Trying not to get my hopes up.... but should I even try?

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1

I just wanted to share.


I have been type 1 since the age of 27. To make an extraordinary long story short, I have never had good control. Great doctors, lots of ideas, none of them worked. I went on a pump one month after diagnosis, and that didn't help. I was bedridden for 3 months with meals made and measured for me; ended up with an a1c of above 8, and that's the lowest it's ever been. I am computer savy, resourceful, and a quick learner, but this is the one thing that has always gotten the best of me.

I've read and listened to stories of other diabetics who agonize about getting under 7. I am happy when I stay in the single digits. I tried Novalog and Humalog. I tried Symlin- great for 3 hours, but then I just spike anyway. I've tried various exercise over the years- everything from running to yoga- to no avail. I joined a gym and hired a personal trainer. Nothing changed. Last October, my doctor decided to try taking me off the pump because they suspected site absorption problems. Although I have enjoyed my pump vacation and have learned quite a bit, my numbers have not improved.

Then, 2 months ago, I changed doctors. She switched my short acting insulin to Apidra. As soon as I started it, *everything* was different. I would bolus, and come down! I had lows! I actually had to start carrying glucose around with me! I cried with joy!

Then I had my period. After that week, everything went back to the way it was. I tried everything I could think of. I didn't do anything different when it did work and I certainly couldn't figure out how to magically make it work again.

So I went back last week. I brought my numbers and was in tears, soooo frustrated and scared. I'm about to hit my 10 year mark so I'm terrified complications are going to be showing up every minute! Her theory is that I've developed a resistance to insulin (I've posted in another forum about having insulin antibodies). She gave me Symlin again, switched me to Lantus and gave me a script for Metformin. At this point, we figured, it couldn't hurt to try. She said if it works, it would take a week or so to build up in my system.

Last Wednesday was a week later. Since Wednesday nite, my numbers are like they were when I switched insulins. My very awesome and amazingly helpful pump trainer, Liz, came over Thursday to help me get back on the CGMS. I cannot *believe* that those little dots on my own pump could make such a flat, stable line!! Yes, I've hit the low 50's a couple of times, but I've also only gone over 200 once in 48 hours!

So.... this long ramble...

When can I get my hopes up for becoming a "normal" diabetic?

Or, better question, how can I keep my hopes down? Or should I even try?
2

I don’t think there is a “Normal Diabetic”. But glad to hear you are moving in the right direction!

3

Could there be things in your life that are not realted to your disease that could possibly cause these issues; stress or extreme dissatisfaction in other areas of your life?

4

I think your impression of what a “normal” diabetic may be heavily influenced by some sources that are hardly “typical” diabetics.

e.g. Dr. Bernstein insisting that the goal A1C is below 99% of the non-diabetic population. Or those who come here deathly worried about a reading of 120 because they were never that high before.

I’ve been T1 for 30 years now, and I can tell you that the most frequent posters here, or those who come and brag of their 4. or 5. A1C’s , are the very best controlled, and while their degree of control may be a goal we all have, that it may not always be an achievable goal.

And two cents of advice: when I have a string of really good bg numbers I’m often not really trying hard at all. It’s not that I’m not trying, but my usual doses with small corrections are working great. Then I’ll have some really wild high and low numbers and try harder - but without any obvious results because I’m trying harder. This is so frustrating. Sometimes I look at those patterns, and how hard I tried, and get so frustrated.

I have had doctors tell me that if I ever have a number above 120, that it must be because I’m a brittle diabetic, or I am “noncompliant” and didn’t take my insulin. I don’t know what universe they’re in. When I have forgotten to take a single shot I end up with a bg like 500 or 600.

5

@Tim - I think you are very right. I do have a skewed view of what “normal” is. I don’t know any type 1’s in my daily life- what I know is from reading boards and what my docs want. Do you know alot of “real” diabetics? How do I get a better picture?

I had no idea Dr. Bernstein said that! Really?? Then… why? Why is that all we hear about? (getting below 7)

It also doesn’t matter what I eat of if I eat at all. My standard deviation was 134 last time I looked. I don’t have any complications but I don’t want to start either! I’ve done the duckfiabetes thing and not tried at all, then the opposite. And I can’t think of what external stress I could have for 9 years that wouldn’t change with 4 moves, different jobs, friends, husbands, lifestyle, etc. I have thought it was something chemical/physical all along and it wasn’t until the change of insulin and the addition of Metformin that I’ve seen any significant change.

Thanks for the comments- they really help. I’m having another good morning; trying not to hold on to this and get let down again…

6

Enjoy the moment. You deserve it. :slight_smile:

7

As mentioned, you are not alone. I am impressed at how long you have been working at fixing this and keep trying. There is a formula that will work for you and it may take time to figure it out. Just don’t give up because you already know that it’ll be bad results. As for going on and off the pump, I was told it’ll take a year at least to even get a “clue” on how to use this tool. Maybe you gave up on it too soon? I’ve had mine for 4 years and am still learning about it. I’ve been diabetic for 32 and am still learning. It’s not a simple situation. Your a complex being and it can be minute by minute and a great website helps.

8

Sorry for the struggle. They are Type 1s who are also insulin resistant & Metformin helps. It can take more than a week for Metformin to work, so don’t give up. Many do better on time released Metformin. Please stay hopeful. Know that’s easy for someone else to say.

9

I might sound a bit harsh in this.I don’t mean to ,but it sounds like your doc doesn’t completely know what she’s doing. I say this because any women I know with diabetes, including myself has difficulty controlling their glucose around the time of their periods.Your period throws off your hormone levels, and insulin is a hormone so it can react differently during your period.Instead of switching your insulin when you have high episodes at this time you guys should be contacting one another on the phone or by e-mail during this time to work on seeing what adjustments should be made to your insulin.I hope you do manage to find something that works, but do remember there are always ups and downs with having diabetes and what works for a time may suddenly not. That’s when you just have to buckle down ,tell your self it’s ok, you’ll get through it, it’s just going to take some time.

10

crystal- I didn’t have a period for 7 years- I was on depo. No period, no fluctuation, nothing. It wasn’t till I went off that that I even had fluctuations. And like I said- I’ve been at this 9 years every single day -not just those few days before my period. With 7 different doctors in 4 states. I think if you don’t fit the “diabetic mold” (what I was calling a “normal diabetic”) that our medical system isn’t set up to make it easy to fix things. I’m not talking trying to get an a1c of 7.5 to 7- I’m talking about trying to get under 10!! This new doc is the first one who’s even tried something like Metformin and that was only because of the experience earlier. These aren’t just normal “ups and downs”- my std dev is quite high.

Lisa- I was on the pump for 9 years straight, going off it for the first time last October. I’ve been on MDI since then. Now I’m only using the cgms part of the pump- there is no infusion set in me.

Gerri, Lisa, and M4P- thank you for your support! I know I’m venting, I know I need to just wait and see and take this day by day, moment to moment. I’m trying… It’s just so hard to explain to a non diabetic why I keep trying…

I’m breathing… so far, still so good… keeping fingers crossed. :slight_smile: Thank you thank you!

11

Oh honey I’ve dealt with diabetes now for 37 years and have found that getting my hope up to be a “normal diabetic” or just to be “normal” isn’t going to work. Just remember this is YOUR diabetes and none of us are “textbook cases” HOLD STRONG things will work out!

12

So great you have found a medical team that is willing to take bold steps. The combination of Metformin and Insulin seems very challenging for doctors. It is hard to understand why. Metformin is well known and it just modulates down the glucose production of the liver. But this word just can have great consequences as you have experienced. I bet there are many other type one diabetics with this kind of misregulation of the liver (maybe 5% of the T1s).

13

wonderful! it feels good when you get the support you need, and ideas that actually work!

14

So far, still good. Any highs I’ve had are because I’ve screwed up- no unexplained highs!! :slight_smile:

{doing the happy dance!!}

15

(((( <3 )))) I too have been accused of being non-compliant and then after 10 years I was diagnosed with PCOS (which apparently causes insulin resistance) and put on Metformin, that was life changing for me but that combined with being on the pump is like having a new life, I wish you every success and hope that this does the trick for you hon x x x

16

Update!

Wednesday will make 28 days on Metformin. I’ve had a full three weeks with great numbers. According to carelink reports, two weeks ago I had an average of 160. Last week I wasn’t in the office- I was at a University for Training. All new food, crazy hectic schedule- the works. Average for the week? - 181 ! That crazy week is still better than any other average week report! :slight_smile:

Going back to see my Doc on Wednesday… can’t wait! Thanks for your support guys!!!

17

Got my A1c results back- down an entire 2%!!! not .2, but two percentage points!! And that’s with just 3 weeks! That’s some great medical proof!

Can’t wait to see this in 3 months!