As probably many of you LADAs know, Dr. Bernstein writes in his famous book Dr.Bernsteins diabetes solution about the indefinite preservation of remaining beta cells.
I quote: " Based upon my experience with a fair number of type 1 diabetics I 've treatedfrom 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 carb diet, the remaining capacity of the pancreas, I believe, can be preserved."
Now, when I first was diagnosed with LADA about 6 months ago and read this, I was very excited. And since then, have been trying very hard to do exactly what he recommends, I inject when I need to and am on a low carb diet. But even so, I certainly don't achieve his recommended goal of "keeping BG around 85 at all times" (I mean, HOW ON EARTH???)
I have been reading about so many cases/stories of LADA since, and NOT ONE seemed to have accomplished what Berstein claims – the beta cells just seem to give up, sooner or later.
I feel almost more frustrated at the thought that there is this theory out there, and if I tried REALLY REALLY hard, I could maybe protect my remaining beta cells, but in practise it is just not accomplishable.
I would like to know about other people's experiences and thoughts, and if there are actually people (apart from Bernstein himself) who have seen this work – over many years.
Thank you for sharing!
It's a little funny, that those mentioned by Dr. B who have beta cell activity remaining, like to go around telling folks with less easy to control diabetes "You're doing it wrong".
And by their definition, if your diabetes isn't so easy to control, if your insulin doses aren't miniscule, if your bg goes into the stratosphere when you didn't even eat a dang Swedish Cracker (apparently the only allowable form of carbs, but here I'm talking about when I didn't eat anything at all!), then "You're doing it wrong".
I think there's some value in what Dr. B writes - lord knows his books that I found back in the 80's were much more broadly inclusive - but even today his books do contain tidbits of useful information, even for those of us who aren't hyper-insulin-sensitive and probably aren't making any of our insulin. You have to get past the "Dr. B's plan is the only plan that will work" and realize that there are nuggets of useful stuff in the book even though your D isn't as easy to control as some others.
Healthy beta cells can produce up to 20 IU per hour. In most people this capability will degrade but will stay on a high level for their whole life. For the diagnosis of T1 a significant amount of these beta cells must be gone - likely less than 30% of the normal mass will remain. Without the support of exogenous insulin these remaining cells will try to regulate the blood glucose alone. Of course the high production rate will exhaust the beta cells quickly. As a result many internal processes important to prolong the cell life will be neglected. Thus more cells will die than can be regrown by cell division.
It is not important if you eat low carb or not. It is important which level of glucose control you can reach. The right amount of basal insulin will relief the beta cells from producing all the time to cover the stream of glucose coming from the liver. The right amount of bolus insulin to cover the carbs will do the same. Even spikes after meals should not exhaust the beta cells. They have the capability to keep up with that. What they really need are longer periods of good control over the day to recover from their duties. However it does not need the radical Bernstein approach to reach this goal. Moderate carb intake and good coverage with insulin is good enough. Our quality of life is also important and is a source of motivation for us. A serious burn out after many years of low carbing could lead to serious control issues. It may result in several months of very bad control that can be much more harmful than eating carbs moderately. In addition I want to point out that T1 is a defect in our immune system. It is up to the immune system to stop the attacks on the beta cells. Eating low carb will not convince our body to stop what he has already started. It is in the nature of most autoimmune diseases that the reaction will get more massive over time. Thus most LADAs will develop to full T1 over time. Denise Faustmann could show that most T1 patients could preserve tiny amounts of their beta cells - even after many years. Future research will show if these tiny amounts are important for the prevention of complications and the achievable quality of glucose control.
Holger wrote; In addition, I want to point out that T1 is a defect in our immune system. It is up to the immune system to stop the attacks on the beta cells. Eating low carb will not convince our body to stop what he has already started. It is in the nature of most autoimmune diseases that the reaction will get more massive over time. Thus most LADAs will develop to full T1 over time. Denise Faustmann could show that most T1 patients could preserve tiny amounts of their beta cells - even after many years. Future research will show if these tiny amounts are important for the prevention of complications and the achievable quality of glucose control.
I do so agree, Holger. If I can afford it, I am going to try to go back to Boston to the Faustman Lab at MGH for a blood donation this year. (Will check out Nantucket , this time)
I don't know if the theory is true or a myth however to me, they don't matter. The only thing to worry about is what my BG is and "aftermarket"/ injected/ pumped insulin seems to work just as well as the indigenous, "homegrown" insulin. In fact, it may work better, since it's easier to measure and deal with!
Huh? Injected insulin is better than endogenous? Easier to deal with?
I suspect that injected insulin is easier to deal with and that the main goal should be keeping control of your BG. I don't recall seeing anyone posting links to any studies showing that people with *more* endogenous insulin have been shown to have had better long term control or anything like that. BG control is a balancing act and I'd rather know what I'm balancing than having mystery insulin on board muddying the waters/ blood.
The notion of preserving beta cell function seems to be cited fairly regularly and I guess I wonder what the allure of it is. The allure is normal BG by whatever means are necessary!!
From what I know, I think I disagree. A read A LOT about why it is preferable to have at least a little homegrown insulin left (and trying to keep it that way for as long as possible) for a number of reasons: Overall easier BG control, less severe hypos, less chance to develop DKA as well as less chances for long term complications...Correct me if I m wrong.
Wonder if there's any research. Would be problematic to design a study with subjects' differing levels of endogenous insulin. Even with a T1 producing some of their own, too many other variables in how they're managing DM.
Agree as close to normal by whatever means is the goal.
Given the choice, I'd rather take lower doses of injected & rely on some of my own. But, hear you on natural IOB.
Wish I'd been able to save my betas for the C-peptide.
From reports we hear of unexplained staggering lows (not the consequence of miscalculations), seems that some must have endogenous insulin that kicks in every so often.
I do not believe I ever had control over my beta cell destruction. I was 34 and was eating a low carb high protein diet when I started getting sick. I lost 35 Lbs (15kilo) in about 2 months and had pretty much stopped eating food for weeks when my wife finely talked me into the Doctors office. My BG was over 700, I was vomiting, and in DK. I was placed on insulin and used about 15-20u for about 20 years without any change and my C-peptide was (Undetectable at less than <.05 ). In my early 50's I was about 33 lbs (15kilo) over weight and my insulin requirements started to climb (double), I started cycling and lost the weight (Normal BMI), my insulin requirements did not drop and my Doctors said I was suffering from metabolic syndrome like a Type II, sometimes this happens to a Type I when we get older many of us live to be seniors now that we can test our BG with some degree of trust and make corrections.
I have never worried about how much insulin my body produces" (it's not enough )", my focus has always been on how much I need to inject. There are many indaviduls today through early detection that have not experienced DK and this may give them some hope and a chance to make a soft landing....but I suspect our destiny is unchangeable no mater which path we take.
I personally believe there are differnt types of T1 that we may not be able to currently identify. For some T1s, Bernstein's indefinately prolonged honeymoon is likely true, but for other T1s I do not think they will be able to. Bernstein has some great ideas that I follow in principal, but I am not disciplined enough to completely follow his concepts.
When I was diagnosed T1 at 50, the first book I read was Bernstein's. I tried to follow his wisdom and his recommended diet. Eventually I read a couple more books and found this site of smart, kind and helpful folk. I modified my approach to eating and gave up on maintaining a consistent 83 bg. (Bernstein claims to do so with no remaining beta cells). Striving for the nearly-impossible is simply not the quality of life I desire. I still think he's brilliant and never let go of the science he so clearly presents. I pay close attention to carbs and how they impact my dosing/control. I've set for myself a tight range (70-120) and aim to stay within that. It's much easier when I limit carbs (approx 100/day). I'm probably being helped along by beta cells at this point but, who knows. My endo thinks I'm obsessive and "too tight" but, I've recently given up caring about that. Preserving your health and preserving your sanity is achievable and more tangible than preserving those mysterious beta cells.
Same here although now I find it harder to eat low-no carb now that my honeymoon period is in decline. It's easier to eat carbs so I can take some insulin to deal with the high bs, but not go low. So crazy!