Just an update since my last visit to NIH in July when I was diagnosed with LADA. My A1c was 5.9 while eating the recommended 60 grams carbs per meal and 30 per snack for 3 months beforehand. After the appointment I reduced my diet to 25-30 grams carbs per meal. I just saw my family doctor on 9/29 and he was curious, so he did an A1c and it improved to 5.5! I see a new endo on October 22nd so I returned to the recommended 60 grams of carbs per meal diet on Wednesday. Now I am really confused because my post meal readings have been between 127 to 139, when I expected much higher. Also, my fasting readings have lowered to between 98-101 only since returning to higher carbs. Granted it has only been three days, but is it possible by resting my pancreas for three months that my tolerance to carbs has improved? I don't want to get my hopes up, but the results are encouraging. One thing that I noticed differently since eating higher carbs is that around the 45 minute to 1 hour post meal time, I have been literally falling asleep and feeling almost drugged until my alarm rings to take my blood sugar. The only thing I could think of is that I am peaking at 1hr or earlier. Should I not count carbs at all for the remaining weeks and eat a normal diet to test the effect further? I'm a bit concerned that I will be dismissed when I see the new endo and told to come back when my blood sugar gets worse. But maybe that's a good thing because it appears I can keep things under control if I restrict my carbs to under 30 grams per meal. What would happen if I continue doing that and rest my pancreas--will the autoimmune attack continue and will this delay the onset for years ? Thanks for any input and it's much appreciated!
Everybody is different. But I will tell you that a normal insulin response has two phases, the first phase releases "stored" insulin. As our poor pancreas poops out we lose the ability to store insulin, there just isn't enough. And it is that first phase which dumps a big spurt of insulin in response to a high carb meal. It may just be that you "rested" your system and at least partially restored your phase 1 response. Maybe it will keep up, but maybe it will peter out. Only time will tell.
LADA (latent autoimmune diabetes in adults) is a slow onset form of type 1 diabetes. Your pancreas still produces some insulin and that is a large benefit to you. Taking external insulin has probably given your pancreas some rest and may lead to better post-meal blood glucose. This will not last forever, but you may extend this residual function for many months, if not years. For most people, this capacity to produce native insulin will diminish over time; it's a function of the ongoing autoimmune attack on your pancreatic beta cells. You will not, however, "get better" in the long run.
As to your "falling asleep" symptoms, I would ascribe that to your body reacting to this new diabetic metabolism. Before you became diabetic your body maintained exquisite control of your blood glucose using insulin, glucagon, and other hormones. Your sleepy symptoms are simply your body's way of telling you that there's been a big change in your glucose metabolism. When you body gets used to this "new normal," you will lose those symptoms to a large extent. For me, I still get that "falling asleep tired" when my blood glucose is climbing fast. It's often my first clue that I missed an insulin dose or the insulin delivery has been impeded for some reason.
I'm a big believer of Dr. Bernstein's law of small numbers. That means that fewer carbs consumed means less insulin taken which leads to smaller mistakes. This is a big deal. Smaller mistakes on the downside means fewer and shallower hypos. That increases your personal safety.
I see diabetes as a disease of carbohydrate intolerance. We all have a certain threshold of carbs, above which we lose control of our blood glucose. It varies from person to person and for you, it appears you can still eat a significant load of carbs and maintain good control. This will not last in the long term. In my humble opinion, eating 60 grams of carb per meal (and adding 30 gram carb snacks) is not sustainable with good control. Maybe you are the exception, but not many are.
Eating 30 grams of carbs per meal appears to be sustainable for you. I would encourage you try to stick with that. When you start to ride the blood glucose roller-coaster, you will know that you're eating too many carbs.
With all that being said, if you are an avid exerciser, you may still be able to consume large quantities of carbs and maintain very good blood glucose control. That's another whole topic that some people here live. Good luck with your continuing journey!
good to hear your a1c got better!
I'm really curious what your endo will say..
I feel sleepy on an off during day, also have problems with concentration, several people told me this is definitely due to glucose levels fluctuating too much
I'm confused...if you were comfortable at 25-30 Carbs/meal, why in the world would you increase it to 60?
Plus, by doing it so soon before your next A1c will skew the numbers and the results will not be truly representative.
Because I’m trying to show my new endo the difference. If you look at my earlier post in this forum it will explain it a little more. I wasn’t comfortable at 25 carbs and was losing weight and constantly hungry/ irritable. I’m trying to get treatment and was told in July there is no treatment for early LADA.
I'm more conservative than Wil but there's wisdom in what he says.
OK, that make a little more sense. However, I don't think the A1c will be representative. Perhaps meter logs for the period of lower Carbs, vs higher Carbs would be a more effective demonstration.
I’m a little bit surprised to hear they diagnosed you initially with LADA at an a1c of 5.9… What were the circumstances surrounding the initial diagnosis and what tests, etc did they run?
They did a fasting glucose and C-peptide too, but it was the positive GAD antibodies. That and my hypothyroidism pointed to it being autoimmune. They said it was early stage.
I thought lots of people get diagnosed with low a1c? I was diagnosed with diabetes with a1c of 5,5% while hitting above 11mmol (200mg, I think) at 2h mark, and was later on diagnosed with LADA while still having a1c of 5,9% but positive autoantibodies
I guess we're the lucky ones in that view we don't get diagnosed because of ketoacidosis and rushing to ER...
I am type one lada, lantus only. Honeymooning 4 years, but I have to follow low carb and exercise daily to keep my honeymoon going. Low carb was tough at the beginning, but my body is used to it. You could add some nuts/avocado to your diet. They keep me satisfied, and I did eventually put on some weight that I needed when my body started to heal. There have been moments when I think, maybe I don’t have type one!! But I do!!! Good luck with your carb counting.
Thanks for replying! When you say honeymooning, does that mean because your readings are still just slightly elevated? I see you are on Lantus, which I think is long-acting insulin. I also see you are from PA like me and within an hour or so. I sent a friend request so I can message you a few questions, hope you don't mind :)
Bjm2363, in regards to your diabetes, I am the same as you, type 1 LADA, last a1c 5.6 on a 60 carbs/meal and 30 carbs/snack. I was dx in May 2014, when I ended up in the hospital, where I had a BG of 820 and a a1c of 15.3 That 60/30 carb plan seems to work well with me. I’m on the Omnipod pump and Dexcom G4 CGM. These help me greatly with my BG levels, I also exercise 5-6 times a week. I really don’t use a lot of insulin, only about a total of 16 to 18 units a day. The way I understand it we are in our honeymoon stage and by using the pump my Endo says it should extend me in the honeymoon phase. I can normally keep my BG to 140 or below about 85% of the time. I fasted for the jewish festival of Yom Kippur recently and my BG stayed between 90 to 100 the whole 24 hrs. For the fast I didn’t use my pump and I ate no food and I stayed level on my BG, with out any insulin. I was a worried if I stayed on my pump I would have went hypo. Sometimes I feel I could stop insulin all together and maintain control, but my Endo says my level BG wouldn’t last very long. The only rules for Diabetes is that there are no rules, it is as individual as we all are. I would like to friend you so we can keep in touch and compare what we are doing since we are so similar with our Diabetes. Best of luck.
Wow that was a high BG reading...glad you got treated! I am definitely in the early stages. My A1C of 5.5 was only with eating around 25 grams per meal and no more than 30. I was at 5.9 on the 60 grams. I don't take meds yet, but exercise 5 times a week and make sure my diet is healthy. I've been on the 60 grams only a few days and my fasting is beginning to creep up from 95-102 to now 110-115. I've been staying under 140 2 hours post so was surprised that my fasting increased already..guess I am peaking earlier. I accepted your request so we can keep in touch.
When you cut down on carbs, you have to replace it with something – either protein or fat. Protein can be converted to glucose, so moderation for your body size is key. So that leaves fat and lots of it. It will keep you satiated and you will not get “grumpy”.
Add butter to your veggies, avocados, cheese, cream, olive oil on your salad, fattier cuts of meat and you will notice a difference.
You will stop losing weight, get better readings from you meter and your lipid panel will improve!
Another update...I was at the new endo this afternoon. He basically looked at my information from NIH and concurred with them that I should continue to exercise and make the diet changes to see what effect it has on my blood glucose readings. It is confusing to me because he (like the other endo and my PCP) give recommendations that aren't consistent to what I've read. Since I've been back on eating a "normal" diet the last few weeks my average went up to 135 on my meter. He was impressed with the Glooko report I printed out to give to him and although my post meal numbers were ranging from 140 to 180's with a few over 200, he said they were relatively ok. My fasting fluctuates from 108 to 117 with a few 122 and 125. Since my numbers are still pre-diabetic he asked me to only check my blood glucose once a day and alternate when I take the reading each day. When my numbers are 250 or over call. In the meantime I should eat a large breakfast, a medium lunch and a light supper daily?? After 2 months I should send the readings, get bloodwork in Jan and then will see him in 6 months again. He ended the visit with if I have Type 2 then there are things to talk about and if it's type 1 then there is nothing he can do but treat it when the time comes. He did mention Metformin, but briefly so that's the plan for now. My husband thinks I should follow his advice and see what happens otherwise he won't take it seriously. I'm still processing what he said....
If I were you I would start recording the carb content of every meal and check blood glucose values before and 2 hours after every meal. This will help educate you as to how your body handles carbs. Testing only once a day will teach you very little. It'd be worth going out of pocket for this. These numbers should be a big help to the doctor, too.
I would want to encourage your current endogenous insulin production by keeping blood sugar levels as normal as possible, avoiding post-meal and overnight levels above 180. The endo instructed you to report every BG over 250. I'd report the 200+ numbers too.
You may be able to maintain good numbers by minimizing carb intake to less than 100 grams/day or so and see what numbers turn up. Adding daily 30-60 minutes of moderate exercise, like walking, would help. Walking after meals is a double bonus.
The Low Carb Dietitian's story seems similar to yours. I don't think she's taking any insulin. You may be interested in looking at her website. If memory serves me, she reversed slowly deteriorating blood glucose pre-diabetic levels by buying a meter and learning about her metabolism while limiting her carb intake.
Good luck to you.
I agree with Terry. For the life of me I don't understand why doctors take such a hopeless attitude. Whether you are type 1 or type 2 controlling your to normal levels will reduce the progression of beta cell destruction. The research clearly shows that high blood sugar levels destroys beta cells. Some argue that it starts at 140 mg/dl, but clearly if you are routinely going up to 200 mg/dl bad stuff is happening. The respected researcher Ralph DeFronzo found that by the time type 2s are diagnosed as fully diabetic they have already lost 80% of their beta cell function. And the same thing applies to T1/LADA. Why accelerate your honeymoon.
So I won't mince words. A random blood sugar test of over 200 mg/dl (sometimes they ask for a second confirmation) confirms a diagnosis of diabetes. Based on that you should be treating your diabetes. You shouldn't be waiting until you totally burn out your pancreas or end up in the hospital. You deserve test strips and should fell empowered to demand like 4 strips a day to learn to eat to your meter. And you should think about getting a different doctor. One who cares about your outcomes not one who only wants to work with uncontrolled diabetes.
I agree with Terry and Brian!
Alternately testing 1x a day is absolute crazy talk!
I would strongly urge seeing another endo, because this one would be better suited as a meteorologist who predicts the weather by looking outside once every day at alternate times.
You have had enough blood work to know something is up and your pancreas needs some help, right? Now, you need data, data, data. Record what you are eating and at a minimum test 2 hours after eating for every meal. Oh, and the endo should want to see that data daily if you are running over 200 for ANY readings!