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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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#2
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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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T1 DX 4/2008 MDI Last edited by ppa; 07-24-2010 at 04:38 PM. |
#3
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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.. |
#4
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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.
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:
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:
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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T1 DX 4/2008 MDI |
#5
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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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T1 DX 4/2008 MDI |
#6
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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 |
#7
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Great, now I know more about what you know:
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T1 DX 4/2008 MDI |
#8
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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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#9
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![]() Quote:
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:
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T1 DX 4/2008 MDI |
#10
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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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