I’m so frustrated. My BG was all over the place and I finally got a diagnosis in Feb of Type 2 (atypical type 2, thin, etc.). GAD and Islet cell negative. Started on Metformin - was working well for a few weeks then numbers started climbing into the 200’s again so they added Januvia which helped except a random high number ever now and then. BUT for the past two or three weeks I’ve been really careless about my health…missing my medication every day or so, eating more carbs than I should, etc. and guess what? My BG has rarely been over 100. So what the heck i that about? Was it all a complete fluke? My mom is a nurse and tells me that it’s not a fluke if I’ve had multiple numbers in the mid to upper 200’s at any time. My fastings are always good. My a1c is good (have my 3 month a1c today).
Anyone have any thoughts? My endo isn’t convinced that i’m not in the early, early stages of Type 1.5 which might explain the sporadic pancreas. He wants to check antibodies and such again in 6 months.
Firstly, forget what you see and hear in the news, thin and active at diagnosis is not really atypical for type 2, it just doesn’t get reported on. There is a sizable percentage of type 2’s who fit into this category, 20-25% is the estimates I’ve seen.
Anyway. Missing your medication for a day or so is unlikely to really do much. Neither januvia and metformin are rapid acting drugs, you need to take them for a couple of weeks for them to get going and then it could be another few weeks before they really get going, same thing when you skip them. Both will continue to work for a while even if you don’t take them, same things with avandia and actos. Drugs like sulfonylureas, byetta to a certain extent, prandin and starlix are the opposite. They are rapid acting and you have to take them every day or the y will do no good. When are you testing? What are you eating? How are you excercising? All these things will play a part. You may be seeing the sub 100 numbers but that’s not to say you are not going much higher than that and then coming down. Have you had your c-peptide and insulin levels checked? If so, where do they fall? Personally I think if you have had blood sugar issues and have seen numbers in the 200’s then there is little doubt that there is a problem. Simply put, it’s hard to get non-diabetics to spike up to 140 and even then it’s for next to no time. The only study I read that they got this to happen was to use large amounts of IV glucose. A bad meal will not spike a non-diabetic to 200+
Yes, I know there’s a bigger group that most think that are type 2’s and thin. It’s not the norm, but it IS more common than most think.
I try to eat less than 30 g of carbs per meal and less than 10 or 15 for a snack. Sometimes I cheat though and lately my numbers have still been good. I check 2 hours after I eat but as I mentioned in my first post, I’ve been kind of careless lately and sometimes it’s at the 3 hour mark when i check. But, even when i do remember to check at 2 hours I’ve been at 100 to 110 consistently for the past two weeks.
I haven’t been exercising as much lately but I’m still pretty active - I work at a desk but I do move around a lot, play outdoors with my daughter, etc.
I don’t remember what my c-peptide was but it was on the low side of the normal range but my BG at the time was 76 so he said it was “normal” for that BG.
As my doctor says, it’s just “par for the course” with me because nothing with me is “typical”. : )
I would suspect 1.5… not everyone with a classic presentation of T1 has antibodies, and it would make sense to think that could hold true for 1.5 as well. Usually the distinction between T1 and T1.5 is the presence of GADA, but not ICA… GADA alone seems to represent a much slower process of beta cell destruction than when combined with ICA.
I spent a few months being misdiagnosed as a T2, and during that time I had a very wide range of BG levels (from near normal to weeks of 300+), tried a variety of oral meds with mixed results, and was even off everything for a short stretch when I switched doctors without exceptionally crazy #'s. It’s part of how the honeymoon process works. I would honestly suspect that’s part of what you’re going through now - a lot of T1/T1.5 go through that, because it can for a while almost seem like everything went away. Unfortunately, it doesn’t last.
I was originally diagnosed without DKA or any of the truly “classic” symptoms of T1, so everyone just assumed I was probably a latent T2 because I was pregnant, and diagnosed relatively early in that pregnancy (more than 2 months before the typical glucose screen). It wasn’t until several months after I had my baby that I found a doctor willing to consider the possibility I was a T1 (the one I saw immediately after my pregnancy flat out told me there was no possibility, I was just wasting her time arguing, and I needed to give the oral meds more time to work - I strongly believe if I had stayed in her care, I’d have ended up in the hospital!), though in my case my antibody tests my new doc did were VERY positive, so there wasn’t really any questioning it. That was 11 months after my initial diagnosis during my pregnancy… so almost a year to get the final ruling on just “what” I really was. Not that it really mattered, all I really wanted was for someone to tell me it was okay to use insulin - my prior doctor had actually yelled at me for “self-medicating”!
Waiting for medication to work. I was told and I think the doctor was serious that the avandia needed 1 year to work (it never did). Think about this! You wonder if one was put on insulin promptly if this would prevent the beta cells from being totally destroyed?
I’m so glad to hear someone with a similar story! I’ve come across a few people that have up and down numbers but no one that has several weeks of highs and then completely normal numbers for a while like you and I. Makes me feel Iike I’m not completely going insane. : ) Did you have any problems when you started insulin since you had a pancreas that would kick into high gear sometimes? I worry about that. I used to want to be on insulin because I felt it was better for my body and better in the long run (plus, Metformin makes me feel horrible). But when I have weeks like I am right now with normal numbers I worry that insulin would make my BG crash during these times.
I dunno Anthony; what ifs are so painful to think about. Maybe it would have prevented your beta cell burn out but not necessarily. My good friend was put on insulin and Byetta right after being diagnosed with T2 last year. She’s takes over 100 units of basal insulin daily and is still very insulin resistant. Here I am, having good success with a low carb diet and exercise plus metformin. I remember that your body can’t tolerate metformin and I’m thinking that you were pretty active when when you were diagnosed with D. Maybe insulin plus a low carb diet would’ve helped you alot.
I didn’t say but I’m very much like you except a little younger. I’ve tried pretty much every class of type 2 drugs, they all worked for a week to a few months and then my blood sugar went up. I started insulin in November and now take a few units of humalog at meals and 6 of lantus per day. I do have issues with crashing fr no explainable reason. A meal that would leave me at 100 normally may leave me in the 40s after an hour from time to time. You just have to take each day as it comes and keep getting tests done until something sticks. I still don’t have an official type other than type 2 for now and its been over 2 years.
I am very new here, someone from Yahoo groups recommended your site and I find it full of good info. I am like you guys. They say is she type2 or 1.5? honeymoon? I am thin, 53 but have lots of diabetes in my fam. I have been on a very tight diet since Christmas eve, and just recently started “splurgeing”. I LOVED it. My numbers were FINE, I was shocked. I was doing alot of walking during that week which may have explained it.
So, I just cheated again with a hamburger and fries and was at 184 at 2 hours. Looks like it has caught up with me. I sympathize with your situation, and appreciate those above who have offered advice. It applies to me. Best of luck to you in this adventure.
Many Type 1s after diagnosis go through a honeymoon phase where the pancreas still produces insulin - whether sporadically or on a sliding downward scale. Could be weeks, months or maybe a year (not sure about the longest time in young T1s).
In Type 1.5, this is even more evident with about 80% insulin dependent by 6 years but in the beginning of the disease process, there’s often no insulin dependence and no presentation as DKA. Your endo is smart to come to the conclusion that he has, and retesting in 6 months is the way to go, unless you find you go consistently high at any point in time. At least he’s not saying T2 and sending you away with a bunch of meds and hoping for the best.
Many people over a certain age have some insulin resistance, which is why early enough in Type 1.5 the T2 meds appear to be working. They just don’t continue to work over a very long period.
I’ve never seen it mentioned but in other autoimmune diseases, despite antibodies being present at diagnosis, the antibodies aren’t always present all the time of testing. Conversely, the presence of antibodies doesn’t necessarily reflect disease activity. Maybe this is also true for T1.5?
EsMom: Regarding Duncan’s suggestion that thin Type 2’s are not atypical, the fact is that thin Type 2’s ARE atypical. If you do antibody testing on those “thin Type 2’s”, the majority are antibody positive and have late onset Type 1 autoimmune diabetes (Type 1.5, LADA) and have been misdiagnosed. This has been shown in many scientific studies that use antibody testing as the gold standard for diagnosing Type 1 immune-mediated diabetes.
If in fact you have late onset Type 1, the earlier you get on insulin (even at low doses), the better your outcome. Best of luck to you, I encourage you to stay on top of it.
I always had a lot of lows on insulin until I started pumping… but MOST of my problem was that while I was honeymooning, my basal needs varied a LOT during the day… NPH was a nightmare, and when I switched to Lantus shortly after it came out, I had a very hard time bringing my fasting #'s down without crashing pretty bad later in the day because I needed much less basal in the afternoon and into the evenings then. Now that I don’t make any insulin on my own my basal needs are not quite as volatile.
Once I started pumping I rarely had serious lows… and my insulin needs increased a few months later which pretty much signaled the end of my honeymoon. If I had a site failure my #'s would shoot up into the 400’s or higher pretty quickly, not just the 200-300 range I’d gotten used to. It was weird, like all the sudden I just “knew” it was over… and when it happened, it was pretty quick - maybe over a week.
Oh, and I should add, that you quickly learn to adjust insulin doses while your needs are changing, so it’s not like you’d be stuck on a rigid schedule of “Take X amount no matter what” - the beauty of insulin is that it’s flexible, and you’re in control.
That sounds crazy to me… to wait a full year. I could see maybe a month to 6 weeks to see some improvement, with the full effect taking longer, and it may be that I was impatient, but with #'s as high as I had been having (a lot of 300+, and I was nursing at the time, which lowers BG, so I often wonder just how much higher I may have been without that), I really didn’t want to risk my health with a “wait and see” approach. I had been on insulin through my pregnancy so I wasn’t afraid to use it… so to me it really didn’t seem fair to be told “no, don’t take any” when it was literally the only thing that would or could work for me.
The kicker? That doctor wanted me to WEAN my baby so we could try other oral meds. That was really what clinched it for me that I had to fire her and find someone else. Sorry, but it wasn’t going to happen when I knew there was something that worked and was safe.
It’s frustrating, isn’t it?! I had a hot dog and half a cob of corn tonight and I was at 87 at 2 hours! And next week I could be in the 200"s after a meal like that . I just don’t get it! How are you being treated?
Out of curiosity, how did you originially get diagnosed? While you were pregnant or before? Did they find it by accident or were they looking for something since you said you didn’t have some of the classic symptoms. Also, how long between the time you were originally diagnosed and when your honeymoon ended?
Thanks for the info! When I read about the honeymoon I mostly hear that it comes about after a diagnosis of Type 1 and after a few weeks on insulin. But from what i read on the forum it appears a lot of people are “honeymooning” before they’re put on insulin. Or perhaps it’s just that they don’t know yet if they’re Type 1, 2, 1.5, etc. Do you have any thoughts or anyone else?
Thanks, Melitta! I so wish it was more black and white - it would make things a whole lot easier! : ) I’m almost ready to risk the potential lows I would probably have on insulin since some weeks my BG is better than normal because the Metformin really tears up my stomach and I’ve been on it for almost 4 months (on Januvia too). I’m sure this sounds silly, but i feel weird asking for insulin when sometimes my numbers aren’t bad AND all my antibody tests are normal. I kind of feel like it might be overkill. It’s such a guessing game!
With Type 1.5 I don’t think you would call it a “honeymoon” when they are maintaining on oral meds. Type 1.5 is also known as LADA which stands for Latent Autoimmune Diabetes in Adults. It sets in more gradually than true Type 1. The attack on the cells is more gradual so we continue producing some degree of insulin for a period of time that can be around 1-4 years average. My understanding is that the oral meds that are designed to work on insulin resistance do us no good. (So I spent $200 a month on Actos for no reason at all because I was misdiagnosed!). But other oral meds that work differently do work until our insulin production dwindles.
Zoe, In LADA or T1.5, I’ve only ever heard it referred to as “honeymoon”. While it’s usually a rather lengthy one (years for some), the process is still the same as in T1. I’m not the one who has named it so… I’m seeing it in literature, so I’m just copying what I’m reading. Until they come up with a better name - I think ‘honeymoon’ has to be it for me.
