Hi all! I've been LADA for at least 1.5 years diagnosed but 4 years undiagnosed (went through gestational D and T2 before my pancreas finally decided to quit producing insulin all together and actually make my docs give me something other than metformin.) Anyways, I started using a pump this past March and I'm having the worst time keeping my bs under control. I'm feeling SO frustrated! Here I thought being on a pump would be the end all be all of treatment and I'm STILL struggling. I don't know if it's just D in general or being LADA or what. I'm on a constant roller coaster of highs and lows. On top of everything my husband is in the military so we are constantly moving around. We've been in our recent location since July and I still haven't been to the endo (was waiting on referral, now waiting for endo availability). I just feel like being under control is this elusive goal that I will never meet. I don't think I'm at the burnout point yet, but it does get exhausting trying to make it all work.
First of all, if you are LADA/Type 1, you are Type 1. You did not "go through" Type 2, but were misdiagnosed. Have you now been diagnosed as Type 1 by Antibody and C-peptide tests?
Ok, as for management and control, pumps are not a solution for all management problems! They are a much more efficient tool and most of us DO get better management along with more convenient management, but they require work and some of the same skills of MDI. If your ISF, I:C and basal rates are off, you won't have good control. So you need to see if all those things are set correctly. Your I:C ratios (usually different for each meal) should help you stay under target two hours after meals more often than not. If this is not the case, you need to tweak your I:C until it works better. If you are using 1:15 for dinner and are always high two hours after eating, try 1:13 for awhile and see how you do for example.
Your fasting and "in between meals" numbers reflect your basal rates. Most of us have several different "time zones" to match our different needs at different times of day and night. If you have highs (or lows) at a certain time of day, then you should tweak the basal rate two hours ahead of the problem time. Finally, your ISF should bring you down from a high within 3 hours and if not that needs tweaking as well. (Again, you might have different ISF for day and night). All these things need fine tuning to improve control.
"Perfect control" is an illusion and though some people keep their blood sugar in a very narrow range, most of us have highs and lows. But the key is to be in range more often than not, and to learn from the highs and lows about what might need tweaking. Personally, I don't believe an endo can help you with this as well as you can help yourself as it's a 24/7 deal.
I highly recommend Pumping Insulin by John Walsh to help you with all these skills.
Agree. you would have not previously been type 2 and then convert to LADA / type 1. GDM is a pseudo type 2 state. The placenta creates hormones that makes you insulin resistant. So you may have had true GDM or it may have been like a precursor to your T1.
There is also a condition called "autoimmune gestational diabetes" which is essentially Type 1 that is triggered by pregnancy ("the straw that broke the camel's back"). Autoimmune GDM affects about 10% of Caucasian women with GDM. I wrote a blog about autoimmune GDM.
Hi MKSSS: Zoe has given you some excellent advice. I have used an insulin pump for 15+ years, and simply love it. It did take me a number of months to love the thing, in part because 15+ years ago we didn't have the resources that are available today. Several things: first, although there are a few truly fortunate people who don't go through the highs and lows, I would say that that is rare amongst Type 1s. For me, I just try to avoid the wild swings (the rollercoaster) that is agony to me and leaves me feeling trashed. With my pump, having my basal rate be really well fine-tuned is the key to good control for me, and I have done that by extensive basal rate testing (I used the charting in John Walsh's Pumping Insulin). Second, can you get an appointment with an experienced pump trainer or CDE who has lots of pump experience? That might help you more than a brief appointment with an endo. Finally, there are lots of experienced people here on TuD that can answer questions and help with your frustration. Best of luck!
Oh yes, I am sorry. I was being facetious about the whole GD to T2 to T1. I don't think that came across very clearly!
Thank you for your honest reply. I think I need to start taking a lot of this into my own hands. I have lots of basal rates and carb ratios set for certain times of day which my original endo. set up for me but then I slowly started creeping up and then we moved which sort of set everything wacko. I guess if I could learn to start setting my own rates that might help with all the life changes I am powerless to do anything about. So a few things for input:
#1. What roles do hormones play in bs. I seem to run high the 2 weeks before and during my menstrual cycle (I realize that is pretty much all the time) but then I come crashing down the week afterwards. How do women manage D around all the hormonal changes taking place each month?
#2.Maybe this is an LADA thing or maybe just a D in general question. I seem to do better with a routine. I exercise every week day and eat about the same thing or same kinds of things everyday. And of course if I'm on vacation or not on my routine my bs goes high. When I get back into a routine it seems as if my pancreas goes into hyper crazy mode and I get a lot of lows and once I experience lows then it gets harder to manage D in general. I don't know if certain changes cause my pancreas to decide to excrete extra insulin or what? I think according to my tests I'm not really producing much insulin, but I thought that was what made LADA different from having T1 from earlier that I could still be producing a tiny bit? Maybe not.
#3. Is there anywhere to take an actual class on this stuff? I've had a great CDE and pump trainer in the past but then we move around and I have to start from square one it seems like. I know 'Pumping Insulin' is great. I've checked it out, but it has a lot of info. to just read and take in. Wish I could actually sit in lectures and have the time to study it and take it in. I spend my day taking care of my three girls. It's hard enough to remember to check my bs 2 hours after meals.
Don't feel personally responsible to reply back. I'm just venting my frustrations! There is just so much to know and learn about diabetes!!! I am so thankful for my pump. It has made my life easier in SO many ways and I do feel unworthy of having it a lot. I should know more. I'm getting there...slowly.
I think that was one of the first articles I read on this site. VERY informative!!!
Nope, that went right over my head, sorry!
"I'm getting there...slowly". That says it all for all of us. It takes time and patience and then everything changes. The one thing about Type 1 is "everything changes" so you are not alone in that! Can't talk about the hormone thing as I'm happily past all that, but don't hesitate to start a thread as lots of women have dealt with that.
Yeah, moving around can make it hard to connect with good support. A good CDE sounds so valuable, but I also encourage you to find a Type 1 support group to connect with other Type 1's and share info. I started one where I used to live and miss it a lot. I find other Type 1's a lot more useful than classes or white coats! Don't hesitate to ask questions on here...30,000 PWD's ...can't bet that!
#1 I don't know about female hormones from firsthand experience but hormones play a huge role. I run pretty regularly and get nutso BG on race day. 5K, marathon, whatever the adrenaline is there and it's kicking.
#2 I agree routine is very helpful. I have a desk job and the restaurants suck and, frankly, I don't go out to eat so, most of the time, I have the same breakfast and lunch most of the time, sometimes mix it up a bit but not that much. I do pretty well BG wise. Excursions on the weekend are, well, excursions on the weekend.
#3 Re: Classes. You can hang out here, at the forums and learn quite a bit. I've hung out at a few other ones but there seems to be more traffic here and a nice balance of people. There are a few people I'm aware of (Gary Scheiner, author of "Think Like a Pancreas" and Ginger Vieira, author of "Your Diabetes Science Experiment") who offer online consultation/ coaching. I have been aware of them for years and, while I haven't tried them, I have encountered some people who have who have liked them a lot and, at least if there postings on FB are correct, seem to get what they are looking for out of it. I also like both of those books and John Walsh's book "Pumping Insulin" a lot. All 3 books are owner's manuals that will tell you how to figure out how much insulin to take and how to adjust it if you're a litte bit off. I think that fine tuning is very important and you may not get that out of a doc you see infrequently.
I definitely agree, I took my son to Gary Scheiner and found it very helpful. Although it was very expensive.
I think some educators will work remotely (online), so you might be able to get someone that can in effect follow you wherever you move to.
Also, LADA can be a PIA sometimes as you are losing insulin production (crashing). Seemed to me that I would slip in an out of a 'honeymoon' period where my body was producing some insulin. One day I could eat some carbs, and the next day I couldn't.
MY diagnosis went EXACTLY as yours! GD, "type 2" misdiagnosis followed by LADA. I have been on a pump for 2 years and it is a rollercoaster of unpredictable highs and lows that are currently controlling my life. Stay strong, you are not alone!
You can actually program your insulin pump for changing hormonal cycles. It's certainly not perfect, since each month varies, but for example, my Animas Ping allows for 4 basal settings. I just set one of them for "pre-period" at 20% higher than usual. Then I carefully tracked my cycles, and as soon as the pre-period "hypers" started, I'd just switch to the 20% higher basal rate setting. Again, for me, it's having a good basal rate that makes all the difference.