Working hard but getting lousy results.

By Latest Reply 2010-05-05 21:47:13 -0500
Started 2010-04-04 16:11:17 -0500

Hi Everyone,
I'm new to this site so if this topic has come up before, sorry. So, here's my story, and I'm sticking to it! Been type 1 over 40 years and doc says i'm in better shape than one would expect after so long. But, I don't think so. I test about 7 times a day minimum, wear pump, eat really smartly, and still the bgs are all over the map. My lows are scarry-low and I probably sleep through a few a week. My highs are too high—the meter says "high" which means over 500. My A1cs go up and down and then up again. Just wondering here…how do you cope with working really hard, following the rules, and getting negative feedback from the blood tests? Thanks!

18 replies

valeriebst 2010-05-05 21:47:13 -0500 Report

I have been a Type 1 for 20 years. I have been on a pump for 3 years. Once I was educated by my Doctor and the Animas representative the pump have become my best friend. Once all of my Basal and Bolus settings were good my numbers were even better. As for changing sites its a must to change at least every 3-4 days. What I have experienced is that I can run low when I first change the site and then be higher the longer it is connected. Usually can tell by my morning number, before I look to see how many units are left, that it's time to change the site. Around 50 units my number start going up.
Since, like most diseases, Diabetes is not a perfect science, it is best to keep a positive attitude, read labels, exercise, and see your Doctor regularly. Don't let it win. You are the one in charge and you rule your "house". I believe that this is something to learn from and grow with. Though you seem to truly trust you long distance medical situation you need someone near to support you and work with you before there are additional medical issues.
Keep yourself healthy and be positive. This is just another thing in life that makes you stronger. Stressing and worrying just plays more havoc with your numbers. Talk with you pump representative as additional support. The reps are well trained and usually diabetics themselves. They understand and are extremely helpful.

Good luck with everything and you're right this is a GREAT site.

John Crowley
John Crowley 2010-05-05 16:00:21 -0500 Report

With a pump and 7 tests a day, there is no way you should be experiencing the kind of swings you're seeing. If your doctor isn't helping you make changes to correct these swings, you should be shopping for a new doc right away.

It sounds to me like one or more of the following things are not right for you: your insulin to carb ratio, your basal rate, and/or your carb counting.

Insulin-to-carb ratio can differ from person to person. But if you're comfortable that your carb counting is accurate and you're seeing crazy post-meal tests, then changing your insulin-to-carb ratio might be the answer.

If you're seeing crazy numbers first thing in the morning and before meals (as long as you're not snacking without insulin between meals), then I'd look hard at your basal rate. If you'd like to learn more about basal testing, check out this great blog post:

It's also possible that your carb counting is off. This can really be a culprit of crazy blood sugar swings. If you've been on the pump for a while and have grown pretty casual about carb counting, perhaps it's time for some intense label reading and serving-size-measuring.

I hope this helps you a little. Best of luck in getting those numbers under control.

gail244 2010-05-05 14:01:37 -0500 Report

Only 5 yrs experience with Type 1, and yes, I feel like I'm on a roller coaster ride. Was extremely shocked to know I have this disease, and I was the first person I knew at the time with it. So to say the least, I have been learning to manage it. Just recently asked Doc about the depression that I have been experiencing. Never had that problem before. Just wondering if it comes with the package?

legna70s 2010-05-05 20:41:49 -0500 Report

I recently was put on U-500 insulin and began experiencing the same issues. After getting so out of control and my husband calling the police to calm me down, my doctor finally put me on antidepressants. Only problem is…the dosage is wrong and instead of taking off the edge, they make me lathargic. Dr says that this insulin is known to cause some depression.

In general, so does being a diabetic - 10 years now myself on insulin for 9.

greeneyedlady 2010-04-16 11:22:20 -0500 Report

I have the same problems with all over the place highs and lows (and have for twenty years), and I feel your frustration! I have found that some herbal supplements are very helpful (Nature's Way diabetic blend), and also meditation seems to be very effective for me. Ultimately I find that certain times of the year are worse, and that when I am having all over the place blood sugars at certain times of the year, I can identify patterns of what triggers my highs and lows. It keeps me on my toes but I haven't found a lot else that works. I hope any of this has been somewhat useful to you, and I have all sorts of other tricks that have worked for me if you are interested some time. Good luck to you

Melissa Dawn
Melissa Dawn 2010-04-08 18:50:23 -0500 Report

As a pump user, I was having similar issues — numbers just bumping around without any pattern that I could fix.

After awhile of this going on, I found the pattern — it was the 3rd day on my pump site. Even though it wasn't entirely blocked off, it wasn't working well. It took a few times of it actually having errors before I found the problem.

It turns out my body was rejecting the pump site after about 2 and a half days. In trying to compensate for the highs on the third day, I'd have lows on the 1st day when the site was brand new.

It sounds like you're doing all kinds of good things — so its just something to check. I now change my pump site every other day and its helped a lot!

GabbyPA 2010-04-05 09:13:24 -0500 Report

Welcome to the site Sjb17. After 40 years I bet you can teach us all a thing or two.

Well if there were an amusement park for chronic diseases, diabetes would be the roller coaster. It takes us for a ride and all we can do is scream. We get off and then do it again.

The fact that you have not given up and just said "forget it" is a great testament to your discipline. I know when I get that frustrated, I have to fight off that feeling and look to the future. If you are working this hard and having mixed results, just imagine what would be happening if you weren't working hard at it.

The pump is supposed to be able to respond to your highs and lows. Is there a possibility that your pump is not working properly?
Also, as we age, our bodies react differently to what we used to be able to do or consume. Maybe there is something that your body is not happy with that used to work for you?

2010-04-05 15:47:26 -0500 Report

Wow! It's nice to have support, so thanks everyone. Today got worse but having folks who "get it", is a big help. What made today worse is I just had to get a shot of steroids which is another thing that makes the numbers wacky. Oh well… I know the steroids will help me (trigger fingers) so that means soon I will have one less thing bothering me. Ssilver lining…

Gabby, your questions are good but no, it's not the pump, and maybe it's the aging thing but I can't do anything about that! I'm going out on a limb here, but just having a group of people who understand is already helping my head. The bgs are another story, but for now I'm ok.

GabbyPA 2010-04-05 15:52:57 -0500 Report

Yep, that age thing does suck sometimes. LOL when we get that figured out, everything else will fall into place.

Those shots will do you in. My mom had those and it shot her up by 100 points for two days. Maybe the pain from your trigger fingers was causing issues. I know pain is a big one for me, and causes my numbers to escalate. Specially if it is prolonged pain.

I am glad you found some help, or at least a good shoulder or two. That's why we're here.

ston3xc 2010-05-05 09:54:29 -0500 Report

This is a really great site with a lot of great folks, ideas and tips! I've only been on the site for a few weeks but I've learned a lot in that time and I've been diabetic for over 30 yrs. Good luck!

legna70s 2010-05-05 20:46:54 -0500 Report

I've only been on the site for 20 minutes and I am already so comforted by reading the posts. My husband said "you're really likeing that site, huh?" My response - it's bitter sweet because it's horrible the things we as diabetics have to tolerate within ourselves, but it eases me to know someone else is going through it too.

hbkunkel 2010-04-05 06:48:19 -0500 Report

Wow you are in a very tough position. I understand completely your doctor situation and please keep us informed. Meanwhile, you are in our thoughts and prayers. Have you tried a food diary along with one that logs exercise and emotional feelings to see if that helps? Betsie

MAYS 2010-04-04 16:26:12 -0500 Report

Welcome to Diabetic Connect !

What does your doctor really have to say about these findings ?
That seems to be a rather strange reaction to this considering the fact that you are a type 1 and this can be very dangerous and harmful to you and your health.
Are you documenting these findings, maybe you should see another doctor, at least for a second opinion to your findings and facts.
Under these circumstances, this information that you are presenting is unnerving, as well as disheartening, to say the least.


2010-04-04 17:01:00 -0500 Report

Thanks Mays,
Well, you see the doctor situation is somewhat unusual. My doctor in NYC moved to Los Angeles but he and his nurse/educator are still treating me. The nurse/educator is the one i see monthly since she comes east to see myself and others. In between those monthly visits we do practically everyting via email, I upload results from my PDM, and all blood work is sent to them. Regardless of the geography, there are no two people on this earth who I trust more with this hell! About a year or so ago I tried someone else locally and they didn't come close when it came to smarts and care, so I am sticking with this arrangement.

Yes, I am concerned too, but my current state of affairs is total frustration. Why bother trying? It's hard to do this and I feel very much alone in the battle. Glad to have found this site. Thanks for your note.


MAYS 2010-04-04 21:45:15 -0500 Report

Thank you for responding.

I'm glad that you and your doctor have such a long, valued and trusted relationship, I can only imagine the frustration that you must feel at times, your doctor is the professional, not I.
Maybe he knows something that we don't and that's why there is no major concern, I wish the best for you, at least the peace of mind and understanding that you are seeking, you have the support here, you are not alone although it may seem so at times.

When you do find out something, can you please post it here on this site so that it can (if possible) help others in the future ?
(It would be greatly appreciated).


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