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Old 12-27-2006, 09:54 PM   #1
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roadfamily6now HB User
when nothing works

what do you do when changing diet, exercise and adjusting your meds just aren't working???

12 long years we have all be struggling with DH's type 1 diabetes. Still, we cannot keep the levels consistant and he is overly frustrated.

UGH, just venting. He is having a really hard week and today his A1C came back at 11.7 and also his cholesterol is high along with elevated blood pressure. Poor guy is only 34.

 
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Old 12-27-2006, 11:55 PM   #2
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Re: when nothing works

Exercise won't do much for sugar levels that high.... he NEEDS to watch diet and adjust meds more competently.

Does he know how to "count" carbs? If not, he needs to learn. What is his "carb ratio" and daily basal dose? 11.7 is a really bad number, let's please talk and try to come up with some ideas to get him doing better. There's some REALLY SMART T1s on this board who can offer some helpful ideas... blondie2061h, SamQKitty, Coravh, and Mark1e come to mind immediately.

It would be an awful shame to die young from a controllable disease when someone loves you. Is he testing enough?

 
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Old 12-29-2006, 03:30 AM   #3
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Re: when nothing works

yes, DH tests at least 10 times a day some days more. He does Lantus daily and Humalog for meals. We do watch carbs and I think you were asking how many cabs/per unit of insulin? We talked to a T1 dietician a few years back who said it looks like he was a 4 carb/1 unit? Does that make since? or it takes 10 units to bring blood sugar levels down 100points. Of course that was 4+ years ago. We have seen a dietician here since then but he was lame and offered no advice.
I think now days is it more like 12 -15 units to bring the levels down 100 points.

So, now DH sees a family practice NP and she suggested uping his lantus from 38 to 50 (slowly).
He also is trying to move his Lantus time from before bed to noon. Lately he was waking up with blood sugar levels at 70-50! which really freak him out.
So he wants to move that dose to afternoon and see if it helps his morning levels not to be so low.

One HUGE problem we have is his work schedule. He never works the same hours and never does the same thing each day. So, days he is walking a lot his blood sugar levels will be better then the days he is stationary. He really cannot get another job that pays what he is making now that will be more stable hours and activity level. For him is it frustrating. I know there are thousands of T1's who live hectic lives and are just fine but it does not seem to work for us.

Counting carbs is hard. I would LOVE some more advice about all that. We have a hard time doing it daily. We start off with the best intentions but fizzle out. It is hard with 6 people you are cooking for. I dont want to be a short order cook and have to prepare 3+ meals to make sure everyone will eat something. (kids are at that picky stage)

What about the Glycemic Index and Carbs?? I know that some carbs are good, some are terrible. So do you combine the good carbs into your meals and still count them like regular carbs? How does that work?

We are trying to locate a local Internal Medicine guy here but not a single one will accept our insurance and to top it all off they only accept clients on a case by case basis. What a Pain in the arse that is! UGH!

What about a diet plan like a modified Atkins that really limits carbs? Would something like that work? DH hates vegies so adding Vegies to his diet is like forcing a child to eat brussel sprouts! We are trying, we really are.

Thanks for your help!

 
Old 12-29-2006, 04:24 PM   #4
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Cool Re: Good Info!

Thanks for a very informative post! As you expect, I'll be saying some things which AREN'T "congrats, you're doing great" --- because, of course, he's not. Some changes are obviously needed. I *will* say "congrats for confronting the problem, you're doing great to ask for help. I hope Cora, Blondie, and Ruth chime in with other advice.

I'm not a Dr., although I have lots of experience as a pt. I AM NOT QUALIFIED to give medical advice. As a pt., here's some of my ideas about what you just said:

Quote:
Originally Posted by roadfamily6now
yes, DH tests at least 10 times a day some days more. He does Lantus daily and Humalog for meals. We do watch carbs and I think you were asking how many cabs/per unit of insulin? We talked to a T1 dietician a few years back who said it looks like he was a 4 carb/1 unit? Does that make sense?
It makes sense, but it's a really unusual number. Most T1s, IIRC, are in the range of 8-15 grams of Carb per unit of insulin, so he's shooting more than twice as much as most of us.

Quote:
Originally Posted by roadfamily6now
I think now days is it more like 12 -15 units to bring the levels down 100 points.
That's also a high number, I need only 4 units per 100 points. But this ratio is very dependent on body weight, is he extremely heavy? I weigh 200 lbs.

The other thing which COULD be happening is, he might have Type-2 ("insulin resistance") as well as T1. We T1s can develop T2 as easily as anyone else, although our ongoing insulin therapy tends to mask it.

- - - - -
If he's already having lows, MORE lantus doesn't seem likely to help. His idea of moving the time might help make it better, or might make it worse. He could also try splitting his Lantus into two daily doses, that would even it out a lot.

But if he NEEDS uneven doses, like I do, he'll need a pump. I need to have very low doses midnight to 4 AM but almost 3x as much per hour from 5 AM to 9 AM. Lantus can't do that, the only way to do it without a pump is to wake up every dang morning at 3 AM and do a shot in the middle of my sleeping night.

Pump is far more tunable. And with his changing schedule, you can program pumps for different "daily programs" to match Graveyard shift versus Day versus Early Night.

*HE* needs to change is regimen on walking versus non-walking days. I'd do extra Humalog shots on non-walking days, but he could handle it by eating more on walking days. With a pump, he could just dial in a long-term adjustment such as "do only 70% of my normal dose for the next 6 hours". But with shots, it's gonna take some more difficult calculating, sorry.

Glycemic index is about the "speed" of digestion, not the amount of carbs. All carbs except for fiber count the same. (Fiber doesn't count at all.)

It sounds like you both understand carb counting just fine, but are failing to count successfully. Maybe he isn't watching his portion sizes, you and he need to be VERY PRECISE in estimating food. Or, your cooking methods are inconsistent. One way or another, you need to get a handle on the carb intake quantities-- you can't measure the right amount of insulin to "cover" for the food unless you know how much food you're covering!

Fewer carbs (Atkins-like) probably *could* reduce the tight-rope balancing act between high carbs and high insulin doses which he does now. And the Cardiovascular risk of eating more fat, if done successfully, is probably much less bad than the horrible bG levels which he has now.

There are books about carb counting: Buy one, and use it.

Maybe you cook for the kids, and he fends for himself? If he comes up with a couple of quick easy meals with KNOWN carb content, he might find that living with more stable bGs is really enjoyable-- even at the cost of boring meals. Heck, anyone can throw a steak in the pan and flip it, eat EXACTLY one or EXACTLY two slices of toast with it. (Or a beer.) Just an idea. I can remember feeling really lousy when my bGs were too high, he must be having an awful time.

Since he's having lows at night on Lantus, MAYBE the problem is mostly insufficient insulin for the food he eats. Whenever he makes a bad guess, he should make a little mental note of how that guess was wrong, and try to adjust for it. I would attack the frequent and ongoing high bG *FIRST*, and go after diet changes *LATER*. But if you'd rather try low-carb, go ahead-- just remember to really do it and cut out the carbs, not use it as an excuse to eat more steaks while still filling up on beer, pretzels, and chips.

I hope this gives you both something useful to chew on. Although 10 tests is a pretty good number of tests, he's still running really high most of the time. Either he's not dealing with the 'high' results aggressively enough, or he's not testing at good times. Frankly, I'd do MORE tests until it's more under control-- 15, 20, whatever it takes.

Heck, I do almost 300 tests a day. But I cheat, nearly of of them are painless and automatic. Now sitting at 119 and wondering whether to add 1/4 of a single unit to make it PERFECT.... Naw, 119 is really good enough for me.

 
Old 12-30-2006, 07:33 AM   #5
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Cora1003 HB UserCora1003 HB UserCora1003 HB UserCora1003 HB UserCora1003 HB UserCora1003 HB UserCora1003 HB UserCora1003 HB UserCora1003 HB UserCora1003 HB UserCora1003 HB User
Re: Good Info!

WooHoo Rick. You covered most of the bases for me.

I do have one thing to add though (don't I always?). Sometimes things seem so overwhelming and it sounds to me a bit like you are trying to fix everything all at once. Every once in a while things fall apart on me and I fix them by working on one aspect at a time. Usually I start by trying to get my fasting level down. That means adjusting insulins, and what I eat and when the night before. Once I have that down pat, I work on the 2 hours post brekkie test. That means working out what I like to eat for breakfast and figuring out exactly what my carb:insulin ratio is for those foods and at that time of day. Remember, that your ratios are not necessarily the same for all foods and can also change depending on the time of day. I know it is a lot of work, but it you take it a bit at a time you can get control of everything. Once the morning is working well, move on to fixing the later portions of the day. I have always found the "one bit at a time" approach easier to manage.

I just realized I wanted to add one more thing. He sounds very insulin resisitant and I was wondering if anyone had ever thought of putting him on some oral medications as well. I am very insulin sensetive (one unit of insulin brings me down 72 points) but I know that some people are the opposite. Many folks on insulin these days are also taking oral meds and that helps a great deal by increasing their insulin sensitivity and consequently they become a bit easier to manage.

Good luck to you both and please keep us posted.

Cora
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Old 12-30-2006, 09:10 AM   #6
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Re: Good Info!

Well Rick, it looks like you were waiting for me to chime in, so I will, but you did an excellent job answering their questions, so a lot of what I am going to say falls into the "I agree" heading.

I agree you need to learn to carb count. Not carb counting is like expecting a gallon of gas to get you 40 miles one day and expecting it to get you 100 miles the next. It's not going to work. There are so many variables in what you do and eat everyday. I know in another post you mentioned a desire to go with a pump. Carb counting was one of the first things I had to learn prior to starting my pump. A nutritionist can probably help you with it. Most of carb counting can be done off food labels, the rest can be done with a database, like calorieking.com. Serving size is an important thing. I would stick with your usual humalog doses for awhile, and just log everything, then seeing how many grams of carb he is eating when the dose works should give you an indicator of what his carb ratio is. I suspect this is where the CDE got 1:4 from.

An a1c of 11.1 pretty much always suggests not enough insulin. I agree with the NP who said you need to increase the Lantus dose. But I wouldn't go into that with a set dose in mind. I would start with the 38 and add 2 units every 3 days he doesn't wake up below 100 fasting. But that's just my THOUGHTS you need to go with what your diabetes team wants to do.

T1 patients often have a 50:50 ratio of basal and bolus needs, so for every unit of Lantus he takes, most people would require another 1 unit of humalog at some point in the day. This has a ton of variables, like how high carb the diet is, though. Most days mine is pretty much right on, but I will obviously need more bolus insulin if I eat high carb. If someone requires a lot more basal insulin than bolus, it suggests insulin resistance.

Based on your husband's high insulin requirements, I suspect insulin resistance is already coming in to play. Symlin may be something to look into adding in the future, but I think I would figure out what his specific insulin needs are before adding a variable like that. Symlin is a drug that is injected with meals to prevent post prandial spikes. Some type 1s find their injected insulin works better if they add a type 2 oral med, metformin and avandia being the ones that come to mind. This is something that may benefit your husband right now.

Best of luck, and please keep us updated.

 
Old 12-31-2006, 03:42 AM   #7
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Re: when nothing works

Thank you Thank you all so very much.

I am so happy to have found this group!

Okay, So.......I made a mistake with the numbers and switched them Oppps.

4 units takes DH down 100 points (about)
and 1 unit of insulin for 12 carbs ( or suggested the dietician we saw 4 years ago)

So for the past 2 days we have been doing a lot of carb counting. I like the idea of eating the same thing for breakfast everyday and getting the insulin dosage right for that meal, and so on and so on. I really think Dh can manage that one!

Yesterday was a good day, all day his levels were pretty steady and 200 or lower to 170. (which sounds high but for him it is good! ) We both agree steady is so much better then peaks and lows. If we can keep his levels steady and gradually lower them to a more normal range that might work best for us.
(right now he feels "funny" at a normal bGl. Anthing under 150 makes him nervous and shaky) I want him to feel normal at 120 but right now it just isn't so.

Tomorrow, off to find a carb counting book that is pocket size. It will come in very handy. I am paying close attention to food too. Did you know that Low Fat means they just replace the fat with more sugar and or carbs??? I learned that last night on PBS (thank god for TV).

We are awaiting a call from an internal medicine doc here. THey only accept new patients on a case by case basis, if at all so the hunt is on.

Thank you all again. It really helps to hear advice from people who actually live with this.

 
Old 12-31-2006, 08:12 AM   #8
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Re: when nothing works

Quote:
Originally Posted by roadfamily6now
(right now he feels "funny" at a normal bGl. Anthing under 150 makes him nervous and shaky) I want him to feel normal at 120 but right now it just isn't so.
Unfortunately, that happens. You just kind of have to ride it out till the body adjusts to that, though sometimes a low carb snack when it's bad will help.

 
Old 01-01-2007, 02:13 PM   #9
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Re: when nothing works

As he is so insulin resistant, your husband is going to have focus on doing what T2s are told to do : control carbs and get exercise. As a T1, I have also had to deal with insulin resistance. And it can be reversed. But just reducing carbs moderately and avoiding high GI carbs won't do it. Essentially, you have to retrain the body to use fat instead of carb as the main source of energy. And that requires a drastic reduction in carbs. It immediately reduces insulin requirements and assists with weight loss at the same time!

Exercise is the other side of the insulin sensitivity coin. And the more he gets, the more insulin sensitive he will become. This, of course, further reduces the amount of insulin required. The net effect is that blood glucose becomes a lot more stable. Intensive resistance exercise produces the best results, because it builds muscle. And increased lean muscle mass is improves insulin sensitivity enormously.

Mark
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Old 01-02-2007, 03:02 AM   #10
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Re: when nothing works


Thank you all so very much. I think between the scare and your advice, we are gonna lick this thing!
We bought a great little pocket size carb book so DH can take it to work incase he has to eat out. We do send a lunch with him 90% of the time but sometimes there are "lunch meetings".

We also have been counting carbs with every meal and adjusting insulin accordingly. We think DH was taking too much insulin most times and that was why his bGls were so out of control as he would have to combat a low with more food and usually over do it.
He is finally learning that a whole candy bar is NOT needed to bring him up a few points. (I have been trying to get that one through his head for years!) and now that spikes are not spikes but more like low mounds, he is no longer fearful of going low fast and can slow down and THINK about what he needs to bring his bGL back up gently.

Thank you all so very much!!!

 
Old 01-02-2007, 07:30 AM   #11
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Re: when nothing works

Candy bars really aren't the best option for raising blood sugar. They have carbs, but a lot of fat also slows down how slowly those carbs affect the blood sugar. The resulting effect is the low is often over treated, resulting in a nice high later.

It's better to try simple cards- juice, hard candy (though I find this hard to chew quickly enough when low), glucose tabs, or cake frosting.

 
Old 01-02-2007, 06:46 PM   #12
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Smile Re: when nothing works

That's great that your husband is realizing that he was overtreating lows. That was one of the best lessons I ever learned. I used to do the same thing your husband did and then be very high after and have to take insulin and the rollercoaster would continue. I use Starbursts. I'm not tempted to eat them when I don't need them and they're easy to carry. I use between one and three depending on how low I am. Good luck.

Sharon

 
Old 01-05-2007, 04:59 AM   #13
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Lightbulb Re: when nothing works

Your determination to search for answers will help a lot of people.
Breathing helps when nothing works. Do the following breathing exercises known as Yoga Pranayam and let us know the effects. You can do it as well.

Bhastrika - Take a long deep breath into the lungs(chest not tummy) via the nose and then completely breathe out through the nose.Upto 5 minutes daily.

Anulom Vilom - Deep Breath-in through left nostril keeping right nostril closed
then - Breath-out through right nostril keeping left nostril closed
then -Deep Breath-in through right nostril keeping left nostril closed
then - Breath-out through left nostril keeping right nostril closed
and repeat this cycle for 30 minutes maximum.
Tips : Breathe into lungs not into stomach. Do not hurry. Do it slowly. Rest whenever needed (in any pranayam).Can be done in sitting position, standing or lying in bed(if bed-bound).Keep tissues handy, as a lot of mucous from lungs will be coming through the nose.Monitor blood results to see the improvement. Do the pranayam before eating.
Pranayam is about getting more oxygen into the lungs and sending it around the body via blood to aid in body repair. With extra oxygen more platelets and red blood cells are formed to build up the immune system.Extra fat is burned to reduce weight. All this happens naturally without side-effects.People with all types of ailments including incurable ones will benefit. This has been practised by sages, but has been simplified and brought to the masses by Ramdev.

 
Old 01-10-2007, 02:25 PM   #14
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Question How's it going after the first week?

I'm really interested to hear what's happened, if you've got the time to post.

 
Old 01-16-2007, 01:44 PM   #15
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Re: How's it going after the first week?

so far so good. We did go on vacation and his BgL were a bit high during htat time but we did not have the rollercoaster effect that we normally experience.

Now we are back on a "normal" schedule and expect things to get much better.

Thank you all again. I will be posting and reading here frequently. You are all great!

 
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