My little (big) Type 1 problem!

[lecsiy]

Hey,

First off, want to say hello to everyone on this forum. I'm a newly diagnosed (lucky me) T1 diabetic. 17 and from England.

Been trying to fight my blood sugars but at the moment i've been given no advice and really dont know where to start.

I've been put on Novorapid (short acting im told) and levemir (long acting apparently).

Now when i first got diagnosed 6 units of insulin would cover a sandwhich quite nicely and my bloods 2 hours after would be relatively normaly. Nowdays id be lucky if 11 units covered a sandwhich. I take 15 units of levemir each night. But alas this doesn't seem to be doing much, although im generally waking up with nice lows ( 6.6 ) no matter how much i inject im not hypoing nor is it allowing me to lessen my insulin dose for each meals.

Now i dont mind taking however many thousands off units of insulin every day. Ideally i'd go back to having 6 units covering my sandwhich but oh well. However, is this a sign of yet another medical condition. Pancreatic Cancer? Pancreatitus? A type 1 / type 2 diabetes double whammy? I have no clue. Is this something i should be worried about?

I've heard the phrase honeymooning floating around the place and iv'e learnt this to mean when the pancreas is still producing minimal amounts of insulin and can last for upto 6 months to 2 years or so. Now that worrys me cause if im still honeymooning and my **** pancreas is still producing insulin. How much insulin am i looking at taking in 2 years? Is it going to be a catridge per shot! Im really confused and any help would be great on the matter!

My HB1AC (My first one right after diagnosis was 8.5) I am so determined to get this down and join the elusive 5% club. Im sure with a lot of hard work and a little help from my new diabetic buddies i can do this!

Sorry if i've bored you with my overly long post but thanks for your help in advance!
(Also sorry for any punctuation or spelling mistakes, it has just past midnight here so that'l be my excuse tonight!)

Thanks a lot

Lecsiy:)

[Granny Shanny]

Welcome, Lecsiy . . . there's nothing I can offer in answering your questions, since I'm T2 and non-insulin-dependant.

I'm just here to say we're happy to have you join us, and there are wonderful knowledgeable people here who've been through what's happening to you & they'll be coming around soon.

[jer.lawrence]

Welcome to the forums! I'm a Type 2 and not on insulin, so I can't help you with your questions. I wanted to say hello, though. :) I hope you enjoy your stay!

[networkguy]

Whoa man! hehe welcome ;)

Hey,

First off, want to say hello to everyone on this forum. I'm a newly diagnosed (lucky me) T1 diabetic. 17 and from England.

Been trying to fight my blood sugars but at the moment i've been given no advice and really dont know where to start.

I've been put on Novorapid (short acting im told) and levemir (long acting apparently).

Now when i first got diagnosed 6 units of insulin would cover a sandwhich quite nicely and my bloods 2 hours after would be relatively normaly. Nowdays id be lucky if 11 units covered a sandwhich. I take 15 units of levemir each night. But alas this doesn't seem to be doing much, although im generally waking up with nice lows ( 6.6 ) no matter how much i inject im not hypoing nor is it allowing me to lessen my insulin dose for each meals.

Now i dont mind taking however many thousands off units of insulin every day. Ideally i'd go back to having 6 units covering my sandwhich but oh well. However, is this a sign of yet another medical condition. Pancreatic Cancer? Pancreatitus? A type 1 / type 2 diabetes double whammy? I have no clue. Is this something i should be worried about?

First of all, yes, you may be coming to the end of your honeymoon. The 6 mo's-2 years you hear are guesstimates at best. The thing about diabetes is, no one is the same! We all have similarities, but what youre describing is a fine tuning on your part. So first of all, take a deep breath.

Cancer? Pancreatitus? Highly unlikely (closing in on impossible). I'll follow this up at the end.


I've heard the phrase honeymooning floating around the place and iv'e learnt this to mean when the pancreas is still producing minimal amounts of insulin and can last for upto 6 months to 2 years or so. Now that worrys me cause if im still honeymooning and my **** pancreas is still producing insulin. How much insulin am i looking at taking in 2 years? Is it going to be a catridge per shot! Im really confused and any help would be great on the matter!

My HB1AC (My first one right after diagnosis was 8.5) I am so determined to get this down and join the elusive 5% club. Im sure with a lot of hard work and a little help from my new diabetic buddies i can do this!

Sorry if i've bored you with my overly long post but thanks for your help in advance!
(Also sorry for any punctuation or spelling mistakes, it has just past midnight here so that'l be my excuse tonight!)

Thanks a lot

Lecsiy:)

Dont worry about your honeymooning. You really need to be flexible here. There are T1's who, for example, for a sandwich may need only 2 or 3 units, others 12. Like I mentioned above, we're all different. There does come a point where insulin resistance may come into play, but it doesnt sound like it at this point. Something else I'd like to bring up is your age. Youre hormones are pumping away, and youre still growing, so EVERYTHING will be out of whack. Dude, my diabetes was friggin CRAZY between 12-18 (puberty anyone?). It will settle. Youre A1C is not too bad, just a little adjustment here and there. Keep in contact with your endo and your doc, and read lots. Not just here, but about diabetes in general. Its not the end of your life :)

[jenb]

Hi Lecsiy, and welcome.

You are correct: Your Novorapid is "fast acting" insulin that is used to process the carbohydrate component in meals and to give you a relatively quick way to bring down unexpected high blood sugar readings. Your Levemir is long acting and covers basic metabolic functions; as such, you will not notice it working - it's sort of stealth insulin working in the background. It sounds like your 15 units of Levemir is a good dose for you if you're not experiencing hypos or going high unexpectedly.

There's a lot to learn about diabetes and it can be scary at first. But it sounds as though you're off to a good start. Try to relax and enjoy your new graduate course in physiology and nutrition! By the way - you might want to find copies of two books: "Think Like a Pancreas" by Gary Scheiner and "Using Insulin" by John Walsh. They will answer a lot of the questions you have about your insulin.

Jen

[e||ement]

Hi there, welcome to the forum!

I'm T1 also, diagnosed less than a year ago. I can tell you that what everyone has said...that everyone is different...is so right!

I can also tell you that the honeymoon stage CAN be frustrating...just when you think you have it all figured out, everything needs tweaking again. But I hear this is an ongoing challenge with T1s...honeymoon or not.

You've come to the right place for support and advice, that's for sure ;-) And it sounds like you're head is in the right place, and you are willing to do what it takes. Good for you!

Just test, test, test...Good luck!

[xMenace]

Your 17 and I'm guessing male. If so, you're in one heck of a dynamic period in your life. Your needs are growing and will likely continue to for the next few years. Don't expect any long term stability yet. If you're female, I suppose the same is true but to a lesser extent.

Learn to test. You have two or more insulin doses on the go at any one time. Do you really know which one is working and which one isn't? How would you answer this question?

You already know a simple technique: titration. But try taking it to a little more exactness. Eat that same sandwich every day until you find a steady dose that treats it. Then test this dose on other foods. You can't set rates if your food instake changes. And if your dosage then doesn't cover different foods, then this should tell you there's more to test for such as carbs vs protein or a basal mismatch.

Getting back to two paragraphs ago, now that you've thought a bit, have you considered how to test your basal insulin? Try skipping a meal and testing hourly. If a basal problem is uncovered, is adding more basal insulin the answer? Not if you wake up with good numbers. How do you fix it? I don't know exactly, but it can be fixed.

Why am I being so cryptic? Because I've fought this battle for 34 years and it's still not easy. Keep asking for help!

[lecsiy]

Hey,

Thanks for all the warm welcomes.

My main concern at the moment is im taking too much insulin per day. Is this correct?

Whats the average amount of insulin people take?

At the moment im on

15 units of levemir every night
No breakfast
10 - 12 Units NovoRapid Lunch
12 - 15 Units NovoRapid Dinner
7 - 8 Units NovoRapid Evening Snack (Allbeit a very hefty snack i've got myself into the habit of having over the years!)

This seems to control it OK. It seems like more insulin would do a betetr job but thats 50 units at the maximum every day. Which just seems wrong?

Thanks for your help

Lecsiy

[DeusXM]

There's not really such a thing as 'too much insulin' - if you're keeping your BGs under control and not putting on weight, then you're taking the right amount of insulin - whether it's three units or 300 units.

If your BGs are fine, then there's nothing to worry about, although I would say your first thing in morning test is 2 mmol/l higher than it should be - you should be waking up betwee 4 and 5, ideally.

At the moment it's hard to suggest where you can improve your control since you haven't provided any information about what your readings are like, your activity level, or how many carbs you're eating a day.

However I will say this - your insulin requirements will change and fluctuate. Also at 17 you'll still have a little more growing to do - the bigger you are, the more insulin you'll need, generally.

Put it this way, I take 28u of Lantus every day and then a variable total amount of Novorapid between 20 and 40u a day - oh, and I'm 25 and in good shape as well. When I started injecting when I was 14, I was taking 18u a day of Mixtard for the whole day. So I don't think you need to worry that there is some special amount that's too much or that an increase in insulin requirements is a major cause for concern. :D

[SueM]

Hey,

Thanks for all the warm welcomes.

My main concern at the moment is im taking too much insulin per day. Is this correct?

Whats the average amount of insulin people take?

At the moment im on

15 units of levemir every night
No breakfast
10 - 12 Units NovoRapid Lunch
12 - 15 Units NovoRapid Dinner
7 - 8 Units NovoRapid Evening Snack (Allbeit a very hefty snack i've got myself into the habit of having over the years!)

This seems to control it OK. It seems like more insulin would do a betetr job but thats 50 units at the maximum every day. Which just seems wrong?

Thanks for your help

Lecsiy

Hi Lecsiy,
My guess is that you need to do some basal testing. IE test to see if your levemir is working 24/7.
6.6 is a bit on the high side for waking but as you are new I will let you off :D
Skip breakfast one day do not take any insulin. Monititor your blood sugar every day hour and see how high or low it goes.
Next day skip lunch and do the same thing regarding testing. Next day skip evening meal and snack..
Doing this you can then see how your basal is working.
Many people find that Levemir does not last 24hrs so they split the dose AM and PM.
Also ask your Diabetes specialist nurse about carb counting/dose adjustment. This will give you a lot better quality of life.
BDEC is touted as the best on line course so have a look at that
BDEC Diabetes Learning Programme (http://www.bdec-e-learning.com/)
Also have a good look at the type of carbs you are eating. well worth looking at the Glycemic Index
Best wishes
Sue

[ant hill]

Hello & Welcome to Diabetes Forums. Here are people from all over the globe who has this stupid disease, Especially those who has just diagnosed and the regime that you know is with you for the rest of your life. Yes seems quite drab, I am sorry.

So let us help you as we go though this ourselves and explore new foods, Don't worry as chocolate is still allowed. :o To a limit. :( and insulin management and exercise. Ballence the three and you may feel better.

So you are a British as I am a Australian as we are not anymore a naughty prisoner on the biggest island on earth. So gone of the days of stealing a loaf of bread and transported here. :T

Welcome Lecsiy. :)

[DeusXM]

So you are a British as I am a Australian as we are not anymore a naughty prisoner on the biggest island on earth. So gone of the days of stealing a loaf of bread and transported here.

It's a shame, if it was still like that I'd be robbing the supermarket every six months or so getting a free holiday.

[ant hill]

It's a shame, if it was still like that I'd be robbing the supermarket every six months or so getting a free holiday.

Oh LOLOL, So do you think that I am on holidays. Oh how I wish Deus. :D It's funny how people see that places like Australia is a great place to take in sunny holiday. But I have the time but some of that green back's is missing. :confused:

[DeusXM]

It's funny how people see that places like Australia is a great place to take in sunny holiday. But I have the time but some of that green back's is missing.

I know exactly what you mean, everyone back at home thinks I spend every day skiing indoors and then playing tennis on the Burj Al Arab helipad. I wish....

[TommyC1]

If you aren't going hypo then you aren't taking too much insulin.

Most of us are trying to count the carbs that we eat and adjusting our bolus insulin to match. So we will take very different amounts depending on what we eat.
It does not sound as though you have been taught that method.

Get yourself a copy of Gary Schieners "Think Like a Pancreas" and study it.

[GeishaGirl]

Agree with everyone else. When I was first put on insulin (Novolog and Lantus) I was taking about 50u of Lantus a day, and about 75u of Novo to cover meals. I'm on a pump now, and range between 50-90u per day, depending on my carb intake. This is what works for me -- virtually no lows, and no weight gain (although it is making it hard for me to LOSE weight!)

I agree that you really need to test your basal (Levemir) insulin. If it's not enough, you'll be high all the time, and be thinking it's because of your food.

Good luck!

[lecsiy]

Ok great,

Another question i have is,

Choclate and sweets things like that. Some people say i should avoid, some people say i can have as much as i want just crank up the insulin and have as much as i want?

Also,

Complications and that. Now i am going to work at this. And my blood HB1AC will be round the 5 / 6 mark. It will be. If it means eating low carbs or whatever so be it.

Now assuming all of that ^^

Whats my risks of complications? Shouldn't a "perfectly" controlled diabetic have the same risk of complications than a normal person?

Thanks

Lecsiy

[SueM]

Ok great,

Another question i have is,

Choclate and sweets things like that. Some people say i should avoid, some people say i can have as much as i want just crank up the insulin and have as much as i want?
Moderation is the key word here :)

Also,

Complications and that. Now i am going to work at this. And my blood HB1AC will be round the 5 / 6 mark. It will be. If it means eating low carbs or whatever so be it.

Don't go in all guns blazing, if you do you will have burn out. Take things nice and steady. Remember you have to live. Diabetes lives with you not you with it.
Now assuming all of that ^^

Whats my risks of complications? Shouldn't a "perfectly" controlled diabetic have the same risk of complications than a normal person?

Thanks

Lecsiy

Complications are minimised the better your control. There is no guarantee that you will or wont get them. As long as you look after yourself to the best of your ability that's all you can do. We have one poster on the forum who has been type one for well over 60 years with no complications. I'm like quite a few others fast aproaching the 50 yr mark with no complications. Diabetes is not a death sentance and shouldn't stop you doing anything you want in life.
Oh and no ones perfect least of all us diabetics lol

[networkguy]

Its been answered but just wanted to re-iterate: 50u/day is only too much if youre going low multiple times/day. Im in my early 40's, was diagnosed at 10 mo's, A1C's in the last 10 years have been, uo until last year using a total of 90u/day, and now down to 60-75/day. Everyone is different. Ive also been lucky in that the only complications Ive had is retinopathy laser surgery 10 years ago on one eye, and thats it. As you will learn, there are some diabetics who can go as far as weighing their food, eating at the same time every day, etc who have nothing but problems. Theres genes at work here IMHO.

Its awesome youre taking an interest as much as you are! And try not to get overwhelmed lol

[lecsiy]

Ok thanks everyone,

I think its more the mentality. Im looking at this liquid thinking this stuff keeps me alive.

So to need LOTS of it is annoying. I guess if i as taking 5 units to cover a meal i'd feel less diabetic. Thats just me though.

So yeah, im battling through it, thanks for all your help. It seems like you've got an awesome community spirit going on here something hopefully il be getting involved in! And then helping the next new guy after i arm myself with some knowledge.

Thanks again

Lecsiy

[Gary_W]

Ok great,

Another question i have is,

Choclate and sweets things like that. Some people say i should avoid, some people say i can have as much as i want just crank up the insulin and have as much as i want?

Also,

Complications and that. Now i am going to work at this. And my blood HB1AC will be round the 5 / 6 mark. It will be. If it means eating low carbs or whatever so be it.

Now assuming all of that ^^

Whats my risks of complications? Shouldn't a "perfectly" controlled diabetic have the same risk of complications than a normal person?

Thanks

Lecsiy

I've also heard the 'whatever you want' quote as far as food choices goes. I don't avoid anything completely, but I am aware that certain things don't sit well and I'll treat them with moderation and caution. Anyone with type 1 who says they can eat absolutely anything they like should ask if they could get away with eating 6 doughnuts in a 10 minute period, washed down with a litre of real coke and then 'cover it' with insulin....

Once you get a handle on all this stuff you'll figure out how to cope with sensible amounts of anything. The 'whatever you want' should have the above caveat in it, though.

Welcome aboard. You'll be fine :)

[HollyB]

Hey there, and welcome.

Most diabetics need more insulin as a teenager than at any other time of life, but because you've been honeymooning you got to start small lol! It's normal and expected that you will need more insulin as your pancreas slowly or quickly gives up the ghost.

My son is 17, and averages around 60-65 units a day. That's actually come down a bit from last year. I think that's pretty typical for his age and weight. (And yes, that's a LOT more than when he was diagnosed at 13.)

So you're doing fine -- you need what you need to stay healthy, end of story. The increases will level out eventually, but meantime your doses will likely be a bit of a moving target for a while.

Good luck!

[lecsiy]

Last thing.. i promise!
For now anyway hehe.

Right, iv been told about the dangers of my feet dropping off. Lovely.

The other day i was cycling and managed to hit the side of my foot on the chain and cut myself. No biggie. The cuts probably no more than 3 inches long so nothing major. Sprayed it with savlon and haven't thought about it until now.

Now do i need to do anything special to prevent my feet from dropping off!

Thanks a lot

Alex

[DeusXM]

Keep your BG well controlled, and keep the wound clean. Injuries to feet tend to be overblown in terms of worry. The concern comes from the fact that higher BGs can damage the nerves in your extremities and you might injure your feet without knowing about it. And if you don't know about it, you won't treat it and the wound might get infected and gangrenous.

But if you know you've got an injury on your feet and just keep an eye on it you should be absolutely fine. Put it this way; I recently stubbed a toe so hard the nail burst out and left then of my toe a bloody mangled mess. I just kept it clean and dry and put Savlon on it every day. I still have the foot!

[HollyB]

Just to add to that: You're newly diagnosed, you aren't going to have any nerve damage to your feet for quite some time. Once you're a few years (5?) into this, your doctor will start watching for signs of nerve / circulation damage. If your BGs are reasonable, you probably have many years before you even have to think about this.

Once/if you DO get some damage to your extremities, then you have to be careful to keep an eye on your feet and keep them healthy -- because you might not feel how bad an injury is, and because it might not heal as easily as it would normally.

[lecsiy]

Hey,
Instead of posting a new thread i thought id relive this one cause i got a few more question :)

I tend to be circling around 5.5 in the mornings. Is this good? Or ideally would i want to be lower?

Can you get a "bad" batch of insulin? For example. When i started my last penfill catridge of insulin minsulin requirements shot up. Now im on my new one they seem to have gone down leaving me feeling very confused! (I have kept them all refigerated)

Thanks a lot

[lecsiy]

Also, i forgot to ask,

With regards to honeymooning. Should this make my life easier or harder? Does it get worse (harder to control) when im out of the honeymoon period or better?

Thanks

[dbc]

Also, i forgot to ask,

With regards to honeymooning. Should this make my life easier or harder? Does it get worse (harder to control) when im out of the honeymoon period or better?

Thanks

It should make things easier - When your pancreas doesn't produce anything it should be easier to match insulin dose to carbs eaten.

but.....

there's a flip side: While honeymooning, your body can/does compensate to some degree for when you get the insulin dose a bit wrong. Unfortunately it not a reliable effect, can kind of go in fits & starts. So sometimes it works for you & your post prandial BG is on target, sometimes it goes the other way & you'll go hypo :confused: !! This has happened to me quite a few times in the last 2 years, not so much anymore because my honeymoon is over


Oh, and 5.5 is a pretty good number to wake up with!!

[lecsiy]

Cool thanks man :)

And so what should my targets be, cause my doctor has been rubbish with setting me "rea"l targets.

They say anything under 10 ( 180 ) is fine. Which i know to be rubbish.

So whats good for a tightly controlled diabetic to wake up, pre and post meals?

Thanks

[Grunch]

Wake up <100, pre meal <100 and 2hr after meal <140.

[DeusXM]

They say anything under 10 ( 180 ) is fine. Which i know to be rubbish.

This is the one-size-fits-all advice they tend to give you - unfortunately, doctors have to assume that newly diagnosed people are a)stupid and b)scared. You're clearly not either.

Generally you want something in the 4.0-7.9 range - 5.5's fine for a waking blood sugar. You can also go a little higher immediately after meals but you want to be back down in the optimal range after 2 hours or so.

Really, staying in the 4.0-5.9 range is the ultimate goal but without making significant changes to your diet and lifestyle, this can be very challenging. It's your choice how much you're prepared to be either treating your diabetes to live v living to treat your diabetes.

[JJM335]

Lecisy:

One more point that nobody seems to have picked up on.

You are taking one shot of Levemir at night as your basal insulin. For T1's Levemir is generally recognized not to last 24 h. Most people take it 2 times a day. This might explain why your morning readings are good, but you need more bolus later in the day. Basal testing would reveal this, but you might want to talk to your clinic about splitting your Levemir dose.

Joel

[HollyB]

Waking up to anything in the 5s is my "favourite" BG number!

Through the night I like Aaron to be 5.5 - 7. Down in the low 4s, it's too easy to go low in your sleep, especially when your doses are changing. It's hard to get basal insulin perfect enough to keep you totally even in your teens because your own hormones fluctuate a lot.

Waking up in the 4s is great if that's your lowest BG through the night, but not if that means you've been in and out of lows all night. 5.5 is GOOD.