My story, with lots of questions! New type 1

Hi Brian! Thank you for responding. Wow, this is the subtle version of getting type 1? It was about as subtle as a freight train for me! I can't imagine what kids have to go through with the harsh version. How terrible.

I wonder why the mixed insulin too. It seems unanimous that the basal and bolus is superior. My Dr. seems overly concerned about patients getting overwhelmed and/or freaking out. He actually told me that he doesn't like giving patients too much info, just what he thinks is 'need to know'. I like him a lot, but I hate that mentality! I'd rather sort through too much info than not have enough, in any situation. Maybe he's trying to baby me by making it easy to start. Or maybe he's stuck in the past, who knows?

Thanks again for the info and positivity!

Alos- Glad you mentioned seeing a nutritionist, I'll get on that. Where do I find a good CDE? I'm assuming that means certified diabetes educator, or something like that?

Hello Capin! Nice to meet you too. Thank you for the info.

Awesome that I can name that feeling now! False hypo. So that IS what I'll feel when I actually go too low? Feels like dread-type adrenaline rush, or like waking up from a surgery with a bad anesthesiologist. How often do most newbies end up hypo? Any tricks to avoiding it?

I was told to carry the meter, insulin pen, and the glucose tabs whenever I go out, and I have been. I had to buy a bigger purse! Question- What do you do with your sharps after using when you're out? I've been putting mine in an empty test strip vial and bringing them back home.

It stinks that I'll likely gain, but I'm going to fight that as much as possible. Knowing that I'm going to feel good again is a big motivator!

Q- Are all these symptoms common? Will they all go away when my bs is more normal? Any tricks on dealing with these issues?
A - Symptoms are common, Thurst = drinking and peeing. High BS = infections. High BS = head achesm, vision issues, yeast infections and temp changes. Yup you will soon find out that there are low BS syptoms too.

Q- How dangerous was it to go around like this? What would've happened if I hadn't gone to that dr? Do you think it's likely my body was damaged from having my bs so high for possibly months?
A - It's dangerous and it's good that you went to the Dr. Now you know and can treat yourself. Don't worry too much about the past, the important thing is to get under control now.

Q- Is it normal to still have these symptoms? Will this all stop once my bs are under a certain #? If so, at about what #? What's causing the headache? Will anything make it go away?
A - Head ache a lot of the time is BS related. Get them under control and they should go away.

Q- Is there any way it's not type 1? Are there any other tests that could give more insight, or a possible change in dx? Is there anything I should ask my dr to change his instructions on? Is there anything else I can do right now to improve my progress?
A - Nope - you're part of our family now. Welcome!

Q- How bad is that? Is it likely that my kidneys will go back to 100% with better bs? How do you know when there's permanent damage? Is high protein from veg, soy, dairy, and grains ok? How much will eating meat affect me? Is there anything else I can do to be kind to my kidneys?
A - do you actually have kidney issues? if so you need to see a specialist about that. If you are just worried about peeing a lot don't be. Get your BS under control and everything will be fine. Stick with what your Endo says and get your diet under control too.

Q- Anyone else ever have numbers like that? Did they go to normal quickly once your bs was ok? Am I at risk for any extra problems right now, assuming those levels haven't been a long term thing? What do I eat??? Does having four meals consisting of 400-500 calories, 50g of carbs, low in fat, and no/low meat seem ideal for me? Any suggestions?
A - go see a dietician - they along with your Endo and Diabetes educator will become part of your TEAM. They will help you figure it all out and figure out what works for you. Dieticians are SO important and so worth the time.

Q- Was my inability to lose weight related to D? If not, any theories? Any advice on effective weight loss strategy? Is there anything different I should do because of the D? Is there anything that will lessen the hunger? Are there any prescriptions or supplements that would help me?
A - weight loss...this can be tough with D, you eat less your BS go lower and then you need to eat. It's a vicious cycle and you need to get really good control over your eating first. When I was losing weight I discovered that 75% of weightloss is food related. Stop sticking bad fat and sugary things in your body and you will lose weight. It will be a slow process because D makes it slower for us. But it is possible. Get your BS in control and your Food in control and start doing a weight regime and the weight will come off. Also you migth not see a difference for several months. Took me 5 months of working out 5 days a week before I started to drop any weight. From there I kept coming off. 5 years later I'm still at my healthy weight - didn't gain any back. Also don't get on the scales every day - you will drive yourself crazy. Do it once a month (after your period you weight less than any other time of the month). So then you can see a change. Daily is just pointless, my weight goes up and down by 2 kilos in a day.

I hope this helps. As any questions any time.
:)

I would let your doctor know that you prefer information and will be willing to sort through it - also don't hesitate to let them know you are educating yourself through reading as well. If they respond negatively to these statements then it might be time to consider other options. They might just be 1) Touting the party line and 2) used to dealing with type 2's or with people who are not proactive in their own care. Then "educating them" about your own needs/preferences might work well. I once was diagnosed with a different medical problem (ended up being a false alarm) shortly before moving. When I looked for a new doctor I asked to speak to the doctor before making an appointment. I asked how she felt if I were to read things and bring them in to discuss. She said she liked educated patients and would be glad to work with me that way. I, of course, made an appointment!

As for the $500 spent on the 70/30 (double ouch!), I think it's really up to you and dependant on your financial situation. You would get much better control if you switched right away, but that is a lot of money to waste. Hopefully you can get the modern insulins covered by insurance?

As a "stereotypical type 2" (obese, relatively sedentary, female, over 50, etc.) let me apologize for all the nonsense people learn about "diabeetus" on the tee-vee. Gah.

As a T1, you will be dealing with that from now till...forever. Sorry!!!

Just look down your nose at 'em and say, "I'm not that kind of diabetic. I have auto-immune diabetes, Type 1."

Maybe that will make them zip it long enough to stop and listen to you. Probably not. I think a lot of T1's just don't mention it because they don't want to hear all the stereotypes being blathered in their general direction.

Of course, most of the stereotypes about T2 are also false or partially false, but that's another story...

Teh stupidity -- it burns!!!

Hypos are unavoidable some of the time for Type 1's, but I think mostly they will be the kind you can easily treat yourself. The way to minimize them of course is to test, test, test. Hypos are most often caused by too much insulin and can also be caused by exercise. So the better you can fine-tune your insulin doses the more likely you are to minimize hypos. And your doctor saying you don't have to test after meals? That is a sure way to increase hypos! If I test after my meal and I'm borderline low I will test again soon and pay closer attention to how I feel at least until the insulin is out of my system. Btw when you do switch to a bolus insulin - Apidra is the fastest acting and has the shortest tail. That means it doesn't stick around as long, which can also minimize lows.

I think a good strategy might be to follow the endo's program to the letter -- and use up the 70/30 -- while you read, read, read and learn. Then when you're armed with better knowledge (and running low on 70/30) meet with him about making the transition to basal/bolus/correction. It will be harder to make a case for it before you better understand it.

The advantages are that you'll have much better control and flexibility.

In the meantime, test, test, test and keep a detailed log that you can use to learn and to communicate with him, e.g.:

"See, right here I wasn't hungry but I had to choke down all this food just to 'feed' the insulin. And here I was high all afternoon but couldn't correct because I was afraid of 'stacking' insulin and going hypo later..."

Hi - Welcome to TuD. Sorry you are here, but you are at the best place for a newbie to be. We are here to answer your questions and support you when you are confused by your BG numbers. All of the advice you have gotten on the post has been excellent info for a new T-1. BTW, I was dx'ed T-1 13 years ago when I was 55yo.
Try not to get discouraged when you think you have this illness figured out and it throws you a curve. We all have times like that. Just rant to us on TuD. Your life will never be "normal" in the way it was before D. You will just get used to a new "normal."

Nice to meet u. Sorry u've had so much trouble. I agree with everything that has been said here. Hope u find all ur looking for here at TUD!

Welcome!

Sorry that you are joining our club, but there is wonderful support here and tons of information for us information junkies!

A note about books:

Dr. Bernstein's book, Diabetes Solution, came out in a new edition in November, 2011.

Gary Scheiner's book, Think Like a Pancreas, came out in a new edition in January, 2012.

Others here have said that there was a big difference between the older edition of Dr. B's book and the new one. Don't know about Scheiner's but I'd bet there are differences.

Just want to make sure that you get the latest info!

Best wishes!

marty1492

LaGuitarist- Ha, it's crazy how little many people know about anything medical. Anatomy and physiology should be mandatory in school, at least give ppl a basic understanding of their bodies and what can go wrong! A few friends didn't even know what auto-immune meant. Sigh.

I don't plan on telling many/any more people, but I wanted those closest to me to know what was going on. When I've heard the silly comments, I've just smiled, tried not to roll my eyes, and suggested they google it.

OOh, good call. Using the log like that is a great strategy! I am following his program to the letter.

On the positive side, he has been willing to accommodate all of my requests so far, so I don't think I'll have to make much of a case for it. If he denied a reasonable request for a change that would improve my medical care, I'd drop him in a heartbeat and find a better doctor!

I'm not familiar with all the terminology yet, is 'feeding the insulin' where you must eat to avoid going too low? What exactly is 'stacking insulin'? Is it dangerous to overlap injections, like if you have a late breakfast and early lunch? Is the term 'correct' used just for taking insulin or any correction of blood sugar, high or low?

Yes, you are correct, "feeding the insulin" is when you take too much insulin and then need to eat to prevent lows. This happens often when people use set doses. The goal is to suit the insulin to the food, not the other way around.

"Stacking insulin" is when you take more insulin while the previous injection is still working in your body. It doesn't mean you can never do this, you just need to compute the "Insulin on Board" by determining the duration - how long the insulin is active (I use Apidra and calculate this as 3 hours) and how much was taken. So if I took 3 units and then tested at the two hour mark I would know I still had one unit active and would be sure to take this into account in determining if I should correct.

The term "correction" is used both ways: In general you "correct" highs with insulin as well as lows with glucose. But the more specific use is for "correcting" highs with insulin. I most often refer to using glucose as "treating a low".

I am a fourth year veterinary student. I really should have been more on the ball and gotten to the doctor sooner, but kept blaming it on the 14 hour days 6 days a week in the barn... and the general stressors of clinics. My friend convinced me I needed to go, and all I did was go to student health services.

The GP I saw was very good with me, answered all my questions, asked a lot of good questions, decided on his own that a full set of bloodwork needed to be drawn because of my family history and all that.

I'm glad he did. Honestly, if he had just blown me off and refused to run bloodwork, I probably would have had a LOT to say and would have argued with him. He later said he was glad to get an answer for me even though it's one that's kinda hard for me to get wrapped around.

But enough about all that..

I just got an I:C ratio yesterday, and a correction factor. Unfortunately they did not look very closely at the fact I've already been counting carbs and the fact I am taking a very disproportionate amount of Lantus and Humalog. So it's sent my sugars sky high today and I honestly feel like crap. I don't want to give you advice.. because I'm newly diagnosed and despite having read and researched and asked a billion questions of all these nice people, I don't feel like I know a whole lot. They told me they base the I:C ratio initially on what your size approximately is.. and for me they wanted me to start at 1:20 for meals. Well that did not work. Then I found out you need to be taking approximately the same amount of Lantus as you do Humalog in a whole day. So I'm going from 8u Lantus to 9u Lantus tonight to see how that affects things tomorrow and if I can get a better I:C ratio figured out. I think the key is slow and gradual adjustments.. because you don't want to get hypoglycemic.

I had a 'hypoglycemic' episode in the first few days with insulin when my glucose dropped to 109. 109 is normal, but my body was so used to running on high for so long that I got extremely shaky. I was so shaky I could barely test my glucose. When I saw that it was normal, I just grabbed a handful of nuts and ate them. Psychologically it worked and I started feeling better, plus they don't seem to raise my glucose a lot unless I really pig the heck out on them. So if you try that, just don't eat handfuls (of which I have been guilty because I feel hungry all the time).

I have had several readings in the 80s. The only time it bothered me was when it was during the middle of the day. Around 3 to 5pm I tend to start feeling really grumpy, grouchy, irritable, and kind of in a daze. That seems to be my 'lowest' time... even today with my glucose running from 160 to 230 all day, at 4pm it was like 123 and I felt different. It's better to come down slow from the high sugars, you may notice some blurry vision... I experienced that last week but it was gone this week... just made it harder for me to focus on things.

All of my close friends know and are really amazing. I am not one to have billions of acquaintances, and honestly after all of this that's happened... I've realized what good friends I have.. truly. Many of them are veterinary students so they understand insulin dependent vs. insulin resistance. Only a few people in my family know, I am not extremely close to many of them. My parents are very involved, I have been calling both of them once or twice a day... they are very supportive. My dad is a type 2, so it is nice to have someone who understands somewhat; he also asks a billion questions, is very interested, and has been doing a lot of research on type 1 as well (he is a biology/chemistry nerd anyway).. sadly, this is the only time in my life that we've been this close. I call him more than my mother now, and that's never been the case.

I initially found it very frustrating to have to explain that I am type 1, not type 2, over and over and over again. I simply say, "This is not type 2 diabetes. I cannot fix this with diet and exercise. In type 2 diabetes, the general idea is insulin resistance. The pancreas is still making insulin, but the cells are ignoring it. So their blood glucose is out of control because the cells aren't listening to the insulin. I am sensitive to the effects of insulin. However, my body has gotten angry and decided to attack my pancreas. My pancreas still spits out some insulin whenever it wants to, but it is probably on it's way out the door. Either way it's not giving me enough insulin, so I have to give my body insulin and will for the rest of my life."

Most of the people I've said that (or something similar) to seem to get it. And then comes the question of 'but you're not a little kid'. Then I tell them, "Actually, people of any age can be diagnosed with type 1 diabetes. One of the theories that makes the most sense to me is that you may have a genetic predisposition for the development of type 1 diabetes, but you don't fully develop the disease until something in the environment such as a virus triggers the autoimmune response."

They seem to react pretty well to that too. I made the decision today that I would tell classmates if I feel like they need to know or if they are wondering why I disappear sometimes. I have had several doctor's appointments and missed a week of clinics, so I went ahead and told the two that I am on a rotation with right now. I just told them that I was recently diagnosed as a type 1 diabetic, which people of any age can get, and that I'm doing fine, but occasionally disappear to check my blood sugar or give insulin. And that was that. I feel like if you're just simple and matter of fact about it, it's fine. I'm not using it as an excuse for anything, I'm just stating facts and telling them why I haven't been there and why I have had to go to the doctor so much. I probably don't even need to do it, but I feel there's no reason to be ashamed of this; it's part of my life, it's not like I did anything wrong, and I'm dealing with it.

When people over-react with sympathy, I just laugh tell them not to be so nice because they're going to make me cry again. That seems to work too.

There is a crap ton to learn about this disease. There are at least two crap tons of resources about it, too. The problem is sifting through information with a 'scientific' eye and taking things you read with a grain of salt. Sometimes I will read something that sounds like an interesting idea, and I'll write it down as a question to ask the doctor about. Or a few times I have actually gone to the scientific literature to see if there are any published reports on certain things.. sometimes I try to verify that something is a good idea by just googling it and seeing how many different resources say the same thing and then I try to see if those resources actually have credibility...

But anyway, that was a really long-winded response. :) I hope a little of it helped, at least.

My initial family physician told me I didn't need to worry about it. The PA at the endo's office said if I am ever really ill, vomiting, diarrhea... etc... It could kick out some ketones... so might want to monitor then.. and since there's a risk of zoonotic diseases causing diarrhea especially.. lol.. I asked for a script for them just in case. I got the foil wrapped ones which last longer...

Thank you! I was told today by the PA not to micromanage... I'm still hurt by that, lol. But I feel like this is my body, and if I want to micromanage it, I will. I want to live a long time.

I have been using dbees.com and the Dbees app for my android phone to keep this log. I put notes in sometimes if I am feeling 'strange' so that I can go over it with them later. I don't know that I really like the app that much; the way it generates reports is pretty craptacular and not very useful, so I am thinking about trying a different one.

Size is only one factor, and one of the least significant ones in determining dosage. More important are things like how much insulin you still make, length of diagnosis, degree of insulin resistance, etc. And bottom line, the correct I:C ratio (dose) is the one that works to keep you in target range 2 hours after eating more often than not.

The "formula" of 50/50 basal/bolus, is just a general principal. Many of us don't match that, especially if we eat low or lowish carb. Again, it's just a guideline, and what works, works. (within reason).

You will need a glucagon kit too and need to teach people how to use it should they find you unconscious somewhere. It is not likely to happen right now while you are still running really high, so please don't worry too much. But you'll need one eventually.

Your scientific background will serve you well as you move forward. Dealing with insulin-dependent diabetes is a lot like a scientific experiment that never, ever ends. I feel best when I take off my "victim" hat, put on my "scientist" hat and just...have at it. It's all about learning how to solve problems without getting too emotionally attached to every, fricking thing that comes down the pike at you. I try to say, "OK, how do I solve THIS problem?" rather than "Oh, God, poor me!" It's tough, but a certain detached intellectual curiosity is quite helpful in the long run.

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