 is how to judge how much insulin you need for each meal and how to time the insulin shot.

I'll not go into the details of that, you'll learn as time goes by, but, just as an example, I was off work today on holiday, went out for a full fried breakfast, it included a fair bit of carbs - toast, hash browns, potato scones - bg bounced up by about 2 then came back down, because I knew how to time and balance the insulin against the food. You'll learn how to do that too.

Once you get to grips with how to use insulin properly, you'll be surprised how relatively unrestricted your life will be.

There's a lot of interesting stuff going on at the moment. Continuous glucose monitoring, which makes life a lot easier: compared to strips alone, it's almost like cheating being able to see a 24 hour real time movie of how bg responds to insulin and food. And there's some early stage trials going on with 'smart insulin' which switches on and off depending on the amount of glucose present.

There are still challenges - I'm not going to pretend T1 is easy - but you can live a decent life with it.

Good luck!
 
hi there @olster !! :)
sorry you have had to join us( becoming type 1 ) but really glad you have found us !!

OK -- a bit about me -- type 1 for over 45 years so far , and so far still doing pretty good !!
diagnosed aged 14 --

ok -- so back to you now --- it is a huge upset both physically and mentally getting this diagnosis
so first advice - try to be kind to yourself -- you can only learn how things work for YOU in real time.

you have some brilliant advice in posts above me -- so I will just say -- do keep posting with us
there is a good team of people who totally understand what you're going through and are all ready to help support you.

all the best !!
himtoo
 
Hi @olster ,

Welcome to the forum.

Long time since I was diagnosed...

If anything? Log what you eat & yout test numbers. This helps your HCPs to help you. (Give them a pictur of what's going on.)
There are plenty of device apps to help you with this like Diaconnect or MySugr..

Bite size chunks with the learning. I would agree with @Scott-C 's "decompression" analogy.

What insulin have you been prescribed?
 
@olster . Welcome to the forum.
Can't really add to what the great posters above have already posted.
You seem to be fully up to speed with carbs, amounts and possible side affects.
What you will need to do in the near future is to learn about insulin.
Insulin is a wonderful thing and once you learn how to use it you'll find a lot of your initial fears will be far less concerning.
Keep posting with us.
You have a lot to learn. Start with the basics and the complicated stuff will be far easier.

27 yrs eating carbs and still kicking the ar*es of the kids in the gym....:):)
 
therower said:
@olster . Welcome to the forum.
Can't really add to what the great posters above have already posted.
You seem to be fully up to speed with carbs, amounts and possible side affects.
What you will need to do in the near future is to learn about insulin.
Insulin is a wonderful thing and once you learn how to use it you'll find a lot of your initial fears will be far less concerning.
Keep posting with us.
You have a lot to learn. Start with the basics and the complicated stuff will be far easier.

27 yrs eating carbs and still kicking the ar*es of the kids in the gym....:):)
Click to expand...


Rock on baby :p
 
Jaylee said:
Hi @olster ,

Welcome to the forum.

Long time since I was diagnosed...

If anything? Log what you eat & yout test numbers. This helps your HCPs to help you. (Give them a pictur of what's going on.)
There are plenty of device apps to help you with this like Diaconnect or MySugr..

Bite size chunks with the learning. I would agree with @Scott-C 's "decompression" analogy.

What insulin have you been prescribed?
Click to expand...
Im on Novorapid and Levemir
 
Scott-C said:
Hi, @olster , welcome to the forum!

Don't worry about the high levels for the moment. When you've been up as high as above 40, it's usual for docs to bring you down in stages, a bit like how a deep sea diver decompresses in stages instead of just coming straight to the surface.

Your body will be used to higher levels, so if you bring it right down into range straight away, that can cause a bit of shock to the system, so better to do it slowly but surely.

The levels you are at now would only really be a problem if you were to stay there for months on end, and that is very unlikely to happen. You'll get there eventually, so be patient.

Try not to be scared of carbs raising blood sugar. The main thing you'll be learning over time about T1 is how to judge how much insulin you need for each meal and how to time the insulin shot.

I'll not go into the details of that, you'll learn as time goes by, but, just as an example, I was off work today on holiday, went out for a full fried breakfast, it included a fair bit of carbs - toast, hash browns, potato scones - bg bounced up by about 2 then came back down, because I knew how to time and balance the insulin against the food. You'll learn how to do that too.

Once you get to grips with how to use insulin properly, you'll be surprised how relatively unrestricted your life will be.

There's a lot of interesting stuff going on at the moment. Continuous glucose monitoring, which makes life a lot easier: compared to strips alone, it's almost like cheating being able to see a 24 hour real time movie of how bg responds to insulin and food. And there's some early stage trials going on with 'smart insulin' which switches on and off depending on the amount of glucose present.

There are still challenges - I'm not going to pretend T1 is easy - but you can live a decent life with it.

Good luck!
Click to expand...
Thank you!
 
Hi Olster sorry you had to join us but if you have a question then this is the place to be. We may be diabetics but diabetes effects everyone different, so running your BS a bit high is not a problem as it new, your pancreas may be trickling a little bit of insulin out this is normally called the honeymoon period which can last on average 6 months. Your consultant is correct in telling you not to worry but we all do, the doctors will be trying to get the right level of insulin for you and all so finding out how sensestive you are to the insulin. This may take a bit time to get right but you will get there, i bet you have had loads of information given to you since you were told that you are a diabetic. I know it seems a lot but just break it down in to little bits at a time, you and your body will be in shock at the prospect of diabetes. I take it you live at home with your parents so you need to involve them as well so they have an idea of how to see the signs of a hypo. When you go to clinic next take someone with you and write done some of the questions that you want to ask and then you can go from there, you are very early in diabetes terms and it takes time to adjust to being a diabetic. So if you have a bad day which we all have as long as you have a close group of people around you ( parent, family, friends, DNS and doctors) then you will cope. If at anytime you feel something is wrong contact your DNS for advice or even to make sure you are doing the correct thing. Diabetes is not a walk in the park but the more you learn about it and how your body reacts to it then you can make things easier. Sometime you may think i do not want diabetes or why me, this is normal as many of us who have had diabetes for 30 years or more still ask them questions. You are only a young lad and have your life in front of you so as soon as your BS are stable and you no more then you can do what you want in life, do not let diabetes stop you. If you ever want to ask a question, have a rant or maybe are not sure of something then come on here and do it. I like a rant now and then and no one will judge you as everyone needs to let off steam sometimes, as other people have said stress and illness can cause your BS to go up. I have no doubt that over then next few weeks you will be told a lot more information but as i say one day at a time. Good luck and all you have to do is post to keep us updated on how you are going.
 
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