Thank You, 100s of tudiabetes Posters (and a question or two)

Type 1 and LADA New to Type 1 Diabetes
1

Maybe this should be a blog not a discussion--I'm very much a newbie.

As for most of you, the DX was a shock. I didn't know what the glucose levels were supposed to be, so I initially thought maybe 363 mg/dl was within normal variability. Uh...no. It is a long story why I got tested
at all, after not seeing a physician for 20 years. Suffice it to say that the DX was 2 days before oral surgery to remove a wisdom tooth from my maxillary sinus (long story) and then teach a class in a subject I'm still learning, all very stressful. Fortunately (particularly given
the hair-raising "rapid onset Type 1 diabetes in adults" thread), I have a really good internist who first wanted to postpone the surgery, but then instead prescribed Levimir along with metaformin. Only after reading here did I understand that that is a wise strategy if T1/T2 status is uncertain. Also, before even finding this site, this guy suggested that maybe I had "type 1.5 diabetes", something that I had never heard of.

In short, I was in a state of shock, feeling that I had been metabolically castrated and crippled. My wife happened to be mostly traveling, my blood sugar wasn't getting lower--it was hopping all over the universe. I couldn't sleep. I know things could have been worse, but I was...pretty bummed. Having had some contact with the AIDS activist community in the
mid80's-early 90s, I knew that I had to find a community of people with the condition. After looking around, I found y'all.

So, THANK YOU! I have been vacuuming up as much as I can read here for about a week. I cannot tell you how much this has done for my mental condition. You made me understand that in the world we live in, with the technology we have, living a great life is possible by USING MY BRAIN.
In fact, managing diabetes is a big experiment in quantitaive biology (what I do for a living), or maybe better to say: putting part of the endocrine system on manual rather than automatic (and I do drive a stick). You taught me that I treat myself, and it occurs to me that with cancer, *they* treat you, and they give you stuff that makes you sick. I give myself stuff that makes me healthy, and I don't think insulin is a drug...it is an acquired vitamin. I have sucked up so many posts I can't mention people by name--so many--but even if I never post here again I really had to write this to express my appreciation.

I am a novice, but I see there are adepts here. I want Tight Control
(some of you wouldn't call it tight, but I aspire to 70-140 always).

So far, I'm nowhere close. My internist told me to use the 'rule of three' to get to a fasting level of 130, and I did that by gradually upping the levemir from 15 to 23U. That was before I found this site
and became mentally activated. I asked him to do the auto-abs and C-peptide panel Monday (thank you, Mellita!), and he said 'yeah'. I have C-peptide results (see below) but the auto-ab results won't be here till next week. At this point, I want the diagnosis settled so I can get blood sugar lower on a proper basal 'n' bolus regime . Today I went from testing twice a day to six times, and its really clear I have to deal with major daytime spikes (218 after lunch..yuck).

Although I feel that the following questions could be answered if I looked more, I will be self-indulgent and ask a few:

1. I got a C-peptide result: 3.360 ng/ml (ref range 1.100-4.400). Is this high for a T1? Particularly with 23U levemir and fasting? Honeymoon or T2 insulin resistance? I know the antibody test is decisive, but I wonder how these results fit into everyone else's experience.

2. If anyone has an endo in Chicago that they are extremely pleased with, please let me know. (Uh..can we send each other messages or just make comments? Told you I was a newbie).

3. I hear people say things like '5 carbs' or '7 carbs' and speak of their insulin/carbs ratio that way. What units are these? Obviously
not grams, or 1/1 and 2/1 ratios would be causing comas.

You guys are swell.

2

Hi zzyx,

Welcome :)

I'm sorry about your D diagnosis and I understand the shock. That is good you're getting the testing done. It seems your c peptide is in normal range but you're on insulin so I think that can skew the results, I'm not sure. It's also recommended to have one done fasting and non fasting. A fasting c peptide is more accurate I think, since if you have low levels they will be lower on a fasting test when your body isn't trying to produce more insulin for food etc.

I'm not sure what the rule of three is, but I would aim for a lower fbg than 130 for sure.

The carb ratios are for insulin units dosed to grams of carbs that you eat. I'm not sure how it applies to other d meds. For instance, you figure out your i:c ratio by testing throughout the day and then take 1 unit of insulin to ten grams of carbs or more. This would be fast acting insulin, not for your basal insulin. Many people need more insulin in the am hours or upon waking due to dawn phenomenon: when the liver starts releasing glycogen to give us energy to wake up etc. So many people can also eat more carbs at night when insulin needs are lower.

You can also figure out your insulin sensitivity levels throughout the day, which vary also according to activity and so on. For instance with a 218 after lunch, you would normally take a correction with a fast acting insulin like novolog and maybe do some exercise also. Carb intake can also help get lower after meal numbers- a lot of people eat low or lower carb diets to help control things and eliminate or limit problematic foods. Some people also need less basal insulin in the summer and warmer periods.

Testing as much as possible in the beginning is very important so you can see what is happening and see how foods affect you.

I think you will probably need a fast acting insulin instead of metformin.

Hope this helps!

3

I'm sorry that we have to welcome you to the club, but I do think it will be helpful being here. And although I know that all the mechanics are helpful, diabetes is also 90% mental. It may take months or longer before you really wrap your head around having diabetes. The value of this forum in helping you deal with that part is also important.

As to your tests. It is important to understand what your blood sugar was when you had the c-peptide. Usually a blood sugar of over 200 mg/dl invalidates the fasting c-peptide test. Medicare won't accept a low c-peptide as an indicator of insulin deficiency if your blood sugar is > 225 mg/dl. I am a T2, I've had a c-peptide after a meal in the range you tested, but I've also had a 0.4 ng/dl fasting c-peptide. And if your antibody tests are positive that will help you get a "definitive" diagnosis, but they may also be inconclusive. Diabetes is truly a complicated condition and for the vast majority of those with diabetes they don't get a definitive diagnosis, they get a diagnosis of "exclusion" which is T2. And that is ok, because what really matters is figuring out how you can manage the condition so that you can life a long, healthy and happy life. And have faith, not matter what, you can do that.

4

Mee, Thank you! Now I understand--i 'carb' = 10 gm carbohydrate. I counted my lunch yesterday. First time ever, and easy, since it had industrial food labeling. It had about 60 gm carbs, and 60u would presumably be one crazy bolus.

I appreciate your other comments greatly. I think I'll be off the metformin real soon. My internist suggested (before I found y'all) that it was probably not helping me. I have to not take it for the next 3 nights because I am getting scanned for pancreatic cancer today (iv contrast agent). This scan is an outcome of a brief denial rxn on my part. In the 18 hours between learning my BG and seeing my internist, I looked for explanations of my BG levels that would not require me controlling BG for the rest of my life. The only one I found was pancreatic cancer (because of not having a 'rest of my life'). I now realize I've had subtle diebetic symptoms for 3-5 years and if it was from pancreatic cancer I think I'd be dead. But my internist indulged me and now I have to get the scan before I see him again :)

So now i'm waiting for antibody test, which is needed for a strategic plan. I think I now understand the basics of T1 control strategy. T2 strategy (from what I see here) seems more complex. But i'm gearing up to do whatever needs to be done.

5

I'm not sorry you are welcoming me to the club :) I realized (too late) that I should have done a fingerstick right before the C-peptide test, but that was two whole days ago when I still didn't take my works out of the house. But the c-peptide test was 6-7 hours after eating (I missed lunch) and 2.5 hours later at home BG was 85 mg/dl. -ZZ

6

Actually, it is your doctor who should have ordered a blood sugar test at the same time. It does sound likely that your blood sugar was within a normal range (70-140 mg/dl) which means that the test may well be useful.

7

Actually there are T2's who are very insulin resistant and who need significant doses of insulin per gram of carb. For instance in this T2 post, she is taking 10 units of insulin for 8 grams of carb (or carb-to-insulin ratio of 0.8): LINK In contrast, long-term T1's usually have carb-to-insulin ratios somewhere in the 8 to 15 range. Early onset LADAs can have carb-to-insulin ratios even higher than that since they are still making significant amounts of insulin. (And of course there at T1s and LADAs who are outside these typical ranges).

It sounds like you are pretty insulin sensitive, and if I had to guess I would guess that you have LADA T1. The tests you are having should be definitive, but you can judge for yourself based on a few questions. What is your Total Daily Dose of insulin? What is your carb-to-insulin ratio? Do you have a family history of T2 diabetes? What is your BMI?

8

No, sorry, zzyzx, you've misunderstood mee. One carb = exactly one gram of carbohydrate. She was just giving you a suggestion for the way to began determining your I:C (insulin to carb ratio) the mealtime bolus of fast acting insulin. Most people start at 1:15 to make sure they don't take too much. That means for every 15 grams of carb (15 carbs) you take 1 unit of insulin. Then you test two hours after eating. If you are consistently high for that meal you would change it to let's say 1:17, meaning one unit for every 17 carbs.

So to start out, in the example you gave of the 60 gram lunch, you would take 4 units of insulin to start experimenting at 1:15.

I strongly encourage you if you end up being type 1 to get the book Using Insulin by John Walsh. There's a lot to learn. But you sound smart and you can do it!

9

Zoe - Just a gentle correction about the inverse relationship of I:C and post-meal BGs. You wrote:

That means for every 15 grams of carb (15 carbs) you take 1 unit of insulin. Then you test two hours after eating. If you are consistently high for that meal you would change it to let's say 1:17, meaning one unit for every 17 carbs.

In this case you would actually want to increase the amount of insulin due to a high post meal BG. That would mean changing a 1:15 ratio down to 1:14. A 1:14 ratio would deliver more insulin and help drive the post meal BG down. A 1:17 ratio would deliver less insulin and make the high BG worse, all things being held equal.

The inverse relationship is confusing sometimes.

10

Terry is absolutely right; I do say that backwards sometimes. Good catch!

11

Hi zzyzx: You have gotten some good advice here, and I am glad you have found TuD. You are also very fortunate to have a doctor who is willing to investigate possibilities. I wrote a blog for the newly diagnosed adult T1 that you might find useful. Best of luck!

12

Jag,

Thanks very much for the link. It sheds a lot of light on T2 strategies.

I don't know my carb to insulin ratio yet, because I don't yet have a scrip for short-acting insulin (coming quite soon, I'm sure) and I've only started testing 6 times a day, before and after meals, yesterday. The original instructions were twice: morning fasting and 2 hrs after dinner.
Fasting, for which I now have good data, is 85-116. From the last two days, I see crazy spikes of 218 and 203 after lunch. 218 was from ~60 gm carbs--tuna wrap and doritos with industrial labeling for gm of carbs.
The 203 was from a chef salad and banana, without carb info. How did you learn to count carbs and which book(s) do you recommend?

The fact that the above happens on 23U/day basal makes me think that good
control would require >= 30U TDD. That doesn't seem sensitive, given that people on the "T1 what is your TDD?" thread seemed to be taking a TDD of 15-25U, and those in the honeymoon phase (which I'm in if T1) were taking as low as 10U TDD, all bolus. If I interpret this right (do I?)
it is a line of evidence indicating I'm not very sensitive to insulin and am T2. I know of no blood relation who are T1 or T2, but my grandfather died of a heart attack at age 62. This was in 1962 when glucose blood tests were chemically a big deal and rare, so maybe he had undiagnosed T2.

The line of evidence that suggests I'm T1/LADA is weight. My BMI is 20.4, from 142 lbs (64.5 kg) and I'm 5'10" (178 cm). My historical weight range is 150-170 (all 'normal' for BMI); both my wife and i think I'm underweight. We were trying to "fatten me up" before the DX--I tried to eat extra ice cream, and I found I had a growing enjoyment of sweet soft drinks. But I kept losing weight. Mmmmm....

13

SS, Zoe, and Terry,

Thank you very much for the correction. My big problem was that I had the ratios inverted... carb:insulin, not insulin:carb. --ZZ

14

Melitta, it was that precise blog that was one of the 3-5 posts that got me here in the first place.

Gratefully,

ZZ

15

Got it! See above...

16

Hi zzyzx,

My typical ratio for insulin to carbs is 10g to 1 unit novolog, but this is for me, and it varies all the time- I fluctuate a lot. You will discover what yours is, in general and throughout the day etc. by testing. Yes I think 60 units would be crazy for sure but there may be some people who need that. I'm very insulin sensitive most of the time and I take small doses, 60 units would put me in a coma.

I think it is good to get that scan just to make sure nothing else is going on like cancer because you never know.

17

Your weight and recent experience sound more and more like a LADA T1. T2 often runs in families, but T1s often have no family history of it (for example I have no relative with T1). As you say it sounds like you might not experience much of a honeymoon. Around 25-30 units would be pretty normal for a full-on T1 of your weight. I've read that not all juvenile onset T1's experience a honeymoon (I didn't seem to but I was eating a lot to regain weight since I lost a lot of weight before I was diagnosed). The same is probably true for T1 LADA, with some enjoying more of a honeymoon than others. But notice that the honeymoon usually starts some time (weeks?) after insulin has been re-introduced and normalized - so you may experience a honeymoon yet (and require less insulin for a while than you do now).

I don't have a book for carb content (though there are numerous good books and cell phone apps available that others can recommend). I use the online USDA foodlist LINK HERE. For bread and other packaged products I use the industrial labeling - I am always studying food labels before I buy it and find them reliable. For fast food I ask for the nutrition handouts. For home cooking you can judge the ingredients, and when I'm eating at a real restaurant I use judgement (aka wild-ass guesses - with varying results - so eating the same place or the same things is helpful). Some restaurant food is easier to judge than others (e.g. I find sandwiches pretty easy to figure based on the amount of bread; pasta can work but they tend to give you way too much of it, etc).

You should learn to judge the size of a cup by looking - a cup of rice and most pasta is about 45g carb. So if I eat sushi I try to imagine how many would fit in a cup to give me a pretty good idea of the carb content. You can judge pizza carb by thinking of it as squashed down bread; thick crust greek pizza obviously would be thicker bread (more carb) than thin-crust italian. If you have a favorite pizza restaurant take a slice apart and weigh the dough then you'll have a good idea for the future. Fruits I've learned based on size - I weigh them once and use the USDA site then buy the same size each time; or increase the amount of carb if its not the same size. A more accurate way would be to weigh each time, and that is worth doing until you get better at judging by sight. You can get similar pointers from a nutritionist (who will have some plastic food for you to play with).

Another piece of advice - besides buying some books ("Pumping Insulin" by Walsh, "Type 1 Diabetes" by Hanas, and "Think Like a Pancreas" by Scheiner are my favorites) - test BG often and look for patterns (also called "eat to your meter"). You will find some combination of protein/fat/carb that you like and find satisfying - start with what you eat now and check how your BG reacts when you eat it. Test before and periodically after you eat. Then adjust based on your results, either by increasing/reducing insulin or carb or changing timing. For example you say you go to 200 after lunch, but if you go back down to normal without a correction maybe its just a matter of taking your insulin a little earlier; then again maybe you need to take more insulin or eat less carb. Some foods you may give up on entirely - e.g. I never eat boxed breakfast cereal because it is basically pure sugar. This is a process, and an analytical mind is a real asset since there are usually several uncontrolled variables (is your basal correct, did you get extra exercise running to the bus that morning, did your extra egg at breakfast leave you protein and fat that you're still digesting, etc., etc.) But it can also be frustrating when you think you have it figured out but your body doesn't cooperate and you go way high or low, so realize that it will take some time to sort this out and remember that this is a marathon not a sprint. Good luck.

18

Jag,

Thanks! That was tremendously useful. I will definitely get an app. The USDA database is obviously a good resource, although I'll have to learn how to search it. From browsing I see that it is remarkably comprehensive, in a somewhat esoteric way. For example, if I am looking for a snack, it is good to know that "05626 Emu, full rump, raw" has zero carbs. I'm not trying to be snarky, I was kind of amused..it made me think of a comment by Zoe that she restricted her dining at interesting exotic ethnic restaurants because it was hard to count the carbs. The cup idea is great...I mentioned your post to Mrs Zzyzx, who (naturally) turned out to already know that trick, opened her cupped hands and said "yes, I know exactly how much a cup is here. I will carefully pour a cup of water into your hands, so you can calibrate". So, I have a start... I know family support is a big issue and I'm amazingly fortunate in being married to Mrs. Zzyzx. I've already noticed that I get smaller BG spikes from food she cooks than the stuff I find at the cafeteria at work.

I'll definitely get the books...how could I not want something called "Think Like a Pancreas"? (or, as Groucho Marx said: "I'll take a coat and two pairs of pancreas"). It is really a big science project on myself, and interesting too. I enjoyed self-experimentation as a kid--looking at my blood cells under a microscope, etc.

My main frustration now is that I can't go to the next step in control until I get on a proper MDI regimen so I can start developing data. I hope that will happen when I next see my internist on May 6. Besides learning about carbs I'm incrementally exercising more, e.g. taking the stairs to my 6 floor apt. There's a long way to go, though, but plenty of motivation. My late father wants his ashes scattered from a mountain in Colorado over 14,000 feet with no road, and although I've been up a lot of these many years ago, I found I was not in shape to do it last summer (when I now realize 'rocky mountain high' would refer to my BG levels).

On the LADA/T1 front, the resukts keep trickling back. I'm negative for "ISLET CELL ANTIBODY", which is presumably what Melitta's list (that i emailed to my internist) called "Islet Cell Cytoplasmic Autoantibodies (ICA)". There's still four more to go, including GADA. I agree with you that the weight loss suggests LADA, and if all the antibody tests are negative I'll still think I'm a seronegative with a LADA phenotype. Do some type 2s lose weight? Well, we'll see...as you said a marathon not a sprint, and a PhD thesis not an 8th grade science project.

On a less serious front, I always thought LADAs were a notoriously uncomfortable make of Russian cars...I've ridden in them. Maybe they affected my pancreas. --ZZ

19

I've used MyFitnessPal and LoseIt apps to count carbs. They are both pretty easy to use and have growing databases of goodies. They also use your phone's camera as a "scanner" for stuff with bar codes, which is pretty handy. It seems to me that Lose It has more useful increments, ounces, cups, whatever usefully matched to foods. I pretty much ignore the exercise inputs and just use them to count.

20

ZZ, here is a link to a video by Dr. Anne Peters, regarding new-onset diabetes in lean adults. Dr. Peters, editor of The Type 1 Diabetes Sourcebook (ADA/JDRF 2013), treats her lean autoantibody-negative new-onset patients as if they have Type 1.

I realize you don't have all your test results back yet, but I thought you would find this interesting.