Ok, so I have been diagnosed about 2 months ago. Started out on 10 units of Levemir and 3 units of novolog before each meal. That worked well for the first two weeks. Then just like everyone said, the honeymoon took over and my needs decreased. For a couple of weeks I was on 8 Levemir and 2 novolog, then that bumped down to 4 Levemir and 1 novolog. I got two opinions from two seperate endocrinologist, both with the same conclusion. I had an A1c of 11%, fasting bg of 300+, and I had the classic symptoms (FREQUENT urination, thirsty all the time, dehydration, extreme fatigue, lost 30 lbs, excessive hunger.) They ran the normal blood tests and c-peptide. C-peptide came back at 0.9. They said this meant that I was on the low end, but I still had some beta cells working and eventually over a unspecified amount of time they will be killed off.
Both doctors didn’t take 2 minutes to look at my chart and say you have type 1. They explained the honeymoon, and I have read all about it. I got approved for Dexcom, and Omnipod, my thinking about the omnipod is that I could bolus in fine increments and that would help me stay consistent.
Because I knew my basal would be soooo low, I just started at the minimum 0.05 u/h. I:C is 1:125 and I put that 1 unit of insulin reduces 300 bs (I used an insulin sensitivity calculator to obtain those.) My fasting blood sugar is around 70, after meals, I frequently dip into the 50’s and 60’s. My post meal spikes top out at 150. I guess I am just asking if my honeymoon is that good or should I be looking elsewhere? Should I ask about getting off insulin completely? I swear I think I could totally get off it and I would be fine. Just see the point in taking basically the minimum amount of insulin, and still having to eat from lows. I read that quitting insulin has bad consequences like when I would start up having allergic reactions. I also heard that taking some sort of insulin helps preserve my beta cells, but at a cost of going down to 60 after many meals?
Any advice, professional or personal experience is greatly appreciated.
I'm no expert by any means and am just learning all this myself. I was diagnosed LADA in Nov 2011 and wasn't put on insulin until about 2 months later when it became harder (even with low carb dieting) to control post meal BGs. At that time, my fasting numbers were still good so my endo put me on bolus insulin only. If your fasting numbers are as low as 70, maybe your doc can just have you take bolus insulin only? Just a thought.
How old were you when you were diagnosed? I read about LADA. I am 25, which seems to be at the end of the Type 1 range, maybe the beginning of LADA’s range.
I got to the point where my endocrinologist even suggested completely coming off my bolus dose. My CDE even floated the idea of working with a dietician to come off insulin totally. Honestly, if I hadn't been in the middle of track season, having really good results with the training, I probably would have at least come off bolus.
70 is so low as to be dangerous because your BG rolls downward from there. You definitely need a Dexcom to alert you, on continuously.
You might find that metformin in place of basal insulin would be your drug of choice for awhile for cellular needs. If it keeps your BG stable round the clock, fine. Just a personal opinion.
Your 1:125 sounds erroneous. l unit insulin):15 grams carb is more likely in the beginning. One usually starts there. One unit of insulin may drop you 90, but 300 is unlikely. There's something else at play and that something else is your own working insulin. Personally, I'd be using insulin only when I found my BG up there and after I knew exactly what a unit dropped me. And frankly, I don't know how to find that out if my own insulin were working!
You can test your basal insulin amount round the clock but in your case I won't even describe the procedure because your BG is too low.
My personal belief is that no doctor wants to say you are Type 1 because you're
very close to not meeting criteria for Type 1. Your post meal spikes, however, are too high for not using insulin.
So, metformin instead of basal. A tad of insulin after you figure using small amounts of types of food, how much to give, using your pump.
You're having some well founded frustration. Keep your Dexcom working well.
Get back to the Endo with a question. Today. (By the way, are you taking any drugs that are raising your BG?) And smile. Welcome to the world of diabetes. Always a challenge. Always something new to confront and fix. But fixable it is, and someday you will laugh at your body! Each one of us is different.
I started out at a ratio of about 1:25 after diagnosed. But slowly that ratio increased. Negative on meds that are raising my blood glucose. Is there truth in the allergic reaction to insulin if you stop taking it for awhile?
Wow, seems everyone's ratio at the beginning was higher than mine. I'm still at 1:40 after 2 months on insulin but my endo will probably change it at my appt tomorrow. I haven't heard about the allergic reaction to insulin. What type of reaction would a person have if allergic? Sounds odd that someone could be allergic to the very thing that keeps them alive.
I’m not sure. I read multiple things that some people that started insulin treatment, then quit totally altogether, their body rejected it when they tried starting it back. I don’t know. I am about ready to just start experimenting and just try a week or so without insulin and see where my needs are. If I did that, you guys are saying it is best to start with small boluses once my spikes get too large? Then I won’t need a basal until my fasting bg starts to rise?
I don't know about being allergic to insulin after coming off it for a while, but I think I may be having some type of reaction to my Novolog (or a delayed reaction to Levemir possibly). I use between 3-5u depending on when and what I eat. I just recently started having a breakout all over my neck, chest, and back shortly after starting my Novolog. Now, I've never had perfect skin and still get the occasional blemish here and there, but this is pretty bad outbreak for me. Then last night I seem to have developed a slight rash on my neck that is itchy. I've looked around and can't find many posts about Novolog causing a breakout or rash, but it was the newest thing in my life, and as such was my first thought. I'll certainly be asking about it at my next visit in a few weeks whether or not things improve. Then again, maybe I've just become celiac as well! Hard to say with stuff like this.
I was 57 when I was diagnosed. I was started on 10 Lantus and 3 Humalog with meals and gradually built up to 14 and 5. Then my beta cells began working a bit again and my insulin use went as low as 5 units of Humalog and an insulin to carb ratio of 1:25. I've never stopped taking insulin and my total daily dose has been around 25 units per day for the past couple of years.
I would not go off insulin even if you can maintain basic control for a while without it; keeping tight control may help preserve remaining beta cells which may provide dividends years out. I was diagnosed five years ago and still get some assist from the survivors.
The 1:15 isn't actually where "everybody starts" but a good jump off point for figuring out one's true ratio. The right ratio for each person is the one that works to keep them in target range the majority of the time.Many of us have different ratios for different mealtimes. LA if that is still working for you, you don't want to change it. You have a better idea how it works than your endo. Trial and error/trial and error!
The thing is, the 1:40 ratio? sometimes it works, sometimes it doesn't. Depends on the type of carbs I'm eating and Zoe, you are right, it may be that I need a different ratio for each meal. So much to keep up with. I hope my endo works with me tomorrow so we can make some changes and I can feel better. The BG swings are awful!
Yeah, I found that discussion and read through it when all this started happening. That's what makes me wonder if maybe I'm celiac now or not even though I don't have the more severe symptoms. Could just be Dermatitis herpetiformis (also caused by gluten intolerance). Easy solution would be to cut out gluten and see what happens. Or, conversely, I could load up on gluten and see if things get worse! That wouldn't be good for the BG levels for sure.
Oh no doubt! I was just looking at the ages of LADA, trying to determine if I am closer to that, or traditional type 1. I know honeymoons are all different, but trying to estimate if I am going to be on the one year or less (type 1) or multiple years (LADA). Neither doctors mentioned LADA, but since I’m an adult I just did research on it. Not sure if its legitimate or just my OCD about my diabetes kicking in. I’m just not a work in progress guy. I like to get things done, now, and this wait and see stuff tortures me.
There are some immunological theories (not sure they were ever proven) that taking even small amounts of insulin during the honeymoon, even if numbers would stay reasonable without the extra insulin, may prolong the honeymoon.
There are also some psychological factors, the docs really don't want us to think that we're "cured" during the honeymoon. Because otherwise we might have to go through the whole acceptance process again once the honeymoon is over. Keeping us on even tiny doses throughout helps us learn when things are easy, before they get hard again, by this theory.
All that said, if you're going around equipped with an Omnipod and a Dexcom you're way way beyond any of the technology that was even imagined when I was in my honeymoon. (Literally, that technology was pretty much up there with jet pants, the hovercar, warp speed, and all the other good stuff that would come to us in the future.) If the honeymoon seems to be long lasting, more than just a month or two, and you're starting to ask why you have to go around with all this fancy equipment, I don't think it would be unreasonable to take things down a couple notches to maybe just occasional bg tests and tiny insulin shots via syringe.
Of course, the other mindset is that the honeymoon is chaotic, variable, and a PITA overall and has little to do with real diabetes control. (That last part, I'm not so sure of, but I'm just putting the viewpoint out there.). Getting over it faster, by this mindset, is just like ripping the band-aid off quickly rather than prolonging the process.
I'm the same way Benjamin. I have a couple other autoimmune diseases and after this 3rd one (LADA), I told my doc that I wanted to be tested for all of them and get it over with at one time so I won't be kept getting hit one after another.
As far as how long it'll be before all your beta cells bite the dust, well.............that's anyone's guess. I've read though, that if you have both GAD and IA-2 antibodies that you're quicker to the end than most. I have the GAD and the IAA antibodies and don't really know what the IAA ones indicate. Something about attacking insulin? I kept my endo for an extended office visit my first time around and didn't have the heart to ask her to try to explain that to me, lol.
Good analogy Tim (ripping the bandaid off quickly)..............I mean it's great that I'm on a low dose of bolus only, it really is. But having your pancreas have a mind of it's own and not knowing when it will spit out insulin can throw a person's day off with no warning. I think, but am not sure, that not having your pancreas produce any insulin is easier to control? I don't mean to make light of anyone's diabetes, I just know that being in the honeymoon stage is hard to control because you can't control your pancreas. someone enlighten me if I'm wrong.
Tim, That is exactly where I am at in my thinking right now. Again, with all respect to those who have diabetes their whole life and I'm sure would give an arm to have a few beta cells, I am to the point where I am tired of taking 5 separate one unit shots, or seeping .05 units out every our, with a gargantuan .25 units for a bolus. This disease is not psychological with me. I understand it's lifetime, so I am thinking, if I have to do this for the rest of my life, I would rather have 1 normal year, or for that matter 1 normal MONTH before having to get on insulin full time. I would easily trade a couple of years of milking the few remaining beta cells for just a few months of "normalcy", at least then, when I DO have to have it, I feel lucky for the short amount of time I got left. Almost like a bucket list of diabetes, but not to the extreme of eating whatever I want, just the satisfaction of being a little more care free than I will be forever. When my doctor said some people never go off their honeymoon (not sure if he was just trying to cheer me up or was being real,) my thinking was awesome! Now not so much. I just want consistency, one way or another.
You know, the folks in their honeymoon who show up here complaining about the lack of consistency, are sometimes complaining that one morning they wake up at 85 and the next morning they wake up at 105. Then they bemoan how awful it is that their honeymoon isn't over and the pancreas is producing insulin intermittently.
I suppose the grass is always greener on the other side of the hill :-). I compare the range they see with me waking up one morning at 55 and the next at 205, and I don't feel either of those are really bad numbers in and of themselves!!!
I think it is a little cruel to keep someone chained up to a Dexcom and Omnipod when they aren't really doing them any good yet. I for one will ditch my cellphone every chance I get. But I could not imagine not carrying a bg meter with me or not taking my insulin shots. Maybe it's more about mindsets than anything physical.
