In trouble!

Type 1 and LADA
1

Hello all I'm feeling beat up and defeated lately. Burn out from the never ending life of being diabetic. Honestly sitting here crying as I just got back from the Dr from my latest round of blood work. HgA1c 7.1. Like a child being taken to the principals office. I just got the talking to about what is going on with me. Why have I've gone from A1C of 6.0 only 6 month ago to a 7.1. He went on about renal failure and pretty much gave me ■■■■.
I know he is trying to be proactive as he said the BG trend is not good and he wants to see if we can get it better. The higher numbers a direct result of the last 6 months of not testing so much ( yeah only 8 times a day sometimes 10 ) and really cheating occasionally. But the last 6 months I've tried not to be obsessive with my control of the big D. I was just tired of all of it so the last 6 months have been the best (happiest) I've had in many years just trying to let go of the non stop control that it takes to maintain a healthy bg . But the end result is horrible. I've tried to analyze things, is it stress, hormones, or has my honeymoon ended and now have zero tolerance for carbs. I know what it takes to keep that A1c down,being OBSESSIVE with little room for carbs. Seems I always miscalculate my carbs intake more often than not. I can do ok if I keep the carbs to under 30g a meal. But REALLY is that real life. I'm not asking to eat cake and pie with every meal. I just want that bowl of cereal or some rice/potatoes with my meal. Is it too much to try and eat normal and just dose correctly. Maybe that is all that I'm doing wrong is miscalculating my bolus. I know that there are lots of low carb options that some of the members have done. Is it just to minimize the amount of insulin they take? I know eating fewer carb seems to work for many. But who out there can advise me at with in reason how do I still enjoy my family dinner or any meal for that matter without taking away all that I love? is it time for that pump?
Currently I'm taking 18 U of levemer at bed, and 5- 8 units at breakfast and dinner. I rarely dose a lunch as it is my very low carb meal of the day with salad and meat of some sort. TDD approx 30 units max would be 40U. I'm 5.7 - 145lb, 43 years old.
Just looking for some advice.

thank you Laura

2

Are you with an endo or a primary care physician? First things first, I have been Type 1 for 41 years. When I first was diagnosed by a PCP (there were no BGM's) I was told to monitor my urine for ketones!! No ketones meant I was OK. When I finally connected with my endo (same guy for the last 26 years) my A1c was 12.9%. My quarterly tests run from 6.9 rarely to 7.2 more frequently and we both consider that pretty good control. I think you will probably get better responses than this one but this is the right place to look for help.

Something like 80+% of people with Type 1 get depressed. So do NOT beat yourself up when you feel down. I did it for so many years that depression became a habit. When I finally got that taken care of, it was wonderful.

Your doctor may think he is helping but it sounds like he is taking a 100% wrong approach. Education and discussion are ok - scoldings aren't. I used to teach pre-med students in graduate school. I better stop before I go off on the breed.

Your doctor may see you for 15 minutes at a time, 4 times a year. You have to live your own life the other 8759 hours every year.

3

Yes, beechbeard you are quite right about having to live with this the whole time. I wasn't aware that 80% of D's experience depression, that is far higher than I thought.
I eat what some people would consider a lot, I love bread and I just can't see the point in being miserable without it. I work my insulin around it. I do try not to go over 30g with each meal. This can be extremely difficult at times, it is hard. It's the price I'm willing to pay though to avoid complications. After reading other people's stories here on this site, it is obvious that the lower the A1c the better, that is around 5%. I understand fully what you mean and I know at times it is harder than others, but we can do it.
Alot of our success with bg comes from trial and error. You can do it. Just like me, its the motivation to keep going that is tough.

4

I think that dr. is horrid. My CDE used to be like that so I gave him away and am much, much happier. You don't need telling off, you need a helpful analysis of how you can improve, I simply don't understand the mentality of these medical people who think telling off adults is the answer.

5

I think that if you're running higher, like all the time, it means not enough basal. If it's just high after meals or stringing up in a prolonged manner after post-meal highs, probably the bolus ratio can go up. If it's both, it's both. Maybe look at the specifics of the highs and try to fix one number at a time? I eat pretty normally, maybe a bit less than rx'ed by a dietitian but not super low carb. I've tested and adjusted since I got a pump and it's worked. I think a pump is easier to manage this on b/c it keeps track of things in a way more detail than I ever did on my own.

Another "trick" is that I will eat lest carbs to "test" rates and ratios and make the changes on smaller, more consistent amounts of carbs, during the week and then splurging on the weekends. I feel relatively normal (ha ha...) foodwise and enjoy the human urge to celebrate and my#s are ok. It's very hard but if the doc made you feel badly about your results and, particularly, if he didn't suggest changes to improve them, I'd say maybe try to find a nicer doc? I look at docs "glamour pics" online first. When I was heavier, I'd look for heavy ones but these days I try to find docs who look nice, not "hot" but just people who look kind. Frankly, I aim for minority docs b/c I think they are likely to be underselected by patients in the suburbs and will be easier to get appointments with. In those cases when I've needed them, this has proven to be the case and, when something comes up and I have to switch, I can usually get right in. Maybe that's nuts but I figure that I want a doc who's cool in a certain way. I like my GP a lot and he's hilarious and will talk about food a lot if you get him going, which I like too.

6

Thanks for the input, since this afternoons pity party I have calmed down a little. My doc knows he can not help, he has referred me back to the intern specialist who only 6 months ago announced I was doing so well that he did not need to see me for a year. unless I needed him. It is just routine for the my regular GP to call me in when test results require review. They do keep good track of it all. I know my specialist will be there to help he is really nice. My GP is too just not so well received today. That beat yourself up thing we do when we do not have good control and we know it ! It is a balance thing and perhaps the push I need to say hey this sucks. I can have decent control with little carbs, and eating smaller meals. But that is not real life and that obsessive control of eating is what I hate the most. So maybe the pump is something that will help me be more normal.... or closer to normal. I still cringe at the thought of being plugged in I just do not want to be dissapointed at all the money spent on a pump to have poor results. I also hate the recording of everything I eat and the documenting of it all. Even with the handy Iphone apps. But I guess the time has come to once again become a self science project. I just want to be in that place of a veteran diabetic that has adjusted to ( for the most part ) where it a becomes second nature to make the adjustments and see the trends. I am still looking for answers and input, I do have the medical team needed to help too, but it is everyone on this website that has the personal experience with living with D. I know some of you have gone through this path that I now travel, help me find my way. Pump users tell me why I should go for it.... I need some convincing. I am scared.

7

I am confused ...Do I understand ...Doc is a GP ?? Lots of PWD wish their Doc would be as blunt as yours and NOT be happy with A1C of 7.1 ; on the other hand most of us need the guidance of the Diabetes Clinic Staff /and Specialist.
Being pro-active as a patient, meaning finger poking and not being reluctant to do something with the results is up to you , not the Doc, not the Clinic Staff , not the Specialist ( Internist /Endo ) ...Becoming a Insulin pumper will not help lowering your A1C , unless you decide to become pro-active and poke more and use the results of the tests . A pump is a tool , you are the driver ...for some it works better , for some folks it does not help with the hassles and cost. Talk to several CDE pump trainers face to face and ask for advise .Hang in is my advice (next year 30 years with diabetes ) ...hugs

8

I dunno about talking to CDE trainers as I didn't really listen to medical providers. My biggest "push" to get a pump came from my friend's wife. He was like "you should meet her and talk about it." So we did (over Mexican food...) and, like the next day, I was like "I want one!" called my doc (GP@ the time...), he said "you need an endo" so off I went and probably was pumping like 40 or 50 days later. The first day I had it, I spent a lot of time in the meeting/ training going "hmmm, 2 or 3 tacos?" I had 3 and was at like 85 two hours after I ate them and was sold. The lugging it around took a couple of days to get used to but I don't even notice it most of the time now as it's become such a part of my routine.

9

The Levemir is advertised as a 24 hour insulin. So much is true. The problem is that the insulin activity is not distributed evenly over 24 hours. With your current one shot pattern you will have hours with higher insulin sensitivity in contrast to hours with reduced sensitivity. This makes it very hard to determine I:C factors in general.

Thus I would recommend as a first step to split the 18 units of Levemir into two shots every 12 hours. The two shots will combine to one 24 hours profile with a more evenly distributed activity of basal insulin. The first day of this transition will be rough but after the seconds shot at night things will level out. After the split you likely will have to fine tune the Levemir dosage. Very likely you will end with 12/12 or similar. The right basal dosage is the fundament of your control. If your basal needs are not sufficiently covered you will have not chance to compensate that otherwise.

10

All insulins have a time/activity curve that is not flat. For a basal (particularly the older formulations) how much it "helps" at one meal may not be the same at the next. So 20 g of carbs at a meal where the basal is at a higher level of activity will require a lower bolus than at a meal when the basal activity is lower. For MDI users, the flatter the basal curve, the easier it is to calculate an accurate bolus. This is particularly true if you have a job where you meal times and amounts may vary e.g. business traveler.

11

Without glucose/carbs our body can not operate. We digest carbs at certain times of the day. Excessive carbs from our meals will be partially deposited in the stores of the liver. The liver then acts as our source of glucose for the rest of the day. For this constant stream of glucose coming from the liver the healthy beta cells would create micro-dosages of insulin. In insulin dependend diabetics the micro-dosages need to be replaced by deposits of basal insulin or by the basal program of the pump. The basal is expected to match exactly the glucose coming from the liver. Not more not less. This means it MUST be possible to skip ALL meals in one day WITHOUT getting high or low blood glucose. The basal insulin alone is expected to keep you steady. This is usually tested with a basal rate test where you do fasting for 1/2 days (one day for the first half and the second day for the second half). This test is necessary to find out if your basal needs are truely covered. It is very important that the basal is really covering 24 hours. Otherwise you will have unevenly distributed I:C ratios and uneven insulin sensitivities. To really make sure the basal is correct I always recommend to split the basal. I even would recommend to split Lantus for this reason.

In contrast the bolus insulin is just for the meal. It should exactly match the glucose coming from the digested carbs. I would be very unfavourable if your bolus insulin would in part needed to cover the stream from the liver too. This would mean you could never skip a meal without being punished with higher blood glucose afterwards. This is why it is so important to seperate the effects of bolus and basal insulin.

In my Glucosurfer project I have seen many glucose profiles in which people frantically try to fight high blood glucose with bolus injections. So they correct several times a day although two injections of the right dosage of basal insulin would have totally solved their problem. It is a tragedy sometimes.

12

An A1C of 7.1 is pretty darn good for a T1! If you were recently diagnosed, it's likely that you are coming out of a period where you were still producing some insulin. THIS IS NOT YOU FAULT. A doctor should work with you (not lecture you) to help you solve this issue. He/she should recognize that it's the disease, not you, that is causing this situation. An A1c of 7.1 is NOT going to cause you to go into renal failure. Those of us diagnosed back in the dark ages frequently had A1Cs in the double digits. All the time. And many of us are still alive and healthy. Yes, some people do develop complications, but that can take years.

Here's what I would advise:

1. Fire this doctor and get a new one. It sounds like you're seeing a GP and not an endo. If you can get in to see an endo, see one. Most endos understand that dealing with T1 is tricky. My endo is quite pleased if my A1C is in the low 7s. When I aim for any lower, I have bad hypos. It's not worth the risk. My BGs are good for the most part, but this is a fickle disease. Being a woman makes it even harder because we have monthly hormonal fluctuations that wreak havoc on BGs.

2. Consider a pump. A pump is NOT a magical device that will make your diabetes go away. What it can do is be a tool for better control. Some folks find that shots work better, because a pump gives them too much flexibility. For me, having a pump has been invaluable because it gives me the ability to find tune my basal rates throughout the day. Learn everything you can about pumping in general and about the available pumps on the market. Watch YouTube videos of people operating their pumps and changing out infusion sites. Read Pumping Insulin by John Walsh (a new edition just came out). Immerse yourself in learning about pumping so that YOU can decide if pumping is the right decision for you. In the meantime, keep careful logs of your BGs and insulin dosages (you will need three months' worth to set up your pump). A pump can help you conquer things like eating a big dinner or grazing at a buffet, but it's a learning curve. You need to prepare yourself for that. It took me a solid year before I would say I was completely comfortable with my pump. Honestly, I don't think I could live without it at this point.

3. Remember that you can't be perfect. We all miscalculate carbs and we all forget insulin from time to time. Anyone who expects perfection out of you (whether it's a doctor or yourself) is plain old wrong.


4. Look at your numbers and learn from them. Find a way to study your information (BG readings, carbs, insulin, etc) that helps you understand what is going on. One thing I LOVE about my pump is the data it gives me. I use the Minimed pump and it uploads all my data to Carelink. I can slice and dice the data in a number of ways, and this has helped me identify patterns I didn't know existed. For example, I discovered that I was consistently running higher in the middle of the day. This led to some significant basal increases during the mid part of my day, which subsequently brought down my A1C.

5. Get a CGM. If you suspect you're having highs but not catching them, consider a continuous glucose monitor (CGM). This might help you collect more data and identify times of the day that you're having highs but not catching them.

6. Say what you know. You know your body and life better than anyone, and a physician should NEVER chastise you or give you crap for such a small thing without taking into consideration other factors in your life. A large part of managing T1D is finding balance. You cannot let it consume you, and you have to find a way to live with it and still enjoy life. It's a quality vs quantity thing. I have really tried to rid myself of the guilt associated with letting my BG run a little higher because I want to have a nice meal out with friends. Or tossing caution to the wind and SWAGging for something for which I have no idea of the carb count. You've gotta relax sometimes. If that means my A1C is 0.2 points higher, I really don't care. What matters is 95% of the time I do everything right. But I'm not gonna lose my lunch over the 5% of the time when I get a little lax. Otherwise, I'd be insane.

13

Crashette,

Read Using Insulin by John Walsh. It, as well as Holgers more than able explanation, will help you understand how insulin works in your body. And yes, You can do this without becoming obsessive. Take it one step at a time.

God bless,
Brunetta

14

You have gotten a lot of good advice and right now I'll not add to that (although I might later). But I will say shame on your doctor, you should leave an office visit feeling empowered to do something good. Instead, you left with the exact opposite.

I'd encourage you to not feel that way. You can make changes to improve your control and meet your health goals. It doesn't have to involve losing all the pleasures and happiness in your life. And we will never measure you by a number and you should never measure yourself that way either. You can do this.

15

@ AC ...I have a great rapport with my pump trainer( since 2001 ) and still do ...everyone in my community and beyond , who deals with her have the same observation .There are a lot of insulin pumpers here of all ages .And I know a person in the area where Crashette is from ( Abbotsford ,BC ) , who is a trainer , Mother of a pumper and a pumper herself ...I respect her opinions as well .All I am suggesting to talk to some of these.

16

I appreciate your advice, your suggesting a split dose, currently I take the 18 U at 9:30 pm. If I was to make a change do I just go with 9 u in the AM and 9 in the pm? I have previously gotten up at about 3 am and tested just fine. When you mention the 1/2 day test are you going from noon to midnight or 6am - 6pm.

17

Thanks again for all the advice. Today was a better day, sometimes a down day is what we all need to get up and start at it again. Burn out is what I was suffering from hence the higher numbers add that to perhaps a honeymoon ending equals a 7.1. I have an appointment with my specialist soon. And well even though my GP was harsh on me, I think he knows the past 3 years my numbers have been reasonable so the higher blood work was of concern to him. I am reduced to tears quickly, which kind of sucks... I really hate getting in trouble. I guess I should thank my father for causing me to be that way ! uggh. In the mean time I am doing my best to carb count and continue testing 8-10 times a day. I will get the specialist to run some additional blood work to see if the honeymoon is over. And of course see if he has any advice on getting the numbers down plus discuss the option of a pump. It's not a rush to get to that point yet, 7.1 as a type 1 is not to far out, I will see if I can get improvements in the next few months, if not and numbers continue to climb despite every effort I make then I guess the pump is a natural way to go. Just for the record I'm 3 1/2 years into being a lada. The first 3 years I did pretty well with reasonable A1c results, but it did come with a lot of discipline, blood testing and obsessive behavior. That happy balance like many of you have mentioned is what I'm looking for.
I'm also pretty sure a lot of you out there have gone through the same ups and downs, my guess is the first up to 5th years are the roughest ones for some diabetics. I am so grateful for all who cared to answer, I will still say it sucks to be diabetic but like the rest of you I will pick up my chin and carry on the best that I can in managing this BIG D.

18

Levemir should be taken in split doses. It doesn't last 24 hours. Lantus doesn't either, though it claims to. You can start by taking two equal doses, though they don't necessarily have to be equal. From your 3 AM testing & if your fasting is good, you may need more than 9 units before bed. If you're eating before bed, that's another story.

Midnight to morning is already fasting, of course, so that's something you're already testing unless you eat close to midnight. People use different methods for bolus testing. You can skip breakfast & lunch one day. Lunch & dinner another day. I've done it by not eating breakfast, next day not eating lunch & a third day passing on dinner. Don't bolus test if you're exercising, super stressed or hormonal.

19

Mybusted pancreas, I absoutely love your advice to Crashette. Your statement What matters is 95% of the time I do everything right. But I'm not gonna lose my lunch over the 5% of the time when I get a little lax. Otherwise, I'd be insane. My percentages in living with type 1 are not as high as 95% and 5% ; lets say 85 and 15-lol, but this is how I LIVE with type one. No doctor should chastise her when she is giving it her all and the possible end of the honeymoon period is impacting her. Does he even know about a diabetic honeymoon period? I agree, she should FIRE him. My own endo of 10 years told me, just this past spring, that even though he has worked with type one and type two diabetics for 20 years; he is just beginnng to realize how difficult the tight-rope balance of managing insulin, diet and exercise is for type ones, how very diffcult it is. He never fusses at me or chastises me when my a1c goes up a bit. He understands how stress and just life and being human for a spell ( ie. a bit of burn-out) can cause such variations. We discuss the Carelink data when I bring it in, make changs as he suggests but does not demand, and part as happy campers EVERY time. Crashette, You are smart and active and are doing great at seeking your own information and acting on it. Stay away( at least emotionally distance yourself) from the mean doc and keep loving yourself!!

God bless,
Brunetta

20
The first 3 years I did pretty well with reasonable A1c results, but it did come with a lot of discipline, blood testing and obsessive behavior.

I am afraid this is what control of T1 diabetes is. You need the same dilligence to use the features of the pump for your benefit. To me your mental setting is much more important than the tools you might use. MDI and even the Pump offer a potential space to explore. It is up to you to explore and utilize their offerings. The split I have mentioned is just one way to explore the potential of MDI. There are other bolus and basal insulins to explore too. It just takes a helping medical team to let you try different approaches to find the one that works for you.

I also wonder why your medical team has not mentioned the hormonal influence of your menstrual cycle!?