Just diagnosed and very confused

General
1

my name is tonya and i am a 37 y/o mom of 3 and i was just diagnosed last week with type1.  i went to the er for what i thought was dehydration and turned out i was testing over 700 with my blood sugars...which was followed by 4 days in the hospital.  seems i was very hard to bring down.

now that i am home i am very confused.  i have asked my doctor questions and still have many more lol.  so far, i cannot control my levels for the life of me!  i am extremely high in the daytime (almost always between 200 and 400) on and off..higher in between meals of course, and i crash every single night to anywhere from 40 to 80 (once i hit 80 i go down fast in numbers). 

am i suppose to take my extra (r) insulin every time my levels rise???   doc says only to test at breakfast, lunch dinner and bedtime, then i can take extra depending on the sliding scale.  he just changed me from 70/30 2x a day (34 units) to 24 units of long lasting and 14 of r at breakfast, only r at lunch if high, 10 r at dinner then 16 long lasting humulin at night.

also not sure that if i wake up and am low or near regular (no idea what that is for me yet) do i skip the fast acting (r) or still take it with the regular humulin?  god i am so confused.  i will be asking the doc tomorrow since i have to call to let him know how the new levels of insulin are doing, but will probably be changed again since i am still too high in the day and crashing every night. 

i know people cant tell me what to do with my insulin, but any similar experiences would be great to hear.

in the mean time i am scared to death i am going to go into shock or something until this all gets straightened out!

2

Proudmama, you've come to the right place....  The people here are so helpful!

I'm 30 and was only diagnosed less than three months ago, and I can tell you that my first week was terrible for my blood sugars!  No lows, but highs all the time.  They start out reasonably conservative and increase or change your doses a little at a time.  It'll improve!!!  I'm now mostly in the "normal" range.

I did (and still do) test 2.5 hours after meals and, according to my CDE's directions, I would take "correction" doses as needed... and I always needed them at first!

It sounds like your regimen is very different from mine, but I still take my rapid-acting insulin at meals if my blood sugar is normal.  Though, if my blood sugar is very close to low, I might take a little less rapid acting than the meal calls for.  Do you take a set amount at each meal, or is it based on how many carbs are in the meal?

I bet your doctor can adjust to help bring both of your trouble areas closer to normal.  When my blood sugars started getting into the normal range, I found that I tended to get low in the evenings.  Once my blood sugar started to get under control, I went low in the evening until my CDE had me make some changes.

Is your docotor just a general practitioner or internist?  If so, I really recommend you see either an endocrinologist or a Certified Diabetes Educator... preferably both!  My GP is awesome about most things, but was clearly out of her element with diabetes and insulin... and I hear most GPs are.  They know the basics,  but it's a complicated disease and they aren't specialists.  I'm eternally grateful to my GP for diagnosing me and getting me started on the right path, but I think I'd be lost without my endo and CDE.

3

Take a deep breath, it will be OK!!!! First it will take a little bit before the your bs gets more in range. You are not alone!!! I was dx'ed 2 years ago at 52. I am surprised you're using r. I use Lantus (long acting) and Novolog (quick acting). Ok I take 30 units of Lantus in the morning. I take Novolog at 2 units for every 15 grams carbs. If I am high (that still sounds funny to me LOL) I use 2 units for every 50 over my target. Target for me is 80 - 120 with the main goal being 100.

  Here's an example, if I got my bolus wrong and about 5 hrs. after my last bolus I am running high then I will correct. Check with your Dr. and see if you try a sliding scale. So using my ratio this is how I do my bolus for food. I figure out how many carbs. Let's say 2 slices of bread that's about 45 grams of carbs. That means I need to inject 6 units of Novolog for the bread. If I eat more I add more or less if I eat less.

 One last warning, because your bs has been so high for so long it takes for the body awhile to adjust.

 You have a great place for help and support!!! Welcome to Juvenation.

4

Of course, your doc is the primary adviser, keep in mind when you get advice here. 

First off, not to scare you, but going into shock and not feeling good from highs is now your reality.  Even with the best of experience and control, you still will have these issues.  However, you have people here that have had diabetes for over 30 years and have never gone into a comma.   You need to make blood sugar testing a big part of your life now.  You will need to pay attention to tell tale signs (yawning, exhaustion, tastes in your mouth (ketone), thirst, etc).  You are a monitor of a sort.  On top of that, your blood testing monitor will play a major part too.  Here is a sample of testing I think works fairly well (i.e., not too aggressive, but good enough for most people).

Testing:

For now, test like this:

  • When you wake up
  • Two hours after each meal
  • Once before meals
  • 2 hours before bed
  • Test at bed time (help know if you are going in the direction of low or high a little based on this and the previous test)

This is abour 8 tests a day assuming nothing is off (too high or low).  You will need to get your doc to write prescription and get insurance approval for the quantity.  The reality is that this is for a relatively okay control day.  However, if you have lows and highs, which you will, you will need at leat 50% more (i.e., 4 more strips a day).  You might miss a test here and there, so it kind of evens out if you say 10 tests a day.

Adjust for Highs and Lows

If you are high, you will adjust with your quick insulin (sounds like you use R) and test again an hour later.  Generally, for most things, it will be a couple units of R.  This you can ask the doc about.  He should be able to provide a formula for you based on your high and through what your tests shows is needed to bring the sugar level down.  For example, some people require 2 units of R to bring their sugar down 15.  However, another person might go down 30 if they use the same 2 units of R. 

If you are low (80 or lower), you take a snack (fast sugar and a slow sugar (e.g., juice and milk)). Try and avoid over adjusting with insulin and food.  Sometimes with real lows, people just eat and eat and shoot the other direction for example.  Your doc can provide a formula to show the number of carbs you take to bring your sugar level up a certain number of units. 

 

A note about insulins.  R and humlin (N?) are kind of old school insulins.  See if he is wiliing to look at novolog and lantus for example as a combo if you do not use a pump.  Also, note that a regular doctor is great if that is all you have access to right now, but you can get an endocrinologist that specializes in diabetes that would be great.

5

Hi Tonya

First of all understand that it is certainly o.k. to feel angry, scared, frustrated, confused and just worn out. Its also o.k. to cry about the injustice of diabetes and give yourself the chance to do that.  Probably the hardest part of a new diagnosis is finding people who have been where you are at - for support, for questions and for piece of mind that you are not in it alone. You have come to the right place. While the diagnosis is new to you the diabetes has not been new to the body and the body has undergone a very real physical toll as well as a mental one. 

You will be going thru a lot of emotions so stop by here as often as you can and let them out. We have all been there either as parents of T1's or as T1's themselves and we have all seen what happens as the result of diabetes.  First, the thing you have to understand about diabetes is its an adjustment everyday for awhile - an adjustment in meds and an adjustment in lifestyle. That is o.k. its part of the process.  Second, don't try to take things too quickly, education is very important and ask lots of questions here - the people you will meet here are incredible.

Third, understand that you can do everything right in terms of exercise, diet and meds and your numbers can still throw you for a loop. So if you see numbers in the 300 or 400's often then look at what  you are doing and sit down and study the answers. 

As for insulin - obviously it depends on a number of things including weight.  Many on this site will test 8-10 times a day. Some will test before they eat and give themselves insulin for what they feel they will eat in a meal. Some will test and give themselves insulin after the meal when they know exactly what they have eaten.  We also have those who know they should check and don't. On this forum they are open and honest about it. I am not saying that is an option but want to emphasize that not everyone does exactyly what they need to do everyday according to the book - they have lives to lead and situations are not perfect all the time for diagnose all the time and everyone does the best they can do. They learn and they adjust.

What you will hear often on this site is that numbers are less a scorecard and more of a bingo card.  Eventually you will see numbers as a guide and not some set in stone sign that you have done something either right or wrong.

All that will come. Spend some time to be angry - you have every right to feel that way.  Right now you are confused and scared and you are being bombarded with information that sounds like Greek to you. Your hearing things like A1C, pumps, Insulin to carb ratios, DKA, Humolog, Lantus, waking numbers, Blood Glucose, Blood Sugars, Ketones and many more will reveal themselves but that is O.k. If you hear something that sounds strange just ask. We have as I mentioned some great resources here, we have one of our own that was diagnosed in the late '40's (and I mean 1940) and he has seen changes in care and in treatment and in equipment that we can never believe. We see positive hope on the future that was not there 5 years ago, pumps that will very soon not only allow for insulin delivery but will include a CGM (a continuous glucose monitor) that will allow you to see when your going high or low.

Well, anyway, take a deep breath and realize that your not alone. Stop by often and bring lots of questions. Be prepared to meet some great people and take advantage of their help.

I wish you good luck. We are here. 

6

I didn't say anything about it since I'm a newbie at this too but, like the other commenters, I was also surprised you're on humulin and R.  A Type 1 friend of mine told me that when she switched from those to Lantus and Novolog 10 years ago, her CDE told her she was as on "outdated" insulin.  And she said that the switch absolutely changed her life.... suddenly she had better control and had more flexibility with her food.

It's part of why I recommended a CDE or endo doc.  :)  My GP didn't really know what insulin to prescribe either, until my CDE called and told her what to order for me.  I have nothing else to compare it to, but Lantus and Novolog seem to be working really well for me so far.  (Not that I'm not looking forward to starting on the insulin pump soon, which will use only Novolog.)

7

I haven't been on shots for 11 years, so I won't even pretend I can tell you how to help with your insulin. Everyone here has given you great advice - keep in contact with your doctor or endo (if you have one), reach out to others with diabetes (such as here on juvenation and other local support groups in your area), and most importantly - don't give up.

i was diagnosed when i was 5 and i can remember the confusion. for me, i was confused about why i suddenly needed shots and fingerpokes. for my parents, their confusion was much more abundant than mine. they worried much more than i did :o)

i'm glad to already see you on here and reaching out for help. while we may not be able to help you with medical advice, we can support you in many other ways. all of us here understand what it is you are going through as we've all been there before. we want nothing more than to see you succeed in living with diabetes. continue to reach out to us and others for help! you will make some amazing friends here. congratulations on already taking those first steps in gaining control.

good luck to you :o) we are here when you need us.

8

thank you all for the advice.  i do have an endocrinologist so i will definately ask him in the morning about the "outdated" insulin.  if there is something better i would love to get it...but then maybe he has me on the humulin and R because its cheaper ( no insurance here). 

all the advice is great to hear and it all gives me a better feel for what i need to ask the doctor tomorrow morning since it sounds like maybe i need to do more to control my levels than just taking the r at meal times alone.

i am really happy to meet all of you and i am so gratefull for places like this...its helps alot to talk to others who are going through the same thing.

9

I know its pretty normal to stll run on the higher side for a while after getting your dx. At least that is what they told us with my daughter.

10

Ouch, yeah, cost might be why.  Be sure to ask though, there's no telling.  You might also want to look at Canadian pharmacy options (insulin is much cheaper from Canada!) and compare the prices against the cost of your current insulins.  If the prices look worth it, you might want to discuss it with your doctor.

http://www.77canadapharmacy.com/Lantus.php (Lantus, a vial for about $85.)

http://www.77canadapharmacy.com/Novorapid_Insulin.php (Novolog, for about $55 a vial.)

I researched this stuff right after diagnosis because I wondered, what would I do if I ever lose my insurance?!  It's good to know your options.

11

well shoot, i just bought my own meter (cheap walmart brand) and it is testing 20 points lower than my stepfathers!  i have been using his since i got out of the hospital since i didnt have enough money for one.  his is an older one touch ultra meter.  mine didnt come with any control solution, but he never used it on his either.  now i dont know if i have been reporting the right numbers to my endo or not!  that means my insulin doses could be all wrong.  when i tested on mine i was showing at 186 and then i tested on his and it was 210...will have to explain this to my doc tomorrow now..i just hope im not causing my own crashes since i dont know which results are right.

i feel like im on a rollercoaster ride lol.

12

Everyone had great advice here, so I won't try to repeat it. (: But, my one addition was that you want to be careful about "stacking" insulin b/c it could make you go low. Most of us are on newer insulin (novolog, humalog) which last about 3 hours, so we try to not to inject more than once in that three hour time window. For Regular, it's probably different b/c it lasts longer, but I'm not sure how b/c it's been so many years since I was on Reg. But, I'd ask the endo if you're high after injecting for a meal, how soon can inject again to correct a high.

Hang in there! The information is overwhelming now I'm sure, but slowly, you'll catch on. I hope you can find some family and friends to watch your kids and support you in the meantime!

13

Ask the  Juvenile Diabetes Research Foundation  http://www.jdrf.org/    if they have a program for people who can't afford testers they might be able to help get you a proper monitor.  Also check with the manufacturers.