Hello everyone, been a while since I have posted here but need some of your thoughts.
I am coming up on 1 year in as a type 1 at the age of 57. All the tests showed I had the GAD Antibodies and C-Peptide below normal, Islet antigen was normal but according to my Endo at Joslin he said that is to be expected in anyone over 30 with type 1.
Type 1 runs in my family, 2 cousins have it but were both diagnosed as kids.
Here’s the thing…yes at the beginning my numbers were high! I was put on bolus and basal insulin and struggled for months to get things down. Then I quit my job (long story, bullied by boss) and since I have been home my numbers are amazing! My A1C is down to 6 and my monthly average is around 127. I tend to eat a relatively low carb diet and my numbers are so low I tend not to need the Novolog during the day. The only time might be dinner if I am having pasta or pizza etc (or God help me Chinese food!). I take 6 units of Triseba at bed.
I know I should be grateful I am controlled but I can’t help but wonder. I mentioned this to my endo the last time I saw him. Told him could it be wrong? He just shook his head and showed me the lab results again. My diabetes RN said she thinks I will probably always be well controlled.
I find it weird that now that I am out of work my numbers dropped. Does stress play a factor? Although, now that I am out of work with no insurance I have a stress of a different kind!
I am sorry to sound whiny when so many of you might be struggling but just wanted some insight.
My grandmother developed type 1 diabetes at the age of 56, so the disease can appear in late-middle aged people.
The destruction of pancreatic beta cells in all type 1 diabetics is not equal, and in those whose beta cells were less than completely devastated by the initial autoimmune attack, there can be a milder course of the disease characterized by the patient having an easier time in controlling blood sugar and avoiding hypoglycemic episodes. Perhaps this is your situation.
I’m a T1 misdiagnosed as T2 at 47. I was able to go many years without additional insulin. The amount of damage and the treatment necessary varies. When I was finally diagnosed withT1, I asked my endo “How can that be, after years without added insulin?”. He said “it happens”.
This, in combo with your test results, sounds like a description of someone in an extended honeymoon phase (which can happen with LADA), not of someone who doesn’t have diabetes. An A1c of 6 is great for a diabetic, but still above normal for a non-diabetic, and then consider all the things you are doing to get it that low. Stress absolutely can elevate blood sugars, and also, many T1s find that after they start insulin therapy, things improve for a while (honeymoon phase). You’re currently able to treat your diabetes with a small amount of insulin and by controlling your diet, which is awesome and enjoy it while it works—hopefully it will stay that way for a long time. You may slowly need to increase your insulin and use Novolog more consistently though, which if so, then that’s not a sign of having done anything wrong, just what tends to happen as more islet cells get destroyed.
It sounds very much like you are in the “honeymoon phase”. Your insulin needs will be low for a while as a result. It is good you are continuing to check your bg’s and adjust your doses appropriately.
The “for a while”… for a T1 diagnosed as an adult the honeymoon kicking in about a year after diagnosis, and lasting for months to a year, is pretty typical. It sounds like you are sticking EXACTLY to this timeline. But it can be incredibly variable when it kicks in and for how long.
Here’s the thing - not all endos recognize the honeymoon phase. I can tell you my docs knew about it 40 years ago but not all docs are equally educated on recognizing it.
Thank you everyone…I guess I just needed reassurance that this is real! I do consider myself fortunate to be so well controlled at the moment so no more complaining.
Wow! Stress! You bet it can drive blood sugar up or for some it can drive it down! It’s one of those things that todayit can go up and tomorrow it can go down. I am very surprised none of your medical team talked about stress. Honeymoon or no honeymoon, stress can be so very hard to control blood sugars.
Some people use exercise to help with stress, some use yoga, some use meditation or deep breathing. You will need to find what helps you as stress will never go away as you are learning, just a different type of stress.
Good luck and just realize this is an ongoing battle to make things work.
Stress, weight, DIET, exercise; they all play vital roles in glucose control. I’ve gone from around 60+ units a day less than 2 months ago, to average insulin usage of the mid 20’s. It’s solely because I’m dieting (ie, eating properly). I used to exercise more than I do now, but with having lost 18 lbs, and cutting out junk foods and large portions, I can get by with 1-2 units with meals instead of my previous average bolus over 5-8x that. I’m a T1 with no insulin production of my own. Oh, my basal is now down to 11.975, down from the usual 13.75 or a bit more, so not much change there, since I began losing weight.
You sound like you have the same type of diabetes that I do, if that makes sense. I was diagnosed about 2 years ago at age 41, but have had things well under control since. My latest A1C was 5.6. However, I can’t really take much credit for that. It’s mostly due to two things: the fact that my body still produces some insulin on it’s own, and the medicine I’m on.
At this point I don’t really like the term “honeymoon phase” because I don’t think it’s accurate or is applicable to me. My body still produces insulin, albeit a lower than normal amount. Things may continue that way for the rest of my life. Or maybe they will slowly come to an end over the course of a few years. Everyone who has told me it will end soon has been wrong. I hope it continues forever, but no one can tell me for sure when it will end. But a honeymoon phase it is not; it is just how my diabetes is.
The other thing that has helped keep my A1C in the non-diabetic range of values is a GLP-1 agonist. I have used both Truclicity and Victoza (I prefer Trulicity). These are generally type 2 medications and are not approved in the US for type 1 diabetics, but they have actually not been fully tested for use in type 1s and may be approved in the future. My endo thinks they are appropriate for type 1s, especially for people like me who still produce their own insulin. He felt that being on a GLP-1 agonist would help preserve beta cell function in my pancreas, thus extending my “honeymoon phase,” and so we gave it a shot. Prior to starting on them my A1C was 6.2. My first A1C after starting Trulicity was 5.4. Besides the GLP-1 agonist, I’m on 8 units of Tresiba and usually no more than 2-4 units of Humalog a day. But I really think it’s the GLP-1 agonist keeping my A1C this low. The other medications just help smooth out the rough edges (like with correcting or preventing highs).
Obviously a better diet, more frequent exercise, and less stress can help keep your diabetes under control. But I would also highly recommend talking to your endo about going on a GLP-1 agonist to help preserve your beta cell function for as long as you can. If you search this forum you will find other discussions of type 1s using Trulicity or Victoza.
At times I also doubt my diabetes diagnosis, but then I eat something that makes my blood sugar skyrocket, giving me a harsh reminder that I am indeed diabetic.
I was diagnosed at 50 – and I’ve been thinking the same things – though, in my case, after 5.5 years, the “party” is ending – my body’s own insulin has been diminishing since diagnosis at a fairly steady state – I think I still produce some small amount of insulin and, perhaps more under certain circumstances, but my diabetes management has become more difficult over the course of the last 6 months. My last A1c was also 5.6, but even that was with more effort than in the past.
Unfortunately, the additional tools you use won’t work for me - I manage to bring out the worst (side effects) in meds. I tried Victoza, for instance, and it helped! Yay! – for a few days, after which, the side effects kicked in. By the end of the second week, the side effects were still getting worse, while the positive effects were vanishing. I’ve had similar experiences with all other meds I’ve tried. So… my endo and I’ve agreed that I’m working with insulin only (via pump) and a CGM, and a lower-carb diet.
I, too, question my diagnosis from time to time, even after 5.5 years. And like you, @David48, I’ll get “reminders” that, yes, definitely diabetic - especially those things that happen that defy reason. (Like yesterday - BG ‘stuck’ on a high, despite enough corrections to put me in a call-911-level of hypoglycemia…)
I’m sorry to hear that your production of endogenous insulin is tapering off. I assume that will happen to me some day, if it isn’t already.
I definitely prefer Trulicity over Victoza due to the side effects. However, I currently live in Hong Kong and Trulicity is not yet available here, so I have no choice but to go back on Victoza. I don’t take the full dose though, only 10 clicks, so the side effects (mostly nausea) are manageable.
I saw on Diatribe that some new GLP-1 agonists have recently been approved for use in the US. It might be worth trying one of those to see if the side effects aren’t as bad.
Just want you people to know that I was a member of Beyond Type 1 for 4 days and decided to cancel membership as they deleted a message I put up about the C-peptide test that I had done after 19 years of being on insulin. They said the comment was “too medical” so I decided given the site is all about diabetes, if they prohibit the mention of medical tests then the site is totally of non-benefit to join as there is likely lots of misguidance on it. I have been T1 now for over 37 years and I highly resent the way I was actually turned into a diabetic by taking insulin. I had way too many serious lows. I understand it way more than a lot of people and so figured out how to drastically reduce insulin when exercising a lot which is the only way to avoid such lows
I resent that people are in fact turned into diabetics. There are way better ways to manage health than immediately putting people on insulin. ALL people should be educating themselves in nutrition to make up for the lack of knowledge of doctors and with added supplementation from the best of companies, you can keep yourself fairly healthy, but I kinow if I had the same knowledge I have now at the beginning I would certainly have continued the use of supplements and definitely used a low carb diet, but I would not have agreed to insulin, given what I know now.
So you are right to question your status. it still requires close monitoring as if you were diabetic. I sincerely recommend you look for videos by Dr Jason Fung to see what he has to say about this dilemma. He is exceptionally correct and has reversed some cases of diabetes in his patients.
So naturally you should avoid eating high carbohydrate foods and you could consider yourself pre diabetic so you never lose track of the fact that a lower carb lifestyle will be netter for you, but if you take insulin because you have been listening to someone who tested you after you had eaten in the past couple of hours, naturally you could have been higher than what some people think all people should be, but it is incorrect to say that all non diabetics stay within the normal range as they certainly do NOT. I tested two non diabetic men after a normal meal and they were over the range too. In fact my doctor asked me in 2010 if all the 4 adults in his family including himself were all diabetic as they ALL were above 10 mmol after a breakfast on a cruise. I reminded him that the Dr Bernstein book he had advised me to get years before and I have read 3 editions of that book says that insulin is released in two phases and the body has a normal amount to release based on your usual eating habits and if you are eating a much larger meal it takes longer for the body to make more to cover that larger meal, but that does not mean you are diabetic. If everyone were tested after an exceptionally large meal, we would be turning the whole world into diabetics and the drug companies certainly LOVE to do that. So realize that 50% of doctors by definition graduate in the bottom half of their class and who do you have diagnosing you?
The more new endocrinologists are trained, the lower the threshold for diagnosing diabetes in a patient becomes, since those doctors have to be employed, after all. The same is true for hypertension, where the rule used to be that a normal, non-pathological pressure was 100 plus the patient’s age for the systolic number, but now, everyone is being held to 130/80 so Big Pharma can sell more statins.
I agree with you about bad diabetes forums on the internet. Many condescend to patients and treat them like children, insisting that everyone stay stupidly happy, no one say anything scary, and that we all just exchange our favorite diabetes recipes and anecdotes. Those are the same sites that are usually pushing diabetes products, and they want consumers to stay in the right mood to buy.
Hi Janet. I wasn’t a member of this forum when you first posted, but recent replies brought this string to my attention, so I’ll respond now.
Your situation sounds very similar to mine. I was misdiagnosed as T2 at age 57, then rediagnosed as T1 (LADA) at 59 when I asked my GP to give me the various antibody tests and I tested positive for GAD. In the five years prior to my T2 diagnosis, by fasting blood sugar was going up 5 points per year, from 100 (borderline pre-diabetic) to 125 (diabetic threshold). In hindsight, this is evidence of my pancreas slowly getting worse, and I strongly believe that the GAD antibodies are still working to destroy my pancreas.
After diagnosis, I read Bernstein and other diabetes books, switched to a lower carb diet, etc. I am currently on 6U of Lantus for basal, and my insulin-to-carb ratio is 1U/30g AFTER the first 30g of carbs. By lots of BG meter testing, I figured out that my endogenous insulin can handle about 30g in a reasonable way, so I only bolus for meals larger than 30g.
I strongly recommend that you test regularly in a way that helps you monitor your condition. For me, I keep a running average of my morning BG reading, and when that consistently goes above 120 I increase my Lantus dose. I have had to increase it several times over the last year and a half, but the method seems to be working.
Information on treating LADA is pretty hard to find; all the formulas and methods assume no endogenous insulin. Since it looks like you have endogenous insulin, if you bolus for a (high carb) meal, the injected + endogenous insulin may very well handle all the cards by the 2 hour mark, leaving you with some remaining bolus which may drive you low. It looks to me that the problem is inherent in LADAs taking bolus shots. I address this issue by testing after 2 hours, and if needed have a snack to give the remaining bolus something to work on. Of course, YDMV (Your Diabetes May Vary).
