What do people think about low dose insulin for LADA right from the start? I can keep my blood sugar below 120 by doing a pretty extreme low carb diet and I am having a problem with wild swings on insulin. Is it worth persevering to try and find the right type of insulin and get the timing and dosage right or should I just wait until I really need it? I think the research is inconclusive as to whether low dose insulin can preserve beta cell function and keeping tight control might be just as good. The dilemma is that my control is better without the insulin at the moment, but I was longing to have a more normal diet- I can only manage about 8 g carb at a sitting and keep my sugars low.
I think if you don’t mind sticking to a very low carb diet for control, then it should be fine. Always consult your doc before changing anything. The doc might want you to stay on a very low basal dose, just to make sure you don’t go into DKA. They say the point at which the pancreas quits is pretty unpredictable. They also say a low dose is supposed help along the beta cells, so they don’t have to strain, and also “they say” that the more natural production you have the more your body attacks the cells that are still working.These were the reasons I was given initially, when I argued about going on insulin (after I argued I wasn’t diabetic!). The only way he would take me completely off, was if I was having lots of lows from even a couple of units, which I never had happen. Hope that helps!
As I understand the research, if you use enough insulin to TURN OFF your beta cells from producing insulin, the autoimmune attack on your beta cells stops–IF your autoimmune attack is attacking insulin. Not all autoimmune attacks target insulin, some target the islet cells themselves. Tiny doses don’t turn off the beta cell’s insulin production and make it very tough to use insulin if you still have functional beta cells.
I was in a similar situation (not LADA but not producing enough insulin, so I was going over 140 with 12 grams of carb.) I find that I have to eat about 30 grams of carb to use insulin. I have tried all different approaches, and if I use 2 units of insulin, it works. If I use less than 2 units, it gets very unpredictable. For me 2 units appears to be the level where my own beta cells turn off.
I get better blood sugars with 30 grams of carbs and a couple units of insulin (3-5 depending on a bunch of meds, timing, and type of insulin) than I do with the very low carb diet I ate for years. Plus, I feel like I’m eating like a normal person. So my feeling is that is a better way, for ME, to eat.
I think you need to inject enough to shut off your beta cells from producing, or you end up with that homemade 2nd phase kicking in and making you low.
I know this is not what Bernstein writes, but I tried smaller doses and they didn’t work for me either. Plus, since I can get very good control with a couple units of insulin and more carbs, why not do it?
Thanks for the feedback. I happen to have islet cell antibodies so I don’t know if that makes a difference. I have also tried 30 grams of carb and 2 units of Novolog and it worked beautifully twice and then the third time I went up to 150 even though it was same time of day and exactly the same food. I get a huge 2nd phase reaction if I go over 140. Another time I went down to 50 on 3 units. I have only tried NovoIog and am not on any basal or longer acting insulin. I am waiting to get the OK from my endo to switch to Novolin-R to see if that works better. Does that stay in your system and allow you to eat something else later, or do you have to eat enough to use up all the insulin in one sitting or go low like with Novolog? When I ask these kinds of questions to my endo or the nurse they really can’t give me any answers. This is one of the hardest aspects of D for me is that I have had to do so much work to find out about what I have and how to treat it. Thank God for tudiabetes and all of you!
Libby,
I am not on any basal either. I had problems with both Lantus and Levimir, and don’t want to fool with NPH as it has such a bad reputation for causing unpredictable hypos. If I keep my bgs flattish at meals, I can usually get a fasting around 92.
I use R most of the time. It starts to work at 1 hr after injection, and hits hardest between 2 and 3 hours for me, with a bit more action at 4 hours, by 5 it’s mostly done but it is much gentler than Novolog, and if I test at 3 hours I can tell if I’m going to need to correct or not. So I usually have a small nibble at 3 hours.
I found that shooting R into the top of my thigh slows it down a bit too, in a way that I like.
I think anyone using insulin needs to do crazy amounts of testing to adjust the dose to where it is just right, and then things are ALWAYS changing, so every time I get it just right for a few weeks, something comes up and it changes again. That’s why we need test strips!
When I have my R worked out right I don’t get hungry. I don’t gain weight, and I don’t think about my insulin except when it’s meal time because I feel fine.
I’m surprised you’re not on any basal. It seems to be the standard first treatment for LADA in places where they know what LADA is. Keep in mind that the recommended starting dose (10 units) is probably too high. My endo started me off at 5 units, but some start at 2 or find that even 1 unit works for them.
Khurt,
It is completely mistaken to think you could “damage your liver” with ketoacidosis by low carbing. If your blood sugar is in the normal or near normal range, you cannot develop diabetic ketoacidosis. There is no need to eat “excessive” amounts of protein. Few diabetic low carbers do. If you eat a hamburger with bun and fries, and I eat the patty and a side salad, I’m low carbing, but we are both eating the same amount of protein.
And believe me, as someone who has been dealing with diabetes for 9 years now, if you want to preserve what beta cell function you have left and keep your blood sugars reasonably flat, you will have to go easy on the carbs. The idea that you can just inject insulin and eat what ever you want would work if a) you really knew how many carbs are in that pile of starchy food, which you don’t, and b) you knew how fast your body would absorb the insulin which can difffer and c) if you knew how fast the combined food in your meal would digest.
You can’t, which means that if you are using a lot of insulin with a lot of carbs, the food can miss the insulin and then life gets unpleasant.
I have learned after a lot of experimentation that over 40 grams of carbs is impossible for me to do, even with insulin unless I want to be testing constantly, which ruins the dining experience. I might be smaller than you, and size matters here–a bigger person gets a lower rise in blood sugar from a gram of carb.
But I’d urge you to respect people who low carb for diabetes. I know people who have done this for a decade very successfully and they have maintained blood sugars in the 5% range.
For those of us who do not secrete insulin properly and need to supplement insulin, a very low carb diet may be harder to manage, but I’d have to say that the lowest carb intake that you can manage with the insulin would be the best diet to use, long term. And LONG TERM health is what diabetes is about.
There’s increasing evidence, too, that high carb diets are bad for people WITHOUT diabetes, and that much of the bad press given to fats turns out to apply to carbs, because dietary carbs are what worsen cholesterol profiles, not, it turns out, most fats we eat.
Lili,
When I got my Lantus dose low enough to avoid hypos at 3 AM (3 units) I noticed that I needed MORE insulin at meals, which seemed odd, but made me worry about antibodies. And over the time I was using it, I developed a very fast pounding pulse that may have been my body fighting the Lantus. Hard to know. Doctors were useless and thought I had developed a heart condition, but it went away about 3 weeks after I stopped the Lantus.
Levemir pushed up my blood pressure (normal at the time) to dangerous levels. I ended up doing great on Ultralente, which they discontinued.
Overlapping shots of R work pretty well for me, I can’t do a 4th night shot because I’ll still hypo at 3AM if I do, but if my fasting gets worse, that would be a solution for me.
My doctors never even mentioned a basal insulin. I pretty much have had to research for myself and tell them what I want to try. My primary care nurse practitioner had not heard of LADA but she was the one who took my initial A1C of 7.2 very seriously and kept ordering tests even when the endo said was normal. Without any insulin, my fasting BG is steady in the 85-95 range. I go up to 140 with 10 g carb and 180 with about 16 g. I never seem to go any higher because my 2nd phase kicks in and I crash pretty badly. My thinking was that I need to only take care of those high Post Prandial numbers so that’s why we tried Novolog, but I can’t seem to get it right and I’m now scared to eat 30 g carbs with the 2 units of insulin as that has made me go high. One unit doesn’t seem to register with my body at all. I had a low carb day yesterday and no insulin, I felt great and my numbers were 80-115 all day. I do want to try R and see if that will allow me a few more carbs. 30-40 per meal sounds wonderful as I can’t manage more than 10 at a sitting right now.
I find that there is absolutely no difference for me between low glycemic foods and simple sugars. I was also recommended to eat lots of whole grains and complex carbs and my BG still went up to 180 every time. The dietician wanted me to eat 60 g per meal and my 2 hour numbers were great because my 2nd phase caused a crash. When I tested at 1 hour I found that I was spiking high. If I could find a way to do 2 units and stay under 140 every time I would be happy. More experimentation needed, I think.
I think low dose insulin / lower carb is a BRILLIANT idea. It just plain works.
For me it’s too late to keep my pancreas working - docs didn’t click that I was a LADA until my honeymoon was over. But in a way that’s a good thing too, since I’ve totally missed all the ups & downs a honeymoon can bring on. I was just on pills at the time and watching my diet as I was told - but that only meant going easy on sweets & bread and minimising fat, which is NOT what my body really needed!
I wish I knew then what I know now…
I dont really know if I am LADA, 1.5 or what…but how does your doctor actually determine? My history is:
Father Type 1 at age 32
Me Diagnosed at age 28 mistakenly as type 2 pills did nothing, then labs showed positive GAD
I am still after 16 months only on 2.8units of basal a day (pumping)
However, I did at one time go all the way up to 8units basal to control post prandials AND fasting. (Not the right way to do it I know now)
My 6yr old daughter was diagnosed 9months after me and she is still honeymooning too, on 3units basal a day.
I find it hard to understand that my honeymon has lasted this long if I am a true type 1. I just dont get the 3 generation thing. For months I listened to my Endo for dosing, and realized I didnt even NEED basal at the time, I just needed a ratio for eating more than 20carbs. I am currently still on a 30% basal and 70% bolus. Not the average type 1. When I asked my Endo for specifics in seeing if I am LADA, MODY etc she wanted to know why it mattered…I needed insulin reguardless. At first, I agreed but I am always wondering.
I don’t knw much about MODY but I think if you have GAD antibodies that makes you a Type 1. LADA means Latent Autoimmune Diabetes in Adults and like juvenile Type 1 it tends to run in families. I don’t have any relatives with diabetes but my father, sister and I all have hypothyroid, another autoimmune disease. LADA develops much more slowly than juvenile Type 1 and the rate of progression is somewhat dependent on how early it is diagnosed and how you manage your glucose levels. I am also still in the honeymoon phase and hope, by keeping my blood sugar in tight control, to maintain my own insulin production for a long time. I am doing a combination of low carb for some meals and 2 units of insulin for meals with more than 8 grams of carb. When I hit it right I can stay between 85-105 all day.
Jenny,
If I lower my carbohydrate intake and keep my fat and protein at the same level won’t I lose weight because I am no longer eating enough calories?
I ask because this is what happened in the first few months after my diagnosis when I decided that carbs were “bad”. I am 5ft 5in and was losing 5 lb a month even though I was eating a healthy amount of protein and fats, and veggies. When I hit 128lb I decided that low carb was not for me.
Eating extra protein and fat to make up the calories did not seem like a good idea either. So how does one eat low carb, low fat and still maintain a healthy weight for one’s height, age and activity level?
I am not saying low carb is wrong. My understanding is that low carb (such as South Beach) was designed for weight loss.
I only use rapid acting with meals and at first I saw those different reactions to the same insulin/food… but I persevered, either correcting or treating lows promptly and it seems to have levelled out now. I seem to have waves of slightly higher and lower insulin production and so my insulin dosage has to be increased or decreased slightly every few weeks. I usually take 2-3 u however like Jenny, if I venture up into the 40+ g carb all hell can break loose… so I try for a quiet life… don’t anger the insulin goddesses…
The low carb diets are for weight loss, except for Dr. Bernstein’s Diabetes Solution which is to normalize blood sugars. I had the same problem, lost nearly 30 pounds and was rather thin to start with. I’m 5’7" and now weigh 115 pounds. I was most concerned when I was still losing weight, but seem to have stabilized now. I believe you can eat a little more fat and protein on a low carb diet and the research seems to suggest that it doesn’t do any harm. I am eating a bit more carbs now as I have finally figured out how to use insulin successfully but I still keep my carb intake pretty low: 20-30 g per meal. I do snack a lot in between meals ( 4-6 g) and that helps me keep my weight up. But to answer your question, you can’t eat low carb and low fat unless you want to keep losing weight. Dr. Bernstein does address this in his book and talks about how people can have better cholesterol levels on low carb/higher fat diets.
Kelly, I’m a honeymooning LADA too. I was diagnosed 2.5 years ago. I only just started a basal insulin in June - 7 units a day. I was doing fine keeping my BGs in check with low carbing and Avandia, but didn’t want to take Avandia any more. In some respects, your doctor is right - why does it matter what exact type you are if you are doing everything you need to keep your BGs normal? I’m actually a negative GAD, but apparently there are other antibodies. Good luck to you in keeping the honeymoon going as long as possible!
-Andrea-
I’m negative for GAD also, but positive for islet cell antibodies. Since I started this post I have managed to get the hang of insulin and am enjoying a much more varied and nutritious diet. It was definitely worth perservering!
Amazing. This is everything that I’ve been doing (somewhat on my own with some reading etc.) to a tee. I’m glad I’m not crazy. I was diagnosed in June of this year type 1. I think I’m LADA because judging from a physical I had a year and a half before the fasting numbers came up 122 the first time and they said I might be pre so I went back and had a second test done and it came up 96 and they said I was fine. Now in June I get another physical and the numbers came up 240 and 311. Obviously it has been coming on for quite some time now, slow onset unlike type 1 in children where it comes on hard and fast. Also no ketoacidosis. They put me right on insulin though, now take 10 units of Levemir at night but I only take Novolog at lunchtime because I don’t eat enough carb to warrant it any other time. I now use low carb bread with lunch and take 2 units. When I would try using “low gylcemic whole grain” bread I would take 3 units but it could fluctuate. I find it’s easier to control my numbers when I don’t have to take rapid acting. Dinner I eat nominal carb and take last night for example, pre meal-89. Post-98. No rapid acting insulin. Dinner? 2 pork chops and a tossed salad. This morning I woke up in the 90s. I usually always wake up between 70-100. The “nutritionist” initially put me on a diet of 60 grams of carb per meal! That’s way more than I ate before I was diagnosed diabetic. I figured they know what they’re doing so I’ll follow the rules. Numbers went haywire. They had me eating breakfast cereal with blueberries, come on. As soon as I discarded their blueprint for what I should eat and started low carb the numbers fell right into place. I also realized that instead of 4 injections a day (yikes) like they said I would have to do, I cut that in half. The basal dose was inevitable but I realized that I could forego the bolus entirely if I cut the carbs out. And with Novolog a lot of time when it hits it’s peak you feel kind of woozy and hypo even if you’re technically going hypo. Without taking Novolog I don’t feel that way. As for the foolish that think insulin gives them a free pass to eat whatever they want, forget it. I work with a guy who has a pump and has the most atrocious eating habits of anyone I know and he is so stubborn he won’t listen to reason. He claims anything under 100 is way too low for him and he “needs” these carbs (bagels, muffins, cookies, grinders, all the worst diabetic foods) therefore giving him license to eat these foods. His swings routinely go from the 300s to the 40s and back again. No thanks. I’ll miss pizza and lasagne but I value my health and quality of life more. Jenny made a good point too with the fact that you can’t go overboard with the carbs because it becomes a guessing game you can’t win. A plate of ziti comes your way, how many carbs are in that? 80,100,150? Then you have to do your math to conclude how many units of insulin you need to cover it. Guaranteed youi’ll stay too high or crash. Then you don’t know how it will ride in your system later in the day. I’ve been doing the low carb low insulin method so far and it’s been successful (knocking on wood). My first A1C a few weeks ago the endo was very impressed with my 5.8 (next one I’m hoping for 5) and I told him about the diet I’ve been eating and he couldn’t really argue (though I was ready for him to) and said “definitely keep doing what you’re doing”. I am and glad so are many of us. Holding on to my remaining betas as long as I can!
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