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Old 07-23-2010, 04:37 PM
opheliatype1 opheliatype1 is offline
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Default Loosing control..need some advise!

hey, im 17 and i was diagnosed with type 1 at the beginning of the year, my family and nurses were all really shocked at how i instantly adjusted to all of the changes and seemed to be in total control of it within a a week. but now that some time has gone i'm beginning to loose control and dont know why, it all seemed easier in the beginning? i dont want to let my family know because theyve only just stopped obsessing and i dont want them to start again. need some advise.
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Old 07-24-2010, 04:29 PM
ppa ppa is offline
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Hi Ophelia,

I feel for you. It's always disconcerting when what has been working, then does not. Hey, great for you that you "rolled" with all the changes and adjusted so well at the time of your DX. I was DXd two years ago, adjusted very well initially, and have then gone through many iterations of my MDI regimen - having some tough times a year after DX. Hang in there, you will master this and eventually learn, managing T1 is constantly learning and adjusting. The more you do it, the better you get at it.

The best advice I can give you, generally, is to go here - ADA Forum:
http://bit.ly/dikRGF

Sign up and create an account so you can post. There are many wise, experienced T1s who would love to help. That being said, I would need to know more about the following to offer any input:

1: MDI or Pump?
2: Is your basal set correctly?
3: What are your I:C and correction ratios?
4: What do you eat?
5: What is your exercise regimen like?
6: What have your a1cs been like the last year?
7: What lab tests are you having done, yearly and quarterly?
8: How do you know you are a T1; did you have the GAD antibody tests done?

As well, I would highly recommend reading the following books:

1: Dr. Bernstein's Diabetes Solution: The Complete Guide to Achieving Normal Blood Sugars
2: Think Like a Pancreas: A Practical Guide to Managing Diabetes with Insulin -

You will find that the best medical advice often does not come from the medical establishment. I highly recommend seeking out a T1 support group in your area, so you are not alone with this. T1s have the best info - because they have the disease. There is a lot of differing opinion about how best to manage T1. You will have to experiment and find what works for you.

You may being going through the end of a 'honeymoon" period, whereas your pancreas is producing less insulin than at DX. This is very common, though it seems a bit soon for your DX date. PM me if I can be of any further help. I know how it feels at the beginning, the folks at the ADA forum were of SO MUCH help for me at the beginning, and continue to be one of my main resources. ( I'm 2.5 years into my "D career" ) I, personally, get much better info from the experienced T1s than my CDEs and Endo. Doesn't mean that this will be the case for you. Take it all in and evaluate what makes the most sense. You are in charge of this, not the Drs.

Best,
Josh
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Last edited by ppa; 07-24-2010 at 04:38 PM.
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Old 07-27-2010, 05:11 PM
opheliatype1 opheliatype1 is offline
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hi Josh
thanks for replying
i'm not really familiar with all the words your using so i will answer what i can
im currently on the insulin pens using lantus and novo rapid, havnt yet thought about using the pump do you think it's the better option?
i have cut out alot of foods from my diet however there are times when i say i dont care and go on what i would call a binge eating session. the hardest thing which is starting to become difficult is the fact that i can't jusp pick up anything when i am peckish and do get hungry between meal times
my blood sugars wer in a good range (6-12 mmol/L) until about a month ago, now they seem to stay between 14 and 25 mmol/L and have even gone as high as 31
my lab tests are yearly i think
i became ill around last christmas and waited about 3 weeks before going to the hospital where they diagnosed me as type 1 and kept me in for a week ive also had to go back a few times for blood tests.
im worried about being taken into hospital again as i feel like im goin down the same road with the wieght loss,fatigue and constant thirst..
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Old 07-27-2010, 05:56 PM
ppa ppa is offline
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Hi Ophelia,

Don't worry about not understanding the "diabetic lingo" it's good that you're starting to get exposed to it, as it will be beneficial to know it. I'll specifically address your questions and explain the language later. For now, since you are worried about the state of your health I would strongly suggest the following:

1. See the Drs. whose care you are under and honestly discuss your situation.
2. Put aside your concern about worrying your family.
3. The most important issue is taking proper care of yourself.
  • Your Drs. are your best bet in the short term to getting you on the proper course

I would urge you strongly to communicate with them. T1 is nothing to mess around with and proper communication with your Drs. and family is essential, espcially at your young age.

So that is my basic "Macro/General" advice. Onto some specifics:
  1. What country do you live in? I'm not familiar with the mmol/L numbers. In the US we have a different system, so I don't know if your numbers are problamatic.
  2. Have you checked out the ADA board I linked in my first post? I would go there right away. You will get a ton of, sensitive and intelligent advice on how best to proceed.

Terms/language definitions:
-I:C ratio = Insulin to carb ratio. You have to establish this, so you know how much insulin to take for your meals
-Basal, is the "long acting insulin and amount of "Lantus" you are taking
-MDI= multiple daily injections, meaning the system you are on of taking
Lantus for your basline, or basal needs, and novolog, or "rapid" for your meals.

You need to understand what these two insulins do, when to take them and how much to take.

You start by establishing your "basal" or Lantus amount. Right underneath this thread, there is a thread called " Basal Testing: Get your Basal Amt. Set Correctly" with complete instructions on how to "basal" test. Print out these instructions and take them to your Dr. to discuss how to do the basal test and discuss all the language I'm defining here.

-Correction ratio= how much "Novo rapid" to take if your blood sugars are high 2-3 hours after eating, or high in general. You are "correcting" your blood sugar, this is why it's called a "correction ratio".
-MDI ( multiple daily injections-what you are doing now ) or pump is a personal preference. Stay with MDI until you fully learn all that I'm talking about. Pumps require more knowledge and skill to master. You really need to know what you are doing to be on a pump. Again, I would urge you to discuss all this with your Drs. If your Drs. don't know what I'm talking about, you might want to find more knowledgeable Drs. I don't know what's available in the country you live in.
-CDE= "certified diabetic educator" this is a US classification/term for nurses who are specificaly trained in diabetes care.
a1c= is a test that most feel is the best indication of how you are managing your blood sugar levels. This test should be done every 3 months.

Let's not overload you with any more at the moment. The GAD antibody tests, yearly tests we can get to later.

The most important thing is to start you on the path to educating yourself of all the components needed for your care. It's seems like a lot at first, but it becomes easy knowing all you have to do after learning about it initially.

I learned from the two books I mentioned in my first post.

So, write me back and let me know:
  1. What you understand and what you don't.
  2. When you can see your Drs?
  3. What country you live in?
  4. If you've gone to the ADA forum and posted your issues?
  5. If your Drs. and you understatnd MDI, Basal testing and amounts, I:C and Correction ratios. These are the basics.

Not to worry, you'll get all this down. We just need to get you to the right educational and healthcare sources.

Best,
Josh
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Old 07-27-2010, 06:05 PM
ppa ppa is offline
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Ophelia,

Here are the basal test instructions. You have to get your "basal" or Lantus amounts set correctly. This is one of the first things to work on.


I got the below instructions for settings one's daily basal amounts from the 'old timers' on the ADA board. I've really found experienced T1s to have some of the best systems management information out there.

Hope this is of some help to everyone. It takes a little bit of discipline, but is worth it. Remember, hyperinsulimia is one of the key degenerative states we need to guard against, or be on the lookout for; though you may not get that from your Endo. lol.

Best, Josh

Basal Test Starts Below
-And there is an attached file at bottom of the post you can simply download. It's in .txt format ( Plain Text )


First, I would highly recommend basal testing. This testing is to figure out if that one injection of Lantus is giving you 24 hour coverage because that's the whole point of a background insulin like Lantus or Levemir. Here are my favorite, very basic instructions on basal testing from integrateddiabetes.com:

Rules for performing basal tests:

1. No Food Being Digested
You may not eat for at least 4 hours preceding the basal test.
The meal/snack preceding the basal test should be low in fat.
Do not eat during the basal test, unless your blood glucose is below 70*.
You may have water or diet beverages during the test
No caffeinated beverages during the basal test.
2. No Bolus Insulin Working During the Basal Test
Do not bolus for at least 4 hours preceding the basal test.
Do not bolus during the test, unless your blood glucose is above 250**.
3. No Changes in the Body's Normal Glucose Output
No hypoglycemic episodes for at least 6 hours preceding the basal test.
No illnesses during the testing (fever, infection, virus)
No steroid medications being used
Avoid testing during major stages of menstrual cycle if blood glucose changes are usually noted
4. Allow Basal Insulin to be Delivered Uninterrupted
Do not put the pump into suspend
Do not disconnect from the pump.
5. Maintain low-moderate activity level
Do not exercise starting 4 hours after last meal/snack.
You may perform light/moderate exercise soon after last meal/snack if it is your normal time to do so.
Perform usual daily activities during basal test.
6. Monitor blood glucose levels
Start testing at least 4 hours after last meal/snack/bolus.
Use the same blood glucose meter throughout the testing.
Check blood glucose level every 2 hours.
Testing may be performed for 4-12 hours.
* For readings below 70, take carbohydrate and stop the basal test.
** For any readings above 250, stop the basal test and check for ketones.

So that's the first step. Next start testing your insulin to carb ratio or I:C. Start with the premise that you need one unit of insulin for 15 grams of carbs. 5 units doesn't have to be "a lot" as long as it's matching the action of the carbs.
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Old 07-27-2010, 09:20 PM
opheliatype1 opheliatype1 is offline
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Im from the UK.....mmol/L - the doctors told me that it shud stay between 6-10 which is normal anything above is too high.. i looked it up and it said to multiply by 18 to find out the method that you use ,so for example if my sugar level is 20 then in your terms its 360 i think.

the 24 hour acting lantus pen i am currently on 14 units a day
novo rapid is 3 times a day with meals or basicly whenever im eating anything with carbs, the I:C is 1 unit of insulin to every 10 grams of carbs

i havnt been told the correction ratio so im never sure how much to take when my blood sugar is too high.. lately ive been guessing and have either taken to much causing me to hypo on a bus (hypos are the scariest feeling i have ever experienced in my life) or too little.

i have got a diabetes nurse who i went to see every week for the first few months but havnt seen in about a month or two.

im due to go hospital in august so im guessing that might be for the a1c test

i understand the insulins and what they do but cant measure exactly how much to take as foods i never thought were high in carbs or sugar appear to be very high.. especially fruit juices.. i enjoyed juices before diagnosed but now cant seem to find one that is low in sugar so i just stay away from them

.... also i dont inject if im eating out or grabbing a quick bite while out... cant seem to get comfortable with whipping out the injection kit in public or resturant bathrooms..i feel like people who see will look at me like some sort of drug addict (even though in some aspects i guess i am) and public bathrooms hygiene does not seem the place for something as important as this
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Old 07-27-2010, 11:46 PM
ppa ppa is offline
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Great, now I know more about what you know:


  • I'm so glad to hear you have your I:C ratio started, keep in mind it can change.
  • Your not "given" the correction ratio, like all things D, I want to strongly urge you to take charge and utilize your Drs. and "diabetes nurses' " knowledge to figure it out. For example, establish your target mmol/L: ( these are just suggestions, please talk with your Drs. and nurse to create the proper targets for yourself. )
  • 6 mmol/L for before and
  • 10 mmol/L for after meals.
  • When you find yourself high try a correction, let's say 1 unit of Nov/rapid for every 2 mmol/L points you are over target.
  • Check bg every hour to see what that correction does. It's all experimentation. It is very helpful to log all "events". For example I log, every day every shot, every before/after bg reading, every meal in carbs. It can be a pain in the a^&, but you have to do it at the beginning to learn how your body reacts to the food you eat and the insulin you take. We can discuss the easiest ways to log. For ex. I have an iPhone, I use the app from this website. I'm going to assume you have an iPhone or you wouldn't be on this forum. GB is my main tool. I could not live without it.
  • Remember - it's your health and YOU are in CHARGE. At 17, you have a long life ahead of you, one that will be healthy if you advocate for your diabetes management.
  • It is wise to know how much carbs are in everything you eat. Again, not easy to figure, but it is possible.
  • Every diabetic I know, estimates all carbs, everytime they eat.
  • There are many books that will give you a complete view of the carbs. Now, they're not all exact but it's a good place to start so you are not "guessing in the dark".
  • I use this book: http://amzn.to/b5pe6P
  • There are many others.
  • You need to always have sugar with you for hypos. I carry raisins with me at all times and use apple juice to correct at home.
  • What ever you decide on, juice, glucose tablets - whatever.
  • Use the same thing "sugar" to correct hypos everytime so you get to know it.
  • Correct hypos with 15g of carbs at a time, if below 3mmol/L correct with 30g of carb.
  • Check every 15 minutes until you are above 4 mmol/L
  • ( these are rough approximates, based on your conversion of 1 mmol/L=18 mg/dl - my measurement unit. I haven't checked your math )
    I'm just using some safe numbers as suggestions. Please check on these numbers with your nurse or Dr. I would not wait to see them. I would advocate for yourself to learn all you can. I would also suggest strongly to buy the books I mentioned.

    You sound like you've learned a lot of the basics. Keep going, worry not about being a bother, and learn all you need to learn to take best care of yourself.

    As well, in public, if you don't like "doing the do" in front of the people you eat with, move to another part of the restaurant. Forget about what people are going to think. Bathrooms are not a good place to "do the do".

    You'll get it all down. It takes a while, but don't stop know and please see your health professionals if your numbers are consistently above 11 mmol/L. I'd like to see you keep it under 11 as a first goal. Eventually, you can shoot for targets that make the most sense for you.

    Let me know if I can be of any further service.

    Best,
    Josh
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Old 08-27-2010, 08:20 AM
dentalknox dentalknox is offline
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Hi I have had type1 diabetes for 31 years, I have had the insulin pump for nearly a year now, I do like it but find it hard sometimes, blood sugars a bit crazy at the moment, and feel very low any suggestions how to get back on track. Any advice appreciated, I live in Scotland
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Old 08-27-2010, 01:21 PM
ppa ppa is offline
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Quote:
Originally Posted by dentalknox View Post
Hi I have had type1 diabetes for 31 years, I have had the insulin pump for nearly a year now, I do like it but find it hard sometimes, blood sugars a bit crazy at the moment, and feel very low any suggestions how to get back on track. Any advice appreciated, I live in Scotland
Hi dental, not really enough info from your side to make any great suggestions. I would suggest you go here:

http://connect.diabetes.org/forums/Forum3830-1.aspx

And post more details about what's going on with you. There are a lot of very experienced T1s on the above linked board, that will be a huge help and respond right away. You would have to detail things like:
  • "...going crazy at the moment" means.
  • What your pump regimen is like, what exactly is happening when
  • What your I:C and correction ratios are,
  • What has changed recently in your behaviour etc.
Though two general things do come to mind:
  1. If you can get with your pump Dr. or Nurses and go over your regimen
  2. Test more frequently, every hour if necessary, and back down how much insulin the pump is dispensing every hour.
I feel for you, I've been having a very difficult time lately, it really can make life difficult. Chin up - you'll get through it. Feel free to PM me or ask any other questions that might come to mind. I really suggest going to the ADA board, linked above. I've learned more there from experienced T1s than from my doctors/diabetic nurses here in the US.
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Old 09-09-2010, 04:40 AM
smunchie94656 smunchie94656 is offline
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I have the pump I was haveing problems just like yours and before I was on the pump I was on the pen but how ever the pump is alot better j am under control now and I am felling way better so
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