Totally Wierd Question

Type 1 and LADA New to Type 1 Diabetes
21

Veronica,

Your friends here (and yes, we’re already claiming that kinship) have given you great advice. You are taking bold steps by asking these questions and educating yourself by what you find on the internet (which can be a bad idea, but as an admin here at tudiabetes, I promise our team does a lot to keep our environment safe from false information - it’s like a full time job!).

I agree with everyone so far. Don’t incite the highs. They do damage. I was diagnosed in a coma from ketones (DKA) as a child and you do not want this to happen. A high sugar does damage because your nerves and retinas and capillaries cannot withstand glucose traveling across them in these quantities. And the ketones cause your blood ph to become acidic and your lung functioning can halt.

Most of us are happy with 100 all the time and no higher than 140 at an hour post-meal. The best times to check your sugars are an hour after a meal or half an hour before a meal when you inject the insulin. And keeping the meals healthier is a must for control. Insulin cannot handle bulk carb well and works more slowly than this carb can convert to glucose in your bloodstream. So assume those gummi bears spike your sugar to dangerous levels and then the insulin is working like a madman — better late than never, but still later than the spike — to undo what you just ate. And if your body is producing insulin, there’s a fight going on as this high sugar food stimulates your body to produce extra insulin and bring you crashing down because now you have more than you need on board.

I suggest you consult those links our members have given you, explore the boards on here, ask questions of everyone, and see if you can also schedule a meeting with a certified diabetes educator - a specially trained nurse/dietitian who can help you with the details.

22

When I was diagnosed, my GP called my endo and got temporary instructions that would keep my sugars in check for 3-4 days until I could see the endo. The endo put me on 20 units of Lantus, split 10/10 morning and evening, and 10 units Humalog with meals. He also said that if my fasting dropped below 100 (I think) or my 2 hour post dropped below 120 (again, I think), to knock a unit off the relevant insulin. My point is not that you should follow those numbers, because I’m extremely unqualified to dispense medical advice, but rather that if you know that the insulin is dropping you through the floor, cut back on the dose rather than eliminate it. (I ended up having to eliminate, but that was because even 2u of Humalog was dropping me into the 60s routinely, and I was eating up to the insulin rather than dosing to cover carb intake.)

Also, the sugar loading? Really, really, really bad idea. That’s a good way to burn out your pancreas. Sugar spikes your blood sugar fast, making your beta cells work hard, potentially leading to faster exhaustion.

Your numbers confirm that you’re diabetic. The question is what sort, and how best to manage it.

If you have any questions, this is the place to turn . . . .

Good luck!

23

Dear Veronica.

For the insulin dosage I take about 55 units a day and I am 250 lb and probably insulin resistant and with pancreas not working much but who knows for sure. So assuming a same dose based on weight your should be 23 units. Now mind you if I was eating the same amount of carbs it might be more like 80 units. So your insulin is in the ballpark for your body weight, probably needs fine tuning. A general a rule would be to cut the dosage of the long acting one if you go low at night, you will know if you wake up sweaty with a racing heart eat carbs quicky : bread, orange juice, gummy bear. Do not over do it even if you are starving because you go the other way. ! slice of bread, cup of orange juice or 1/2 oz gummy bears. To know if it is too high it is best to measure again, if I wake up thirsty it is usually too high. You can fine tune the pre meal fast insulin by checking the 2 hour bg, too low cut or too high add to the same meal. You want to go easy on mealtime insulin, that is dont shoot for normal BG in the begginig until you learn the ropes. Then go for it.

Gerri has made excellent comments. You need to test more to eventually fing out how much insulin you need. 3 tests a day when starting insulin is ridiculously low amount. It is even too low for a long term diabetic. There is a book called “using insulin” available from amazon and may be at your public library if available. Would be great to get book and do some experimentation before seing Endo.

It would be interesting to know how the hospital guessed at your initial dosage.

24

Veronica;
I am glad you joined us and looked for answers,my friends here gave you information & their experience,something the end will not give you;
you have diabetes ( which type,for endo to answer)
You are clever not to stop insulin,but you can adjust the dose to reach target number,with following low CHO diet,follow our amazing Jenny’s book and advice.

25

My non-diabetic friend–put down 2 (yeah really 2) normal cinnabons–they have like 600 carbs a peice–never got over 100–we tested every 15 min for 4 hours (thought maybe all the fat from the butter would delay the spike)

she was down to 80 in 90 min…and never went back up–spot checked a few times over the next several hours—

26

Denise.

I am really jealous. As a former control Enginneer I tip my hat to God. How the body accomplishes this is beyond my comprehension. When I get to a hundred after a meal and very low carb it is I break out the champagne (figuratively speaking). May be there is a Maxwellian Demon in there shovelling pure solid insulin into the blood stream or some other miracle.

27

Hey Veronica

I also went through a phase of testing myself with different foods all the time when I was first diagnosed. It took me quite a while for the diagnosis to sink in. I know that test strips are expensive, but if you are going to do eat loads of sugar and carbs, the only safe way for you to do it is to test and correct with insulin when you see what is happening. Think of it as an investment in your health.

I’m a bit of a special case on TuD. I had bad allergies, which turned into a sinus infection, and was put on cortisone and then developed secondary diabetes and a urinary tract infection. I had high BG numbers and needed insulin. After I got healthy again and the cortisone worked its way out of my system, I’m not diabetic any more (although I consider this happening to me a warning, so I think of myself as pre-diabetic).

Now, since I’m officially non-diabetic, let me tell you what happens when I carbo-load. I ate a toasted sandwich, french fries, a regular coke, and a waffle with syrup and ice-cream (in other words, a heck of a lot of carbs). I sat at 180 for the first hour but had dropped to 118 before the second hour after eating. In other words, even when I carbo load, I don’t end up anywhere near 250-270.

It may be that the long-acting insulin is what is dropping your sugars down eventually after meals. But the longer you sit with high numbers, the more damage is being done to your body, and that’s why you’ve been put on a rapid-acting insulin too. The rapid-acting will help you to quickly get your numbers down to a safe range after a meal, and thus protect your body. Also, if you have lower numbers, you will feel more energetic and less moody.

28

Hi Veronica!

I see that you have already received a lot of informative comments. I will just emphasize one thing that others mentioned. You are most likely in a honeymoon phase. Your immune system is killing off the cells in your body that produce insulin. Right now you still produce some insulin, but over time that will decrease.

After I was first diagnosed (in the ER with blood sugar over 600), I rarely saw a blood sugar over 200. A few months later, I woke up with a blood sugar over 400 and I figured that the honeymoon was over and my body was producing very little of its own insulin.

For some people, the honeymoon is very short, for others very long… but there is also evidence to show that if you take your insulin NOW and try to keep good blood sugars, you may have a longer honeymoon.

You can also think of it as a time of preparation. You have some time to learn how to take care of yourself while your body is still producing some insulin.

I hope that you will continue to take your insulin. You put too much stress on your body by not taking it and later on not taking your insulin could be very, very, very dangerous.

You should see an endo sooner. That is the doctor who can help you. It is not fair to have to wait a month!!

We know how tough a diabetes diagnosis is. There is so much to learn and accept and adjust in your life. But it is possible to live WELL with diabetes. There are many in this community doing that!! I hope that you will turn to us with any questions that you have. We’re here for you!!

29

Hi Veronica…another thing that helped me when diagnosed (at 50, healthy lifestyle, thinking lots of whole grains, low fat, fruit, etc, was THE way to eat) was a book called Think Like A Pancreas by Gary S something, Scheinling or something similar. I still struggle with the low carb, higher fat issues, but it works for me so I am coming around.

You sound as though you are starting in a good place…already committed to being healthy. We will probably end up learning from you in a few months. Good luck. Oh and the Gummy Bears can be a great emergency low blood sugar treat or a fix to keep your #'s up while running. Mine is juice or cream filled caramels!

30

Funny, we did this last night. My husband, and teenage daughter and I ate all the same food (I haven’t had choc cake in 6 months and it was REALLY good!). Then tested every 1/2 hour to see the difference in our blood sugars. They never made it over 110!

I however, ended up with a high BG hangover and will probably never eat cake again :frowning:

31

My DD is doing great now. Here A1c dropped 7 pts from 7.8 at diagnosis to 7.1 2 months later. :slight_smile: And her insulin needs have not changed. She takes 4 shots a day at least. No my BG has not gone above 95. I am not diabetic. :slight_smile: Please feel free to ask any questions you need answered. If I can’t answer there are PLENTY of people here who have Been There Done it answers for you.

32

Hi Veronica,

Here is some things I know…
A non diabetic can go as high as 160-180 after a meal but it always comes right back down to normal in seconds that they don’t even feel. Ketones are rare in anyone not diabetic unless they have so starved there bodies of carbohydrates the central nervous system sends the signal to burn fat. Even more rare are any large ketones in a non diabetic. Type 2’s can get ketoacidosis (sp) but it is much more rare, however because your BG seems to come back down to a normal level on it’s own you must be making insulin but how much and how well your body uses it needs to be figured out. If for instance you take insulin to bring down those post highs and fend off ketones but always go low it would tend to mean you make enough insulin but you are not up taking it into the cells as you should unless you have natural occurring hypoglycemia. Your body when working right is perfect in the amount of insulin it releases.

However if you do not take insulin and you always go high with ketones you are more likely to be a type 1 in a honeymoon since most type 2’s have to go a few days with very high BG to make ketones. This would mean as other have said that your pancreas is just going bad it is not responding right away to elevated BG and then when it does your BG is on it’s way down. Many people have hypoglycemia before the onset of type 1 the pancreas is just not working as it should.

I would have them do a 5 hour fasting glucose drinking test. You drink a sugar solution and they check your blood and urine every hour for 5 hours that can tell alot. It shows them exactly what is happening. Pancreatic function test should be done also.
Another thing you may want to check is a liver function test because sometimes some things show up in that test that helps paint a picture of overall workings of the digestive track.

I hope you get your questions answered
be loved

33

Call the endo you haven’t seen yet. Ask to speak to the doc directly or a CDE or someone other than the front desk person. Tell them you were just diagnosed in DKA in the hospital and put on a fixed amount of insulin per meal (sounds like waaaaaay too much insulin for a new T1 at mealtime, by the way) and this is causing you to go low - very low. Most docs get all bijigity when we get into the 60’s, so 30’s and 40’s usually sends them into panic mode. Tell them you’ve decided to stop taking your insulin until you see the endo b/c of those lows. Tell them what you eat during the day. This should be enough to freak them out and get you squeezed in to the doc or CDE to at least teach you about self-adjusting your insulin. It’s totally wack that they make newly diagnosed T1s wait weeks for their first appointment. It’s your body so make a big ole fuss b/c nobody else is going to do it for you. Go down and sit in the waiting room and pester them every 15 minutes if that’s what it takes.

By the way - you’re totally diabetic. I suggest reading “Using Insulin” by John Walsh. You’ll use it as a reference for the rest of your diabetic life.

34

Hi Veronica,
I was just checking in to see how you are doing. I know that you are overwhelmed right now and are probably feeling pretty crummy. Everyone really has given you great advice. Please call your endo (the new dr.) and let them know how serious you feel your condition is, Demand it, let them know that you feel lost and very much need help. Also tell them that the Hos. didn’t tell you how to use your insulin. They will give you help. It is very horrible that a Hospital is this day and age would give someone insulin w/out giving them proper dosage. Also it does take some time to get a good handle on the dosage on insulin. And it does change. So far in 2 months Dd has had hers changed 3 x. It will change several more times as we are still in the honeymoon phase. Please let us know how you are doing.

35

Veronica:

No judgment call here on you as a person. I’m sure you take care of yourself great with the non-diabetic health issues, but you are playing with fire by not taking your insulin. What you are experiencing is called the Honeymoon Period…it can last 6 months, a year, even 18 months…Enjoy it while it lasts but don’t get too comfortable. I’ve been diabetic 28 years and you would be surprised what the littlest piece of sugar has the potential to do. It won’t do it all the time BUT do you really want to take that chance? The consequences can be scary. I recently went on the Pump. Ask your doctor if you might be a candidate for that. It frees you up some on how much you can eat of anything. Back in the old days it was ALL OR NOTHING (NO SUGAR), today it’s a matter of moderation on everything. GOOD LUCK!!!

36

You have to accept your diagnosis! You DON’T WANT those highs in the high 200’s or even in the 500’s. They can damage your body before you know it. The thing is to regulate your carbs and even them out to avoid those peaks and valleys.

Get set up with a diabetes education group. A lot of hospitals run classes and some, series of classes. They go over things about the big D, medications, nutrition, psychology of handling the disease and, probably, most anything else you can question. There is NO reason that some doctor should just treat you for a serious condition WITHOUT trying to educate you. Your doctor has demonstrated that she is ignorant of at least some aspects of diabetes … like psychological aspects!

If your doctor won’t refer you … although you should INSIST … then investigate local hospitals. Most should have programs and/or free seminars. Most insurances will pay for diabetes education that is ordered by a DR. Arm yourself with your most important weapon against illness and death … KNOWLEDGE. (This is NOT to say you are going to die; but a seriously out of control person can actually kill themself over a period of many years. It sneaks up on you.) It is also good to participate in on-line things, but be aware that you could get some wrong info or info that works for SOMEONE ELSE and not you. Be vigilant in your journey in seeking correct information. Get professional counselling if you have to. We love you and want to see that you are safe and sound til you aer a little old lady and beyond!

Lois La Rose, Milwaukee, WI

37

First, I have to say WOW…
I never expected for so many wonderful people to reply with so many insights and good advice (even if some of it is a little hard to hear.) A very large THANK YOU doesn’t quite cover how I feel, especially since I haven’t told anyone in my life about this yet. I was waiting til I got a confirmed diagnosis. The closest I’ve come, was to ask mom if there was anyone in the family who had diabetes. Interestingly, the answer was no. I don’t want to have to tell her she was wrong. Meanwhile, all of you have made me feel better about this for the first time since I left the ER that Saturday.

Secondly, ARGHH!!!

I spent all day making all kinds of phone calls with no real progress. I found out that I can see a CDE and attend classes, BUT the only way insurance will cover it, is if the doctor refers me. I called the endo’s office, and was told that they can’t refer me or suggest any corrections in dosages or administer any scripts (for test strips) until he has seen me in person. Because it is a first time visit, it requires more time, and they can only reschedule to a later date, not earlier. They said they would call if there was a cancellation, but if I had any problems, I should go back to the ER. THANX…

I can’t even see about making another appointment with a different endo, because the 1st appointment can only be gotten when another doctor makes it through a referral. I called my GP, and got the impression, from the blow off, that she is not comfortable with treating diabetes since they also told me to wait to see the endo, and visit the ER if I had any real emergencies. GRRRRR!

So, for now, I’m no longer provoking high numbers. I’m also only going to continue to take half the long acting insulin. Both of those lows are still fresh in my memory, and in truth, the insulin really scares me. I did a basic test today, just to see how 1 unit of Novolog affects me. I started out at 122 with no food in my system, and after 1 hour & 15 minutes I was 79. I still don’t understand exactly how to apply that in any way. It just confirms that insulin is pretty powerful and 5 units is way too much at meals.

As far as testing goes, until I get a script for more, I can’t afford to invest in those. Especially after my unexpected medical bills and prescriptions. I’m not afraid to admit my money is carefully budgeted out, and very tight. For now I’ll have to make due.

I’ve been reading some online sites, but it just doesn’t seem relevant to me. At least not yet. It seems the general consensus here thinks I have diabetes, but since I don’t have any tangible test results, only my discharge sheet and BD starter kit, I can’t see it as real. Even if it’s real, maybe insulin isn’t the only option and I simply have a mild case (I hope!).

At least, when I finally see the endo, I will have lots of informed questions.
…speaking of questions, I heard about the ketones in some of your responses. They checked for those in the hospital, but how do I check for those at home? Is it important to check or just merely helpful?

Again, sorry about all the questions and thank you for all your responses. This is an amazing community!

38

Hi again Veronica
You can by ketostix without a script at any major pharmacy. You simply urinate on them and check the color against the colors on the bottle.
I really feel for your situation I was in the same boat when I DXD afraid of insulin because the ER overdosed me and I passed out with a BG of 19. However your high bg is way to high and I worry more about that and ketones so if you can pick up some and when your high use them. If you get moderate or large ones you need help this can really harm your organs.

With Novolog you really not want to take that without eating and a normal BG it is fast acting so it it made to correct high BG or cover food. Did they give you a long acting insulin like Lantus or NPH?

If however you are not taking insulin and you have a high BG but no ketones tell the docs you may be able for now to control this with pills, diet and exercise but I am no doctor and they really need to see you. I can not imagine going through what you are going through without care.
Be well and be loved

39

So sorry to hear your frustrations. Awful!

If your morning reading is over 100, don’t cut your basal insulin in half. The fact that your pre-meal reading was 122, shows that you need this & that you are a diabetic. Your other high readings clearly show you are a member of the D club. Know this is hard to hear & accept.

Wait two hours after meals (or insulin) to test because this when rapid acting typically hits its high point. Lowering what you take for rapid acting is probably good, but just do it by 1 unit until you get a sense of what’s going on. Try to keep the same dose for 2-3 days before lowering again.

You now know that 1 unit drops you around 43 points–congratulations on your first learning experience. One unit of rapid acting lowers me 60 points–we’re all different. I’m about your height & weight. I bet if you had waited 2 hours to test, as opposed to 1 hour 15 min, it would have lowered 60 pts. or even more.

Your GP or the hospital should give you a new Rx for more strips. You’ve got to be armed with test results to get the most from your endo visit. Damn, these people are infuriating!

Some health plans have free diabetes help from nurses. My Anthem Blue Cross/Blue Shield has 24-hour free phone assistance. You might want to check to see if yours does. You’ll be getting mainstream advice, but better than nothing.

Keep us posted!

40

Hi Veronica,

Sorry you had so much frustrations today with doctors. You might see if your GP would be comfortable phoning in a script for test strips only (say 8 a day), even if they don’t want to handle the diabetes/insulin. Test strips are relatively harmless you know, unless one ends up in your sandwich (please don’t ask how I know that can happen, lol)

I really glad tho you are taking your insulin. The ketostix are about $10 a vial of 50 and you don’t need to use them unless your sugars are above 250.

hang in there and just pay attention to what is going on. You will feel differently when your sugars are high or low (as you know by now) so pay attention to your body. You’ll do fine and we’re always around for questions/shoulders/bad jokes

Scott