new here, type 1, bad news :(

[jaime7803]

hello all, my name is jaime. i am 29 and have had type1 diabetes since 1990. went to the retina specialist this morning due to some new symptoms in my vision. diagnosed w/ diabetic retinopathy and macular edema.but w/ 20/20 vision, hahahaha, go figure? currently i take novolin 70/30 twice a day. i haven't had ins. for over a yr and it has taken it's tole. my average bs is 350. my meter only reads to 599, but i've had higher, you know when you get that lovely HI on the screen? fun. so, i've never passed out, no comas, but i was on humalog for a few yrs. 'til i had a serious insulin shock. that instilled fear of lows, so much so, that i became comfortable w/ highs, safe even!!!! so my last a1c was 7.1. i haven't had an a1c in at least 3 yrs! i JUST got insurance yesterday, so i am squeezing the life out of it! plus, i just moved to a new state. so, i had to give up the drs i've known since i was a child. huge adjustment there also.basically i need advice on matching carbs to insulin, daily carb amounts,and general experiences w/ ppl NOT ON HUMALOG, for they have all the freedom in the world, whereas i have to adhere to stricter carb choices since my insulin is so slow.well, i've got many more horror stories, too much to post, lol.feel free to email me anytime, i'm SUPER social, and thanks!!!

[princesslinda]

Hi Jaime! Can't offer you any advice but wanted to welcome you to the forums. I'm sure other T1's will be along soon with lots of advice.

[shutterbug]

Jamie, welcome to the forum. We do have a lot of T1's here and I'm sure you'd receive tons of advice.

[jaime7803]

thanks guys! hahahaha, beggars can't be choosers, i'll take ALL i can get! looking forward to some great discussions!

[xMenace]

Welcome.

Can you get N & R separately? It's not the best, but at least you can separate the two and add a bit more flexibility. It all comes down to meaningful testing and adjusting until you stay in range. Without the ability to adjust, it becomes much more important to eat well - low carb!

You have to get that A1C down.

[shiftzor]

hello all, my name is jaime. i am 29 and have had type1 diabetes since 1990. went to the retina specialist this morning due to some new symptoms in my vision. diagnosed w/ diabetic retinopathy and macular edema.but w/ 20/20 vision, hahahaha, go figure? currently i take novolin 70/30 twice a day. i haven't had ins. for over a yr and it has taken it's tole. my average bs is 350. my meter only reads to 599, but i've had higher, you know when you get that lovely HI on the screen? fun. so, i've never passed out, no comas, but i was on humalog for a few yrs. 'til i had a serious insulin shock. that instilled fear of lows, so much so, that i became comfortable w/ highs, safe even!!!! so my last a1c was 7.1. i haven't had an a1c in at least 3 yrs! i JUST got insurance yesterday, so i am squeezing the life out of it! plus, i just moved to a new state. so, i had to give up the drs i've known since i was a child. huge adjustment there also.basically i need advice on matching carbs to insulin, daily carb amounts,and general experiences w/ ppl NOT ON HUMALOG, for they have all the freedom in the world, whereas i have to adhere to stricter carb choices since my insulin is so slow.well, i've got many more horror stories, too much to post, lol.feel free to email me anytime, i'm SUPER social, and thanks!!!

Well first things first. Who said you couldn't eat the carbs you wanted to? Yes carb choices are up to individuals but if you take control of your diabetes you can eat all the things you love safely. Do you have a insulin to carb ratio? An I:C will let you vary the carbs in your diet. Get an A1c done and start learning ;). Maybe if you get some accountability from testing and your A1c you might be more motivated to take action. You will feel soo much better when you have your sugar level under control. Do you play sport? How often do you test currently?

Carb Counting 101 (http://www.diabetesnet.com/diabetes_food_diet/carb_counting.php)

Complications - Diabetes UK (http://www.diabetes.org.uk/Guide-to-diabetes/Complications/)

Eating well - Diabetes UK (http://www.diabetes.org.uk/Guide-to-diabetes/Treatment__your_health/Eating_Well/)

However all is not lost your body can recover to some extent. The only way to achieve this is to take control. Loads of people here who will help if you ask it, so ask away ;), at least you have found your self in a good place. Welcome!

[Gordonm]

Humalog is not the enemy here. It works. You just did not have the right I:C ratio figured out. If your average BS is 350 your A1C will be very high. You will not feel very good for very long this way. Get help. You are out of control. With all the new insulins and meters and choices you can get yourself under control. YOU have to take control and learn how to manage this yourself. Noone is going to do it for you. It can be tough at times but the good health and feeling you will have will be worth it.

[jaime7803]

hey there! thanks for all the info! you know the saying "knowing and doing are 2 different things" ? that is exactly where i'm at, lack of knowledge isn't the problem per say, it's my mental hang up on super lows. i have been encouraged by several endo's to go take the MCAT for med school. it's using all this info, there lies the problem. i am scared to death to do anything. the only strategy i can use 'til i get to my appt. in june, is to lower my insulin, up my activity and lower my carbs. as for activity, i use to train for the ms. galaxy, if you know what that is. but everything has ceased since my "episode".i have'nt gained weight or anything, but i could def. use the cardio for my heart/bs. as for the ratio w/ novolin, it's shady. much more precision w/ the humalog, which i can not take now. i test my bs like a mad chik, i FLY thru strips! 10-15 times a day. i will get my a1c done in june, i'd like to get it now, but beef w/ insurance and all.so, i am going to hammer down and log every action from this day on, i hope to see a huge diff. in sugars AND at my next eye appt. in 6 wks!

[jaime7803]

well my dr told me humalog was the enemy for me, so don't know what to tell ya on that aspect. and yes i know, ruler of my own domain, etc. i can't find an aggressive endo anywhere. so i'm thinking about maybe a diabetes educator??? i've heard some good things about their methods from other type 1's. they cut out the endo completely, and use the d.e. for diet, insulin regimen, it all!

[grace girl]

Hi, and welcome. If your really serious about getting it under control, you've come to the right place.
I've never taken 70/30, but I did take 75/25 for the first four years after I was dx'ed. I never had an A1C below 9...they were usually 11.
From what I have read, it's almost impossible for a type 1 to get good control with mixed insulins. That being said, the only way to get the best control from a mixed insulin is to take your shots at the exact same time every day, and eat your meals at the exact same time, and have the exact same amount of carbs for meals each day. The slightest variation throws it all off.
If I were you, I'd find out why that doc said Humalog was off limits for you. If there is a serious medical reason, I understand, but if it was just hypos, I don't. People who have too many or too severe hypos on humalog usally don't have their basal and I:C ratios set correctly. And a though a good endo or DE can be a great help in all of that, ultimately it's up to you.
If your willing to educate yourself, and test, test, test, you can learn what you need to know to control this disease for you.

[Mich]

Hi Jaime,

Welcome to the group. I'm thinking you will find good information on this site to help you make decisions.

I can't imagine your doctor telling you that Humalog was the "enemy." What a negative thing to say about just another tool for regulating blood sugar. Humalog, Novalog and other fast-acting insulins make it possible for us to take our insulin right when we eat, allowing us to eat meals and snacks anytime we want. With Regular insulin, one must inject a while ahead of time and be extra careful to eat at the proper time and the proper amount or else. It was a no-brainer for me.

However, my first experience with a Humalog reaction was as scary as you say. Humalog was brand new at the time. After many years of using Regular, I had no idea Humalog could come on so fast. I delayed dealing with it and got myself pretty darned low. Since that time, I never go anywhere without my glucose tabs. If I feel myself going low I treat it immediately!

Have you found a doctor or clinic yet? If you mention your area, many people can let you know if they know of a good doctor or endocrinologist near you. There is also an online source for finding low-cost clinics at Find a Health Center (http://ask.hrsa.gov/pc/)

Again, we're glad you're here.

Mich

[jaime7803]

yeah, i can't find a good endo anywhere! i eat at exactly the same time everyday, same shot time everyday. i test 10-15 times a day also. i have an appt. w/ a new endo in june, so hopefully they'll be more aggressive w/ it. i have no problems following orders, i have never smoked, never had alcohol, i don't eat fast food, don't crave choc. etc. so my obstacles are few, thank god! just need the proper direction!!! thanks!

[jaime7803]

hey mich! i'd really love to hear the details surrounding your lows?!?!?!?!?!?shoot me an email if you like! i too have glucose tablets on me always, even before it happened. i am a walking emt! i will see an endo in june, 'til then i am keeping a log of everything to help me w/ my own calculations!

[jaime7803]

hey all! i just uploaded some pics, go check 'em out so you can see who you're chattin' with! ;)

[RobiJo]

Now that you have insurance and you are truly motivated... you might consider a pump. Showing the doc that your motivated will be all the records you are keeping now.

I definitely think you should switch insulin types in June. I just cannot see how a mixed works well for anyone. (okay I know some out there will say it's great for them...however I just don't get it.) Having to adjust basal when you need more/less fast acting just doesn't seem right.

[judi t]

I'm Type 1. In about my fourth year of having diabetes, I suffered a severe hypo that left me unconscious and scared the living daylights out of me. Basically, I hadn't known the bottom line possibilities of hypoglycaemia. A couple of years later, after the birth of my two children, I began suffering panic attacks - far more debilitating than diabetes, but their onset was similar to hypos - ie: adrenaline rush, subsequent palpitations and a bit of eye-rolling! I can laugh now, but it was horrendous at the time, and I'm amazed that I continued to live a normal life. I ran my BGLs high, to avoid hypos - which I still don't enjoy - and, like you, obsessively checked my BG about 10 to fifteen times a day. I recognise now how mental and unnecessary that was, and it led to me overcompensating for possible hypos I might experience. Plus I was unable to sleep for more than 50 minutes at a stretch each night. It was a difficult time.

I'm over it now. My endo, when I was begging for drugs to control the panic, and after I'd already seen a therapist to learn relaxation techniques, recommended a somewhat dated book, A New Guide to Rational Living, by Albert Ellis, I think. You could google it. Anyway, it's about Rational Emotive Therapy and it helped me tremendously as far as living with my fear of hypos went. You might find it useful.

Hope that helps.

[jaime7803]

thank you soooo much! i will def. chk. into that!!!!! hahahahaha, there is nothing to fear, but fear itself ;)

[jaime7803]

good news today, my drastic efforts are paying off! morning bs was 175, instead of 430!!!!! ;) lunch was 159!!!! yay! although these are not perfect, i think it's **** GOOD PROGRESS for 24 hrs!!!! plus, you just can't go from a 15 a1c to a 6 overnite. i am keeping a journal of everything, feelings, bs, insulin, food. my doc will be well informed come june! ;)

[UpNorth]

Welcome to the forums :)

First off, i think it's time you overcome your fear of lows and do EVERYTHING you can to get your sugars down to a healthy level. The only reason you feel well this high, is because your body doesn't know what normal sugar feels like now. If you hover around nicely within normal ranges, and knowing I:C rations etc, hypos CAN be avoided most of the time.
Ditch the Novolin and get your hands on a peakless longacting (Lantus or Levemir) and a rapid acting like Humalog, Novorapid/Novolog or Apidra. I'd say it was probably your long acting insulin that caused your hypos before, if it was NPH or some peaky stuff like that, and happened to peak at the same time as your Humalog. It's a balance act, but it's easy enough to manage it once you learn how your body is reacting. Or look into a pump. Lantus or Levemir in combination with a rapid acting, or a pump with rapid acting, will give you so much more freedom and flexibility and IT IS POSSIBLE to have normal bloodsugar and still avoiding those real bad hypos. I haven't had a bad hypo for VERY long now. Sure, i've had hypos, but they haven't been too bad... I'm currently pumping, but mostly been on MDI since my diagnose 3.5 years ago. First i was on Lantus and Novorapid, then i was pumping Humalog for a short while, then pumping Novorapid, then MDI again but changed from Lantus to Levemir and Novorapid. Now i'm pumping Novorapid again.

Give Rapid a go again, or at least take the R and N separately for some more flexibility. That's just my suggestion...

[jaime7803]

thanks for the suggestions! yeah when i say "feel well high" i mean mentally, not physically. anyone gets hypos, but insulin shock is much more severe. i was on lantus w/ the humalog before. we're talking bld sgrs of 18 and 20 here, not just the shakes. being that you've only had this a few yrs, and not 18 like me, you probably haven't had any that low. i am keeping a journaland tweeking all i can 'til i see the dr in june. thanks again! ;)

[RobiJo]

thanks for the suggestions! yeah when i say "feel well high" i mean mentally, not physically. anyone gets hypos, but insulin shock is much more severe. i was on lantus w/ the humalog before. we're talking bld sgrs of 18 and 20 here, not just the shakes. being that you've only had this a few yrs, and not 18 like me, you probably haven't had any that low. i am keeping a journaland tweeking all i can 'til i see the dr in june. thanks again! ;)

Accurate and appropriate use of newer insulins and pumps can really reduce these severe lows from happening. I've had about 10-12 hypos that resulted in seizures and glucagon--all of which happened when I was on NPH and R. What were the circumstances with your severe low Jaime? Figuring out what happened and why will help us respond and give suggestions for you so that it's not repeated.

[jaime7803]

my dr. was saying that my pancreas is working, just that it has a mind of its own. so, the fast acting is too dangerous w/ that kinda unstability. that's the only thing i can associate w/ the drastic lows. i kept a super tight schedule, same thing, same time, everyday. robotic. iwas on the reg. and nph for about 15 yrs. never got lower than the 50's. i'll probably get put back on that when i visit the dr.

[dottielove]

Hi Jaime--I'm new here, so please forgive me if I seem pushy--I can be overly direct. You gotta get better. Your fear of lows is silly (look, I can say that--read my intro). Staying as high as you are is really bad and could be the direct cause for your eye problems. I say "could" 'cuz I believe there's an unknown factor w/ complications. Many of my 41 years w/ T1 I played the odds, and I'm still fine. But my bro, dx'd in 1966 just like me, was found dead at age 48--heart attack--NO control, no dr., 1 shot NPH/day. He was an "insulin chaser," took a big shot in the AM, then ate all day to counteract it. I HATE NPH--hate its lows. Humulin lows are MUCH "lighter," (although I have hypo unawareness--I can be in the 30s and not realize it).

Jaime, you gotta hook up w/ a good endo in your area. A good one will be part of a team w/ dieticians and CDEs. You need a lot of education and counseling--I think you have some incorrect perceptions (please don't get mad at me or being so blunt). What state do you live in? Dottie

[jaime7803]

hello dottielove! thanks for your suggestions ;) i am very well educated when it comes to diabetes, so much so that my past endo's have suggested i enter the field. it is my experience w/ sugars in the low teens that have formed my "hangup". i am fully aware of the issues. i have made great changes in my entire schedule. i have also seen drastic changes in just 4 days. i have taken my knowledge and actually put it to use, like they say, knowing and DOING are 2 diff. things!!! lol. my highs are only in the 200's now, which is superb considering i lived at 450. the frequency of the highs are also just a couple of times, and for very short periods. i am actually seeing numbers in the 100's! the average on my machine is dropping 30 and 40 points a day. like i posted several times, i will not be able to see the dr. 'til june 11th, 'til then all i can do is put my knowledge to the test ;) thanks again for your concern, i greatly appreciate it!

[dottielove]

Hey Jaime--that's great that the drs. are suggesting med school to you. I think someone who's gone thru all the years of ALL the needles, the lancets, all the **** you gotta pack just to take a walk, not to mention any complications (or just living w/ the fear of comp.)--that someone would have more validity to me as a patient. I get so tired of the constant self-evaluation I have to do ("Am I low? High? Spaced out? Dry mouth? Quick--what's 6 x 7?")

You know there's also a danger w/ those of us who've lived so long w/ diabetes. You don't realize that your body starts reacting differently the older you get. Like when I first started w/ the hypo unawareness, I'd be thinking "I'm not low--I'm not sweating, not shaky, but why are my lips numb?" Then when I had gastroparesis, I'd be thinking "I can't be low--I just ate!" Then I'd have lows that lasted a long, long time--like an hour. What's that saying about if it looks like a ___, it MUST be a ___?

The lowest I ever got (and was conscious) was 18. Once when I woke up in the ER w/ my first serious low/convulsions (BG 26), I realized I wasn't dreaming when I started reading the equipment on the wall and there were words I couldn't have made up! And the cold and shivering! I had a heated mattress pad, and I sweated so much that it was shocking me! It's all kinda funny now, but it's awful when I regain consciousness: my husband yelling at me "Drink! Finish it!", OJ everywhere, the dogs barking, and I'll be so cold and wet I have to take a hot bath--and always at 4 AM! It happens about once a year or so--has hardly happened since I started pumping.

So I completely understand about the fear of lows. I have to test always before I drive, for one thing. I'm a college teacher and I have to test always before class. I get so annoyed when I have to go on a quest for sugar when I'm low, and I have an odd shame or embarrassment w/ lows.

You really might think about the pump--it's the coolest. At first it's really complicated, and you have this THING attached to you. But it has simplified my life BIG TIME!

But what freaks me out about lows that low is the fear of dying brain cells. I feel dumb and tired when I'm high, but that's just temporary. I've tried to find info about lasting effects of severe hypos w/ no luck. I don't want to be any dumber that I am! Dottie

[jacobsam622]

welcome to the df