Thanks for that insight… I have just recovered from an illness and am seeing numbers I have not seen since my onset at age 48 3 years ago. I just thought I was not exercising enough during the illness and it was catching up with me or the honeymoon was over. But reading your tail I’m thinking just up the long acting insulin and find my new groove on the fast acting and move on
I'm at approximately 7-12 TDD - 7 units Lantus and 1:30 Humalog - and this has been pretty constant since diagnosis of T1 in December 2011. My endocrinologist says sure, seems like some beta cells are still functioning and also mentions sometimes people can be extra sensitive to insulin and these are reasons I still have low insulin requirements. I don't identify with LADA because (a) I don't really understand it and (b) doctors assure me - you're T1. But your question caught my attention, Julez, and I've got to say it's pretty refreshing to read all these TDD's that are really similar to where I'm at. Sometimes I feel ridiculous fussing over a 1/2 unit injection.
Very interesting about the insulin effect curve and small units (I've not used more than 2u of Humalog at one meal).. thanks for sharing this experience.. I am motivated to see what effect an injection before meals has on my bg.
I was diagnosed 3.5 years ago, at age 50, 3 weeks after abdominal surgery. I had not experienced any symptoms prior to the surgery, and was in excellent health. Initially diagnosed as a T2, I started taking 500mg of Metformin, and went to a diabetes education program. The nurse at the program kept saying that the T2 diagnoses didn't make sense because of my body type and lifestyle. A visit to an endocrinologist confirmed the presence of anti-bodies.
With the Metformin, strict carb control, and a lot of exercise my bg numbers stayed in check. My A1c was around 5.6-6.0. The endo didn't want to start me on insulin as I was susceptible to hypoglycemia. Things were great until I got the flu (despite getting the flu vaccine). My bg numbers were all over the place. We increased the Metformin to 1000mg, which settled things again. But now I was starting to lose weight. My A1c was 6.0-6.4 for the next 9 months, until I got sick again. My bg numbers were erratic during the day, with the mornings being around 135mg/dl.
A medication change to Janumet 10/1000 in the morning and 500mg of Metformin at night corrected things for another 8 months. By now my weight had stabilized after losing 35 pounds. I was still training 5 days per week, swimming, biking, running, and weights. My apatite and energy levels were great. My A1c was hovering around 6.5.
This summer my sleep patterns started to change. I started waking every hour. I had to cut back on my workouts because my energy was low, and recovery from the workouts took longer. My morning bg was getting higher, closer to 150. My after meal readings included some 220's, and even a couple of 300's. I was thinking the honeymoon was over.
Two weeks ago my A1c was 7.1. After meeting with my endo, we decided to start NPH injections along with the oral meds. I'm currently taking 7 units at night. My morning readings have been good, 99-123. My daytime readings have been inconsistent, but mostly within range. I was 224 after lunch yesterday, but with a 15 minute run was back down to 140.
So, I guess this the start of a new adventure. In the past two weeks I've noticed two big changes. My apatite is much larger, and my vision in the morning is much clearer. I just hope my sleep starts to improve. I go for a follow up in a couple of weeks.
You are Type 1, and will feel better and better on insulin. It's unfortunate that so many of us are treated as Type 2's simply due to age (I was 58 at diagnosis). One suggestion. You might want to talk with your doctor about putting you on a more modern insulin regimen which is long acting basal and rapid acting bolus for meals based on an I:C ratio. NPH is an older type of insulin, which I am told, led people to have to eat according to a rigid schedule and isn't nearly as effective in keeping blood sugars in range. I would also suggest getting off the Type 2 oral meds. I highly recommend the book Using Insulin by John Walsh.
I was diagnosed type 1 GAD positive in October of 2011. Fasting bg 130 with an A1c of 5.7. The only symptoms I had was a lack of energy. I went to a low carb way of eating in November of 2011. In October of 2012 my A1c was 5.1 and my October 2013 is 5.4. I have never taken any diabetic medications or insulin. I am grateful for every day of insulin freedom.
Thanks Zoe! The profile of NPH seemed to fit my readings best, but I’m finding they are changing more rapidly now. I just changed my PCP because my old one kept forgetting I was diabetic. I hope there will be better communication. I’m not sure about my endo. Nice guy, but sometimes I feel he relies on my analysis too much. I hadn’t looked into insulin very much, probably hoping my honeymoon would last longer! Thanks for the recommendation!
Lab Mouse, good job! I hope you can extend your honeymoon for a long time.
I am LADA. When I first began insulin I took 2 units of basal a day. I now 4 years later take a total of 9-11 units of basal a day. They have settled here the past 2 years.
Great question! This is something I'm really interested in as well. I was diagnosed 2/2013 at 26 years old with A1C 5.4 and fasting 120 mg/dL. I was diagnosed after I stumbled upon and signed up for a TrialNet screening. Positive for 3 antibodies and failed two OGTT's. I've been taking 1 unit of basal and no bolus for the past year. I'm also doing low carb, maybe 40 g/day since it will keep me off bolus for the time being. Also, maybe (as according to Bernstein) low carb will tame the immune attack at least a little. Being slow-onset makes me feel like I'm walking around blindfolded and waiting to fall off a cliff. A candy cliff with insulin at the bottom. Or an insulin pump bungee-cord.
I was diagnosed with LADA March 2011. With hindsight I already must have had LADA for some 5 years. Over time my energy levels had gradually declined, wounds healed more slowly, didn't sleep well, sometimes blurred vision, etc. A few months before diagnosis I started loosing weight rapidly, stsrted getting very thirsty (> 3 litres/day). Unfortunately, again with hindsight, it took my GP too long to arrive at the diagnosis DM so I ended up at the emergency with BG 30 mmol/l and KDA.
I was put on insulin immediately. MDI regime: TDD 35: Lantus 18 ie and Novorapid on average 17 ie per day. Insulin did wonders for me. I felt so much better and so much more energetic and started realising what I had been missing in the previous years. Since summer 2012 with a pump (omnipod) my TDD has declined to an average of 30 ie. I am not taking any oral meds.
Overall, I am happy with A1c consistently between 6,3-6,5. Daily readings can vary sometimes significantly mainly because it's hard to take so many factors into account that influence BG ( for me: type of food, irregular meals, exercise, travelling etc).
I call myself late onset type 1 but I had symptoms on an off for about 2 years before a rapid progression to dka. I also feel type 1 have it in some form their whole life as I was told at the faustman lab and since I've noticed carb sensitivity my whole life. I also had hypoglycemia long before D. My basal has reduced a lot since dka. It was 28 when I got out of the hospital and reduced to now 9 units levemir in a split dose. I take around 10-15 units novolog depending on how many meals I eat, what I eat, and what my bg etc. is when I bolus. My needs seem to be decreasing overall and I seem to be very insulin sensitive for the most part and very sensitive to activity also. A really bad low made me decrease basal by two units recently, and I may try decreasing even more soon. I think I still have beta cell function because I seem to lower on my own now after meals without a correction often, but my last c peptide measurement was lower. I have to say I do not feel that great on insulin.. I feel very fatigued a lot of the time. But I do feel better overall than when I was going into dka.
I'm really interested in this idea of what is going on with "late onset type 1s". I also struggled with hypoglycemia for at least 15 years before my Type 1 diagnosis (at age 28). In fact, I was already in the habit of carrying fast-acting sugar sources with me when I worked out after dealing with my own "lows" for years before identifying diabetes. (I had done the glucose tolerance test a couple times as a teen with no concerns for diabetes other than the hypoglycemia.)
I've read some informal (internet!) stuff about Reactive Hypoglycemia, an apparently prediabetes condition where a person can have a slow first phase insulin release but intact second phase: "After eating a large carbohydrate-containing meal, if first phase insulin is slow, the glucose level will go higher than usual. This results in a very large stimulus to release insulin but the insulin output may be too late for the peak glucose level, causing the blood glucose level to drop quickly to below normal levels."
Do you know of any articles that talk about this theory that Type 1s have had some form of diabetes for their whole lives?
No I don't know of any articles unfortunately. I will look and see if I can find any on this. That sounds like what may have been happening to me. Except at that time I was very active, even more so and I would often go for longer periods and not eat enough at times. I didn't keep careful track of when the lows occurred and if they were directly after meals, they weren't always after meals or high carb meals etc. I had the habit of snacking on several small meals a lot because I was active and frequently hungry, so it suggests we aren't every really getting all the nutrients we need maybe or something like that. I remember one time I tested I don't think I had eaten anything for quite a while and I got two readings of 38 & 39. My symptoms were dizziness, light headedness and general weakness. I went to a website for hypoglycemia which I can't find anymore and people told me to eat some protein and carbs which I did and my bg quickly went back to normal.
I was already thinking we have it our whole lives before someone told me that at the Faustman lab, so I thought it was my theory, lol. I remember a b day party as a child where I ate lots of carbs, cake, ice cream etc. It was a sleep over party and I had terrible diarrhea and felt very ill and agitated.
My bg was mostly in the low 80's then when tested at the doctors fasting etc. and sometimes lower in the 60's even, so it was always lower range. I wanted to have a glucose tolerance test for years but for some reason I never did it. Nor did I do my own one at home. Wonder what would have happened?
It's interesting to me to hear these details of your history.. thanks for sharing :)
When I struggled with hypoglycemia as a "non-diabetic" in the past I was also very active as a high performance athlete with 13 training sessions a week during our racing season. I would carry a ziploc bag of jelly beans with me if we were out on a long run or paddle and my go-to post-workout snack was a baked potato! (Foods I don't see much of these days!)
Generally, I didn't often eat giant carb meals but I do have a handful of memories of feeling pretty raunchy sick after sugar binges at bday parties etc. that my family and I wrote off as maybe I was a little sensitive to sweets and don't lots of people feel gross after gorging on junk? There is a history of Diabetes (Type I and II) in my family so I guess that's why these hypoglycemic troubles were taken seriously by doctors who ran the bg tests and glucose tolerance tests, with no signs of Type I turning up.
I have a particular memory of hauling out an awesome old-fashioned pasta maker at a friend's house and having an enormous feast of homemade pasta for dinner, then going out to a movie, feeling nauseous in the theatre, standing up to go to the bathroom, and passing out after a couple of steps (luckily it was a paramedic in the audience who caught me!) - I woke up outside the theatre and promptly vomited. Looking back, I wonder if that was a serious low caused by the reactive hypoglycemia situation or was it DKA symptoms?? (Or simply the flu!) Who knows..
All things being equal, it seems fortunate to me that I was diagnosed with a bg of 22.2 mmol/L and a A1C of 9.5% and not later...
I have always considered myself to be Type 1, though since I got this 13 years ago in my 30's, that would make me LADA.
HbA1C when diagnosed: 13.2, fasting bg: 225 I had gone into the Dr. once my weight dropped below high school weight. They tried to put me on Glyburide (sp?) to force my pancreas to work harder. The only way to stay below 200 on that was to live on a treadmill for 3 hours a day. I thought it was stupid to make a damaged organ work harder, so I went on insulin. Originally Humalog and Humulin. Tested for the GAD antibody and it came up negative.
Currently on Lantus (15u/day) and Humalog (1u/30 carb g). HbA1C: 5.8-6.3
Over the 13 years my insulin needs have been fairly stable. Not a lot of change.
I do still have some function in the pancreas. Every once in a while I can have a meal with no insulin. Not often, but it happens. I usually have a string of unexpected lows, then a meal without insulin, then back to the usual. Maybe once every 3-6 months. Peptide test came back negative, but it was also 5 months since my last episode.
Exercise is key. It makes control easier. If I get lazy the control is harder.
At age 42 my A1c was 11.5 the year before my A1c was normal. My doctor started me on multiple injections right away and the dosage was so small I almost didn't need insulin for lunch(1:22). Twenty-four years later my lunch ratio is 1:8. My TDD are between 20-28 units. Periodically through the years I would notice my BSs would rise and stubbornly stay high that's when I changed my ratios. My BS rise seems to occur in the early fall. My C-peptide is .03.
Sorry I never replied to this A. Yes it is very interesting that a lot of of us have had hypos long before high bg and carb sensitivity- it can't be a coincidence imo. I on the other hand could eat a whole bag of candy and have no reaction other than sleepy, but maybe that was due to already type 1 stuff going on. I was not an athlete and never had much tolerance for anything like that but I have gone hours gardening to the point of exhaustion etc. at times. I had never passed out from my hypo events or felt close to it. Wow, I could go for a potato, lol. Nothing I felt felt like my dka, that was really a horrific experience, I have never felt so nauseous in my life. If you avoided dka you were lucky for sure :) There is no history of any D in my family. Only graves disease, asthma, ra and raynauds from what I know.
I also had the symptom of starting to wake every hour and having night sweats in my mid to late 20's. I wonder now if that had something to do with my D, it would seem so.
I was diagnosed at 30. Started with 7 units where I stayed for a few years. At some point I jumped up. Now I take between 18-28 units/day, depending on what I eat. It has been in that range for many years. I know I make no detectable insulin, as it was checked twice, once by new endo, once by a non-endo doc who did not believe I could be T1 b/c of my age of onset.