Insulin for the Honeymoon? Or not? What worked for you?

Type 1 and LADA
1

I know that there are a lot of threads at the moment about aspects of this question, so I apologize for another, but I didn't want to distract from anyone else's focus.

I'm a recently diagnosed GAD-positive Type 1/LADA, but was diagnosed early in the process. I am not on insulin yet. So far, with very low carb eating, my bg numbers are good.

Big apologies in advance to people who wish they had these numbers!! My fastings in the last month have averaged 91 with a range from 75 to 114. The average of all other (non-fasting) readings has been 99 with a range from 79 to 124. This is while eating less than 100 carbs a day. But a test meal--a small serving of oatmeal and a banana--sent my blood sugar up over 100 points to 205.

I would be grateful to learn what the experienced people here think. When would you start insulin if this were your situation? I really want to preserve any beta cell function I can, but I’m worried about lows if I try to start insulin because my readings now, without insulin, are sometimes in the 70’s. What have those of you who are further along in the process experienced? Advice and suggestions from anyone are welcome!

Thank you!

marty1492

2

Hi Marty! I saw that you posted in my other thread and wanted to let you know that I have an appointment with a new Endo tomorrow and will let you know what advise he gives me about insulin use this early on. I am hoping insulin won't be necessary right now but I too will do whatever needs to be done to preserve Beta Function for as long as possible. Can I ask how you were able to find out this early on about your diagnoses? I feel we are lucky that we were caught early but the feeling I got from my last Endo was that she didn't know what to do with me!

3

Hi Marty,
I was just diagnosed in Nov 2011 and so I'm not that much further along than you. My endo saw a lab report from my PCP that had an A1c of 6.7 on it and my endo ran with it and did further testing. I'm GAD and IAA positive. I did not go on insulin right away (I could've probably pushed for it but didn't like needles so I didn't) as I had good numbers by doing low carb diet and exercise for about 2 months. But if I strayed off the low carb diet just a little bit, I found my BG went up. Oatmeal was my nemesis and it spiked me like it did you. Bananas,too. At my 2 month visit, the doc saw that my fasting BG were still good but my meal time BG were rising so she put me on bolus (meal time) insulin only. She also took into consideration I wanted more flexibility with what I could eat because I also have gastroparesis which restricts some foods so my diet was pretty limited. She told me that since my fasting numbers are good that I don't need basal insulin yet because it might send me low. The hard part about LADA, to me, is not the testing, not the low carb diet, not even taking bolus injections, but it is the feeling of "when is the other shoe gonna drop" (meaning when is my pancreas going to crap out completely) and nobody can give me (or you) a definitive answer so you are always waiting for it to happen.

I still have tons to learn and you can find a lot of help on TuDiabetes. Members are very friendly, supportive and helpful. Diabetes is specific to each person so what might work for them, may not work for you. Ultimately, you need to do what you feel is in your best interest. I wish you luck in your journey.

4

I talked to my endo yesterday about my situation. Basically, from what he has said, and what I have gathered, it is all about personal preference. If you can handle the low carb diet, then by all means go for it, because unfortunately you are going to be on insulin forever, so why not enjoy a few months (or years fingers crossed) without it. Me, I am going to use a combination of the two. I am going to go without insulin, but I also realize this is the time when we can be the MOST flexible with what we eat, so if I feel the urge to splurge, I may just take a small bolus with that particular meal.

Someone may help me out here, but I don’t understand the whole “saving beta cells” thing. I am an algebra 1 teacher, so I may be looking at this too analytically, but if you are being pretty watchful of carbs, does it matter if you take insulin or not? For instance, if you can handle 50 carbs no insulin, your beta cells work however hard they have to to handle that amount of carbs. Now if you eat 100 carbs, and you bolus for the additional 50, those exact same beta cells should be working at the exact same rate, correct? In this scenario, if you bolus for 50 carbs, when your own body can cover that, won’t that in turn make you go low? Again, please someone tell me if I am wrong, but if you keep your fasting sugars normal, and your pre and post meal sugars are in good ranges, whether you use insulin or not the beta cells you have remaining are going to work right, or does our own pancreas able to sense the artificial insulin, and in turn, turn itself off, thus preserving insulin? I just don’t think it’s the latter, because even when I was bolusing .2 units, I always went low. When I stopped, I didn’t.

Again, I believe it is personal preference on how you want to diet, at least that is what I am going to do. Eventually we all wind up in the same place…

5

Thanks, Benjamin!

And that's one thing I'm wondering about, also. And your example is great! It led me to go back and reread Dr. Bernstein's section on the Honeymoon Period.

I know that not everyone here at TuDiabetes is a fan of Dr. Bernstein’s approach, and I’m not trying to touch off any controversy about that. Dr. Bernstein really believes in treating as early as possible. And I’m quoting what he says about the Honeymoon Period because I found it a helpful explanation.

“The normal human pancreas contains many more insulin-producing beta cells than are necessary for maintaining normal blood sugars. For blood sugar to increase abnormally, at least 80 percent of the beta cells must have been destroyed. In early type 1 diabetes, many of the remaining 20 percent have been weakened by glucose toxicity from constant high blood sugars and by beta cell overwork. These beta cells can recover if they are given a rest with the help of injected insulin. Even if they recover, however, they still must work at least five times as hard to match the job of a normal pancreas working at 100 percent capacity. Eventually, with conventional treatment, this overwork helps cause them to burn out.

It is now believed that high blood glucose levels are toxic to beta cells. Even a brief blood sugar increase after a high-carbohydrate meal may take a small toll. Over time, the cumulative effect may wipe them out completely.

The autoimmune attack upon beta cells, the presumed cause of type 1 diabetes, is focused upon several proteins. One is insulin, and another is GADA, present on the special vesicles—or bubbles—that are formed at the outer membrane of the beta cell. These vesicles contain insulin granules. Normally, they burst at the surface of the cell, releasing insulin granules into the bloodstream. The more vesicles created when more insulin is manufactured, the greater the autoimmune attack upon the beta cell. If less insulin is released, less GADA is exposed to attack.

Based upon my (still quoting Dr. Bernstein) experience with a fair number of type 1 diabetics I’ve treated from the time of diagnosis, I’m convinced that the honeymoon period can be prolonged indefinitely. The trick is to assist the pancreas and keep it as quiescent as possible. With the meticulous use of small doses of injected insulin and with the essential use of a very low carbohydrate diet, the remaining capacity of the pancreas, I believe, can be preserved.”

Quoted from Dr. Bernstein’s Diabetes Solution, p. 103-104, Little Brown, 2011.

marty1492

6

Thanks, LASmith, for your description of your own situation! It sure is a challenge to deal with!

Marty

7

So Marty, he is basically saying, a little insulin will keep the attack off for long, correct? But what happens when that little insulin makes one go low? Even if my lows are only in the 60’s, I get paranoid, checking my cgm and eating tablets one at a time to try to fight that little tiny bit of insulin. I just don’t know if that is worth it. If I could inject a bunch of insulin, and my pancreas realized, “Hey, he just injected a bunch of insulin, I am not going to put out any,” then that would be great! But I feel, like when I put out a little insulin, my pancreas does to. Therefore I go low, and by his research, my pancreas worked just as hard as if there was no insulin, therefore it was attacked all the same, insulin or no insulin.

I’m just tired of focusing on what saves what, and I just want to do whatever it takes for me to have normal levels, without going high or low, and I will do that until they burn out, whenever that may be…

8

I think there is a bunch of evidence that elevated blood sugars (> 140 mg/dl) can start to be toxic to your beta cells. There is a lot of evidence that most T1s don't ever lose all their beta cell function (with T1) and that you can have better blood sugar control if you can preserve some level of beta cell function.

If you can just use diet and exercise to manage your blood sugars (< 140 mg/dl), then that is great, I would keep it up. In my case (diagnosed as T2), even with strict diet and medication, I could not keep my blood sugar under 140 mg/dl. My doctors wanted me to wait until I basically lost control of my blood sugars before starting insuin, I chose to make my own decisions and start insulin early. Almost 1.5 years later I am very happy with my decision. You don't need to use insulin in a full regime, you can use it only for meals that raise your blood sugar too high. Or you may do fine just with a basal or bolus. But I do think it is important to avoid letting your blood sugar run high.

ps. Without insulin, I never would have been able to eat oatmeal and a banana and hope for a reading under 200 mg/dl.

9

Hi Benjamin,

I know it's really frustrating! We certainly didn't know how good we had it before this appeared! I don't know the answer, either, about tiny amounts of insulin.

I really, really sympathize with your feeling tired of it all! I'd be grateful if you post in the future about the solutions that you find that give you the most even control.

Thanks for your responses!

Marty

10

Hi Marty,

I've been diagnosed as pre-diabetic for the last 3 years now and my numbers really haven't changed. Fasting is 81-104, a1c hovers around 6. I can usually keep post meal numbers below 140 at one hour and certainly 2 hours but I do walk for at least 1/2 hr after most meals and that helps keep them in line. I'm currently low carb (approx 30-50 per day) and this is the only way I can maintain these numbers. If I had 50 carbs in one meal without a walk I would be in the 200-300 range at 1 hr.

I have decided for my next blood work/Dr visit I am going to demand to see a specialist. My current Dr has denied this in the past because she feels everything is under control. I just find it hard and exhausting sometimes keeping up with all of this and sometimes just want to have those extra few carbs without going past 140. I think its time for insulin just to cover post meal spikes as morning numbers are good.

I have no problem starting insulin because I think besides trying to stay healthy quality of life is also very important and the way I've been eating lately (for me) I just don't enjoy it: there's only so much eggs and almonds I can take :(.

Paul

11

I understand totally! In my humble opinion, I think taking insulin in that case is like anything else. A normal person can't splurge ALL the time, but if you wanted to every now and then, and take a little insulin, Just remember that when using insulin it is easier to gain weight, but I think if you keep your exercise at a moderate level, and don't rely on insulin to cover 100 carbs per meal, you should be fine.

12

By normal I mean a person without diabetes… Bad word usage.

13

I'm 6' and 153 lbs... I've jogged/walked/cycled for the last 20 years and have always considered myself healthy (resting heart rate of 54bpm) so gaining a few pounds would actually be a good thing for me as I've wanted to reach 160 lbs for the last few years now but with current low carb I seem to just lose weight...

Yes, every now and then I would love to have that piece of cake, or that sandwich with, yes, bread... I havent had a slice of pizza in 3 years :(

14

Have you ever tried low carb versions of bread and pizza? I was like you for about two years of never eating rice, potatoes, pizza, pasta or bread. Now I make my own versions of these things using almond flour, coconut flour and vegetables. You can have pizza, cake and bread...just try doing it in a low carb way. It's really good and blood sugar friendly!

15

Hi bsc,

Thanks so much for your response! And I can imagine that the bg levels that I’m talking about here would seem tiny to you as a Type 2. I also really respect your thorough knowledge and your independent-mindedness that led you to start insulin on your own when that seemed like the healthiest thing to do.

If you were in this sort of early Type 1 situation, would you wait until you regularly had readings over 140 before taking insulin? Or would you try to do something sooner?

Thanks again,

Marty

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Sorry folks,
I haven't posted on here a lot yet and I don't know how to delete this posting mistakes!
Marty

19

Sorry, bsc, it probably wasn't kind of me to put you on the spot!

Marty

20

I think it can be hard to know when to start insulin. And that goes for doctors as well. The researcher Ralph DeFronzo suggests that by the time your blood sugar goes over 200 mg/dl 2hrs after a meal, you have lost more than 80% of your beta cell function (that is for T2).

Non-diabetics can produce way more insulin than they ever need, and when your blood sugar readings head south you have already lost most of your beta-cell function.

Again, the primary reason I have seen to recommend early insulin use is to keep blood sugar controlled under 140 mg/dl and avoid glucotoxicity. If 2hrs after 90-95% of your meals during the week you are still under 140 mg/dl, then there would not seem to be any reason to worry. If you have a banana and oatmeal and are 200 once a week, that is not going to harm you, it is sustained elevated blood sugars. And certainly some of your good control is due to your diet, but the goal should be to keep your blood sugars normalized, whether you do it with diet, exercise or insulin.