New here! T1 for 35 years

[TurboKH]

Hi.. I thought I'd throw out a little story about myself and see if anyone relates. I take lantus 2x per day and humalog at mealtime using carb counting. My BG numbers are random, 80 to 500, and I mean random. I can change as much as 200 points in an hour, up or down, and when a downward change is occuring I generally feel like I'm low. As a result, I have NO idea if I'm high or low at any given time. This seems worse at some times than others. I've seen 3 local endocrinologists who basically quote to me from their textbooks, stating I need to be between 80 and 110 BG. I'm familiar with the concept of "math", so I realize what's high and what's low, but my body isn't on board with the way insulin works, apparently. Ha!

Anyway, is there anyone out there who can offer any clues as to what's going on? Erratic Insulin Sensitivity, or Insulin Terror is what I'd call it. There must be something else going on that causes all the ups and downs with no predictability.

[Subby]

Yes, I can relate. Many things very similar for many years.

I have no idea if my experience is applicable or useful to you.

I was highly erratic BG on MDI. Sometimes extreme amounts of effort to get better stability (for example, talking a period of a month or so of 20 tests a day, no job, day dedicated to every aspect of D trying to iron things out) - with little progress. Always suspected it was something to do with the insulin delivery/absorption/ something like that. No help from docs who shruged their shoulders or quoted textbooks.

On going to pump, found immediate and profound improvement in insulin action and overall Bg profile stability and health. Even in the early days of not such good pump settings, what appeared to be better insulin action, seemed to allow me to stay even for more than say 6 hours at a time which appeared to have a systemic affect of "calming down" BG trends. On MDI 6 hours stable was virtually impossible for me - I have notices a tendency for highs and lows to bounce (not just things like liver dumps, a more generalised effect) - the waves never settled.

So, improved insulin absorption through infusion seemed a huge element.

2nd big step was programmable basal. Turns out I have a huge curve through the day of basal reqs. I had virtually no chance of getting stability on one or two shots of Lantus. The pump lets you program basal levels by the hour (it uses rapid acting, trickled out). Through the day, the insulin profile that works for me is in big curves, in big dynamics (there is a method for working this out called basal testing). For example I have a huge drop usually about 5 - 6pm when my basal reqs drop by approx 30%. The flat(ish) action of the Lantus was pushing me around severely on a daily basis, again contributing to instability.

1 year down the track of pumping and I have determned that any more than 2 or 3 units delivered immediately (as per injection or pump "instant delivery" option) and I risk a variable insulin action of up to 60 - 80 minutes. No wonder I had such a hard time of it on MDI.

Other thing worth mentioning on the side was immediately felt better without Lantus in the system. In general, with better stability, I went from increasingly fragile and a highly erroded state, physically and mentally, back to a sense of robustness and health.

Gotta run - have a think about this, ask questions. Good luck.

[TurboKH]

Very interesting.... I never thought the pump would be for me, but may be.. Thjanks for your quick reply!

[lorilei]

Hi Karl...welcome to the forums...wish i could help, but i totally get the fluctuating BG...Subby, your point about the basal is very interesting and a recent question of my own as my activity level varies greatly day to day....

[Subby]

Karl, forgot to say that I also found with fluctuating levels that I often felt low when high, often had all sorts of things going on, this seems a common expereince to a greater or lesser degree that big fluctuations cause all sorts of physical sensations. I ofen wondered if it was other things (and indeed things like reactions to types of insulin ,celiacs, lactose intolerance, other allergies, other illnesses, can of course also be the problem/be part of the problem/be none of the problem!) The point is that I'd find it very likely that you'd generally feel better and clearer the more you got your BG stable by whatever means, over a period of time (lets say improvement at 12 hours, more at 3 days, more at 1 week, 2 months, etc etc). Now that my BG's stay mostly below 10 mmol/l (180 mg/dl) rather than up and down with 16/300s and lows, the body re sensitises to normal levels, you get a feeling for what is healthy, and smaller fluctuations affect you more (a curse for feeling sick, but more a blessing for the warning/self correcting facet of this, in my mind).

As for the pump. Go do some independant research. Read some threads. Learn some and let it sit with you a couple of days. These options take time to sink in I find (although usually I get a real "aha! that's the way moment at some time :) )

Lori, I'm up for lots of talk about basal requirements. As you suspect having different activity levels through the day can really change it. At the same time as long as oyu have certain things reasonably constant (sleep, wake) then the first thing is to try and get a handle on the biological rythyms of the body. Then from that base, try and get a handle on different scenarios or "types" of days, and work on ways to deal with them.

[Coppernob]

Karl, I have been diabetic for almost 41 years. I have been on the pump for the last 7 and have been very happy with the results. I feel like I have more control due to being able to tweak my basal rate as needed. I have a minimed 522. Last February I also started on the CGMS - this helps me because I often do not feel lows coming on. I can see what my blood sugar is doing - staying level, rising or falling and how rapidly that is happening. I really like this system. Anyway I hope you are able to get things sorted out and find an endo who can meet your needs. Good luck. :)

[TurboKH]

I manage a group of IT folks for a living, so my day can be just sitting in meetings or actively running around installing computer equipment - no 2 days are the same. I have been eating the same meal for breakfast and lunch, though, for 2 months now in an attempt to reduce a few of the variables in my carb-counting/humalog routine. My breakfast is 26 gms of carb and my lunch is 16. I'm 5'7"-ish and weight about 130. 4-5% body fat. I thought I could take in less carbs and take less humalog, limiting the risk of being too low too fast. Honestly, i don't see where that has done anything but frustrate me more because my BG numbers look like they are created by some sort of random number generator.

Weekends: I have 3 college age kids.. we're active people. My favorite hobby is my cars and bikes, and I spend time in the garage whenever possible. Pretty physical stuff sometimes, and with that I NEVER know what my BG is. 120, 540, 80, 220.. and all of that can happen in the span of several hours. You'd think my meter was bad, but I have 3 and I regularly test with a different one to check accuracy.

I'm going to do some research on a pump. I can't tell you all how much I appreciate your immediate responses to my thread here.. probably the most support I've felt in years. Some of my input here looks like whining and ranting.. thanks for listening. It feels good to have friends who understand what I'm going through.

[Gary_W]

Hello Karl,

Are you absolutely sure your Lantus dose is set correctly? If your basal is off, nothing else makes sense and you can indeed bounce around with erratic blood glucose. Basal testing would make sense if you haven't done so lately.

Next, how are you treating hypos? I used to overdo it, and this causes bad overshoots.

Subby makes a good point about pumping. It's a much nicer way of doing things (I MDI'd for 13 years and have been pumping for 8 months. This way is better). But before you do, getting the above two things looked at will cheer up MDI for you anyway :)

Gary

[Gordonm]

I manage a group of IT folks for a living, so my day can be just sitting in meetings or actively running around installing computer equipment - no 2 days are the same. I have been eating the same meal for breakfast and lunch, though, for 2 months now in an attempt to reduce a few of the variables in my carb-counting/humalog routine. My breakfast is 26 gms of carb and my lunch is 16. I'm 5'7"-ish and weight about 130. 4-5% body fat. I thought I could take in less carbs and take less humalog, limiting the risk of being too low too fast. Honestly, i don't see where that has done anything but frustrate me more because my BG numbers look like they are created by some sort of random number generator.

Weekends: I have 3 college age kids.. we're active people. My favorite hobby is my cars and bikes, and I spend time in the garage whenever possible. Pretty physical stuff sometimes, and with that I NEVER know what my BG is. 120, 540, 80, 220.. and all of that can happen in the span of several hours. You'd think my meter was bad, but I have 3 and I regularly test with a different one to check accuracy.

I'm going to do some research on a pump. I can't tell you all how much I appreciate your immediate responses to my thread here.. probably the most support I've felt in years. Some of my input here looks like whining and ranting.. thanks for listening. It feels good to have friends who understand what I'm going through.

You and I sound very much alike. I have been a type 1 for 34 years now and 2 years ago went on the pump. I work as a sales/service rep so someday are spent driving my car or in meetings other days I am working on machines all day. No 2 days are alike. I ride my (pedal) bike quite often as you can see by my mileage I also have a 72 Vette that I am constantly working on/improving and do some side jobs on cars. My schedule is all over the place. I also have a 15 and 17 year old that take my time.

I never had quite the ups and downs you have but did range from the 40s to 200+. The pump has made it much easier and controllable. I do run a lot of temp basals and change my requirements quite a bit. With the pump it is just a matter of a few buttons. I recently started the CGMS and it has been just that much better to see what my days are like. I still have a few ups and downs but most of the time I rarely go above 150 and stay in the 70 to 120 range. I resisted the pump for years but now kick myself for not doing it earlier.

[lorilei]

I manage a group of IT folks for a living, so my day can be just sitting in meetings or actively running around installing computer equipment - no 2 days are the same. I have been eating the same meal for breakfast and lunch, though, for 2 months now in an attempt to reduce a few of the variables in my carb-counting/humalog routine. My breakfast is 26 gms of carb and my lunch is 16. I'm 5'7"-ish and weight about 130. 4-5% body fat. I thought I could take in less carbs and take less humalog, limiting the risk of being too low too fast. Honestly, i don't see where that has done anything but frustrate me more because my BG numbers look like they are created by some sort of random number generator.

.

again...sorry no advice...but i so understand this...

[TurboKH]

That's a really good question, Gary. I was taking 12u of Lantus at bedtime. At times, it caused me to get pretty low overnight, so I actually had to eat something before going to bed. Lantus supposedly has no pronounced peak, but I was having to pump up (no pun intended) my evening BG so I wouldn't bottom out over night. At one point, I would shoot for a 300 in the PM so I could wake up with a 110. Crazy! I decided to split the Lantus dosage, now 2x per day of 8 units each. I don't get low overnight as often, but I still need a small snack of 20 carbs before I go to sleep.

I really need a professional to help me more than just refilling prescriptions. When I go to the endo (and I've only seen the actual doctor twice, it's always the NP), she tels me my morning BG is too high. I'm pretty good at math, actually, I figured that out on my own, but that's where the help seems to stop. Sorry.. more whining...

[Gary_W]

That's a really good question, Gary. I was taking 12u of Lantus at bedtime. At times, it caused me to get pretty low overnight, so I actually had to eat something before going to bed. Lantus supposedly has no pronounced peak, but I was having to pump up (no pun intended) my evening BG so I wouldn't bottom out over night. At one point, I would shoot for a 300 in the PM so I could wake up with a 110. Crazy! I decided to split the Lantus dosage, now 2x per day of 8 units each. I don't get low overnight as often, but I still need a small snack of 20 carbs before I go to sleep.

I really need a professional to help me more than just refilling prescriptions. When I go to the endo (and I've only seen the actual doctor twice, it's always the NP), she tels me my morning BG is too high. I'm pretty good at math, actually, I figured that out on my own, but that's where the help seems to stop. Sorry.. more whining...

Aha. You may well be suffering from a most common diabetes related complaint which I had myself for years. It is known as 'TMFL'.

The T stands for Too
The M stands for Much
The L stands for Lantus.
I'll leave the F to you.

If you are having to eat before bed to stave off night-time lows then there are two possibilities. One is TMFL. The other is that your basal rate slows down to a silly level during the early part of the night and then ramps up in the morning. If Lantus is working correctly, in an ideal world you should be able to go to bed with a BG of 100 and wake up between 90 and 110. With no night-time snack.

The standard Doctor's answer to a high BG in the morning is to up the evening Lantus but that's because the average Doctor's undertanding of basal rates is not much better than that of a weasel. For instance the rise in Lantus dose may cause a night hypo that you may not wake up from. Your high morning BG may be due to a liver dump which has had the good sense to save your life. Been there.

Do an overnight basal test ASAP; ask if you don't know how. Post back with your results. You can improve overnight basal response by either putting in the correct amount of Lantus, moving when you do the shots, considering a different basal insulin to cover your basal needs more accurately or pumping. Can't think of another way :)

Gary

[mortis505]

Hello TurboKH and welcome to DF! As you are learning, many people don't have a flat profile regarding basal amounts. I would discuss with your endo the need for a pump and possibly, if insurance will cover it, CGMS. There are several different types of pumps and I suggest doing some homework on it.

Take a look at this thread, http://www.diabetesforums.com/forum/pumping-insulin/13323-pump-comparisons-all-about.html for starters and then contact the pump companies directly. Get info.

Good luck and visit often

[TurboKH]

TMLF.. got it. I'm pretty sure I know what fits for the "F" part. Nice!

So how do I do a basal test? These BGs are so random, some times I think there's Hunalog pooling and coming back to get me later than it's supposed to. Is that possible? How can I tell which insulin is doing what?

Again, I can't say how much I appreciate the input here. I wish I would have stumbled upon this forum long ago.

[It Ain't Over]

Turbo, I was in about the same boat as you find yourself in now back a few years ago. That MDI routine is tough.
Best advice I got from an MD, after I explained the severe up and downs he said it was his impression that I was taking too much (Lente) insulin. I had been thinking to add more because of the extreme highs I would see. After working down the basal doses those hi's and lo's began to ease a lot. Of course a few years later I was put on an insulin pump, which made a much bigger difference.
Also remember after 35 years your injection sites are all scarred up. That will make for a few more ups and downs.

[JJM335]

Turbo:

I won't add anything to what Gary and Subby have posted, they seem to have covered all of the main points. If you are taking 2 x 8 U of Lantus daily, I would guess it is unlikely that your Lantus dose is wildly too ****ing much. Since you are tending to go hypo overnight and also have wild swings to high Bg's you probably have a big variation in your basal requirements that you will not be able to accomodate with any long-acting insulin.

Think about a pump.

Joel

[xMenace]

Welcome

Hi.. I thought I'd throw out a little story about myself and see if anyone relates. I take lantus 2x per day and humalog at mealtime using carb counting. My BG numbers are random, 80 to 500, and I mean random. I can change as much as 200 points in an hour, up or down, and when a downward change is occuring I generally feel like I'm low. As a result, I have NO idea if I'm high or low at any given time. This seems worse at some times than others. I've seen 3 local endocrinologists who basically quote to me from their textbooks, stating I need to be between 80 and 110 BG. I'm familiar with the concept of "math", so I realize what's high and what's low, but my body isn't on board with the way insulin works, apparently. Ha!

Anyway, is there anyone out there who can offer any clues as to what's going on? Erratic Insulin Sensitivity, or Insulin Terror is what I'd call it. There must be something else going on that causes all the ups and downs with no predictability.

I haven't read through this thread at all, so sorry for repitition.

You sound exactly like me before pumping. Hypo to hyper and back again constantly all day and night, or so it seemed. It's very discouraging being out of control like that, especially with my looming eye problems.

Pumping has pretty well cured me of the HH Rollercoaster, but it's not easy. There's some fundamentals you should understand whether you pump or not. I do believe MDIers can tame it.

- Doctors and DE's for the most part are lousy at managing sugars. They take their reems of experience and GUESS on your dosages. They might be close, but they are still guesses.

- Basal needs are not flat. Insulin makers and most doctors will tell you theya re because sugar release by the liver is fairly constant. Apparently it's been proven. What they fail to account for is insulin resistance. Oh yea, that dawn phenomenon thingy. They treat it as a seperate entity when it's actually part of your basal patterns.

- Each of us has unique basal patterns. They are like fingerprints. It is up to us to find out what that pattern is.

- Our basal pattern follows is pretty consistant day after day in both intensity and shape.

- One must isolate variables as much as possible to gain a deep understanding of their behavior. Basal testing for example eliminates all food and bolus insulin. Meal profiling or the setting of bolus ratios relies on established and controlled basal settings.

There is very little information about basal rate testing for MDIs. Generally they go on pumps to fix things. I can send you some info when you are ready, but I can't post it here.

My A1C dropped from 7.3% down to a low of 5.9%.

[Gary_W]

TMLF.. got it. I'm pretty sure I know what fits for the "F" part. Nice!

So how do I do a basal test? These BGs are so random, some times I think there's Hunalog pooling and coming back to get me later than it's supposed to. Is that possible? How can I tell which insulin is doing what?

Again, I can't say how much I appreciate the input here. I wish I would have stumbled upon this forum long ago.

There's lots of good info on this if you do a search here. But to get you going, think on the following.

Your Humalog is only supposed to cover food and should last a maximum of 5 hours before it's all gone. Your Lantus is supposed to cover what your liver is doing, NOT cover food.

Soooo.... first test to do is an overnight basal test. You need to ensure that you have eaten early in the evening because you want NO food and NO HUMALOG to screw up the results. So do it on an evening where you've eaten around 5pm if you can. After dinner, you eat and drink nothing except water. You inject no more Humalog insulin. You do your regular Lantus dose at your regular time.

Test your BG before bed (say 11pm or midnight). Then you need to set an alarm and test every couple of hours throughout the night. What you are looking for is changes one way or the other in your BG.

Next morning, you skip breakfast and take no Humalog. Keep testing up until lunchtime, when you can finally eat :)

If your basal rate is set correctly, you should be pretty much the same BG reading at Midnight as you are at Mid-day the next day, and it should not really rise or fall a great deal during that period. This is tricky to achieve on Lantus, and it's really a lot to do with the way your body works as to how close you'll get.

If you find you go hypo at any point, treat the hypo and figure you've got too much Lantus going in. Reduce your dose by a unit or two and see how that treats you. When you can face it again, do another basal test. Repeat until you're happy.

You can do this method to test othe rperiods of the day. For instance, eat a regular breakfast nice and early but then skip lunch. Blood test all afternoon every hour or so and see where things go. Again, if you basal needs are catered for correctly you should neither rise nor fall.

Your difficulty comes if, during the night, your BG initially drops a lot and then rises a lot in the AM. This is pretty common. I never got a handle on managing DP with Lantus, though some folks manage and they'd be better to tell you how than I would. It's pretty straightforward on a pump and there are others here that pop in a bit of the older NPH to cope with DP. As John (XMenace) rightly says above, basal needs are not flat. Lantus makes a big thing about being flat but what happens when a flat profile meets a bumpy basal need? Problems.

Good luck :)