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.

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Keep in mind that "what the heck?" moments happen to long-time T1s, too. A meal that typically "works" with the insulin dose suddenly causes a low or a spike. Sometimes you just can't figure it out. That's why it's important to keep track over the long-term and look for patterns, not worry about just one or two readings.

Why does it happen? There are so many reasons: carb miscounting, timing of insulin dose, the mixture of foods in the meal, exercise earlier in the day, stress. This is what makes diabetes so very, very complicated. It does help to hear we're not alone, however!
Hi Kelly. You're definitely right about that. Even what seems predictable, sometimes isn't. It's not like you can ever forget about being vigilant.

Tomorrow is my pump-start day and I'm still cramming. I thought I'd learned a lot about diabetes over the last 30 years, but I've been very surprised at how much extra I've learned in the last 2 months alone. I can deal with facts, but working out what on earth my body is doing (when it's not doing what it's supposed to), is sometimes beyond me! And that part of things drives me nuts!
Drives me nuts, too! Best wishes as you go on the pump. My pump wasn't a magic "in control" tool, but it has taught me much, much more about the complex interactions of insulin, food, activity, stress, and my body.

In case the trainer doesn't tell you, one of the biggest helps I found was that it doesn't work for me to bolus and immediately eat. That's what I was told about pumping, which seemed such an advantage over the 30 minutes I had to wait after an injection. I've found I still need to wait 15 minutes (unless I'm really low) before taking a bite to get the best post-meal blood sugar results. And don't be alarmed if numbers are higher than you like at first. They will come down, once you get all your basal rates set (I have a regular basal rate, an exercise basal rate, and am trying to figure out if I could use a special rate right before my period). Also, definitely take the time to basal and bolus test--and you may have to continue to do so several times a year.

Can't wait to hear how pumping works for you. Are you getting a CGM, too? That's my next diabetes tool!
Hi Susi: Congrats on getting a pump! I think you'll really like it. It has made a HUGE difference for the better in my life. I always recommend John Walsh's book "Pumping Insulin" as the best reference. For me, several things really matter. First, half the battle is getting good basal rates set. Then, I do a lot of exercise, so I find that really turning down my pump (for really intense exercise such as spin class, I turn it down 90% (so I am only getting 10% of typical basal) about 1.5 hours before spin class). Good luck to you! And Kelly, I recently added a CGM (Minimed Guardian), and I find it to be a good but not great tool (a great tool is the pump). I definitely can recommend it, but I think that the CGM is the "first generation" and I want the improved more accurate "second generation."
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.
Hi Sarah -

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 informative posts! : )
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?
Hi Susi -

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!
Hi EsMom! This is a general answer, so I'm not assuming you know or don't know any of this. Type 1s and Type 1.5s honeymoon. It's expected in both cases that the beta-cells will eventually be unable to produce insulin. In Type 1s the honeymoon is relatively fast - weeks to months to a year or so. In Type 1.5s it's often much longer (80% are insulin dependent by 6 years), but that entirely depends on what stage in the process the diagnosis is made. The defining factor is the antibodies that will eventually destroy the beta cells.

There are so many different types of Type 2s it's hard to generalise, but in classic Type 2s, those antibodies present in T1 or LADA (1.5) aren't present on testing, and it's a case of insulin resistance and the body having to produce loads of insulin to regulate the blood glucose. This can possibly (but not always) lead to beta-cell burnout, but it's a different process.

And here's the answer to your question... kinda... for people who don't know what type they really are, I think it's important to find out. The treatment is different, depending on what type you are.

If I'm reading posts on this forum, I always look to see what Type the poster is. That makes all the difference.

I'm NOT a doctor, so please no one take this as advice... It's just my humble opinion... my view is that drugs that make Type 2s produce even more insulin than they are already producing, aren't necessarily the best option for treatment.

Those drugs that target and reduce that insulin resistance would be my choice as well as lifestyle changes in terms of a lower carb diet and some exercise, both of which will assist in reducing weight. Again, let me stress that this is just my own opinion, and is for the classical presentation of Type 2s who are overweight and sedentary. Either of those lifestyles don't augur well for treating insulin resistance. The motivation to make those changes is what many Type 2s struggle with. But that's another story.
Correct, insulin resistance is ONE of the issues of Type 2. But decreasing insulin supply and decrease of incretin hormones (hormones produced in digestive system that tell the liver to stop sending out glucose) are also part of the problem.

Studies have shown us that once a person's blood glucose levels start to elevate over the 100 mg/dl fasting "normal" mark, that it can take 10 years for the diagnosis of diabetes--and damage has occured to the blood vessels and organs and the pancreas has churned out insulin during that time.

With type 2, even if insulin resistance is lessened by losing weight, regular physical activity, and a sensible eating plan, and possibly drugs, at some point down the road, the body won't make enough of its own insulin. (It's actually a MUCH more complicated disease than my own type 1).

There is much worry about beta-cell burnout from drugs that stimulate the body's own insulin production. But I still see too much resistance to going on insulin early enough in the progression of type 2 to do some real good.

I guess the bottom line is, if a person's A1C numbers aren't on target and the health care provider is urging insulin, don't put it off. If the health care provider is not urging insulin, ask why. Yes, weight gain is a legitimate concern with insulin. But the drug doesn't CAUSE weight gain. It only helps the body use excess calories the person is consuming, possibly turning them into fat rather than allowing the body to excrete them in urine. A daily calorie limit and some daily movement can keep weight in check.

And people (myself included) can lose weight while on insulin. A few years ago, my weight had started to crawl up. I went on a weight-loss plan and successfully lost 28 pounds--which I've kept off for 3 years. Yes, I do need to lose more, but I consider the weight already loss a real health victory.
Thanks Susi - that's great info!! I've had all the "gold standard" tests but they're still not 100% convinced I'm a Type 2, even though the tests do not point to Type 1.5. When i go for my next appt i think I'm going to talk to my endo about insulin because it looks like the general consensus is that it's the best treatment and the one thing you know for sure will work. Also, I'm sooo sick of my stomach being upset from the Metformin. The Januvia hasn't really bothered me much.
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.

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