Hi gang....

Only 7 months new to this type1 and was wondering....is it normal to have A1C results go up when regimens are followed so diligently?

I've been on insulins: 30/70 (to start), Rapid+NPH, Rapid+Lantus (2 months now), and I am also hypothyroid (15 yrs). I've gone through so many changes in doses, diet, etc. over the past 7 months and despite being extremely diligent to all instructions...have not been able to lower bedtime BGL into single digits but a handfull of times plus I have been going hypo at least once a day since Lantus (also did on NPH on a couple of different 'regimens'). I have never reached the control stage yet. Here are my A1C results for the past yr. (they're high, eh?):

Sep04 = 10.7%
Jan05 = 14% (this is the time I was dx'd with type1)
Mar05 = 8.7%
May05 = 9.1%
Aug05 = 9.2%

I just don't understand what I'm doing wrong? My diabetes team all concur that the pump will solve most of my issues (they call me brittle) but what if I can't afford the pump? (still looking into options in the financial assistance areas :-)

I've taken much advise from many of you on this board like: splitting up Lantus dose (AM/PM), lower carb/higher protein meals (which my edu nurse said to be careful with 'cause of long term kidney complications with high protein diets), almost eliminating process foods (except for crackers, cereal, and whole grain bread...OK and a handful of chips on RARE occasion), careful with fruit portions, and just overall eating well balanced meals but I'm starting to lose my faith.

I'll take a 2hr. after breakfast reading and it'll be 11.4 but an hour later I got the "Oh no...I'm crashing feeling", I test and it's 2.7!! What the H? I've even tried delaying Rapid injection at meals by 15-20 minutes (in case I had some "slow emptying stomach syndrom/thing/whatever")...no luck.

Guess I'm just looking for some advice on what I may be doing wrong. My diabetic team have all gone over everything I eat, when I eat it, when I inject, etc. with a fine-toothed comb (my sessions are 3-4 hours each time). We've just been going down the list and knocking things off one at a time. What's left?

Any suggestions/advice/commiseration would be gratiously accepted.

Cheers,
- Vikingirl

Has anyone mentioned a continuous glucose monitor? The one I used was from Medtronic and monitored my blood sugars every few minutes for 72 hours. This can tell you what is going on naturally like when your liver releases the most glucose and such. I have natural highs in the late afternoon. It might be something to look into to tell you what is going on. It gives a much clearer image than the occasional finger test.

Sadly, diabetes management boils down to two things. What you eat... And what you burn. I actually had to fast for 24 hours to see what my problem was. If your blood sugar is normal, it's what you are eating. If it's high, it's that you aren't getting enough insulin. Then you can start to work on the problem. Carb/Insulin ratio's are highly individual so you might have to tweek it until it works for you. Going on the pump might also solve your problems as you can program for different basal rates at different times so you can adjust it to your individual situation.

I am brittle also and only just now getting it all under control after almost 11 years. It's a full time job until you learn how you react to different things and how to respond. It is also important to point out that your A1c can be thrown off by highs and lows. When your blood sugars are out of control, the highs and lows can cancel each other out. Keep in mind that the A1c is only an average. As far as the 9.1 or 9.2... That is a very minute difference. The bigger issue is bringing it below 9.

Good luck

Hi,

My daughter has some of the same problems that you do. She wakes up everyday with a high blood sugar and takes a correction for that at breakfast. Two hours later she's still high but then within another hour, she'll drop dramatically and will need to eat even if she doesn't want to. This happens almost every day and we've tried different things to correct it but it's an ongoing issue. Doesn't seem to matter what her number is when she goes to bed, she'll wake up with a number over 200 and sometimes it's even over 250. Can't give more Lantus because of her low before lunch. Doesn't matter if we stop the correction at breakfast because she'll go low anyway, it just takes a little longer. So, what to do? I have no idea and I dread going to the doctor this month because I know her A1C will be high and they'll get on our case even though I've faxed them and called them and they keep telling me to just do what we're doing! It gets aggravating.

I really don't have any advice for you, just wanted you to know that you aren't alone and it can definately be something that makes you stress. We're considering a pump too but it will have to wait until January. Do you have decent insurance where they will pay for all, or part of it? Even if you don't, it might be worth it to just put it on a credit card. I know it's a lot of money but everyone I've talked with have told me they were able to get extremely good control with the pump. For my daughter, I think it may be her only solution, I just wish we didn't have to wait so long for it.

Thanks for the replies. It's nice to know you're not alone or going completely crazy :-)

Mommyof4: Funny you should mention the continuous monitoring. I was reading up on it just after I posted. I will definitely ask my doc(s) about it. I'm up for trying anything. You're also right about it being a full time job - it certainly has been for me these past 7 months - literally.

Linda1629: You describe my day to day challenge to a T. They won't up my Lantus for the same reasons you describe. I guess if they're telling me they don't know what to do with me (other than put me on the pump), I guess I shouldn't feel too bad about not finding a solution on my own, right? :-)

I've got my appointment with the pump nurse end of October so hopefully I'll have some kind of answer in the financial assisstance area by then. It's not so much the cost of the pump that worries me, though, it's ALSO being able to come up with the on-going and expected $300.00-350.00 (Canadian), for the monthly supplies. I know you can't put a price on health and I'm sure I'll find a way. It's just all so frustrating at times.

Thanks for the advice, and most certainly the encouragement. It helps to just know that there actually are folks that KNOW what you're going through. A heartfelt Thanks to you.

Cheers,
- Vikingirl

Hi Linda1629. I had the same problem when I first started my pump. My sugar would still be high after 2 hours and then crash. At the time I was on NovoRapid (one of the very fast actings available here in Canada). I switched to Humalog and discovered that the NovoRapid was acting more like regular. The humalog worked faster so at 2 hours my sugars were down. I realized that I was taking too much of the other insulin and it didn't peak for 3 to 4 hours. Once I switched, everything was fine. The insulin worked faster and I found I needed less. Maybe this is what is happening in your case?

Coa

First order of business. Have you talked to your insurance to find out what their durable medical equipement, DME, coverage is? Even government funded healthcare has a DME coverage limit. If the pump is approved, you can go ahead and get the pump and be billed for the remainder. Whatever payment options you set up are accepted as long as they are made regularly.

Supplies come with the pump and should last the first month. You can have supplies delivered on a regular basis or you can order just what you need. You might also want to choose a pump that has over the counter options like batteries. My pump uses aaa batteries where my last pump used batteries that could only be ordered through the pump company.. Expensive!

You can go on a payment plan with supplies also. Good luck

.... I've been on insulins: 30/70 (to start), Rapid+NPH, Rapid+Lantus (2 months now), and I am also hypothyroid (15 yrs). I've gone through so many changes in doses, diet, etc. over the past 7 months and despite being extremely diligent to all instructions...have not been able to lower bedtime BGL into single digits but a handfull of times plus I have been going hypo at least once a day since Lantus (also did on NPH on a couple of different 'regimens'). I have never reached the control stage yet. Here are my A1C results for the past yr. (they're high, eh?):

Sep04 = 10.7%
Jan05 = 14% (this is the time I was dx'd with type1)
Mar05 = 8.7%
May05 = 9.1%
Aug05 = 9.2%



vikingirl,

Seems like you have tried lots of different things in only 7 months. Could you be changing too many things too quickly? I found that it took at least 3 months for the Lantus regimen to settle down.

Having said thatand without knowing all the details, my initial reaction to your comments is that your main problem is most likely high blood sugars at night. I also found that my night time and morning blood sugars increased after switching to Lantus. The flat action profile of Lantus means that, unlike NPH, it doesn't deal with the dawn phenomenon. A before-bed shot of NPH, on the other hand, starts peaking when the DP kicks in. And it lasts until the DP wanes in the late morning.

The reality is that many of us need a lot more insulin from 3am-11am. This seems to be specially true off people who have had T1 for a long time. And just increasing the Lantus dose causes hypos at other times of the day. You also need an insulin that peaks during the time of maximum insulin requirement.

Using a pump is the best way to deal with this. You simply program a higher basal rate during this time of the day. But an alternative is to replace your night-time Lantus with NPH. I inject 5 units of NPH before bed and 8 units of Lantus when I get up in the morning. And it works really well.

I agree with Mommyof4 that best way to figure out what is happening is with a CGMS. If you can't organise one, test every hour for a couple of days and analyse the results. You will find that reducing your night-time blood sugars has a dramatic effect on your HBA1c.

Cheers,

Mark

Thanks once again for the fantastic info and suggestions. You guys are great!

I've actually to touch base with my DEdu nurse this week and I plan to discuss the contiuous monitoring, re-address the different carb/insulin ratios for meals, and I will bring up the other route to try...as you seem to have it working for you Mark...trying the Lantus WITH the NPH (I still have a fair amount left).

Good tip about the pump batteries, Mommyof4! Will have to check out the Medtronic (that's the one I'm going for), and see what kind it takes.

While I'm still striving for the ultimate goal...getting a pump...I'm currently (possibly) in the midst of changing insurance/assistance, so I'm kinda in a holding pattern at the moment. I should have a direction soon.

It does seem like a lot of changes to regimens/routines over the past months, but I really do have a fantastic diabetic team who've been very explanitory in why, when, etc. we made or could make changes appropriately. I'm quite comfortable there.

I guess I'm just trying to understand or put into perspective...why, when all the right steps are followed, there is still no improvement, particularly in the A1C? Gets me worried when I'm seeing it go up instead of down (let alone an over 9%-yikes!). It has to improve for sure, just gotta figure out how. I'll ask my nurse to thow in some perspective of the bigger picture when I talk to her this week, too.

Once again...Great advice, All, and I thank you for it. Will let you know the outcomes of some of the above mentioned as I get them. Thanks for the luck :-)

Cheers,
- Vikingirl

All of the info that I gave you before was for Medtronic. My old pump was through a different company. So far I love my Minimed ;)

It seems to me that you have had Dr's scaring you to death. My first A1c's after being diagnosed were in the 13 range. I would have danced to see a 9!!LOL In time, this will all become second nature and will get easier. You should see your numbers drop then.